Listen, Mark is Calling from the Black Hole

(Last update: September,15, 2022. 21.4K words)

Acknowledgements

The author is thankful to his extended family, first of all to his wife Vera, who was his first critic and advisor, to friends and co-workers for their support, and to Vitaliy, Maxim, and Sasha for their help in preparing this novella for publication. Special thanks to the author’s brother-in-law Glenn Hawkins for his suggestions, clarifications, and “purifications” of the text.

Preface

This novella is based on the author’s personal experience. He presents what reality looks like in the eyes of a large group of hundreds of thousands of people who are living on our beautiful planet.

Please note: The author uses two-letter codes for the real names of the characters in the novella to avoid unnecessary conflicts.

Donations
If you want to support the author in his struggle with ALS buy a copy of this novella ($5) at https://www.kobo.com/ca/en/ebook/listen-mark-is-calling-from-the-black-hole

A Usual Day

The day started with beautiful sunshine, 6 am. Canada Day had come and gone. It was a usual working day. Tikhov woke up because of the pain in his left shoulder. It would have been nice to sleep two hours more, but pain is something that you cannot control just by force of will. He tried to open his eyes, but the sharp pain he was feeling didn’t allow him to do that. It was like sand in the eyes. He knew that wiping them with a wet face cloth would remove the pain in his eyes and repositioning his arm would remove the pain in his shoulder. However, he needed the nurse to do these things.

Tikhov was diagnosed with Amyotrophic Lateral Sclerosis (ALS) three years ago. In most cases it means death within 2-3 years. Tikhov was still alive. But the disease had made its evil agenda quite clear. Tikhov could not move his legs, hands or body. He could still move his head a little bit and use it to touch the micro-switch near it to call the nurses to his aid.

Tikhov turned his head to touch the call bell. It was unreachable. Usual thing. The slightest movement on the bed during sleep could move his head too far from the call bell. So, Tikhov was blind, in pain, and couldn’t call for help. He was in the Black Hole.

Every ALS patient during the last stage of the disease lives in his own Black Hole. They can see, hear, and accept information, but they cannot send signals to the outside world. Altogether on Earth there are a few hundred thousand strange human-like objects lying helpless on their beds in countries large and small, rich and poor. In comparison with other deadly diseases it is not a big number. From the point of view of saving the maximum number of people’s lives with minimum money spent, ALS is generally put at the end of the priority list of Health Care System issues in any country. Knowing this and not having hope to get a cure, many ALS patients choose Medical Assistance in Death (MAiD). Unfortunately, because of strict rules, it is not possible to order MAiD based on conditions of the body and mind. For example, you cannot say “I want to die if I develop dementia or fall into the Black Hole” (aka a “locked-in state” in medical terms). Seriously ill persons usually complete death “orders” early in their disease, when they still have the ability to think clearly and legally express their will. Obviously, these strict rules shorten people’s lives; people want to escape a possible future (but perhaps still very remote) stage of the disease that condemns them to years of agony which the medical profession insists on calling “life” – the cruellest and most ironic of bad jokes.

Complicating this ethical scenario is that many ALS patients prefer to leave life rather than trying to extend it via well proven surgeries, just because they are not sure about their probable condition after the surgeries. Extending a person’s life might look humanistic at first glance. But it is true only if the person can communicate with the outside world – otherwise it represents the worst form of self-deception from the medical community.

 Forcing a human to continue into ALS hell as a vegetable is inhuman not only for him but for his family as well. The cowardly decision to delegate ending the life of a loved one to the family is not a good option because not every family is capable of doing that. All these contradictions could be solved just by allowing each person to decide himself what is acceptable and not acceptable living for them. So simple! And yet so hard for bureaucratic systems!

Fortunately for Tikhov, even though being at the last stage of the disease, he could still use his eyes for typing on a computer using “Eye Tracker” technology. This technology was developed for gaming, not for disabled people. However, it has proven very useful for people who’ve lost the ability to move their hands and ability to speak. This was the case for Tikhov. He could still produce some sounds, but it was moaning, not speech. The computer talked for him. In Windows settings, while configuring these assistive technologies, Tikhov had chosen the Microsoft voice named Mark. It was pretty close to Tikhov’s original voice but without his Russian accent. Mark kept him connected with the outside world. The initial computer settings were done by his sons VT and MX. As soon as Tikhov could type, he continued with the installations and settings himself.

Altogether, Tikhov used around fifty different computer applications. His work on the computer was not different from any advanced user. Still able to communicate, - Tikhov didn’t choose MAiD as many patients in his condition did. Tikhov had also tried other technologies like mouse control via head movements, but nothing worked for him in his present condition except Eye Tracker.

Tikhov could move his eyes almost the same way as a healthy person. He had big vividly dark eyes. Since his childhood, the girls and women had always liked his eyes. Second was his strong voice. He liked to sing many kinds of songs while accompanying himself on the guitar. His repertoire was wide - from Russian romances to Irish pub song. Without his voice he lost 50% of his attractiveness. Mark, of course, could not replace his pleasant voice. He’d just noticed, however that ALS had already started going after his eyeball muscles. His right eye was half closed and he could not direct both eyes to the tip of his nose at the same time - a minor loss of functionality. It could be much worse. He was told that another ALS patient in the same Facility had completely lost the use of his eyes and could only look in one direction, in front of him.

If a person loses his voice, he is automatically categorized as being crazy. The normal way of thinking is: if your head is OK, why don’t you speak normally? People start to talk to him as though he is a three-year old child. If he is moaning and trying to express a simple “yes” or “no”, they pat him on the shoulder and say “It’s OK. It’s OK. Everything is fine. Don’t worry! “ Even the nurses behaved the same way at Tikhov’s Facility. It took several weeks for Tikhov to prove to them that his head was absolutely OK. At least, for now.

Unfortunately, every morning Tikhov woke up with pain in his eyes and could not type SOS signals. It was necessary to move his eyes and to open and close them many, many times, in spite of the pain. Then the tears appeared and cleansed his eyes. He recollected how one day the nurse saw the tears dripping to his cheeks and exclaimed “You are crying! Why?” and did nothing. A half hour passed, and he was able to type. “Reposition me. Turn to face window. Call bell unreachable” appeared on the screen. It was a difficult task because the letters appeared scattered in his eyes, he would type the wrong letters, correct the words and type again. He knew that even one typo could ruin his rescue. A newly hired nurse could come and hear Mark’s scream from the computer and say “I don’t know what you are asking for” and leave. It had happened many times before, even when Tikhov was able to press the call bell. The nurses wouldn’t ask a single question and wouldn’t use the letterboard (sheet of paper with alphabet) for communication. They would say their favorite phrase, turn off the alarm signal and disappear, leaving Tikhov with his problems and in pain.

As soon as the SOS phrase was ready, Tikhov started to point his eyes at the “Speak” button. Very loudly, Mark’s voice announced Tikhov’s SOS to the ward. Nothing happened. Tikhov could see nurses walking by. They definitely heard Mark’s voice, but completely ignored it. They had other assignments with other patients and hurried to help them. Mark’s problem was not their problem.

Tikhov intentionally did not type the word “pain” in his SOS messages. If he were to type pain, the first question would be “Do you need pain medication? Tylenol?” Such a great invention! Instead of solving the source of pain, the nurses killed sensitivity to it, and nothing more needed to be done.

One day, Tikhov said that his nose was clogged, and immediately got the reply “I can give you medication for that”, instead of cleaning his nose! Tikhov’s philosophy, however, was the opposite. First, remove the source of pain - in his case, it meant repositioning - and only in extreme cases take the painkillers. Several times when he was in the Intensive Care Unit (ICU) of City General Hospital (CGH), he agreed to take painkillers because the nurses refused to try to understand him. In fact, in most cases, for their convenience they pretended not to understand Tikhov. They asked to repeat the request many times and made a confused face. They played a game. Obviously, it was easier and more pleasant than moving, turning him and trying to find the correct position. Here, at the Facility the level of pretending was much lower. The nurses at the Facility, as a rule, didn’t play games, they just ignored the attempts to pass information. It was better for Tikhov because he didn’t waste his energy for nothing.

The Facility was a almost seventy years old. Its life had not been as idyllic as the sugary slogan “Nursing is a job of the heart” suggested on the T-shirts worn by the facilities nurses. Many good and bad things happened here, as in all hospitals. A caregiver’s life was consumed with maintaining the life of their patients on the one hand and resisting angry demands from relatives of seriously ill residents on the other. The Facility had survived complaints to the College of Physicians and Surgeons, and even lawsuits.

Another half hour passed. Nothing changed. 7am. Beautiful sunshine continued outside the window. Now it was silent time. The nurses completed their reports. The reports were their Holy Grail. They took place three times a day. For one hour and a half, the nurses assigned to patients were inaccessible. Only some untrained nurse could come and do very basic things. Then she said “We’re doing reports now. Wait for your nurse” So, Tikhov waited for another hour.

8am. Was anybody coming to attend to Mark’s screams? No. But it was time for medication distribution! Scheduled events were always the saviours for Tikhov. In 15 minutes, a nurse appeared. It was EN - a big misfortune. “I am busy now. Wait” If the alarm would ring, she simply turned it off and disappeared. Pain in his shoulder was still tolerable. Yes, Tikhov could wait for now. When the pain peaked Tikhov listened to audio books written by Solzhenitsyn and Varlam Shalamov about Stalin’s concentration camps. Then his pain looked to him miserable in comparison with the sufferings of millions of inmates in the Gulag.

Night Shifts

 At night the Facility became a different planet. The patients were given painkillers and pills for sleep. It was quiet all night. The coordinator often scheduled pregnant Licensed Practical Nurses (LPN) for night shifts to do nothing. They sat at the table, slowly walked, drank water from big bottles. Sometimes they came to Tikhov, turned the call bell sound off and slowly walked away in complete silence. Other LPNs, if they came to him, refused to do even simple things to reduce the pain for Tikhov, such as pulling the sling a little on one side, raising his feet, moving a hand, raising his head, etc. They would say that it would be done by an assigned nurse after her break, then just turned the call bell sound off and disappeared. Tikhov sometimes waited for up to three hours for help. In rare cases, after several alarms, LPNs came and started to pretend to do something. They shouted at Tikhov, rudely pushed the pillows, demonstrating their irritation. It was true abuse of a disabled non-speaking person. But they forgot about one thing - Tikhov could type and even speak via computer. As soon as Mark asked for their names, their behavior changed dramatically. They realised that this miserable person could file a complaint on them. New words like “honey and “sweetie” appeared in their lexicon. They stopped shoving pillows and became lovely and kind persons.

One night Tikhov started to experience shortness of breath. He needed chest suction to clear the lungs. He pressed the call bell one time to call the nurse. A white light on the ceiling accompanied the sound. When after a few minutes the nurse didn't show up, Tikhov pressed the call bell three times to initiate a blinking red signal. Soon the blue light started flashing as well, indicating a breathing problem. Thus, in a short time a whole discotheque was flashing on the ceiling, giving the hope for prompt help. A few minutes later an LPN named IM showed up. What she did was unpredictable. She said "Wait!", then cancelled all three alarms, didn't ask a single question and walked away!

Tikhov pressed the signal again. After a few minutes the RN named NA showed up. Tikhov had on the screen "Chest suction!", Mark confirmed the request. But NM ignored both the text and the voice and started to flush the PEG tube inserted into his abdomen. Tikhov started to feel needles pricking his body, the indication of oxygen starvation. Finally, chest suction took place. In the morning Tikhov sent email to the Coordinator with the question “What is the required timing for reacting to breathing problems at the Facility?” In a few days he got a reply with an encouraging “I talked and instructed” from the Coordinator.

But the real fun started for Tikhov when RNs and LPNs worked at night shift saw Tikhov for the first time. Their supervisor and the Coordinator didn’t care about teaching the nurses how to deal with such a seriously ill person as Tikhov, who was new for them. One night he woke up because of pain in his right buttock. He had been lying on his right side, and after two hours pain was a normal occurrence. He pressed the call bell and soon some nurse came to him. He saw her first time. Mark asked her to pull the sheet on the right to reduce the pain. But instead the nurse did something odd. “Who is my nurse tonight?” asked Mark. ”Me”, was the answer. In such situations Tikhov preferred not to ask to reposition him and tried to sleep with the pain as long as he could. Repositioning could take up to three hours but only, of course, if the RN had the desire to continue. Usually it was not the case. Tikhov longed only for one thing, to be able to type on the computer. But even this was not realistic. Annoyed by such a demanding person, RNs usually just turned the call bell sound off to restore the quietness of their planet and left.

When pain became intolerable Tikhov called his wife using Skype. It was his very last resort, and Tikhov felt very guilty when he called in the middle of the night. His wife was not a healthy person. She had several illnesses. Interruption of her sleep was a crime. But what to do?

Sadists

All facilities where disabled people cannot speak for themselves create a good environment for sadists to appear. It is the unwritten law. Canada, Russia – it doesn’t matter where the facility is located. Tikhov had so far encountered two sadists at the Facility. For such a big facility it was normal, approximately one sadist per one hundred nurses, or one percent, was his empirical assessment. EN was one of the two at the Facility. One day she was upset when Tikhov insisted on having a shower on his scheduled day. “We have a shortage of staff”, she shouted. But when Tikhov asked for contact with a supervisor, she agreed. In the shower room, she poured ice cold water followed by extremely hot water on the body of Tikhov, saying “This is what it is! Our shower” Fortunately, Tikhov didn’t have a heart attack. Moreover, even with this torturous shower, he enjoyed it because he hadn’t had one for a month. It was not masochism, Tikhov had practiced “Ivanov’s System” for the last twenty five years, which includes regularly pouring a bucket of ice cold water on the head and body. EN, of course, didn’t know about that, and displayed visible enjoyment of her power.

Oh, the joys of taking a shower! It could be so pleasant, even in Tikhov’s usual crooked position! What a nice feeling when the hot small jets bang on your skin! When the water runs down from head to legs heating the skin on its way - another pleasure. In his previous life Tikhov enjoyed these pleasures three times a day, in the morning, evening, and at the swimming pool. These days, every time Tikhov was granted a shower, Mark asked the nurses to give him 3-minutes of just running water after washing. And every time they forgot about his request on the twenty-meter trip from bed to the shower room. The shower was thus always quick, time efficient, and usually left Tikhov with some soap between fingers.

The second sadist was DH - a truly rude person. Whatever she did was accompanied by pain. In the middle of the night her job was as refreshing as a blow to the elbow from a sharp object. One day, she was upset when Tikhov insisted on turning his feet outwards to avoid pain on the sides of his feet. To relieve her irritation, she started to crush Tikhov’s toes. Fortunately, his toes didn’t break. Another day she was outraged when Tikhov insisted on setting his head straight on the pillow. She took his head and turned it many times from side to side very fast with maximum amplitude. Obviously, she could solve his problem by this method only if the neck broke and Mark would stop annoying her with his constant demands. Finally, she got tired and let the head land on the pillow in a natural straight position. It was rather an unusual solution! Most importantly, Tikhov’s neck had survived DH’s administrations again.

However, DH committed her penultimate sadistic act two months ago. Tikhov had pain while urinating and asked the nurses to remove his catheter and they did. Obviously, this created an additional job for the nurses as they had to place a urinal into the bed. The nurses were unhappy with this extra task. At night DH took action - she moved Tikhov’s computer away and re-inserted the catheter. Tikhov had intolerable pain and showed it in his face. He couldn’t make sounds because of the pain and Mark was banned. DH didn’t pay attention to him and continued the procedure. Her face showed the enjoyment of her power. As it was found later, she drilled a hole in the urethra in the wrong passage. Blood started to flow and emergency was called. Tikhov was moved to CGH, where for a whole week they tried to stop the bleeding. DH was not fired and an investigation was not completed, as nothing serious had happened in the eyes of the Facility. DH thus continued to come and treat Tikhov in her rude and painful ways.

Sometimes, the Facility nurses exhibited behaviours that were neither normal nor sadistic, but somewhere in between. One day, Tikhov heard how the nurses mocked a defenceless person when he tried to explain something by his moaning. The nurses laughed and were very happy with their voice exercises as they attempted to imitate their patient’s sound.

Tikhov also occasionally observed different operational modes exhibited by the same nurse. When NM first started to care for Tikhov she was quite sadistic. Like EN she enjoyed making declarations about why she would not be transferring him to a chair, not brushing his teeth, etc. She used only one universal statement for not doing different things, namely “It is not safe”. Then this unknown thing happened and she became a normal person for several weeks – careful, considerate, and responsive to Tikhov’s needs. Then, inexplicably, she went back to her sadistic mode. Tikhov could never understand what the reason was for such changes.

This week NM had remained in sadistic mode all week. Yesterday she changed the Yankauer suction tip (the end piece of the suction tub) installed by Tikhov’s Respiratory Therapist (RT) for a bigger one, which crushed Tikhov’s teeth. Because it was hard to insert this bigger piece into Tikhov’s mouth, she changed the big Yankauer suction tip for a small one and moved it into his throat in spite of Mark’s screaming protests. Her face showed an enjoyment of her power when she saw Tikhov’s weak attempts to avoid his torture. She explained to Tikhov all the advantages of her decision and didn’t listen to Mark’s objections. Then she suddenly changed her mind, restored the original small Yankauer suction tip and behaved very nicely while transferring Tikhov back to his bed and positioning him. Unexplainable!

Another inexplicable episode: One morning Tikhov talked with NM about ALS. Her father-in-law had died because of ALS, so she was familiar with this disease. They also discussed various questions concerning life and death. Before leaving, NM said “You are a fighter. We, the nurses will help you on your path of this terrible disease.” Next morning NM was Tikhov’s nurse again. He asked her to reposition him. She didn’t react to this request and walked away. When she returned in an hour, Mark repeated the request. The reaction was the same, i.e. silence. Tikhov was overtired because of lying in the same position. He started to experience muscle cramps and shortage of breath. He felt very badly. His quasi-stable balance was disrupted. RT was called. The parameters of the ventilator were changed to take Tikhov out of his miserable condition. Returning to balance took a few hours.

Another type of behavior often looked sadistic, but was really just simple incompetence because the nurse didn’t know what she was doing. One weekend morning, Tikhov needed suctioning of fluid from his lungs. He felt gurgling inside, near the end of the cannula. A nurse named XL came when the alarm signal from the ventilator started ringing. She understood English very poorly. She opened the plug on the cannula, inserted a suction tube, realized that suctioning didn’t work, and slowly turned on the suctioning machine, starting to suction. Slowly. Very, very slowly. Tikhov typed “Faster! Suffocating!” Mark dutifully reproduced the phrase out loud. XL looked at the computer, obviously not understanding what was requested. The ventilator started to scream its disconnection alarm. XL continued to move the suctioning tube inside Tikhov’s chest. Then she slowly moved the tube out and forgot to close the plug. All the air from the ventilator escaped, not going inside Tikhov’s lungs. The alarm continued to scream. Mark screamed. In his head, Tikhov screamed loudest of all. But XL didn’t pay any attention to these sounds and did some other job, while Tikhov continued to suffocate. Tikhov started to feel as though needles were piercing his arms and body. The “Speak” button seemed to jump - he was unable to focus his eyes on it. Despair gripped Tikhov, the time to be suffocated had come. XL asked “Do you want more suctioning?” Tikhov looked at the computer as through a fog, wishing he could summon the brain function to push keys by will alone. After not receiving an answer XL calmly asked “Or do you need mouth suction?” Mark kept silent. Tikhov was all in sweat. XL was going to leave. But the disconnection alarm continued to scream. It was necessary to do something. Tikhov could see XL thinking… looking at Tikhov… YES! She’d noticed the open plug! She closed the plug. The ventilator stopped screaming, and she left totally satisfied by her work.

 It took one hour for Tikhov to calm down. Life, evidently, was to continue.

Less dramatic cases also happened with DH. One night she started new procedures which included raising Tikhov in a sling in order to reposition him. She thought it was a more efficient method than turning him on the bed. During these procedures, Tikhov’s head was not resting on the sling, and, unsupported, fell backward until it could fall no more. The pain was so strong that it seemed his neck would be broken at any second. Moaning didn’t help. DH silently continued. After a few such repositionings, Mark explained that the head must be supported during these new procedures. This helped for the next few repositionings but then the nightmarish range of motion exercises for his neck would re-appear from time-to-time, unpredictably. He was waiting when his neck would be successfully pushed past the critical point and it would be broken. DH just didn’t understand the serious results of her actions.

 One other night, when DH turned Tikhov, his head ended up on its side and he was lying on his ear. The ear started to hurt, and Tikhov started to moan. DH continued her work and did many things but none were related to the pain. Of course, lying on his side Tikhov could not type. But DH was waiting, just not understanding the situation. After a while, not receiving instructions, she left. One hour of moaning. Suddenly Tikhov felt head being turned, and the pain disappeared. Hurrah! What a beautiful life! At this moment Tikhov loved DH. Mark happily screamed “Thanks!”

Daycare Sadist

Tikhov recollected the very first sadist in his life, whom he encountered in his childhood in Russia. Tikhov had terrible complications after pneumonia when he was a baby. Only surgery on the left lung saved him. Recovery was very long, and without his mother’s compassionate care, day and night, he wouldn’t have survived. The illness had exhausted his nervous system and made fragile his health after running halfway to death and then back. Tikhov went to a special daycare after reaching four years old. Better food and better care was supposedly to be provided at this daycare, and the food really was good. But the care…

One blond nurse was nice, kind, patient, and gentle. Tikhov remembered many details about his nurses, even the color of their hair. Another tall, slender nurse with dark hair was terrible. The kids were afraid of her. She shouted at them, and rudely pushed spoons into their mouths during meals if they didn’t want to eat. The atmosphere was heavy and nervous when she was on shift. But the worst things happened during “quiet hour.” During this time the kids were supposed to be sleeping. But it was not possible for many of them including Tikhov. As soon as the nurse left the room, they started to whisper to each other. This behaviour outraged the dark-haired nurse. At some point she rudely took a boy out of his bed, stripped him out of his clothes and forced him to stand naked in front of the beds, so the other kids could see him. Usually it was the same boy. Tikhov even remembered his last name, Bobkov. This boy immediately started to cry and to scream in terror. He had a weak nervous system, and in his five years could hardly speak. It was a big barrier for him to make friends at the daycare. So, the nurse gave a lesson to the other kids about what could happen to them if they wouldn’t sleep during “quiet hour” and give her free time. The torture usually continued for 15-20 minutes. Then Bobkov was allowed to put on his trunks and go to bed. If the humiliated boy couldn’t stop his sobbing and crying, he was taken out of his bed again and his punishment was continued. This practice continued for a few months until many parents realized that the horror stories were not the creations of their kid’s brains but were happening in real life. Then the investigation started.

 Tikhov remembered how the sadist nurse told him not to tell about Bobkov, that he just slept and had seen nothing. He also remembered how he was assured by a group of adult women that the dark-haired nurse would never approach him as they urged him to tell them what he’d seen. He believed them and described in detail the torture of the poor boys. It was his revenge for Bobkov and others. And she really did disappear from his life forever.

Mother

Tikhov got approval from Immigration Canada to sponsor his mother and moved her to Beautiful City nine years ago. He took out a second mortgage on his condo and bought a beautiful apartment for her near beautiful beach. Here he and his mother walked to a nearby lake and the ocean and had wonderful times together. Tikhov visited his mom very often. Her life near her son, daughter-in-law, grandsons and grandchildren was full and busy.

After getting his diagnosis, Tikhov and his wife VR went to Immigration Canada and asked to terminate Tikhov’s sponsorship. It was explained to them that ALS or any other disease, and even long-term disability are not allowable reasons for sponsorship termination. Evidently in their situation only the death of Tikhov could be a reason for the ending of sponsorship. It was clear and encouraging to have such clear requirements from Immigration Canada on such an issue.

As Tikhov’s disease progressed, his wife started to care for his mother, as he became increasingly unable to do so. Now, his mother was 90 years old. She liked to watch YouTube videos with concerts from different epochs. She knew lots of Russian romances and popular songs from Soviet times. But not only were the old Russian singers in the scope of her interests. She loved some modern Russian singers as well. She was very sad when she missed the concert of one of them in Beautiful City. She didn’t feel well that day so her ticket was passed to Tikhov’s mother-in-law.

Tikhov asked his mother whether any of his blood relatives had had ALS. The answer was “Everybody died on his own legs.” So Tikhov had good genes, his ALS was sporadic. Mother continued to believe that Tikhov’s disease was temporary, that one day everything would go back to normal. Every time VR visited her, she asked whether the hands of her son had started to move again.

Tikhov and VR tried to remember when the first symptoms of ALS had started. They came to the conclusion that the first signs appeared three years before his diagnosis, when Tikhov started to feel tired after not-so-very long walks. Usually, the earlier an illness is identified, the more effective the treatment. But this is not the case for ALS. It was good that Tikhov had lived a full-blown life for three years more, not suspecting the sad surprise being prepared in his body. When watching his videos at the Facility Tikhov noticed a trembling of the camera in his hands one year before the diagnosis. But he didn’t pay attention even to such an obvious thing. Everything was explained by aging, tiredness after work, etc.

When Tikhov still visited his mom, in the morning he always bicycled to work to Accelerator Center.  Only after the tenth fall from his bicycle did he accept that something serious was going on with his body. His doctor immediately suspected ALS and sent him for tests and then to the specialists for diagnostics. Once he had received his terrible diagnosis Tikhov did a farewell visit to Russia to see his nephews, aunt, school and university friends. On the way back he visited Venice, and the beautiful Adriatic beaches in Croatia. The camera trembled in his hands, but his legs still did their job. It was a good farewell.

ALS Center

The confirmation of Tikhov’s diagnosis was determined at ALS Center. The role of its group after the diagnostics stage had always seemed rather strange to Tikhov. What to do with these patients, who will most certainly die in 2-3 years? Prepare them for infinity? Give advice on how to reduce sufferings? The Internet can accomplish both tasks. Maybe, just forget about these very-soon-to-be-dead patients and do something more useful? Tikhov found that the work of the ALS Center personnel actually existed between these two extremes. When his wife asked for advice, she got it every second time. ALS forums were indeed really useful to get some necessary answers. The ALS Center personnel didn’t have the latest up-to-date information about the latest research. Of course, they had a good excuse for that. They were not allowed by law to prescribe any new experimental treatments until they were approved by Health Canada. So, why bother? Even if the patient, feeling the imminent end of his life, wanted to try new medication at his own risk, the ALS Center didn’t help him with that. There was in Canada and USA a rather big movement with the slogan “Right to Try”, but it was something abstract and very far away from ALS Center.

After some observations, Tikhov came to the conclusion that the main job of the ALS Center personnel  was to collect statistics on the progress of the disease. It would be nice to use these statistics to give prognosis to the future of the patients. Thus, they could efficiently use the rest of their time. However, each step on the ALS path is unpredictable and, it seems, doesn’t strongly depend on previous steps. Two persons can have very similar symptoms at some point of time, but in a few months a big difference in their conditions is often noticed. Thus, statistical values are good for official reports but not for the planning of a patient’s life.

 Memorable Travels

The drilled hole in the wrong passage of Tikhov’s urethra constantly opened up new possibilities for pain. To avoid new trauma a special catheter was inserted, which could only be replaced at CGH, not at the Facility. One day Tikhov started to feel pain while peeing. His urine bypassed the catheter and sprayed onto his legs. It happened randomly, unpredictably, at least two times a day. Tikhov complained, but the nurses ignored these complaints for two weeks until the catheter was completely blocked.

Once the blockage was understood by the Facility staff, in the late evening Tikhov was sent to CGH Emergency, escorted by YM. To this point, Tikhov had known him only as the man who used to turn his call bell signal off and say “We are busy, we are doing reports now!” Before leaving the Facility, he had recorded Mark’s report on the history of this particular pain on his mobile phone. Later he played this recording to the responding paramedics, nurses and a doctor at CGH. Tikhov had the gut feeling that something bad would happen during his journey because of YM.

YM didn’t allow Tikhov to take his own pillow, saying that everything is lost at CGH. He didn’t care to ask Tikhov’s opinion on that subject. The paramedics put a small pillow under Tikhov’s neck, so that his head inclined very, very far back. Saliva started to flow into his lungs, and Tikhov began to moan. He attempted to realize two goals by moaning: first, he used moaning to move saliva to his mouth, away from his lungs. Second, he wanted to attract attention of YM and paramedics. He partially succeeded with the first task, and had no luck with the second. Only once arrived at CGH did YM put support under Tikhov’s head to stop his moaning. YM didn’t want to be regarded as a nurse who doesn’t care about his patient.

After the usual registration procedure, Tikhov was moved to a room with curtains and a glass door. Both Tikhov and YM expected that changing the catheter would take no more than half an hour. The nurses informed them that the urologist was busy and it was necessary to wait. “OK. Take your time” said YM. After two hours nobody came. Tikhov’s buttocks and back started to hurt. YM was bored. He moved his head between the curtains to look into the next room, from where strange sounds were heard. The patient there swore and shouted, asking for help. YM mocked his call “Brenda, come!” and closed the curtains, very pleased with himself. After the third hour, Tikhov’s wheelchair ventilator started to produce an alarm sound, which meant a discharged battery. YM got nervous. He hadn’t taken a power cable for the ventilator! YM was worried that this might significantly prolong his presence at CGH. He went out to the corridor and asked some nurse to bring another power cable. A half hour passed. The ventilator continued to scream its alarm. The CGH nurse returned. Wrong type of cable. “This is today’s bad thing” thought Tikhov. YM sent the nurse away again and prepared a breathing bag for Tikhov. After another half hour the nurse returned with a whole ventilator. She was not in a rush, but YM was – he was supposed to be off duty some time ago. He cut off the cable ties to release the power cable from the ventilator, and connected it to the Tikhov’s ventilator. It was OK. “Thank you, you are a life saver” he said to the nurse. “Indeed!” thought Tikhov, in his head. Then YM talked with the CGH RT and said to Tikhov “I am going home, this RT will take care of you”

And then he left. He didn’t say a word to the CGH nurses that he was leaving an ALS patient at the last stage of illness, or ensure they understood that it is necessary to reposition him every two hours, that he can express his pain only by his face, etc. He just left. For the next several hours Tikhov was treated as a log with eyes. No letterboard. No yes/no questions. Even when the nurse assigned to Tikhov walked by in the corridor she didn’t look at Tikhov. His weak moaning, which was his feeble attempt to scream “Turn me! I have pain in my back and buttocks! I cannot sleep!” didn’t reach any heart, though tens of nurses, Palladin Security guards, and doctors walked by his opened door. His computer was far away. No Mark, no Skype. Tikhov was in his Black Hole. He was alone in this cold room with effective air conditioning. Time, accompanied by his pain was passing very slowly. In a couple of hours, in the middle of the night, a nurse appeared. “I will do the catheter change”, she said. What about the urologist for whom Tikhov had been waiting for the last six hours? Of course, Tikhov couldn’t ask this question. She lowered the back of the bed, and it was enough that the pain disappeared from Tikhov’s buttocks and back! Tikhov had a short break from the pain. Unfortunately, his saviour was an inexperienced nurse. She took out the old catheter, which was completely clogged, and inserted and took out, two times in a row, the new catheter using the trial and error method. No medical equipment like a scanner was used. Blood began pouring out of Tikhov out. Much pain. After she finished the procedure she declared “Now you can go home!” In 15 minutes, the assigned nurse told Tikhov that an ambulance was booked, but it was necessary to wait. When it appeared, the waiting time had been 4 hours. During this time, Tikhov experienced not only intense pain while urinating, but the old pain in his buttocks and back came back because the back of the bed was raised once more to its original high position. However, despite all this drama, Tikhov survived once more. Exhausted, he returned to the Facility. After such a twelve hour journey, life at the Facility seemed rather good.

Another memorable journey was to the University of British Columbia Hospital to do an ultrasound scan of the bladder. Tikhov was escorted by NJ, whom he had never seen before. Things were not too bad (she even used the letterboard!) until the ventilator failed. She could not find what was wrong for a few minutes. Tikhov began to suffocate, with sweat appearing on the face and body. Then NJ unpacked the breathing bag and put its mask on Tikhov’s face instead of connecting it to the cannula on chest. Another suffocating minute passed with “bagging” without pumping the air into Tikhov’s lungs.

Suddenly, the ventilator stopped beeping. It had cured itself. What a pleasant “suddenly”!

Tikhov never filed complaints on sadists or anybody else. The same people would behave ideally in other circumstances. If he would start asking to remove some nurses from the list of his caregivers in accordance with their bad behavior, only a few could stay in the list. He established communication with everybody and used positive sides of the person to work for his benefit. For example, if some nurse apologised for being late, Tikhov asked her to be on time next time. It helped. DH started to wash Tikhov in the shower, in spite of all bureaucratic impediments, and Tikhov was very thankful for that. She was the best at cleaning the ventilator tube and with the repositioning schedule. She was the only nurse who knew that if a leg was trembling, it was necessary to press the knee hard and the trembling disappeared. When one day she left Tikhov with an inaccessible call bell and computer, he told her afterwards that it is dangerous and not safe. And she never repeated such an action. One day DH brought a beautiful bouquet of flowers from the Facility garden to Tikhov’s room. She was indeed a lady of extremes! EN was good with positioning of body parts but was merciless about keeping Tikhov in bed for hours without repositioning and cleaning after bowel movements (BM). Her family evidently had a nursing tradition; even her husband was a nurse. Likely because of this tradition, she had decided that she had the right to be a boss and point out to everybody what he or she had to do. And if something did not go in accordance with her scenario (her main scenario was “shortage of staff”), she became a sadist.

A young nurse named RJ, who had just started her career as a Registered Nurse (RN) was assigned to Tikhov a long time ago. Tikhov called her “Sleepy Nurse” because she was very slow and forgetful. Tikhov observed her evolution with interest. Initially, she was a rather open person to Tikhov. They could talk about different things and even laugh together. Then she started to accept the model of behavior exhibited by DH as the most economical. She stopped talking and did everything in complete silence, like DH. If Tikhov requested something new, she did it, without commentary. If Tikhov asked to adjust something, she ignored the request without saying a word. Silently she would leave the room in the middle of a positioning procedure, leaving Tikhov with a crooked neck, pain, a screaming computer and an unreachable call bell. DH had developed her method over many years. She had international experience. Why not use very her effective methods to save your energy? For Sleepy Nurse, it was important. However, in one aspect she was better than DH, namely at her skill in positioning the table with the computer.

Doctors

Tikhov’ Facility Physician was of a classical type. It means that first of all he suppressed pain caused by an illness. Inventions and mass production of very effective pain killers are one of the most visible results of the progress of modern medicine. Of course they come with many side effects but at the same time they make life easier and happier both for patients and the doctors. The treatment of illness should be the second part of medicine’s success story. But it is very long-term process, and it requires lots of effort for even the smallest of progressive steps. It is better to pass this second part to somebody else, i.e. to the specialist. Then the physician can avoid torturous analysis of the reasons for illness and save his energy for prescribing painkillers to larger number of patients.

The Physician never touched Tikhov’s body. He based his conclusions about the progress of Tikhov’s illness on nurse reports and what Mark told him. One day Tikhov requested the list of medications which were being given to him and found that he didn’t need half of them. After his request they were removed from his list.

One specialist referred onto Tikhov’s case by the Facility Physician was Tikhov’s Urologist. Tikhov’s problem was the stones in his bladder, usually dealt with by inserting a cystoscope into Tikhov’s urethra, finding the stones, and then inserting another instrument to smash them with laser bursts. The catheter inserted into bladder is a foreign object in a patient’s body. It initiates the production of stones. Tikhov had never had this problem before. As a consequence of stones the urine bypassed the catheter few times a day causing strong pain, and the catheter became blocked every two weeks. After each blockage, a new catheter had to be inserted at CGH.

The first appointment to the Urologist was set one and a half months after referral. At that appointment, the cystoscopy of Tikhov’ bladder was set in three weeks. Then, after identifying that the stones truly existed and needed to be crushed, the crushing and the cleaning of the bladder was set in a month. Why weren’t the cystoscopy and stone removal procedures done at the same appointment? It was obvious what was causing the catheter blockage and Tikhov’s pain. No way, the Doctor’s job is evaluated by the number of visits they endure, and the number of procedures they attempt, not by the number of recovered patients. The patients are expected to fit into this System structure in spite of their pain. They can always take painkillers while waiting!

The Usual Day Continues

Soon another nurse, AM, came to Tikhov to give him medication. She was a kind and patient person, but she never sided with Tikhov. If EN ordered her to leave Tikhov in the middle of positioning him, AM didn’t argue and would leave Tikhov in pain. Now, she injected medication via the PEG tube. Even if Tikhov repeated his SOS message and she read it on the screen, she always did her routine first. All nurses did it this way. The pain didn’t get priority. If they had another item in their routine, they always did it before addressing the patient’s pain. The nurses were not trained properly on that subject and so they were not empathetic enough for prioritizing pain nor were they taught to have compassion.

The last item was his painful shoulder and repositioning. Hurrah! After a wait of 3 hours Tikhov could finally receive some help. Repositioning was an involved procedure and always required time. First, the head of the bed was moved down. Here a critical point existed. As soon as the head became lower than the breathing tube, condensate water started to flow into Tikhov’s lungs. It happened every time, even after shaking the tube to remove water. AM looked at Tikhov’s convulsive movements while he struggled with the irritation caused by the water and did nothing. It was almost amusing. Whenever Tikhov told a nurse that he was a physicist, all the nurses told him how much they had hated physics at school. So, it seemed that the law of gravity didn’t apply to them, for they didn’t see, much less understand the cause of Tikhov’s dance. Instead, AM proceeded.

The second item of the procedure was to use the lift. When the lift was moved to the bed, the computer table was moved away. Tikhov thus lost Mark and could only hope that AM remembered, not all, but at least most of the major tasks. His hopes were always dashed. She and the other nurses always forgot to turn his head to look at the centre of his screen, thus Tikhov would not be able to type. After turning, his head was always placed to the side, his eyes looking to the left or the right. The nurses sternly asked “Please type what you want!” Common sense is something that cannot be taught. How could Tikhov type if his head was turned to one side, instead of straight ahead looking at the computer?

It took another fifteen minutes for AM to realize what was wrong. During this time Tikhov was moaning, pointed his eyes to the screen, displaying that he was unable to type. AM didn’t use the letterboard, didn’t ask yes/no questions and instead relied on her assumptions. Finally “Aa! You need to turn your head” resolved the problem. Now, Tikhov could type instructions of what to do with his legs, hands, fingers, etc.

Every day the picture was the same. Writing long instructions and pinning them to the wall above the bed wouldn’t solve the problem. The nurses would read these instructions one or two times and never again. After reading they relied on their memory, which at any time kept no more than 10% of the required information. It was proven to Tikhov many times. Even if a message was written on the screen and repeated a few times out loud, the nurses caught only one or two sentences forgetting the following sentences. So, the present life of Tikhov included work as a parrot.

AM patiently followed the instructions from Tikhov. When 70% was done EN appeared at the door. “We need to go”, she said, and both walked away.

In the case of ALS, there is no such notion as “half service” If the patient is left with only one exposed area of pain, it means pain for him after half an hour. It doesn’t make a difference between partial and none of the pain areas being secured. Obviously, the nurses didn’t want to take this into account. They always said “I need to go to another resident. Wait.” and they never came back because they needed to care for the next resident. Then they had a coffee break and perhaps do reports afterwards.

Scream into the Void

Maybe Tikhov asked too much from the nurses? No. There was one nurse named ZJ who was ideal. She never left Tikhov until Mark said “Thank you very much!” She remembered everything and did all the items very fast. If she had doubts, she asked yes/no questions. She proved that taking care of ALS patients is possible. Besides, she talked with Tikhov on different subjects, about travels, exotic foods, movies, shows, etc. She had a great sense of humor. She was such a good and interesting person! Another almost ideal nurse was IB. She did almost everything as well as ZJ, with some exceptions. Tikhov was always in an excellent mood when these nurses were assigned to him. But as it often happened with the best people, ZJ was moved to another ward. the Facility had a terrible rotation system, which constantly replaced good workers with bad ones. Tikhov could teach 4-5 nurses how to care for him but not 20! Rotation routines with large a number of nurses was a system guaranteed to terrorize patients. The management could not understand that every new nurse brought a new package of stresses for the patient. And if some nurse assigned to Tikhov was reassigned somewhere else for more than two weeks she forgot 90% of the necessary information and behaved like a new hire when re-assigned back to Tikhov. Living in such an unstable world was one of the main disadvantages in comparison with the Choice of Support for Independent Living (CSIL) program, which allowed ALS patients and other seriously ill people to live at home. But for Tikhov this program, with its small number of available man-hours, was not an option.

One day Tikhov sent e-mail to the main manager of the Facility named OR asking her to find a way to not move nurses between wards. His reasons included the fact that ventilator patients in his ward were heavily and negatively affected by the resulting shortage of staff. However, changing an established, bad, and unfair system is much harder than plugging somebody’s mouth. The reaction of the manager was predictable. Tikhov was assured that he would get the highest priority for service under any circumstances. And it really happened. For half a day.

The organization of the health care system resembles that used in military units. Care Aid personnel are analogous to soldiers, with LPNs and RNs standing in for sergeants and lieutenants. Then there are the elite, highly trained military units known as “special forces” The most difficult tasks are given to them.

The most difficult patients to care for are ALS patients in the later stage of the disease and other patients with similar conditions. But there are no elite units in the health care system to handle these most difficult cases! If it existed, a nurse in such a unit could be called a Special Registered Nurse (SRN). The main attribute of such highly qualified SRNs must be their attention to detail. Before performing any actions and during care they should look carefully at all parts of the patient’s body: legs, hands, fingers, toes, head, neck, etc. They should also be able to predict the consequences of any of their actions. Just as it is so that not everybody can serve in elite military units, not every nurse can become an SRN. And, of course, the salary for SRNs must be much higher than for regular RNs. Here, at the Facility only ZJ had the necessary abilities and skills to be SRN, out of the hundred or so that worked there.

Better care of an ALS patient’s body, of course, prolongs its life. Longer life sounds like a basic, inalienable right for all human beings. But nowadays different interpretations of such a term often live side by side. One interpretation might say that the main goal of a just society is to provide the environment in which any individual may arrange a happy life for himself using his own hands and brain. Another interpretation might extend the responsibility of society to prolong the life of fully disabled people (such as quadriplegics) by any available method. This sounds like too much to handle for any country, even countries that have highly developed medical systems. Partial support, like different kinds of insurance, yes. But to take full responsibility for each hardly moving body, no, forget about it. There is no money in the budget for such an onerous, wide-ranging task. Better to let them die “naturally” under presently available, already pretty good conditions.

Any efforts to move the rights of disabled people to the constitutional level are certain to fail. The situation is very different for the movements against, for example racism and homophobism, because their fight is concentrated on achieving the proper Environment as per the first interpretation of life. Also, these other minorities’ lives are long enough to build powerful organisations that can affect politics and the culture through social media and other awareness campaign techniques. This is not the case for disabled people. The only thing that seems attainable for them is to raise the level of care support just a little bit.

It certainly looks like having SRNs available 24 hours a day for all “not moving, but alive” patients is a “little bit” attainable for Canada. At present around 3000 ALS patients live in Canada. Not all of them are quadriplegic. So, a couple of thousand SRNs could provide the necessary high-level support for them for all of Canada.

Of course, this is the scream to the void.

Between Pains

At least, now one pain was gone and a new one had yet to emerge. Tikhov had a blissful half hour without pain. He started to read and reply to new e-mails. His friends LN, NT, and his sister-in-law LS sent him photos of home-made dishes. Tikhov asked for these because he was fed a cold organic mixture using a machine via the PEG tube. Cold food was barely tolerated by his stomach because he was accustomed to homemade hot dishes by his wife. Tikhov had a great invention to deal with his stomach problems. While the food (he called it “wood chips”) was being injected, he looked at a slideshow with familiar dishes. For a change he also watched Mark Wiens’s “Travel for Food” videos with “stunning, ridiculous, life-changing, insane, explosive, transcendent, new level, sensational, extra dimension, off the chain” dishes. It created positive reflexes and helped to process the “wood chips”.

Funny videos from his friend LA, messages from university and high school friends, as well as colleagues from the solar physics community (Tikhov was a solar physicist, and a member of the International Astronomical and American Geophysical Unions), from Accelerator Center co-workers, Beautiful City friends and from family made his life complete. Time passed by very quickly.

Most people think that terminal disease dramatically changes the world view of the ill person. Tikhov noticed that this rule wasn’t applicable to him. Before ALS he was a rather healthy person, with every minute of his life focused on the solution to some problem, planning his next big project, etc. He allowed no distracting thoughts about health. Now he had learned to appreciate the painless and more comfortable periods of his present life. During these periods his attitude towards life was as before. Other times he was consumed with the need to find a way to reduce the pain, thus there was no space in his head for philosophy. It was even possible to introduce a certain percentage of the “old life view” in his present state based on timing. As soon as this percentage was high, there was no reason for depression or to apply for Medical Assistance in Death. He didn’t know what the critical percentage for him was. His reading about the Soviet Gulag suggested that even with a percentage close to zero the inmates of concentration camps wanted to continue their life. The critical value, the exact “tipping point” for each person is always an open question.

Respiratory Therapist RC appeared in the doorway with a cough assist machine. She did lung exercises with Tikhov. This was a pleasant part of his life. Tikhov had had a tracheostomy surgery a few months ago, after a severe case of pneumonia. A breathing tube was inserted into his chest and connected to a ventilator. Exercises were possible to be done after switching from the ventilator to the cough assist machine. The lungs expanded and vibrations stimulated movements of various abdominal structures. Tikhov always felt better after this. In the past Tikhov had had long discussions with RC about optimal parameters for his ventilator and humidifier temperature. They did many experiments together. Finally, they arrived at a solution. This days it was a quiet time with RC, who was a very kind and patient person. Very often, Tikhov asked her to do what the nurses had not completed. Today, the list contained: turning feet outwards, moving blanket higher and bending his arms. RC never said “No”, even though it was not her job.

Once, Tikhov was in a wheelchair. The nurse removed the foam cushion from behind his back to prepare him for transferring to the bed. Tikhov’s head fell down on to his chest. He couldn’t speak. The nurse left and RC came in with the machine. RC kindly asked a question, Tikhov couldn’t type or reply. Then it became interesting. RC commented “It seems that you are in an inconvenient position” and did nothing! She continued her work, asking questions from time to time, not receiving an answer and then left. If an RT couldn’t realize the problems of a non-speaking patient, what could Tikhov expect from the nurses?

Exercises were done and pain areas were secured. RC completed the suction of saliva and mucus for Tikhov. Suction of saliva from a patient’s mouth was done with a Yankauer suction tip. A Yankauer suction tip poses an excellent test for laziness in a care giver. It is inserted under the cheeks to get at saliva and mucous build-ups. One cheek usually requires more arm bending from the nurse. Some nurses considered such bending to be a big job. The Yankauer suction tip in their hands thus went only halfway in, which left most of the saliva under one cheek. RC did everything right; she was not lazy.

RC unpacked a small gauze and wiped Tikhov’s chin and around his mouth. The gauze absorbed saliva very badly. Instead of cleaning, it spread saliva all over the applied area, which was unpleasant. Usually a wet cloth worked much better, but nobody used it unless Mark requested them to.

At night Tikhov monitored his production of saliva very carefully. If Tikhov missed the critical moment, saliva flew down and wet the gauze under his cannula. After that the skin started to hurt under the plastic. To avoid such unpleasant situations at night, when help would come only after a few hours, Tikhov invented a method to spit saliva out of his mouth by small amounts. Then it dried out before reaching the trach dressing. Tikhov had a face cloth under the chin for protection, but it was often placed incorrectly and didn’t end up helping. Usually, during the day, the monitoring of saliva was not necessary. Now Tikhov looked at the “Speak” button and Mark’s voice said “Thank you very much!” Tikhov could finish with his e-mails and listen to music on YouTube, relax and rest.

Tikhov heard a long time ago that calm music helps sleep come faster. He found even more relaxing things on YouTube than music. The ocean waves! With their rhythmic movements and relaxing sound, Tikhov started to listen to them in the evening and at night when he would wake up for various reasons. It helped. Magic! He also made another discovery. As was already said, he loved to watch Mark Wiens’s “Travel for Food” during his meals. One evening he didn’t switch to another video and fell asleep. It appeared that Mark Wiens’s voice had the same magic as ocean waves! If sleep didn’t come fast Tikhov lazily opened his eyes and watched the video for some time. Watching the process of eating of live octopus, lava, fried ants, scorpions, grasshoppers, frogs, guinea pigs, tails, testicles, raw meat and fish, raw duck blood, chickens roasted in plastic bags, fancy and simple street cooked dishes completely expelled all thoughts from Tikhov’s brain. Watching these he went asleep pretty quickly. One time, while Mark Wiens was in South Korea, Tikhov was eagerly waiting to see when he would eat the dog. Tikhov had missed this entertainment when he had visited this country. But it didn’t happen. Maybe it was too extreme, even for a professional eater. When Tikhov woke up he restarted the video from the timestamp he remembered. Mark Wiens created hundreds of videos. It was practically an infinite source of sleep and digestion medication!

 Very often in his sleep Tikhov saw himself as a little boy, lying in a lush summer meadow on his back and looking at a drop of dew dangling at the end of a grass stem which leaned down over his forehead. His soul was clean and calm, nature was clean, the smells of the meadow were so full and rich and green! He felt very happy to look at this drop of clean water. It was like a symbol of the Earth’s purity to which he would like to return his beautiful planet from its present polluted state.

Washing

His hour-long semi-dream was interrupted by two nurses: AM and EN. It was time to be moved to a wheelchair. But first, they wiped Tikhov’s body. Usually his legs were excluded. Though the nurses called the procedure “washing”, Tikhov disagreed with such a name. The first action always was to wipe the front part of the body with a soapy cloth. Then it got interesting. Some nurses wiped the soapy body with a dry towel and put lotion on top. Yes, Canadian culture is indeed a mosaic. Tikhov wondered from which culture this method was adopted. After semi-dying from itching unrinsed, soapy skin several times, Tikhov insisted placing double rinsing into his care plan. It actually meant double wiping with a wet cloth. Ok, it helped. Now, the back…

The back of the body was very often “forgotten” because it was necessary to turn the paraplegic. In cases when the body was turned, the back was wiped with a wet cloth only once. Why the back was deemed an unimportant part of the body, Tikhov could never understand. One nurse said that legs are to be washed only once a week under the shower. It was true. Tikhov wondered, which culture influenced this decision? Who washes legs once a week when civilization has provided showers and bathtubs in every house and apartment? Nevertheless, Mark continued to ask the nurses to wash his legs every time. And in many cases, it partially worked! Obviously, the nurses washed their legs more often than once a week and found the request reasonable. However, because Tikhov’s thin legs seemed pretty heavy, the nurses washed only the front part of his legs. To get 50% was better than to get nothing.

Part of the washing ritual was turning Tikhov over to the side. Only one nurse, ZJ, took extra precautions with his head, neck and hands during the turn. Usually, the nurses considered the body of Tikhov as nothing more than a warm mannequin, and turned him by pulling and holding his shoulder while bending his leg painfully. His leg, usually ignored by the nurses, immediately got its portion of pain. Today, Tikhov didn’t care about the pain in his shoulder and leg because he knew that the worst part was to come in a moment.

Tikhov’s head slid from the pillow down to the mattress. His face was pressed to the mattress, his crooked neck started to scream from painful contortion. But today was going to be bad - even this was not the worst thing to happen. The worst thing was that his eye was pressed to the plastic exhalation valve on the ventilation tube. Tikhov felt the slow penetration of the valve into his eye. Saliva was dripping to the pillow. The brain of Tikhov was focused on only one thought “No! I don’t want to lose my eye! “. He produced a sound but the nurse who held his knee and shoulder kept saying “OK, OK, almost done” and continued to talk with the other nurse. She didn’t look at the deformed face of Tikhov. Suddenly, she released her grip a little since she was tired. Tikhov’s body moved back, the pressure on his eye became less. Also, the valve moved out of his eye a little but it was just enough to save the eye. Then, the grip increased again, the valve moved in again. These back and forth movements continued a few times but fortunately they didn’t reach a critical point where the eye could start to flow out onto the mattress. The washing procedure was done and his eye had escaped conversion into a piece of jelly. The red marks around his eye didn’t count, weren’t noticed and not inquired after.

The most dangerous type of nurse believe that they know everything and how to do things right. They do washing and other standard procedures very fast, generally with good quality. But their high qualification amounts to the qualifications of a butcher. They never look at the patient. They never ask yes/no questions. They just don’t care. They consider the patient as an object, as a big chunk of meat. During procedures they can quietly sing songs, showing their good mood. If some non-standard situation happens, they don’t think much, and, of course, don’t ask for confirmation. They know everything, and of course they know the best solution - immediately. They were born to be Brilliant! And the patients find themselves in a very particular type of very efficient hell. After implementing their excellent solution the Brilliants usually disappear very fast, very satisfied by their job and often times leaving their patients in pain and despair. Tikhov had had the misfortune to encounter such a nurse a couple of weeks ago. After sitting in a chair crooked, head far back, with a wedge under this back (why for God’s sake?!) and moaning futilely for half an hour, he was finally given the opportunity to type instructions for Mark on the computer. The reason why he fell into such state? Simple but not standard: after cleaning the chair the foam supports were not restored, and the Brilliant implemented his own genius solution.

Now to the chair! For patients who must lie in bed for extended periods, it is very important to position their lungs vertically, or nearly vertical. Fortunately, today’s transfer to the wheelchair was not cancelled, as it had been last weekend. EN and RJ were Tikhov’s nurses that day. It was a perfect duet of economic and sadistic approaches. One nurse was excited to declare “You won’t be transferred to the chair today! We have a shortage of staff! You can complain to the management if you’re not satisfied!“ Then she walked away and did nothing for Tikhov that day. Another nurse slowly did half of the job. It was a beautiful weekend. All management was inaccessible. Perhaps they were at the lakes, or perhaps at the ocean enjoying picnics with their families, or hiking in the mountains. EN knew what she was talking about. Tikhov lay in his bed and watched movies with lakes, ocean, and the mountains on YouTube.

Into the Open Air

 From his virtual travels Tikhov dived back into his memory. As a scientist, in 1993 Tikhov began to travel around the globe to attend conferences, workshops, congresses, etc. He was living in Russia (Siberia) then which had recently come under the rule of Boris Yeltsin. That year Yeltsin implemented a fundamental step towards freeing Russians by allowing them to get “foreign” passports for travel outside the country. For the first time in forever, anybody could apply for an entrance visa to any country in the world on their own, without getting government permission first. The iron curtain had finally fallen in Russia, four years after it had fallen in Berlin!

This, of course, was a huge and very welcome development for all Russians. Tikhov was in the first wave of people who started to live and think in a new and freer way. The first country he visited was Italy. The conference was in Catania, Sicily. Presentations, communication with scientists from all over the world, tours to Catania…it was marvelous! At that time there was a drama series about Sicilian mafia on Russian television. “The Octopus” documented the feats of the very courageous Captain Cattani and was very popular with Russian viewers. It was fascinating for them to observe Sicilians struggling to live in such intolerable conditions, under mafia rule. But while in Sicily, Tikhov saw normal faces not deformed by their “tortuous” lives. The Sicilian tradition for men to greet each other by touching cheeks was rather unusual, though. The only time the mafia was mentioned while he was in Sicily was when the guide in their tourist bus pointed to a remote house near the base of Mount Etna and said that it was bought by the mafia to launder money.

This trip inspired Tikhov to continue his work in his area of solar physics, and to work on making foreign contacts. He finished defending his PhD thesis, then was able to participate in scientific forums in Greece, Japan, and the USA. He enjoyed this newfound freedom. In Thessaloniki it was interesting to actually touch the history of Alexander the Great and imagine himself living at that time. At the Parthenon in Athens, he was impressed by its inclined inside columns. Such simple genius! The gardens at the Buddhist temples in Kyoto were so tidy, clean, and nicely crafted that they truly deserved to be classified as pieces of art. Lying in the clean water of the small river in the middle of the city was a welcome break from the August heat, and he dutifully fed the tame deer in Nara – a true tourist ritual. On the way to a conference in the USA Tikhov visited a former co-worker in New York who showed him lots of attractions in this magnificent city. Tragically, his photos taken from the top of the World Trade Center became historical relics in three years.

A researcher by nature, Tikhov wanted to see the States from “inside”. So, he bought Greyhound tickets and travelled by bus from New York to Denver. Spending a few days in the bus looking through the window and at the going in and out of the people, observing their behavior, listening to their conversations gave him an initial understanding of this country. Walking outside the conference venue in Boulder, Colorado he saw signs “Attention! Mountain lions!” This was a real danger, not like the fictitious bears in the streets of Siberian cities!

When the situation became catastrophic for Russian scientists at the end of the 90s he decided to immigrate. He tried many ways. On his list he had Germany, the USA, and France. But the final decision was made in favor of Canada. His sister-in-law already lived in Beautiful City, and this was the easiest way. He had arrived in 1999 and had spent twenty one years in Beautiful City. Tikhov and his wife never regretted this decision.

Canadian citizenship opened up new opportunities for scientific and touristic travels. England, France, Monaco, Germany, Czech Republic, Australia, and Brazil were added to his memorable destinations. Now, looking at them, his digital photo albums and videos returned him to those days when time passed so fast.

In Sheffield, England he saw well-built two-story brick houses, but the color of the bricks gave the impression that the houses had survived a big fire. The city still had the signs that it had been the center of the steel industry, with the filth in the air staining the brick walls. The museum he visited in Sheffield was the first and the last time that Tikhov had been on a tour with a glass of beer in hand. The British are wonderful people!

Among migrants from the central parts of Russia to Siberia at the beginning of 20^th century were the ancestors of Tikhov and his wife. Some of Tikhov’s wife’s relatives escaped from Russia after the October coup d'état in 1917, eventually immigrating to Australia. There had always been heated discussions about migration and immigration in Tikhov’s family. Tikhov considered Australia to be a world phenomenon because of how it grew from a place of exile into a well-developed, modern and civilized country. He found it interesting to identify analogies in the paths of Australia and Siberia. The Immigration Museum in Melbourne presented many such analogies. As a nation of proud immigrants, Australia keeps the immigration records very well, including some facts about Tikhov’s wife’s relatives in their digital libraries. Tikhov and his wife were at one point very close to meeting their distant, descendant relatives. As they realized later, they had walked around Sydney in the area where their ancestors had lived at some point. It was like touching the past with their shoes.

In Brazil Tikhov was astonished by the large number of local blond people. It was explained to him that they are descendants of German immigrants including many descendants of Nazis who fled Germany after the World War. He met the best taxi driver ever in Sao Paulo, who insisted on giving his change back, refusing to accept tips.

In the South of France it was interesting to walk along the seawalls. Nice yachts. The Mediterranean Sea was rather cool in July. Climbing up the hills in Cannes gave a nice view to the city. He and his wife stumbled across a Russian church on the way up. In Nice they saw the Russian church in which the Russian Tsar’s family presented at the services. In those imperial times France was closer to Russia than during the time of Bolshevism. St. Tropez was also interesting with its famous movie sights. At a Brigitte Bardot exhibition Tikhov was captivated by the magnetism of her personality, and was positive that every man and woman there felt the same. Pamplona beach reminded Tikhov of a hilarious movie from the 60s. Monaco looked so cozy and pretty, with chandeliers outside the buildings! It was hot, but he was not allowed to walk on the seawall without a shirt. The famous casino impressed with its ornate inside decor. He bought some tokens as souvenirs.

Spain was always interesting as a crossroad of civilisations, and signs of more ancient civilisation were everywhere to be found. In Madrid Tikhov and his wife started with the Don Quixote and Sancho Panza monument. They liked the nice parks, and were astonished at the number of nice-looking young prostitutes in the evening on the main tourist street. Corrida de Toros had not started yet, unfortunately – he’d always wanted to see a bullfight. An Anti-Nazi poster on the wall startled him – there were Nazis in Spain so that people needed to be reminded? Barcelona was unlike any other city thanks to Antoni Gaudi. The democratic Mar Bella beach, a penis-like building, questions about Columbus, gorgeous views of the city from the Museum of Catalonia in Montjuic all enchanted them. Valencia was a nice relaxation stop with its nice beaches, ancient tower, and lots of strange graffiti. The Alcazaba of Almeria moved them once more back into ancient times. Tikhov tried to identify the megaliths at the base of the fortification walls. It was hard to find the beach because a giant port occupied all of the shoreline. Tikhov also enjoyed the lovely beaches in the South of Spain, and windsurfing on the big waves.

The Neighbors

Tikhov observed that there were two groups of neighbors in his ward at the Facility, one quiet and the other demanding. “Quiet” meant that the patient had neither voice nor speaking computer. Tikhov was not “quiet” – he considered himself as almost speaking thanks to Mark. The unhappiest people were, of course, non-speaking. When they suffered, they couldn’t explain their reasons to the nurses. Such a thing as a fly running and biting on open parts of one’s skin can cause terrible irritation. And, as daily experience showed, moaning didn’t help.

“Demanding” meant that the patient had the ability to express their dissatisfaction, often aggressively due to the previously described cavalier attitudes among some staff. The outstanding representative of the demanding group was LC. If he needed something, he just chased the nurses in his wheelchair, screaming “Nurse!” And they finally did what he requested. Another patient, TS, who was able to press his call bell, preferred to scream “Hello!” from his bed. It was, of course, less efficient than chasing, but better than pressing the call bell. Other patients also used their voices to call the nurses. The screams were various: “Come! “, “Help!”, or even describing a full problem like “I cannot breathe!” It was interesting to Tikhov, and should be noted that the patients, even if they lost a big part of their intelligence from their illness, never used swear words.

One day, just as everybody else on our planet, LC had a birthday, and the nurses sang “Happy birthday to you” for him. LC was very happy and sang along with the nurses - “Happy birthday to me”! It was very hilarious! Specific humor was offered as well: “Today you will have extra mouth suctions!” Each birthday in the Facility represented a victory over the enemy and was celebrated with gusto.

On the patio Tikhov saw some of his neighbors in electric wheelchairs. Nobody took sunbaths. TS even covered his head with a blanket. One of the biggest surprises for Tikhov after immigrating to Canada was finding that people in offices chose to close blinds and turn on electric lights instead of working in natural daylight. Here he saw just an extension of this practice.

Some of his neighbors sat in the common area at the big table in front of the big TV for many hours each day, sometimes even for the whole day. They belonged to the quiet group. Even when the nurse’s meeting took place at the big table, they stayed with the TV turned off. They were treated like furniture; nobody payed attention to their presence. One patient had a face like a self-portrait by Francis Bacon Tikhov saw on his web site. He always was in bare feet, which exposed big red spots. Tikhov could imagine how painful these sores were. TV shows and watching other people were nice distractions and helped him to temporarily forget his pain. Another person, an old lady, had an unusual habit. Every now and then she started screaming one word, “Amoy”, which meant “daughter”, over and over again. Obviously, something was wrong during these periods. Because it happened so often, the normal practice was not to pay attention to this sound. When she was quiet, she moved folded white towels from one pile to another on the table. One day the “Amoy” was not heard. She had died unexpectedly after simple surgery at CGH. Her place was immediately occupied by an old lady named DR who screamed, talked with herself, called for her mom, rambled endlessly about her cat. It continued for hours. Nothing could stop her. When another neighbor called the nurse with his usual “hello” she screamed “Shut up!” Still, her screams and talks were much better for Tikhov than the endless, very annoying CNN reports broadcasting all day very loudly for his neighbor on the left. Fortunately, at night a cuff in DR’s throat was inflated to protect her lungs from the flow of saliva. In this state she could not talk, and the other patients could sleep in silence.

The neighbor on the opposite side of the corridor was called “Doctor”. He talked on his cell phone for hours and hours each day. During the day he was a normal, if somewhat demanding person. But at night he lost his mind. He would scream unintelligible gibberish, not understandable by anyone. Mark tried contacting him once and was told that Doctor was in Russia a couple of times. Some days the Doctor called someone on his mobile phone and complained for hours about different things. As far as Tikhov understood it was one of his sources of entertainment. Another of his entertainments was watching loud pornographic movies. Thus, everybody could enjoy the sexy moaning by a supposedly beautiful girl, whether they wished to or not. It was an unexpected sharing of exciting content. The nurses knew about the Doctor’s hobby and just asked him to lower the volume.

Tikhov was asked initially by the nurses whether he would like to be called “Doctor” as well because he also had a PhD, but he rejected the idea. He explained that a Doctor must have a tired voice, which demonstrates how hard he had worked all his life to become so smart. And, of course, he must wear eyeglasses as direct proof of the fact that zillions of books were actually read. Tikhov’s Mark had a fresh, vibrant voice, and no eyeglasses were in place, so it made no sense for him to be called “Doctor”.

One of Tikhov’s neighbors, also with ALS was located pretty far away. Tikhov saw him only when his father rolled him to the patio. His mouth was always wide open, and the head was far back. Tikhov was surprised how he could survive in that position; saliva flowed directly into his lungs. Because the neighbor belonged to the quiet group, Tikhov had a big suspicion that the poor guy could not pass information about his inconvenience even to his father.

Tikhov saw many people with ALS who were sitting in their wheelchairs in crooked positions. One shoulder would be higher than the other, or the head leaned to one side, body and legs arranged crookedly. Now he understood, as a visitor would not that these positions in most cases were not the choice of the bodies, but the choice of their caregivers. The quiet patients were simply not able to insist on placing the relevant parts of their bodies straight and symmetrical. If you add to the picture saliva drooling from their mouths, you have the full impression of seeing this imbecile person. Even if his brain works better than yours!

Personal dignity is a fragile thing and Tikhov was afraid to be classified as an imbecile so he always insisted that staff and his wife place him in the wheelchair in good symmetrical position and wipe his saliva frequently.

Tikhov would be happy to communicate with his neighbors via email or in other ways, but arranging such contacts was a delicate matter, especially in the case of non-speaking patients. Tikhov created a private Facebook group named “George Pearson Center Residents” to facilitate the establishment of such contacts. Thinking it would be very useful if somebody at the Facility could assist in distributing this contact information to the residents, he sent email to a Speaking Pathologist asking for help with this task. He waited for a week and didn’t get a reply. It was, of course, not in the scope of her responsibilities. Then Tikhov asked his wife to print the contact information on pieces of paper and ask the Coordinator to distribute them to the residents. This approach, too, produced no results. It was silent sabotage by the Coordinator. What Administrative Bureaucracy on this planet wants united people? Only after help from some of the nurses did new members of the group start to appear. The first post Tikhov published to this group was information about the temperature at the Facility. Measuring the temperature had always been his hobby. He always took a thermometer on his travels. He always knew the temperature of the seas, oceans, lakes, and even in swimming pools where he swam. As a scientist, he knew that data was critical for good decision making, and absolutely necessary to prove theoretical and other realities. These days the thermometer he had bought at Costco was placed at his bedside table at some distance from his computer. It helped him to control his condition. Part of ALS is the constant jumping of body temperature. To avoid overheating it was necessary to adjust the cover on the body in accordance with room temperature. Tikhov found it very useful to have this thermometer supporting Mark when the call bell brought a nurse to his bed.

KM

KM was a nice male nurse with a wide spectrum of interests. As soon as he found out that Tikhov was a Solar Physicist, he suggested calling him Doctor or Doc, or even Doctor Solaris. KM was the only nurse Tikhov had met who respected physics. He was the member of a group who observed auroras, so solar activity was in the scope of his interests. Solar activity was minimal at the moment, so of course his group was not that active as a result. He also was interested in learning Russian. Because of him, Tikhov required Mark to say common phrases like “Thank you”, “Good morning”, etc. in two languages - first in English and then in Russian. Soon many nurses greeted Tikhov and replied to his “Thank you very much” in Russian. At school, KM learnt how to sing the famous Russian song Katyusha in Chinese. Tikhov found many Chinese versions of Katyusha on YouTube. His favorite was where the song accompanied a military parade with marching women. Tikhov opened web pages with Katyusha in different languages and played them for nurses in accordance with their original nationalities while they did procedures for him. Besides Chinese there were Danish, Indian, and Japanese versions. Unfortunately, there were no Filipino versions, the most common nationality at Tikhov’s ward, so for these nurses Tikhov played the English version.

KM appeared only every second week. Of course, during this absence he forgot 90% of what was necessary to properly care for Tikhov. So, Tikhov instructed Mark to work hard at explaining the details. KM was not very disciplined. Often he came to Tikhov to perform scheduled procedures late. Like other nurses, he liked to say “I will be back in a minute!” and never came back. One thing was good: KM was very careful and didn’t do terrible mistakes.

Tikhov often discussed science fiction movies with KM and recommended that he watch “Solaris” by Andrei Tarkovsky. “Doctor Solaris” was constructed by KM as a nickname for Tikhov after viewing this movie.

Wheelchairs

Tikhov got a second wheelchair from the ALS society. Unfortunately, it was the second bad wheelchair. Occupational Therapists (OT) at CGH tried hard to make it usable for sitting more than two hours at a time, and they partially succeeded. Unfortunately, they couldn’t, of course, fix the chair’s design flaws, such as the hard to adjust headrest or its unstable armrests. The OTs at the Facility took it as a professional challenge and continued to work - one day Tikhov was even rolled to Physio Center at the Facility, where five physiotherapists of different ranks measured his body and position on the wheelchair. They used smart scientific terms to describe what was wrong and what should be done. Tikhov knew that when such a big, highly professional group were performing research, nothing would be done for him personally, or for his wheelchair. His theory was soon confirmed. He never saw the researchers and their leader again after that first visit. The only method which worked to improve the wheelchair was when he talked to the technician and explained to him in the simplest language what to do. After that, Tikhov could sit in the wheelchair for up to five hours with little pain and sometimes even sleep in it.

One time he fell asleep and his head fell down to his chest. He immediately woke up and found himself in a miserable condition. He couldn’t raise his head, the curtain was half closed, and the computer monitor hid his head from view to people in the corridor. Thus, nobody could see Tikhov. His head slowly moved to his knees, causing intense pain in his neck. The nurses were walking by, not suspecting that behind the monitor the Black Hole had just re-emerged. After half an hour Tikhov’s breathing began to be affected, and the alarm signal started to beep. Soon a nurse rescued Tikhov. After that incident Tikhov was more attentive to head support configurations and the position of the curtain.

Transferring Tikhov to the wheelchair usually required two nurses, but at the Facility one nurse could do the job. First, they put a sling under Tikhov on the bed. It was important to use the right sling. Otherwise, the head could fall backward, creating pain in the neck, or the body could slide down into the space between his knees and back. The nurses didn’t care about such small things, and it was Tikhov’s initiative to arrange for the correct sling. Many times, he sent nurses to the laundry room to get the black mesh sling which was the best for Tikhov.

Once the sling was in place, the lift started to raise Tikhov out of the bed. The main concern for the nurses was to prevent disconnection of the ventilator tube during transfer and to safely place Tikhov into the chair. This procedure alone provided many opportunities to conduct experiments on survival.

In the Hands of Robots

ICU at CGH, where Tikhov spent several weeks after tracheostomy surgery, provided many opportunities to conduct survival exercises on him. The “aerial acrobatics” scenario was one of them. On one of the first days after arrival in the ICU, Tikhov was transferred from one bed to another. The nurses forgot to attach one strap to the lift and one of Tikhov’s legs started be pushed towards his head, of course resulting in intense pain for the patient. The nurses didn’t notice the problem and continued to move Tikhov, not looking at his open mouth and big eyes. They did their job slowly and carefully. It was the first time that Tikhov thought that he was in the hands of zombies or robots. Further life at the ICU confirmed that hypothesis. Since it was the ICU, the nurses came to him rather often. The problem was that every time nurses dropped by, they were different nurses. He felt like his bed was at a train station with crowds of people passing by. Some of them stopped near him and did procedures on him in absolute silence. The procedures included injection of medications, turning, so-called washing, measuring blood pressure, etc. Tikhov felt himself as a cog in a big machine, where his role was to be an object for processing.

Some of the ICU robots had the title RT. If they saw that Tikhov’s breath parameters were not OK, they moved a small tube into Tikhov’s lungs to suction secretions. The problem was that there was often nothing in his lungs; the reason for the alarm was something else. But these robots knew only one action. The constant, clumsy insertion of the tube to suck nothing scratched his throat and lungs and led to serious irritation of both. As a result, Tikhov experienced coughing episodes where he couldn’t stop coughing for many minutes. This torture took place several times a day. After a few days the robots, to their satisfaction, started to suck fluid from the lungs. It was blood. Then their enthusiasm only increased. Now they had real reason for alarm, namely, the blood in Tikhov’s lungs. Mark begged them to stop suctioning. But the programming in the robot’s heads didn’t allow that. Only moving Tikhov to the Facility saved his throat and lungs from complete destruction and unplanned surgery.

For many days Tikhov experienced shortage of breath and asked the RTs to increase the breath volume and respiration rate for the ventilator. This request divided the robot RTs into two groups. The large group said “Only after an order from the doctor”. Another small group contained only two RTs, who said “Whatever you want”. This was surprising to Tikhov. Maybe the programs were uploaded into the robots’ heads at different times, producing different versions resulting in two approaches co-existing at the same time? Tikhov asked one of the “Whatever-RTs” to set proper values on the ventilator and enjoyed life until some “Order-RT” would notice the difference between current ventilator settings and the prescribed suffocation values. The “Order-RT” would immediately correct the values and of course never alerted Tikhov. It was especially unpleasant for Tikhov if this occurred at night during sleep. It would take some time for Tikhov to realise the reason for his heavy head and shortness of breath some mornings.

The ICU doctors also had “Whatever” and another “Not-Necessary” groups, whose decisions were based on gas analysis. Gas analysis always produced objective, un-biased, scientific results which showed that Tikhov must have suffocation settings on his ventilator to avoid failure of his kidneys and other bad things. Wide-open mouth, big eyes, and uncontrolled movements of the body didn’t influence the decisions of the “Not-Necessary” group. But somehow, luckily, Tikhov got permission from the “Whatever” doctor for his settings and his life was stabilized for some time.

On a Zip Line

Another near accident in the air happened with Tikhov at the Facility just a few days ago. The nurses forgot to disconnect the oximeter from his finger and the wire was trapped. When the lift started to raise Tikhov, his finger began to bend in the opposite direction to his palm. One second more and Tikhov would be travelling to the emergency with a broken finger. At the last moment, just before a cracking sound, nurse AM noticed the finger and disconnected the oximeter.

Despite this exciting recollection, Tikhov was hopeful that today, everything would be OK. Tikhov had received the right sling and experienced nurses to do the transfer. Tikhov was flying. It was like a very short zipline. His body felt pleasure lying in the sling, feeling similar to a hammock. Every body needs exercise. The zipline, turning in the bed, the periodic “washing”, and any other movements appearing in his current life replaced the active life of Tikhov’s past. He watched the videos of himself downhill skiing, cross country skiing, windsurfing and while he watched his brain, if not his dead muscles, repeated the remembered movements. He tried to convince a local OT to prescribe a range of motion exercises, to be done by an OT or another trained person, but it never happened. An additional job. Shortage of resources. The usual.

 The exercise program was approved only when a new OT was hired, and a new area of pleasure was opened for Tikhov. Initially, exercises were administered by a Physiotherapist (PT) every working day. But very soon the number of sessions was reduced to three times a week - the PT was busy with other, more important stuff. Tikhov’s PT was a young, slender girl. She didn’t have much strength in her arms. So, Tikhov got half the necessary range of the motion exercises. Still, it was good. During the exercises Tikhov talked to her about science fiction movies, about the attractions of British Columbia, other countries. If the PT needed to interrupt exercises, she said “I will come back to continue in five minutes” And she never came back. Of course, there was no excuse offered, no explanation.

Landing. Safely, but not too deep in the chair. Check. Tikhov asked with his eyes to be lifted again. Experienced nurses repeated the landing, now remembering to push Tikhov’s knees hard. OK, check mark for that too. Lower body is now good, however the neck is crooked “by design”. Legs, hands, towel cover, everything in place. Check. Chair at 45 degrees to the window. Check. Computer table. Left, right, back. Check. Tikhov could type now. “Put towel on left side of head to make the head straight.” Check. Foams under forearms. Check. Everything is good. The nurses left.

“I am in the chair” typed Tikhov on Skype to his wife VR. “I will come soon” she replied. When Covid 19-related events were the number one headline in the news, Tikhov’s wife was only allowed to stand outside his window. Lucky that Tikhov’s ward at the Facility was a single story building so Tikhov was, by definition, located on the ground floor. Thus, the distance between him and his wife was only two meters. When he saw VR they talked using Skype via his computer and her cellphone. VR talked and Tikhov typed in the chat window with his eyes. High Tech! Mark rested. Public WiFi was not great; often, disconnections spoiled the conversation.

Pleasures

Nowadays VR was allowed to come to Tikhov’s room. A welcome break from his shaky, painful world started. He had the same warm feeling as the inmate does when visited by friends or family, or receives a parcel from home. Today VR brought buttermilk and juices. These were additions to Tikhov’s “wood chip” meal and they helped a lot. However, yesterday Tikhov had received an email from the Facility’s Dietitian SJ, who wrote that he would stop this procedure. “The nurses don’t have time”. And again the common excuse: “Shortage of resources”.

Who cares about your stomach? Going to the fridge, opening the bottle, pouring the liquid into a cup and injecting into the stomach using the syringes is an additional job. A much more “efficient” method of maintaining the life of residents at the Facility is to force them to have a BM every second or third day (this reduces the need for cleaning twice or even three times less per week). This is attained by an “appropriate” diet and disimpaction, which is the removal of stool with fingers from the rectum. Tikhov believed that disimpaction should be the last method to use in the case of constipation because it kills all natural bowel movements. But, of course, regular disimpaction passes full control of BMs to the nurses and makes scheduling possible. Because of the time saved, disimpaction was used at the Facility far beyond its limits. With buttermilk Tikhov had BMs twice a day and on the same shift. It was outrageous! Every time during cleaning he was intensively asked whether the nurse could do disimpaction. He moaned and shook his head expressing “No”.

Tikhov was afraid that after cancelling his buttermilk schedule he would be forced to have disimpaction regularly. So, he replied to the Dietitian with his arguments and asked him to “reconsider, please”. In fact, this was truly the fight for the “freedom of defecation” (a good slogan for street protest, eh?).

Usually VR stayed for three hours each time she came. As a nurse, VR had half the skills of the ideal ZJ. But she had two important features: she tried to understand Tikhov’s requests very patiently and never was angry at him. And she did things, which the nurses never did: shaving, cutting his hair, cleaning inside his ears, cutting his nails, doing a range of motion exercises. And, very importantly, tasting food! This small pleasure had become the most pleasant part of Tikhov’s life. VR put small amounts of homemade food into his mouth, and he moved his tongue, felt the familiar taste, and spit out the food using the air from his ventilator. Of course, the main part of his food was injected into PEG tube using syringe.

Tikhov couldn’t evaluate his ability to swallow himself. The methods used by the Dietologists were very primitive. They looked at Tikhov when he swallowed blended food, and put fingers on his throat. That was it! Tikhov had expected that some high level technique would be used to evaluate this critical life function, say, visualising his swallowing using ultrasound or tomography. But it never happened. So, he only let the food stay in the mouth and not go into stomach to avoid aspiration. Swallowing after tasting is, of course, the pleasant final harmony of existence involved in eating. But even without swallowing, Tikhov’s list of possible pleasures was extended significantly.

 Another pleasant feature of VR’s visits were their trips to the patio. In summer there were no problems with clothing. Fall, with its heavy jackets and pants seemed pretty far away. the Facility had a very nice garden with flowers and rose bushes. Each time while being rolled to the patio, Tikhov passed a big placard fixed to a window about the different kinds of pain. He noticed that many items were those he could relate to.

On patio excursions, Tikhov had quality relaxation time which included the enjoyment of nature. The concrete patio was like an island in the middle of a forest. There were nice flowers in big pots, benches, and a big patio umbrella which reminded him of a radio telescope antenna. One big pot had a tomato plant and a sign with the name of some of the residents. The birds were singing. VR had poured sugar water into a hummingbird feeder two weeks ago, but the birds had not come yet. It was hard for them to notice good changes in such a forest. The garden was maintained by volunteers and a couple of women from the Recreation Center, who regularly watered the plants. It was not enough to keep the garden in ideal manicured state, but Tikhov didn’t mind - the elements of wilderness gave an additional charm to this piece of nature. When it was sunny, Tikhov took sunbaths. He had liked beaches in his previous life and now it was easy for him to imagine that he was somewhere in the Caribbean. By getting tan only on the front side of his body he established a new type of black-and-white human species. During their patio time, VR always updated Tikhov on the latest news. Sometimes they used his letterboard for communication. After they returned from the patio, VR injected buttermilk and left. Tikhov returned to his shaky, painful world.

All-inclusive

The Facility, with its beautiful garden plus his scheduled feedings reminded Tikhov of all-inclusive resorts albeit with some additional features. After moving to Canada, he and his wife started to travel to these resorts once or twice a year. It was big fun! The Caribbean countries and Mexico created an unbelievable environment for relaxation. Sometimes their friends from Beautiful City would travel with them. At the resorts they met many Russian immigrants like them from Canada and the USA. It was interesting to talk with them, and listen to their different stories. Once they met two women from New York who were very open and very funny. Playing Bocce or horseshoes on the beach, and exchanging jokes with them was a very enjoyable experience! Tikhov particularly liked how they sang “We are the champions!” after winning a game! One trip, a couple from Boston became their friends on their second day of arrival. It was easy to get acquainted right on the beach - just listen for someone who was speaking Russian. They met two families from Alberta who opened up a new view on life in Canada of hard-working people living and labouring in remote mine areas. Of course, not only Russians were in Tikhov and his wife’s social circle. They didn’t really have a language barrier and easily communicated with anyone who spoke English. The resorts always were organizing funny competitions, Spanish lessons, dance classes and other activities. All this gave numerous opportunities for communication and camaraderie. At one resort, Tikhov was proclaimed as the king of the resort after winning some funny competition.

And the food was always fantastic if the resort was rated at more than 3.5 stars.

Although the resorts were all-inclusive, tips were not excluded. At first it seemed strange to Tikhov. The question “why?” required a logical answer for him. It seemed especially irrational to give tips at the bars and restaurants because it divided guests during their usual 7-night visit into a “best-service group” and “everyone else”, but the only explanation he found for himself was “tradition”. After accepting this, before each trip he took lots of one-dollar banknotes and imagined himself as Santa Clause with presents for all the adult kids he would be meeting on vacation. It was easy for him because in Russia he had frequently played the role of the Russian version of Santa Clause, “Ded Moroz”/Father Frost at his son’s school and at work, the Institute of Solar-Terrestrial Physics. It was always a pleasure to give gifts and receive in return happy faces, smiles and laughter. Accepting irrational things in these matters gave him peace of mind. All-inclusive resorts just had hundreds of Santa Clauses all year around. And happy faces were everywhere all the time.

Tikhov always traveled to all-inclusives fully equipped, carefully packing to ensure that he was as prepared as possible for unexpected situations that might arise while they were away. Nobody else at the resorts was like him. This sometimes caused funny situations.

He mounted large balloon tires to his luggage bag and easily wheeled it out of the resort and to the beach, even though it was loaded with heavy snorkeling equipment, life jackets and many other necessary gadgets. In Jamaica he was interrogated by local workers who pointed to his fantastic-look-a-like bag; “Weeds?” As soon as Tikhov would arrive at the beach, he fastened a special belt with hooks to his beach umbrella to provide a place to hang clothes and bags. One day he and his wife heard a new Russian-speaking friend say “See Sergey, our new friend always chooses an umbrella with hooks. And you don’t!” They couldn’t imagine that somebody would spend his time for implementing such gadgets. For long excursions outside resorts Tikhov mounted the same balloon tires to his backpack with the handle. It was so nice to wheel the backpack in hot weather instead of having to carry it on his back! This also generated comments such as “I carry everything with me”.

 Traveling on their own gave Tikhov and his wife the freedom of planning their time and sometimes gave them unusual experience. At the Tulum ruins in Mexico Tikhov and his wife had great entertainment by listening at the same time to the guides who spoke in different languages. Their stories were quite different!

Watching fish while snorkeling in life jackets was the great fun at all-inclusive resorts. You could just lie on the surface and watch or, take off the life jacket, hold it by the rope and dive. Tikhov used Google maps to identify dead corals or rocks, where fish could potentially live. Then he and his wife walked along the shore sometimes a few kilometers rolling their balloon bag. These were very nice walks! Sometimes they swam in life jackets a few hundred meters into the ocean to watch fish. These were real fish adventures! A few times they bought snorkeling tours but being under the pressure of time limits was not their way to communicate with nature. They preferred their way. In Manzanillo, Mexico they saw a school of fish with hundreds of long silver species. At Caribbean resorts they saw lots of colorful fish, giant skates, seahorses and many other fantastic creatures. One of the criteria for choosing a resort was its remoteness from another resort. It guaranteed them the opportunity to meet nature in all its beauty.

Another enjoyable activity was windsurfing. Tikhov started to learn it few years before his diagnosis at Sailing Center in Beautiful City. For three years he enjoyed windsurfing at all-inclusive resorts. Tacking, jibing. What a pleasant feeling when you have full wind in your sail and you move with a great speed!

The relaxed atmosphere of the all-inclusive creates unusual behavior from some of the guests. Tikhov, his wife and friends from Beautiful City witnessed in Cuba how young people left an a la’ cart restaurant through the window. At another Cuban resort one guy used to enter the restaurant with a portable sound system turned on with almost full volume. Only one time did the relaxed behavior turn egoistic at a 5-star resort in Mexico. From the middle of the square, one guy was happily screaming in the middle of the night for a couple of hours, forcing a few hundred people to enjoy his squeaky voice or else sleep with ear plugs. Tikhov would have understood the man’s overwhelming feeling of joy if he had sung songs. But it was just happy screaming, without words and melody and thus eliminating fellow guests’ ability to enjoy his noise with him.

Back to Bed

Tikhov fell asleep. After one hour he woke up because of pain in his left scapula. This problem had started only recently. He was not able to reach the call bell. He looked at his clock and noticed that feeding time was approaching. The feeding machine didn’t start at its appointed time and produced an alarm. Tikhov hoped that this alarm would catch the attention of some nurse, who would then drop by to investigate. And his hope came true. After the nurse approached Tikhov, he typed in his problem, pressed the “Speak” button and Mark explained the issue to the nurse. She put foam in the middle of the back to reduce pressure on his scapula. So nice when simple things solve the problems!

Tikhov continued to enjoy the summer view outside the window. Music played. He liked every type of music. Russian bards, heavy metal, classical…now YouTube was playing Led Zeppelin. Young people were jogging outside the window. He could see the gate with the name “Langara Gardens”. Life was beautiful. Then another YouTube video. Trevor Noah, science fiction audiobooks…he could continue like this forever. But Tikhov’s brain soon asked for a real job so he reviewed some new scientific papers and then programmed a bit in Python. A busy day, given his condition!

5.30pm. Time to go back to bed. Shift change had passed. The nurse for the new shift approached Tikhov. This one was HL. Tikhov called her the Crazy Nurse because she talked to herself all the time. She liked to ask questions when Tikhov was without his computer and interpreted his moaning as she wished. Even if Tikhov had the computer in front of him she didn’t give him a chance to finish his sentence to reply to her question. She jumped to the next question. Obviously, she didn’t need his answers. She lived in her own world. It seemed that her memory was severely damaged. Tikhov’s instructions for her always contained only one sentence. Even in this case, if she was distracted, she would still forget. High Tech helped - Tikhov could repeat his request again and again without re-typing it. Fortunately, Mark didn’t ever get tired. HL’s favorite phrase when she left was “I will come back very soon”. Very soon could mean anything from three hours to never. She was a good person and Tikhov couldn’t understand such behavior until he realised one day that she was just a robot on autopilot with a bad memory chip. She had her schedule and her route, and followed it without thinking, accepting delays as normal. Once she left his room, she moved on and just forgot about his existence. He belonged to another world, outside of her brain. This outside world vanished as soon as she left Tikhov’s room, and re-appeared only when it was time to do so and she got around to it.

HL started preparation for his transfer to the bed. The sling was put in place and the lift started to raise Tikhov. Tikhov hated it when the bag filled with his urine was put on his lap. Gross accidents had happened two times before, when the bag was accidently unplugged and urine poured out onto Tikhov. The nurses didn’t wash him, they only dried him with a towel. It was unpleasant. Now the bag cooled down Tikhov’s legs. Hopefully this time it would be OK, with no spillage.

One thing was missed - HL forgot to disconnect the oximeter. But this time the wire was not trapped, and his finger escaped the tension. Then, suddenly Tikhov felt a lack of flow from his ventilator. He started to suffocate. The alarm started to ring. The nurse was focused on the transfer and didn’t pay attention to the alarm. Being in a sling, the only way to show that there was a problem was to open his mouth and eyes wide. Without air, Tikhov was unable to produce sounds.

Tikhov had always considered death by suffocation as torturous but the number of close calls had convinced him that he must resign himself to such an end. Of course he would fight for his life by opening his mouth and eyes widely and stretching his legs until he couldn’t these things, but if these signs of distress didn’t work, he had decided that he wouldn’t panic and would “die peacefully, surrounded by medical professional personnel”. The alarm continued to ring, HL noticed it, looked at Tikhov and started to check tube connections. She could not find anything wrong; he could see her thinking… “I will connect you to the chair vent!” she declared.

Once again Tikhov was saved. Life would continue.

Landing into bed was a success. Turning him to his side on the bed, as usual, was accompanied by pain in the crooked neck.

HL spent too much time positioning Tikhov’s legs. It seemed very simple. Just put the legs on top of two pillows, move the pillows toward his head, place his feet on the black cushion and turn his toes outwards. Make sure that the heels are in the air. But it was not that simple for many nurses. In spite of her experience HL was not the exception. Tikhov knew that the more time HL spent on his legs, the less time would be left for other items, and as previously noted she had a predefined time for her duties with Tikhov. As soon as the time elapsed, she said her favorite phrase “I will come back very soon” and left.

It would be catastrophic if her departure was at night. But in the evenings, Tikhov could hope that some other nurses would finish his list. The call bell was unreachable. But regularly scheduled events would come soon, along with the nurses needed to perform their associated duties! Tikhov continued to watch YouTube and listen to John Denver, Gordon Lightfoot, recent Brad Paisley tunes, and others. It was time for bards. It was so hard for Tikhov to find modern young singers pleasant for him. He regularly listen to playlists suggested by Warner Music. His friend GS helped him to find “his” voices in the modern sea of crying and eastern style singing. But often the clean voices from the 60s filled Tikhov’ bard time.

At 7pm HL returned. It was time to turn on the feeding machine. Tikhov typed his requests as fast as he could, and HL completed the items one by one. She had great patience this time! Everything was completed!

Spider

Tikhov was enjoying reading a new Solar Physics article when suddenly he noticed a big spider on the table. It walked lazily and then stopped in the middle. Tikhov liked all living creatures including arachnids. In the old days, when a wasp would fly into his room and tried to teleport through the window he always took it gently using a napkin and let it go into the open air. He always admired how nature could create such perfect creatures with multiple legs. Humanity had started to imitate them successfully only recently. The spider was dangerous to him only for one reason - it could walk into his ear at night, and Tikhov was defenseless. So, he pressed the call bell. But instead of his nurse the LPN named MT had come. Mark explained the problem. But then something unforeseen happened - MT started to scream and smashed the spider to the floor. “Kill it!”, Mark commanded. “I can’t. I am Buddhist”, MT replied. “OK. Take it and move it outside”, Mark insisted. But MT did nothing. He was a Buddhist and at the same time he was afraid of spiders. Then, Tikhov’s nurse appeared. Mark explained again. The nurse pretended to look at the floor. She didn’t even turn the lights on. Obviously, she didn’t want to make MT feel bad. “It ran away”, she said. Tikhov understood that it was impossible to force the nurse to hunt for the spider. Nevertheless, he tried.

“Take the mop and wipe the floor!”, Mark requested again. “The cleaners already left. I can’t get the mop” was the reply. Tikhov decided to put more pressure, and Mark said something very silly. “I see that you will make no attempt to eliminate the spider. If it will go into my ear, I will sue you. You have full responsibility.” The reply from the nurse had the intonation adults use when talking to a three-year-old child “Don’t worry, it already ran away!” Feeling the comedy-like feel of the situation, Tikhov surrendered. Even if he would really file a complaint on the nurse, it would be easy to explain the spider appearance as a patient’s hallucination. He reconciled himself to the visit of the unwelcome guest in his bed. The probability that it would find a way into his ear was exceptionally low. Tikhov was not afraid.

Usually, the final repositioning of the evening happened at 9.30pm. Then he would watch a little bit more YouTube, and then fall asleep to the ocean waves or Mark Wiens’s videos. Falling asleep, Tikhov smiled. It had been a good day. His fingers, toes and neck were not broken. His eye was OK. He hadn’t suffocated. The pain was tolerable. He had already forgotten about the spider. He knew, however, that one bad thing had definitely happened. ALS had killed the motion of the next portion of his muscles. Soon it would become visible. However this thought didn’t spoil his happy mood. He lived now day to day, without any long-term plans.

Dreaming of a Cure

One hope still lived in Tikhov’s heart. Six years ago, there was a big fund-raising campaign, the “Ice bucket challenge”, to support ALS research. A huge amount of money had been raised, but of course there was a rather long period of time to achieve positive results from research. He waited for the medication which would magically stop his disease and, maybe, even restore his dead muscles. As his nephew used to say in Russia “Vaccines have been found for many deadly diseases. Why can’t ALS be the next victory of medicine?“

As soon as Tikhov received his terminal diagnosis, he looked to find a way to extend his life to bridge to the date when the magic medication would appear. His daughter-in-law SA suggested trying a medication named Edaravone available in Japan since it hadn’t been approved yet in Canada. He travelled to Tokyo, Japan with his wife (he used walking poles at the time) to Dr. Yoshino’s clinic for tests and to get this rather expensive medication. There, Tikhov encountered ALS patients from all over the world, from Brazil to Iran - and also from Canada. He met and talked with a man named RD from Beautiful City and they agreed after their return to keep in contact and try to find a private clinic at which they could get injections of the medication. In those days Edaravone was not allowed to be injected in the hospitals because it was still not federally approved. Tikhov left his business card with him.

 After they returned home Tikhov didn’t receive any email from RD, and Tikhov’s wife found a private clinic willing to do the injections herself. Canada allowed the import of Edaravone only in the amount needed for nine months. Thus, after nine months it was necessary to import it again. Then, suddenly, Tikhov received an email which said that the sender was the son of RD, and that RD had died. Before his death RD asked his family to give Edaravone for free to a person who needed it. They found Tikhov’s business card and RD’s son sent this email. “Oh, my God! Instead of selling it, they give it for free. What a great person and what a fine family!“ thought Tikhov. The younger son of Tikhov met with RD’s son, took the Edaravone and delivered it to Tikhov. This gift was very helpful because Tikhov had spent almost all his money on the private clinics in Tokyo and Beautiful City.

Then, the Canadian government approved Edaravone for treating ALS in Canada, and the situation with Edaravone injections became better. It could now be injected at the hospitals. However, it was, of course very inefficient for the patients. They needed to order a special bus for disabled people (i.e. HandyDART). Often it was necessary to wait for it for more than an hour. Then there was the arrangement of the injection schedule at the hospital. In fact, when transport to and from the hospital, waiting at the hospital and the time it took for the injection it often took a whole day. But what to do, if you want to survive? Tikhov had always wondered why the injections couldn’t be arranged at patient’s homes? Of course he knew the answer! Shortage of resources! And, as already mentioned the low priority for such a small group of ALS patients.

 After RD’s medication had been exhausted, Tikhov’s wife found and bought the medication from the family of a deceased ALS patient, who underwent injections at the hospital together with Tikhov. Then, inexplicably, in an unbelievably inhumane bureaucratic twist, Canada forbade the import of the medication and didn’t make it available in Canada either.

Tikhov also went through stem cell injections here in Beautiful City and in the USA (his eldest son helped him with the walker during that trip). Tikhov was a fighter. He attributed the remaining current movements of his legs, neck, and eyes to these efforts. Maybe it was an illusion, but this illusion helped him to survive and wait. He wanted death only in the case of losing communication (aka being “locked in”) or dementia. He couldn’t travel anywhere anymore to chase his dream but, he had in fact, had tried all possible options.

Then Tikhov started to experiment. His hypothesis was as follows.

The source of ALS malfunction was in the head. Somehow automatic oscillations were established with positive feedback, which involved the motor center in the head as well as peripheral motor neurons throughout the body. Motor neurons in the muscles got overexcited and died. It was necessary to break this positive feedback loop by changing the conditions for the brain or/and for the muscles. For three years Tikhov had used eyeglasses that generated different color circles which oscillated with a predefined low frequency. His younger son MX had bought it online from a company located in Moscow, Russia. One other experiment was to place magnets on the head. Another experiment was to create a temperature gradient in the head by placing a hot-water bottle on top of the head. At the same time Tikhov focused on the motor center at the top of the head and imagined small human-like creatures who repaired the neuron links. He also underwent massages, salt baths, and poured ice-cold water on his head and body to treat the other end of the chain. These experiments had continued for more than a year with zero results.

Tikhov’s last hope was that the disease could stop on its own, the so-called “spontaneous” cure. Tikhov found on YouTube that there were 24 such cases of ALS reversals. What said that he couldn’t be the 25th? Another patient who lived at the Facility (Tikhov read about him in the Beautiful City newspaper), had received his diagnosis 18 years ago, yet he was in approximately the same condition as Tikhov. Such things as ALS longevity did happen!

The diversity of humanity created zillions of representations of people’s lives on the planet. Tikhov likened this to the image of people living at train stations served with unpredictable schedules. Their planned space-time train could arrive or be delayed. Exhausted by waiting they might take another departing train and arrive at another station with the same rules. And it is impossible to predict where a person will be or what he will be doing in few years. Tikhov’s life had attained this most unpredictable point for him and many others. But even from this peripheral train station many trains were still coming and going. There was not just one well-known predictable direction.

As many ill people do, in his sleep, Tikhov dreamed of himself walking, eating, and breathing as before. These were pleasant dreams. There he felt completely happy.

Two years later

To be continued.