Episode 1: On crying and dying
One of my saddest memories is the day of my diagnosis. After a week in hospital getting x rays, blood tests, a MRI, a PET scan and electric shocks to my arms and legs, I was sitting in a small room with my wife and doctors. The doctor told us the conclusion, I walked back to my room, sat on my bed and burst into tears. My wife cried with me.It felt like the end of my world, all of my future dreams shattered, and despair of becoming a burden to my wife, my children, my friends, and wider society.
We proceeded to cry off and on everyday for several weeks, until a colleague of my wife told her that tears do not help and they should be saved for truly tragic moments. Crying when you have cause for sadness is natural and appropriate, but tears that fall daily for a long time may stem from thinking gone array. Catastrophizing is viewing a situation as considerably worse than it actually is. It can paralyse you from taking action and lead to depression. There are some ways to combat this. I have used two methods.
A cognitive stop is a technique for disrupting negative thoughts running amok. You say out loud or in your mind "stop! ". I use an image of a small man with a big stop sign shouting "STOP! ". Sometimes I repeat: stop, stop, stop. It is a simple but effective way to maintain your mental health.
Another technique is mindfulness, or living in the moment. A central tenet of the martial art Aikido, it means to focus on right now; sight, sounds, smell, taste, and feeling. I am fortunate to have been doing this for most of my life. I have detailed memories of good and bad moments from my past. Nostalgia is a comfort in this illness. If you have not lived in the moment much before, you may be spending time fretting about what will happen next or in some future time, or ruminating about what occurred just before, or some previous time. Try focusing on the present three or four times a day. With practice you can reap the benefits of this way of life.
I still cry at moments of acute stress. When I can't do what I could do yesterday, the sense of loss is palpable. I also have become more sensitive. Movie scenes of high emotion and tender moments of family life bring me to tears.
ALS is an appalling disease with successive causes of misery. Have a good cry and move on. Do not think about what you can't do. Focus on what you still can do. You will have good moments after your diagnosis. Take care of your mental health and be wary of slipping into negative thinking and depression.
My Aikido teacher told me something profound in the early months of my illness. He said that the decline I am experiencing happens to everyone. This is true; almost all of the people I have known who died went through brief or prolonged periods of suffering as their body's systems shut down. The exceptions are those who died in their "prime of life ", a teenage girl who went to a party and died of alcohol poisoning, and a young man who was shot and killed in a robbery gone wrong in Cambodia. Great tragedies that were so sudden they left family and friends shocked and unprepared
I have been close to death before. When I was eight years old I spent the summer at my grandparents home by a long beach. Half way along the beach was a safe swimming area with surf lifeguards. At one end of the beach a small river ran into the sea. Usually a large sandbar blocked the river mouth from the sea creating a fresh water swimming hole with lots of kids swimming there. This was great for kids, but not so good for farmers upstream whose land was somewhat flooded. One fateful day adults dug a ditch through the sand bar to drain the water to the sea.
At first the water trickled to the foreshore, but soon the pressure increased and the ditch widened. It became a wonderful natural water slide with many kids jumping in at the top and getting out just before the shore. I was one of them.
After sliding down a couple of times, with the volume of water increasing second by second, I eagerly jumped in again. I slid down, and tumbled in churning waves and was swept out to sea, perhaps twenty metres from the beach. My feet couldn't touch the bottom; I was in deep water and I couldn't swim!
I tried to tread water, but I didn't know how and wasn't strong. My heart beating fast, my eyes stinging from the salt, I put my head back and my legs forward and tried to float.
With desperate panic I was able to hold my face over the water for what seemed a very long time but was probably a few minutes. I put my arm up for a split second every time I could in an attempt to show to anyone that I was in peril.
Suddenly I heard splashing near me, strong arms enveloped me and I was moving swiftly through the water. An off duty lifeguard had come along to see the commotion. He understood the danger and without swimwear, nor the support of his colleagues, with no goggles or a rescue buoy,he had swam out and saved me. He carried me onto the beach and laid me down on the sand just beyond the waves. He said "if you want to vomit, do it " and turned and ran back to the sea to rescue another boy with the same predicament as I had had.
New Zealand has one of the longest coastline in the world, and the people enjoy an outdoor lifestyle with swimming, boating, fishing and surfing. It follows that drowning is a common cause of death in my home country. I can't say how close to dying I was, but I could not survive without rescue. That young man saved my life.
What comes after such a brush with death?
A fear of deep water; I remember at age twelve sitting on the bank for hours watching the kids playing in a river at a summer camp. Yet when I was fifteen I got an open water diving license. With scuba gear I have no fear (the deepest I have dived is 35 metres under the sea )but without such gear I would sink like a stone
A great respect for all rescuers. I have never saved a life, but I have helped many people. In a small way I have made the world a better place.
A new lease on life. I don't take for granted the people and experiences of the 43 years since that potential tragedy. I know how precious and easily lost life is. My enthusiasm for everything stems in part from the sense of the ending that is death
I am a survivor. I have struggled to stay alive. ALS is the steady dying of motor neurons, and muscle atrophy. It is a struggle for life in a different way.
The assisted suicide in Kyoto 2020 of Yuri Hayashi highlight one approach to this disease. I believe it is up to everyone to choose their own path. For me, I choose life.
I have read many life changing books that made me who I am. One of the most important is How we die by Sherman B. Nulan. As the title suggests it describes in detail the major ways of dying. I have read it three times; when I was 25, 35, and 45. It has always left me in a somber mood for a few days after I read it. It is difficult to think about death, though it is the common fate of everyone you know, and yourself..
All things end with death leaving memories for the people your life has touched, and the legacy of the remaining possessions and money. As this disease is not immediately fatal, you have time to prepare for your demise and the decline that precedes it. Some may want to end it all as their life is unbearable. I choose to weather the storm no matter where it will take me. I have many people to support me (Episode two ), and technology to make my life better ( Episode three ). A life being pushed and carried, fed through a tube, and hooked to a machine that breathes for you, might seem demeaning. Rather I continue to live in hope of new treatments and a possible cure in the near future. I know that my existence has value. I am not finished contributing to society. I intend to go on, until my journey ends and I die happily.
