New Clear Vision

End of Life Doesn’t Have to be Drawn-Out and Meaningless

by Curtis Johnson

I’m spending my final days among the Monarch butterflies in Pacific Grove, CA. Their life cycle dictates that they will die here in February. They have no choice. I too will die soon.  For I have rapidly progressing ALS.  There is no cure in sight and it is 100% fatal. Yet, unlike the Monarchs, I have a legal choice as to the timing of my death, at least in the state of Washington.  That choice, however, is seriously compromised in my case.

That I have a qualified choice at all is because a few years ago compassionate, progressive liberal and libertarian voters in this state approved an initiative allowing for assisted suicide, or Death with Dignity (DWD) for individuals with terminal illnesses.  Problem is, the level of assistance is minimal. It has to be self-administered. So ‘assisted’ is a misnomer.  It renders the law completely useless for those who most need it.

In those few states, neighboring Oregon being one of them, statistics show the annual exercise of DWD to be in the low single digits.  Most people with terminal illnesses don’t consider it out of ignorance or for religious reasons. Some that do consider it change their minds. Then there are those who wish to implement it but find that it’s too late — the process can take 2-3 months to qualify — or they can no longer self-administer the lethal prescription.  If one takes that population into account I think the numbers implementing DWD would be much higher. I would wager that 90% of Americans know of a family member or friend who wanted to have their misery ended before their actual demise.

My own grandfather was hospitalized with bone cancer the final three weeks of his life, waiting to die at age 84, saturated with morphine yet still in great pain,  unable to eat, barely move, or open his eyes.  He could commicate at times, usually to cry out in pain, which was scary since he had been a tough-as-nails, hard-working laborer all his life.  Yet he was made to suffer until the bitter end — treated worse than a stray dog.

When our Springer Spaniel, Roxy, became listless and stopped eating at age 14 we took her to the vet. After a diagnosis of cancer, we waited a few more days before doing the humane thing and euthanized her. Her time had come and there was no humane reason to prolong her suffering.  She had lived a good, full life.  Why does our society treat animals more humanely than humans? Yes, it appears we are a primitive species when comes to dealing with death, and especially inevitable death.

To be sure, there can be no judgements made as to why one may choose to end their life sooner or later than others. But the very tenets of our constitution include the freedom as to how and when to end one’s life.  There are those who enjoy a sedentary lifestyle. They may enjoy becoming motionless bodies, dependent on an army of caregivers.  They’ve never hit a 300-yard drive, climbed a mountain, holed out from 40 yards at Indian Canyon, hit crisp serve and volley winners,  canned a 3- point shot or landed fish on a fly rod. I am not one of them. In this paradise of Monterey Bay I can no longer skip among the tidal pools nor kayak over kelp forests filled with floating sea otters and playful sea lions. I grew up on a Palouse farm and have relished the outdoor life since birth.

I am also a social creature by nature, a party lover, invariably the last to leave. I once had a decent ‘radio voice’ and sang karaoke.  Now that my speech has lost its volume and become incoherently garbled I find myself irrelevant in social situations.  This isolation is every bit as painful as the physical pain and frustration imposed by ALS. Now too I am losing power in my arms and hands such that I type with one gnarled index finger and can no longer even pick up my iPhone.

It is for those myriad  reasons that I choose not to live trapped inside a motionless body,  a living mummy if you will, a burden to those around me and to the social services and medical systems available here in the U.S.  You see,  I’ve had ALS, commonly known as Lou Gerigh’s Disease,  since June 2010, and I’m losing functionality quickly. The list of things I can’t do grows longer each day. My core is almost gone, and soon my arms and legs will become completely detached. Now, most of my muscles visibly vibrate 24/7.  All that constant contraction leads to perpetual fatigue and tension headaches. At night my legs are wracked with burning spasms and massive convulsions every 30 seconds for up to two hours at a time. At least once or twice a night my right quadricep gets pierced with a a blanket of red-hot darning needles, leaving that leg numb for two hours. Unless I’m totally motionless,  my sunken shoulder sockets and hip joints get nails pounded into them 2-3 times an hour, day and night.  In October I did a full body slam on a concrete sidewalk, breaking my left humorous near the shoulder. I couldn’t use that arm for six weeks and it has hastened my decline. My doctor tells me that ALS is a painless disease and that there is no reason  to consider suicide. Maybe I’m just a wimp.

However, I am also left with the dilemma that, although our state has a DWD law, the assistance provision in the law is a farce,  only providing for a lethal prescription which must be self-administered, leaving the patient such as myself with the unenviable choice of ending their lives prematurely or crossing that threshold where they won’t be able to at all and damning them to an end of frustration and dependence, misery, pain and pain killers.  Left with such a choice I must go with prematurely ending my life. Barbiturates are much cleaner than a gun to the head, the traditional way Americans have ended their unbearable misery.

Some will think of my biblical Job-like trials since 2008, when I was diagnosed with late stage 2 prostate cancer at age 51, as punishment for a multitude of sins. I think of it as having used up my quota of fun, thanks in large part to loving family and friends, worldwide.  What are the odds of a Palouse farm boy making a second home for himself in an ancient castle city in Kyushu, Japan, where I was a teacher, business owner, sushi chef and organic gardener, or seeing the tooth of Buddha in Sri Lanka, or attending nine FIFA World Cup soccer matches, including Brazil three times and two finals? It’s been an unpredictably wonderful life!  I have no complaints.  My biggest regret is that I won’t be a part of my grandkids’ lives, take them fishing and camping, play sports, and watch them grow as they discover the beauty and wonders of this world.

The odds of getting prostate cancer at age 51 are one in 500.  The odds of getting ALS are one in 50,000.   Somebody wants me dead real bad! And they’ve tried before. The US medical system has saved my life on no fewer than four occasions, including after a head-on multi-car highway car crash that killed six when I was age 8, pneumonia at age 5,  and acute appendicitis at 43.  Most would say I’ve been very fortunate, including myself.

I went to Cheney H.S, from which close to 100,000 students have graduated since its inception.  Given the aforementioned odds of getting ALS that would dictate that two CHS grads to date would get ALS. And so it is. Both Jack Garner and my father, Wayne Johnson, graduated class of 1952, playing sports together and leading a delegation to the state capital in Olympia. Both went to college together, joined the ROTC, and carpooled to work in an insane asylum to pay tuition.   Both would move their families to Bellevue, WA in 1964.  Our families remained close. In February of 1983, just prior to my moving to Japan, I helped Jack and hie wife move into a much smaller, one-story house. Jack had already lost the use of his arms and hands. He would be gone 18 months later, choosing to starve himself to death rather than carry on.  At that time, while still living in Japan, I imagined how horrid a death by ALS would be. Again, when I read of the renowned Hall of Fame pitcher Catfish Hunter’s death from a fall due to ALS, I was once again reminded of ALS and wondered at length what I would do if I got it.

A few months before my symptoms began in June, 2010, I came across an episode of Frontline, on PBS, called ‘The Suicide Tourist,’ the story of a computer engineer from Minnesota with ALS who was compelled to go to Switzerland to euthanize himself.  He had lost complete use of his legs, but his upper body and speech were still functional. He had to self-administer the lethal liquid which is why he chose to check out early.  The cameras rolled as he slowly went to sleep, death coming officially within ten minutes. It was all conducted in a hospital with loved ones in attendance. Peacefully. Humanely.

Another irony to my situation shows how primitive we remain as a species. Although my motor neurons are wasted only my muscle tissue is affected. Otherwise I’m a perfectly healthy 55- year old male. I don’t smoke. I exercised daily. My BP is still 110/70, and my heart rate a steady 70. My cholesterol has been as low as 128, and last stood at 160. Triglycerides and blood sugar levels have always been normal. My BMI has never been higher than 27, and body fat less than 22%. I have perfectly functioning  lungs, kidneys, heart, and liver. Surgery completely removed my prostate cancer:  3 years and counting.  Surely there are candidates out there, some having waited for years, others desperately running out of time, who could use my organs to save their own lives?

But when I asked physicians, social workers, and hospice professionals about donating organs I was met with ignorance and negative responses. Organ donation must be conducted in a hospital  immediately following the death of the donor. You have to be brain dead in the hospital.  Then they keep you on life support while they harvest the organs.  Euthanasia is not allowed in hospitals, ergo my healthy organs get flushed and at least four or five people die needlessly.  What does that say about our value system? In order to donate my organs I have to become a living mummy, then die of starvation or suffocation in a hospital.  Is that humane?

The facts of organ donation suggest otherwise:

1. 104,748 U.S. patients are currently waiting for an organ transplant; more than 4,000 new patients are added to the waiting list each month.
2. Every day, 18 people die while waiting for a transplant of a vital organ, such as a heart, liver, kidney, pancreas, lung or bone marrow.
3. Because of the lack of available donors in this country, 4,573 kidney patients, 1,506 liver patients, 371 heart patients and 234 lung patients died in 2008 while waiting for life-saving organ transplants.
4. Nearly 10 percent of the patients currently waiting for heart transplants are young people under 18 years of age.
5. Acceptable organ donors can range in age from newborn to 65 years or more. People who are 65 years of age or older may be acceptable donors, particularly of corneas, skin, bone and for total body donation.
6. An estimated 12,000 people who die each year meet the criteria for organ donation, but less than half of that number become actual organ donors.
7. Tissue donation can enhance the lives of more than 50 people. Donated heart valves, bone, skin, corneas and connective tissues can be used in vital medical procedures such as heart valve replacements, limb reconstruction following tumor surgery, hip and knee joint reconstruction and in correcting curvature of the spine.

Why is this so hard to understand? Isn’t it time we changed our laws to reflect our true  humanity — and shared the gift of life?

Curtis Johnson has worked in international business and education for over 30 years prior to his being disabled by ALS.  You can reach him at ikagasuki@gmail.com. For more information on Curtis and the implications of his situation, please see this essay by NCV Contributor Pat LaMarche.