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Put real dignity in choice to die

I spent some of my final days among the monarch butterflies in Pacific Grove, Calif. Their life cycle dictates that they die there every February. They have no choice.

I too will die soon.  I have rapidly progressing ALS – amyotrophic lateral sclerosis – better known as Lou Gehrig’s disease.  There is no cure, and it is 100 percent fatal. Yet, unlike the monarchs, I have a legal choice as to the timing of my death in Washington. That choice, however, is seriously compromised in my case.

 That I have a qualified choice at all is because compassionate voters in this state approved an assisted-suicide initiative, or Death with Dignity (DWD), for individuals with terminal illnesses. But the medication has to be self-administered, so “assisted” is a misnomer.  It renders the law useless for those who most need it. 

 In states where DWD is legal, its use is in the single digits. Most people with terminal illnesses don’t consider it out of ignorance of this law or for religious reasons. Others consider it, but change their minds. Some who want it find it’s too late – the process can take two to three 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 wager that 90 percent of Americans know a family member or friend who wanted to end their misery before their actual demise. 

 I am a social creature by nature, a party lover, invariably the last to leave. 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.

 I have become trapped inside a motionless body, a living mummy, a burden to those around me. 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. Most of my muscles visibly vibrate 24/7.  All that constant contraction causes perpetual fatigue and tension headaches. My doctor tells me ALS is a painless disease and that there is no reason to consider suicide. Maybe I’m just a wimp. 

 My dilemma is that, although Washington has a DWD law, the assistance provision is a farce, providing only for a lethal prescription that must be self-administered.  This leaves patients with the choice of ending their lives prematurely or crossing that threshold where they won’t be able to, thus damning them to a lingering end of dependence, misery and pain.  Left with this choice, I must go with prematurely ending my life.

 Another irony is that my death could save others. Although my motor neurons are wasted, only my muscle tissue is affected. Otherwise I’m a perfectly healthy 55-year-old male. I exercised daily. My blood pressure is still 110/70, and my heart rate a steady 70. I have perfectly functioning lungs, kidneys, heart and liver.  There are candidates out there who could use my organs to save their lives. But even as a living donor, I am excluded from donating anything. 

 The legal system has made it impossible for those with incurable neuromuscular disorders to donate organs to those who need them.  Organ donation must be conducted in a hospital immediately following the donor’s death. You have to be brain-dead, in the hospital, and on life support while they harvest the organs. But euthanasia is not allowed in hospitals, ergo my healthy organs get flushed and at least four or five people die needlessly. So, in order to donate my organs, I have to become that living mummy, then die of starvation or suffocation in a hospital. Is that humane?

 Consider this: 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.

 Dying is hard – it would be a little easier if I knew I was saving others from facing it. Isn’t it time we changed our laws to reflect our true humanity – and shared the gift of life?


Curtis Johnson worked in international business and education for more than 30 years before being disabled by ALS.  You can reach him at


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