ALS, Despair, and physician assisted suicide

Seriously, don’t read this if you aren’t ready.  I’m not looking for pity, sympathy, and this is not a personal call for help.  It’s a real look at something that will impact all of you.

This week I found out that the Virginia legislature was hearing proposals for assisted suicide laws, and will have a public comment session starting the 22nd.  I can’t find any of the verbiage they are looking at, but it is probably being put forward by well-intentioned lobby groups who had a loved one suffer close to death, or are themselves going through great suffering. And I will share the words when I get them.

I’m not going to start with the religious reasons against it, I already did in my post on the problem of pain.  No, I’m going to start with my current mental state after I heard about this.

I have never in my life been more depressed and down than I am right now.

Oh, I’m not suicidal.  But frankly, if I were, what would it matter?  Let me explain.

When you are dependent on other people to eat, dress, move around, drive you around, and even put covers on, you realize very quickly how inconvenient you are to your loved ones and everyone else.  We have to get up earlier than normal to get dressed and out the door.  I joke that if I’m ready before you, you are very late!  It’s a process.  I’m blessed to have a family and parish and community that supports me through all of this.  But I’m not stupid.  It is inconvenient, some would even say burdensome.

“But Joe”, you ask, “why does that make you depressed?”  Good question, I’ll tell you!

Up until recently, most western societies regarded human beings as something greater than what they did or just their status.  Oh, there are always exceptions, but you know what, they prove the dang rule so don’t debate with me.  Somewhere along the line, and I’ll start with Hagel, we began to see humans as non-exceptional, nothing special, and a means to an end.  Looking at you, Industrial Revolution.  The fruits of regarding humans as DOINGS and are valued only for how much they can do is visible in how society is debating assisted suicide, or the campaigns to kill off inferior races because they don’t work as hard.  I’d even say that treating a race as subhuman is another symptom of that thought process. And now we come to this.

I believe that this kind of legislation is targeted at me and people like me.  It might even include people with spinal injuries, or non-terminal injuries or disabilities.  Maybe amputees.   Or like my uncle Glenn, a quadriplegic.  We don’t know yet.

But for the first time in my illness, the awareness of “burden” is now heavy on my mind.  And no doubt in Canada or Washington St I’d be able to spare my family the burden, since “medical aid in dying” is legal there.  But by that very point do I call out those who would enable it – I never had those thoughts before, but they are in my head because they have enabled the possibility.  It’s like giving a hammer to a toddler and expecting him not to hammer with it!  It creates the mental state that leads to the “Suicide epidemic” that we hear about.  If this happened to me, what about all the others that feel the same and have no support?  Are you telling me they are mentally unstable and wouldn’t be eligible for assisted suicide?  Only now the unstable person is told “no”, and they now aren’t a risk to themselves?

Oh, but it’s OK because I’m terminal.  Is that what you are telling me?  That ending suffering because it’s suffering for “no apparent reason” makes it OK to create that mental state?  That if a doctor condones it, it must be OK?  Are you telling me I’m worth less than the healthy 36-year-old because I’m suffering?  Better die quick than suffer?  That if I’m six months from death, lying paralyzed and on a ventilator, that it’s humane to kill me off?

Screw your hypocrisy.

  1. Being six months from death (As the law in Washington is) doesn’t magically change my worth than if I was six months two days.  My intrinsic humanity hasn’t changed.
  2. Why is this an option only for the sick or disabled?  Why is it not available for able or healthy individuals?
  3. Why does a physician need to authorize it?
  4. What makes the physical and mental anguish a man with a gun is feeling any different than a terminal patient with pills?  And why do we try to stop that kind of suicide, but say the terminal patient is good to go?
  5. What is to stop recommendations by insurance and hospitals to use this option, as a means to cut back costs?  And I already have examples of this in Canada.

When I heard the news, what I thought of was how the things I’m working on, the EV, telework, my blog, family, and any ideas or innovations I was trying to push were all worthless.  Who cares about the dying man’s ideas, why bother to implement them if it is better to die than stroke out?  Why work to improve mobility for the disabled if they aren’t really going to be a powerful lobbying group because after all, they’ll be dead soon?

Again, this is not a cry for help, but shining a light in a dark place so you all can see what goes on in the minds of the people these types of laws supposedly help.  It’s not a good place. If you aren’t aware of it, then here is the reality.  There is a big bullseye on my chest.

So let me share why this matters.

  1. a human doesn’t lose or change value depending on if they are suffering.
  2. if that is the case, then any suffering must be weighed in proportion.
    1. for example, the double-amputee racing driver.  He may be young or old but gets celebrated for overcoming adversity and pain.  Why?
    2. Steven Hawking, who died naturally, is lauded for his theory and mental achievements while suffering with ALS.  Why?
  3. the impact one human has on another can’t be measured in “productive output”
    1. for example, any person ever lauded as a hero or role model.
  4. the acts of kindness and love shown by a suffering person and by those around them grow the character of each person involved or any witnesses.
    1. mother Theresa
  5. by killing those suffering or close to death, you deny potentially life-saving therapies for that patient or those who have the same illness.
    1. I’ll go a step further.  By choosing to save people wounded in conflicts, especially our GWoT, we have developed cutting edge, life-saving tech that is used in hospitals worldwide.  Imagine if we said, “oh they are close to death and suffering, let them bleed out” or worse, “put them out of their misery”?
    2. what about all the clinical trials that help other people? Why are we bothering especially in terminal cases?

I have more but I’m upset.  I really don’t like having to spell it out.

In my parish community and my work community and in my family, I have been shown real love and value, both before and after my illness.  That speaks of value.  I don’t know what they get out of it that is tangible, because I can’t offer anything back.  But they don’t seem to mind.  And likewise, I don’t seem to gain anything tangible from suffering but in some way it is life.

I’ll share the words of a wise man, going through his own suffering:

“The simplest truth is that life is given to us in the beginning, the gift from God, or even more vaguely a gift from life itself, and the only appropriate response is to treasure it, which means never deliberately ending it.  Plus, all things in life teach us invaluable lessons, suffering included, it’s an attitude of not filtering reality and seeing it through to the very end. ”

Not filtering reality.  Life can suck, people have bad things happen.  To deny that is to deny reality.  Don’t we judge people on how they deal with that adversity?  Aren’t there whole industries built around pushing through it?  It seems hypocritical to have that attitude but then change near death.

I’ll tell you what it is.  A sense of control.  We want to micromanage our deaths, even though we don’t control when or how we die.  And it’s convenient. We don’t like to see suffering, it makes us uncomfortable.

But the truth is a paralyzed scientist can change the way the world thinks.  A young lady with a spinal injury can influence people across the globe.  Not because they are ill,  but because they are human, and in humanity, there is always the potential even in immense suffering.

I’ll share more when the verbiage comes out.  I had a hard time writing this.  Oh, and for the record, I wrote this with my eyes.

4 thoughts on “ALS, Despair, and physician assisted suicide”

  1. Joe, you know I think you’re one of the greatest people in the world and I wish I could articulate words and thoughts with my voice as well as you do with your eyes…. you’ve made such an impact in this world in the short time you’ve been here and knowing how great of a human you are, i’d do ALMOST anything for you and your family… I felt this way, we’ll before your diagnosis. You’re the kind of human that is truly virtuous and does anything and everything with others in mind and because you’re truly good. Seeing that and witnessing that makes me want to be a better person too. Youve taught me A LOT and I’m certain I am not the only person that feels that way. I sincerely have tried to imagine what it’s like to have This and be in your position but I honestly have no idea how to even get there. You’re a fighter , an incredible person and there is much of what you say and think that I agree with because I do think that ultimately this type of proposal brings out greed and cruelty in some people to take advantage of others.
    I don’t judge anyone, I try to put myself in their shoes and see through their perspective and if someone needs to be out of pain then I would never judge them but If I can help to make their lives better, I’ll do what I can.

    Liked by 1 person

  2. Thank you, Joe, for shining the light of Truth with love, courage and honesty. Before Jesus died, He said “the reason I was born, the reason I came to the world, was to testify to the truth.” And you are testifying , too, everyday, to the truth of God’s love –with your words, your family and your beautiful soul. Love and prayers many times over 🙏


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