Suffering, Euthanasia, And The Passion Of Jesus ChristBy Collin Maessen on comment
I don’t often write about religion as I don’t mind it as long as you’re not either pushing it on others or attacking science in the name of it. As an atheist I might consider it an unsupported position, but it’s called faith for a reason. The most you’ll get from me is a shrug or me rolling my eyes if it’s a particular strange belief. But sometimes the religious say or do something that just doesn’t go down well with me; this time it actually got me quite angry.
Before I go into what this was there’s something you need to know about me. I have a disease called X-linked adrenoleukodystrophy, as it’s a bit of a mouthful this is often abbreviated to X-ALD. It’s a metabolic disease caused by a mutation on the X chromosome, people who have it can’t produce a certain protein. Without it very-long chain fatty acids — a type of saturated fats — cannot be transported to the mitochondria in cells and metabolised. This is problematic as fats do not dissolve in water so your body cannot get rid of them, these fats then will start to accumulate in cells and organs.
This can affect one part of the human body in a very bad way: the nervous system. Nerves are shielded in a layer mostly made out of fatty acids (myeline), without this shielding nerves can’t transmit their electrical signals. It’s not yet known how, but eventually this disease can cause an inflammatory response. Basically this strips the shielding from the nerves and leaves them unable to function.
When this happens it can take away everything from you, it could leave you deaf, blind, mute, and unable to move. It can be especially bad in children who, without a bone marrow transplant to ‘reset’ the immune system, won’t even experience their tenth birthday.
Now after all this, can you understand why something like this will get me angry:
What patients with X-ALD go through is not a “grace-filled opportunity,” the word grace does not come into the picture when you’re dealing with a neurological degenerative disease. They apparently also don’t realize how saying that through “suffering” you can “participate in the passion of Jesus Christ” makes their god sound. Hearing similar things from my priest when I was a Catholic was one of the reasons I started to question the religious beliefs I subscribed to.
I’m one of the lucky patients with X-ALD because so far I’ve been spared any neurological damage. But I still have to deal with knowing that some day this disease will start damaging my nervous system. For someone who loves to learn and write about science this is a very scary thought.
With what I’ve seen people go through with X-ALD, or other diseases and medical conditions, I can very well understand that some would want to have the option of euthanasia. If there’s nothing you can do to cure or treat someone, or even give them some form of quality of life, this can be akin to torture for the person experiencing it. Especially when you’re consciously experiencing losing control over your body and the loss of any connection to the outside world.
That’s why I’m proud that my country has allowed the option of euthanasia in those cases. Especially because this is not an easy subject to regulate with all the ethical questions attached to it. Figuring out when to allow it, how it’s done, and just the details around consent alone can be a headache. But this is something you can study to see if what you’re proposing is a workable solution that has enough checks to prevent abuse. Which is something my country does, I have some very thick reports that evaluate euthanasia in my country (page is in Dutch).
Pushing your religious views on this matter is not something you should do. If you personally believe that euthanasia shouldn’t be done then don’t use that option. You’re free to do with your life as you wish and live it according to your views. But you cannot use those religious views to advocate for legislation that would force someone to go through something they don’t want to. Some have very good reasons to say “Please, no more.”
Great article Collin.
Collin, very sorry to hear about your problem. Yes! We all have a fundamental right to die, and it is ridiculous to suggest that we cannot exercise this right. More importantly, if you face a terrible paralysing future, then knowing can be relieved of your suffering when you need it, enables you to have the confidence to continue living even when you have no control at all over your own life.
My personal view, is that if we wouldn’t treat an animal that way, then we shouldn’t treat a human that way and unnecessarily extend life when that is not what the person wants.
Most of the time it doesn’t really bother me. I do know that with me being 31 I’m right in the group of 21–37 year old where you can typically expect the onset of AMN (spinal damage phenotype of ALD). And I know that the incidence of AMN is between 40–46%. But you cannot predict what will happen when you have ALD. So I have the disposition to deal with whatever is thrown my way. Though it doesn’t mean I don’t get a bit nervous whenever they do an MRI.
Well, Scotty it’s nice to know we have some points of agreement. I whole heartedly second you comment. Although I’d add that there’s also a sanctity to death, that most religious folks ignore.
Collin, I wish you the best. I know nothing of the condition but hope advances in medical science will be helpful for you.
There’s some progress in the development of viable treatments that stop neurological damage. But it’s slow going and very experimental at the moment.
I work in hospice, and I’m here to say that you apparently have no idea whatever what “most religious folks do.”
Where did the original message come from? Who is pushing this idea?
The authoring organization is the American Life League, their name is visible at the bottom of the image.
Sorry, I thought the original message hadn’t been saved.
Collin: I, too, am distressed by this meme. and I’d like, with your permission, to quote from your blog in a blog of my own.
Copyright law has fair use clauses that allows you to use snippets from original works as long as it is properly attributed, proportional, and relevant. So I don’t have an issue if you quote parts if you link back to me.
Sure thing–thanks! (And I know what the law allows–I just thought it right to get your personal permission, also.)
Of course, the American Life League has a right to their views. [snip] But in the US, I wonder how many Catholics actually believe in their extreme views. The more the gap widens between the “church” and the majority of Catholics the more “cafeteria Catholics” they help create. And, then for many of them the next step is the rejection of religion in general, and then possibly atheism.
Here is a snippet from their Wikipedia page: American Life League, Inc. is the largest Catholic grassroots pro-life organization in the United States. The organization opposes abortion under any circumstance and opposes all forms of contraception, embryonic stem cell research, and euthanasia.