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.”