So in my very sporadic reading lately, MS & assisted suicide seem to be frequent partners. Take a look here, for example. Ironic, since multiple scelrosis is not a terminal illness, and people who are in favor of assisted suicide and euthanasia usually use ‘terminal illness’ as the excuse for their position.
Which got me to thinking . . . what is it that makes MS dreadfuller-than-average? Not worse, necessarily, but more dreaded? A few brainstorms:
It won’t kill you. Not usually, anyway. Catch a nice case of terminal cancer, and you can be dead in short order, without having to a lift a finger. Come down with MS, and you’ll probably live about as long as previously planned. So if you develop a death-wish, your disease won’t fulfill that desire for you.
MS is very unpredictable. Will you develop horrid symptoms? Which horrid symptoms? Nobody knows. Until diagnosis, you had a life map all planned out. Now it isn’t just a matter of changing plans, but of not even knowing how to make your new plans. Losing the illusion of control is very stressful, and stress can be depression-inducing. Depression, of course, being what leads people to suicide.
The unpredictability can be very discouraging. Unlike once-and-for-all disabilities, with MS you never know what is coming next. Which makes it hard to know what rehab efforts will turn out to be worthwhile. Your right hand is acting up — do you learn to write left-handed? What if your left hand goes next? So you decide to try a nice dictation software — but what if your speech becomes affected? And yet you feel a tad silly preparing to blink as your attendant points to a letterboard, when so far all you’ve got are some numb fingers . . . It isn’t that the disabilities associated with MS are impossible, of course they aren’t. People manage just fine with equally disabling non-MS conditions. It’s that it is discouraging to work crazy hard to adapt to the current symptoms, knowing that at any moment all that work might come to naught, and you have to start over from the beginning again.
–> Curiously, people without MS-type conditions are also prone to having all their hard work wiped out in an instant. It’s just that they enjoy a more insistent illusion of control than a person with a known dreadful disease. No one says, “Darling, are you sure you want to take up archery? What if you lose both your hands to that nasty strain of meningitis tomorrow?”
The unpredictability is hard on bystanders, too. The family members in particular who may have to provide care, pick up slack, and spend financial resources, also lack that pleasing notion of predictability. There’s no getting into a comfortable routine, confidently determining that x,y & z are going to be needed, how can we provide for x, y & z in the most efficient, family-friendly way possible?
(And of course, your loved one *isn’t* likely to die soon, so you can count on this unpredictability to go on indefinitely, with none of that desperate emotional force of caring for a person actually on their death bed. It is wearying.)
MS happens to adults. Which means the raw parental passion isn’t there to fight desperately for the sick person. Sordid truth: parents will fight to the bitter end on behalf of a sick or disabled child, in order to give that child every possible chance at life, to help that child thrive and live life to the fullest, despite whatever obstacles. That’s how parenthood is. (Not actually due to the disease in question — parents generally work crazy hard for all their children, regardless of health status.) But by the time you develop MS, you usually don’t have Mom and Dad there to clear the path at every turn. And there just aren’t many good substitutes for good ol’ Mom & Dad, when it comes to being a sick person.
And then of course, there’s the actual suffering. MS has a deservedly bad reputation — it can be a truly vile illness. Kinda like polio: a lotta people are exposed to the polio virus and are none the worse for wear; but if it decides get you, it can get you good. Depending on your luck, patient and loved ones might actually have a hard time of it with MS, with the all the difficulties that come with any disabling injury or nasty illness. Not all cases turn out to benign, or painless, or something-I-was-ready-to-deal-with.
So in all, it is a recipe for stress and discouragement. This for the person with MS — who already is prone to depression just as a symptom of the disease, aside from everything else. And then also for the near family members, the people who, when the depressed patient begins to think about suicide, are *supposed to be* the ones who help the patient get treatment for the depression. Except that if you, the caregiving family member, are yourself suffering from situational depression, you are hardly in a position to think clearly on matters of life and death.
And hence MS shows up in the news, wound up in the politics of suicide and euthanasia. Not because it is a terminal illness — precisely because it is *not* a terminal illness.
Killing People Is Not The Solution. Emotional support, social support, practical help with day-to-day problems: *these* are actual solutions to the problems related to MS. [Hey, living wages, real health care reform, and accessible community design would be useful here! Hint hint.] Treatment for depression, for whichever members of the family are suffering from depression, is essential. A strong legal framework that protects vulnerable people from the temptation to suicide and euthanasia is part of the package, too.
–> Legislators, judges, and medical professionals who encourage death as the solution to discouraging medical problems are, frankly, a bunch of cowards. Wicked evil cowards. Deal with the actual problem, don’t try to sweep it under the tombstone.
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