It's true. I do. A lot of people hear this disease mentioned and imagine tragically infirm people in wheelchairs, watching wistfully as walkers raise money for their benefit. I suppose some people with MS embody just that image, but I don't (yet) fit that description.
I have had problems -- I was legally blind for a year, and I've had bouts of numbness and such -- but I've been lucky. Really, the worst part is the anxiety associated with getting my medication, a thing frequently threatened by incompetence and greed. My hope is that when I get to Finland, it won't be such a headache. Ass-ache.
What's it like having a chronic condition, the future symptoms and severity of which are entirely uncertain? There's a lot of worry and hypochondria involved. "Why did my leg just twitch? Should I tell my doctor? What's up with that debilitating pain in my back? Should I tell my doctor?" And when your doctor inevitably leaves some true, tell-tale symptom unrecognized and untreated, you might find yourself asking, "Why is my doctor such a dumb shit?" You might have two spinal taps, the first just for shits and giggles; these lab results will determine that you're spinal meningitis free!
But, bad news. They don't have enough spinal fluid to correct their mistake. You'll need another one.
For me, it also involves a lot of denial. Healthy denial, I think. First of all, I'm relatively symptom-free. Why should I ruminate on the possibilites more than is necessary? What I should really do is enjoy my mental faculties and motor functions a whole hell of a lot in the event that they one day diminish. Secondly, I tend to like to avoid doctors at all costs. They do nothing but order painful tests that yield no results, and they ignore you if they can't devise some way to torture you. Experience has taught me that keeping them at arm's length is actually pretty beneficial. [To be fair, my current doctor has been good to me. I'm thankful for both him and his office. Still, I'm not ready to trust. I'm just not.]
There are certainly things I think of during rare moments of reflection like this one. Should I avoid having children? MS's genetic heritability is uncertain (I think? I'm woefully ignorant about such things. It's part of that healthy denial I mentioned), but it's certainly possible that I could pass it on to some potential kid. Fortunately, I don't really want children anyway. Will I become some sort of invalid? Well, probably not, given how the disease has progressed in me so far, but if I do, I guess I'll deal with it then.
Sometimes people force me to think about it. Like in biology the other day. My professor was under the impression that all MS is progressive -- that is to say, it progressively destroys your myelin sheath until you're immobile and stupid. Well, from the little I know of MS, it most commonly manifests as a series of relapses and remissions, hence the term "relapsing-remitting." Sure, there's a pretty sizable element of progression in those relapses, but, hey, quit telling me I'm doomed if you're not entirely certain.
I think, actually, the most painful thing about it is to think a lot about it. So far, its hold over me isn't disability but rather fear and anxiety. In that sense, I'm quite lucky. Nevertheless, it is a little like having someone threaten to punch you in the face and not disclose when it will happen. "When you least expect it," it says.
Still, I am lucky, and I know it. But I think I'll retreat back into denial now.
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