Still, looking at it objectively with no exaggeration of
scale, I can honestly say that I have cause to complain because my situation is
far worse than anything else anybody has ever gone through in the history of
the world. Ever.
Maybe not, but in terms of shear shittyness, my situation
has to be in the top 5%. First of all, HD is an exotic disease. From a 2005
study: only 30,000 people nationwide have it; 200,000 are at risk. That’s
fucking rare. Then come at me with cancer, Parkinson’s, Alzheimer’s, or any
other prosaic ailment and I’ll slap you right down with how much worse HD is.
There is no cure, not even any hope for a cure, and its symptoms are absolutely
execrable in comparison with the duration and infirmity of those diseases. I
suppose one could make the argument that the individual suffering from HD doesn’t
necessarily feel pain, like cancer; however, their goddamn brain is literally rusting
away over many years, even decades. It is possible to survive cancer, but if
you don’t, well, at least it runs its course pretty quick. I call trump.
So I’m in rare company by rights, couple that with my
forced isolation and I’m basically a Man Apart. All of the pieces I’ve read
concerning HD victims or their caretakers have a common thread: companionship.
Mostly family, sometimes friends, all their stories center on the importance of
having the support of knowing, helpful companions.
We have a sick old dog. And that’s it.
As I’ve mentioned, MW’s family is useless. Shockingly so.
They have no patience or tolerance and cannot be trusted to handle this
situation with anything close to compassion. True story: early on when it
became apparent MW and I weren’t planning on having children, my father-in-law
took me aside and told me that if the reason we weren’t reproducing was because
the fear of HD (it was), we had nothing to worry about. See, he’d read
somewhere that you could test the fetus for the disease. If the test came back positive,
just abort. Well now. What can you say about a motherfucker like that?
What about my family? I suppose I could confide in them, but
this isn’t their burden. And to be perfectly honest they wouldn’t be much help
anyway. Except my brother. I could confide in my brother and he – and his
family – would be compassionate and caring. I know this. But as I said, I don’t
want to weigh him down with my problems. He’s already done enough – too much –
for me anyway. Then there’s my sister. She’s been alienated by MW’s behavior,
righteously so, but I’m sure if I called her up and explained things she’d come
around. However, there wouldn’t be much point to it. She lives far away and is
super busy with her own life. Plus she recently became involved in some charismatic
church so I’m sure I’d get a lot of “we’ll pray for you”s out of the deal.
Yeah. You do that.
I can’t trust my mother. She’d confront MW about getting
treatment. Probably start arguing with her again. Do not need that. Finally my
dad would be like my sister to the nth power. He lives far away with
his own busy life.
Family is out, then, which leaves friends. Alas, the nature
of the beast is irrational, indecisive behavior so the only friends we have
left are the most casual of casual. How would they react to the following: “MW
has HD so could you call her up to hang out sometime; you know, just to sit and
be with her for a while because she really likes talking to people? Be aware
that she’ll probably cancel the event because she has a hard time leaving the
house, but just making the offer would mean a lot. And if she does show up,
please don’t talk about anything significant. Keep the conversation casual
because she gets anxious when people discuss problems and stuff.” Who knows?
Maybe some would, most would not, however, and those that did certainly wouldn’t
do it more than a few times.
At the end of the day it is just me. And the dog. And
neither of us are doing all that great right now.
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