A milestone: this marks the hundredth entry, encapsulating just about three years of our Huntington's Disease journey. Surprisingly, some things have improved since I started this journal. MW manages to sleep most nights now and has kept a part-time job for two years. She started socializing again and last week she ate out at a restaurant for the first time since I don't know when - close to five years at least.
On the other hand, the chorea and speech issues have become more noticeable. Volume control, in particular. I'm still getting used to the way MW will start shouting for no apparent reason. And the house.... It has become like a bad situation comedy. When I get home from work I ask myself how much worse today's mess will be from yesterday's mess; and I'm always surprised by the level of chaos and disorder.
Last week, after the visit from her ghoulish relatives, MW confessed that she still thinks she might have the disease, but quickly countered by saying she won't actually get it for another twenty years because her mother was in her 60s when she got it. That's not so bad - twenty more years of health and productivity. She can live with that.
Boy, I could too. Twenty years? Hell, she might outlive me at that.
When I take a step back to assess my own physical and emotional pain, I grant myself a certain amount of indulgence. I'm old. Things are falling apart. I haven't had a drink in three weeks and my chest hurts at times. I have a hernia which causes near constant discomfort and, occasionally, even immobility. I'm frequently short-of-breath and a few days ago I felt as if I might pass-out at my desk. I have an odd, quarter-sized scabrous growth under the hair just above my ear and another raised, discolored patch of skin at my temple. When my brother asked about it, I lied and told him my doctor said it was nothing - just a mole.
I haven't seen a doctor in fifteen years.
Now for the emotional pains: my life has become a ceaseless lie. I spend every second of every day either at work or taking care of MW while assuring her she doesn't need to be taken care of. Keeping it going is hard and constant work. Aside from lunches at the office, I haven't sat down to eat a meal in years. Around the house I'm always on my feet cleaning or providing. I get four hours on a Saturday while MW is at her part time job to do those chores she won't let me do when she's at home; such as laundry, ironing, and scrubbing the bathrooms, etc..
To my credit, I have been and am strong enough to push through the hardships. My rule around the house is: whatever MW wants; MW gets. Whatever. All she needs to do is tell me and I'll make it happen; no matter how irrational or burdensome the task. Midnight and we have to move the mattresses again because it's too dark in this room? Not a problem. I'll do whatever she asks, whenever she wants.
Because I'm not dying of Huntington's Disease. It truly is the least I can do.
But how do I reconcile this philosophy with my own failing health? Shouldn't I take care of myself so I can continue to take care of MW?
And there's the disconnect. See, I have no idea if I'm doing the right thing for MW. I know for a fact that if I were not alive, she would have to seek professional help. She cannot function on her own
Professional help. Not just me, running around on aching legs, waiting for things to get worse.
Every day I exhaust myself for the sole pleasure of watching MW succumb, little by agonizing little, to a fatal disease. Granted, there is no cure, but there are treatments. Support. By protecting her from herself, I'm keeping her from those treatments. From that support.
I don't know if what I'm doing is right; but I know I can keep doing it until I collapse. I've proven my resiliency. Still, whenever I catch a calm moment, an unbidden phrase enters my head. It speaks to the end of this toil. I hear it at least once a day. Yes, I immediately push it aside and carry on, but the words are such a part of me now, it has become like Salinger's famous Ohm prayer. Whenever there is nothing else, there is always that wish.
And so when I wake up feeling as if a metal band is being tied around my chest, I do nothing but lay and wait. If it passes, it passes. If it doesn't. It doesn't.
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