Damn the holidays.
It has been two years since I first became certain that MW has Huntington's Disease. Two years ago I thought it would be only a matter of days, maybe months before, faced with the obvious, she would surrender to the depression and hopelessness and go on some kind of "disability". Not that I ever believed she would actually get tested and treated; rather, she would just quit life and sit at home all day, every day, atrophying. And, subsequently, I would have to quit my job to take care of her.
24 months later and, bless her heart, she is still plugging away. Still working; still getting out of the house. Overall a triumph, I suppose, but it has been exhausting.
HD is my personal Sword of Damocles and I've been shuffling along under that guillotine for so long now, my back is permanently bowed, my guts are weak, and my thoughts are black as pitch. I take it everyday simply because I have no choice. I welcome the aches and pains that rack my body as I lay down at night on the unbidden hope that they might prevent me from ever waking up again. But, inevitably, I do wake. And shuffle along yet another day, one hateful eye glaring up at the blade waiting, waiting, waiting.
Tomorrow is Thanksgiving. My coworkers ask what my big holiday plans are and, of course, I lie. Oh, you know, spending it with family. In reality it'll just be me and MW with nothing to do; nowhere to go, and all I can do is try very hard keep her from sinking into depression caused by the goddamned expectations of these brutal holidays.
Wednesday, November 25, 2015
Wednesday, November 18, 2015
2015.11.18
My dad died. October 10th, 2015. I was not able to visit him before he passed, nor was I able to go to the funeral. How does it happen that one does not go to pay his respects or even bury his own father?
When I told MW he had died, she immediately started making plans to go. She checked what hotels were available, how much flights costs, if there is a Whole Foods in the area, etc.. Then, after awhile, she started talking about the dog - she can't put the dog in a kennel so we have to take her too. And, of course, how will MW eat? Remember, her eating habits are ridiculously strict.
So I suggest that we just not go. Impossible! We have to go. Its my dad, for christsake. After all, family is everything, right?
Turns out that's not right. The disease is more than family. The disease DEFINES family. It will take priority. Every time.
Eventually, after agonizing over it for a day, my wife agrees that it is better we just don't go. It would be too hard to organize everything and besides, we really didn't know my dad anyway, right? He wasn't a big part of our lives.
True. True.
And now he's dead. Tch.
Want more? Okay, you don't get out of going to your father's funeral by saying, "yeah, no, it's not convenient for us right now." I had to explain - as best I could - to the rest of my family why we wouldn't be there. Any ideas how to do that?
Me neither.
I saw a T-shirt on Facebook that read; "It's a Huntington's thing, you wouldn't understand." As hilarious as it is insightful.... Anyway, I had to tell them MW's condition is such that we can't travel. Also, I had to instruct them not to talk to MW about anything. Don't call our house; don't send us letters. If they need to talk to me, call my work number and leave a message.
We are entirely isolated from both sides of the family. Good. Nothing left to do now but wait for the end.
***
Poor dad. Although it is true; he really wasn't part of my life, still.... I miss him. Maybe I just miss the thought of him being there. I would have liked to seen him before he died. Seen my home town. Goddamnit.
***
I gave up drinking when I almost burned the house down; now I have to stop eating too. Okay, not stop eating entirely, but I do have to loose a lot of weight really fast. It has been going on for some time that I've had an ache and swelling down south. Meh. I haven't have the time or inclination to worry about it. Then, shortly after my dad died (of cancer!), the ache intensified and the swelling became cumbersome. So I looked it up on WEBMD and discovered that it is most likely a hernia; and the only thing for it is surgery. Well, shit. I can't do surgery; first of all MW would never be able to deal with it, secondly who would take care of her while I recover? Nope. I'm fucked.
Cancer would have been better. I could have ignored that until it just didn't matter anymore. But a hernia? That's not going to do anything but hurt and break me down. Pretty much every day MW needs me to move stuff around - usually heavy things like mattresses and furniture - because if she's walking around the house and bumps into a side table, that table will need to be moved. And mattresses always need to be rearranged. I do the work of three men around the house; I can't be crippled by a stupid fucking hernia.
But I can't get surgery to fix it either.
What to do?
I go on-line and find about 1,000 websites that confirm it - I need surgery. Ah, but then I find one site that claims you can correct a hernia with meditation, yoga and, if necessary, weight loss. Bob's yer uncle.
So I'm loosing the extra 20 (okay, 30) and stretching whenever I can sneak away from MW long enough. Meditation is bullshit, so that's out, nevertheless, between the diet and exercise, I have noticed some improvement.
When I told MW he had died, she immediately started making plans to go. She checked what hotels were available, how much flights costs, if there is a Whole Foods in the area, etc.. Then, after awhile, she started talking about the dog - she can't put the dog in a kennel so we have to take her too. And, of course, how will MW eat? Remember, her eating habits are ridiculously strict.
So I suggest that we just not go. Impossible! We have to go. Its my dad, for christsake. After all, family is everything, right?
Turns out that's not right. The disease is more than family. The disease DEFINES family. It will take priority. Every time.
Eventually, after agonizing over it for a day, my wife agrees that it is better we just don't go. It would be too hard to organize everything and besides, we really didn't know my dad anyway, right? He wasn't a big part of our lives.
True. True.
And now he's dead. Tch.
Want more? Okay, you don't get out of going to your father's funeral by saying, "yeah, no, it's not convenient for us right now." I had to explain - as best I could - to the rest of my family why we wouldn't be there. Any ideas how to do that?
Me neither.
I saw a T-shirt on Facebook that read; "It's a Huntington's thing, you wouldn't understand." As hilarious as it is insightful.... Anyway, I had to tell them MW's condition is such that we can't travel. Also, I had to instruct them not to talk to MW about anything. Don't call our house; don't send us letters. If they need to talk to me, call my work number and leave a message.
We are entirely isolated from both sides of the family. Good. Nothing left to do now but wait for the end.
***
Poor dad. Although it is true; he really wasn't part of my life, still.... I miss him. Maybe I just miss the thought of him being there. I would have liked to seen him before he died. Seen my home town. Goddamnit.
***
I gave up drinking when I almost burned the house down; now I have to stop eating too. Okay, not stop eating entirely, but I do have to loose a lot of weight really fast. It has been going on for some time that I've had an ache and swelling down south. Meh. I haven't have the time or inclination to worry about it. Then, shortly after my dad died (of cancer!), the ache intensified and the swelling became cumbersome. So I looked it up on WEBMD and discovered that it is most likely a hernia; and the only thing for it is surgery. Well, shit. I can't do surgery; first of all MW would never be able to deal with it, secondly who would take care of her while I recover? Nope. I'm fucked.
Cancer would have been better. I could have ignored that until it just didn't matter anymore. But a hernia? That's not going to do anything but hurt and break me down. Pretty much every day MW needs me to move stuff around - usually heavy things like mattresses and furniture - because if she's walking around the house and bumps into a side table, that table will need to be moved. And mattresses always need to be rearranged. I do the work of three men around the house; I can't be crippled by a stupid fucking hernia.
But I can't get surgery to fix it either.
What to do?
I go on-line and find about 1,000 websites that confirm it - I need surgery. Ah, but then I find one site that claims you can correct a hernia with meditation, yoga and, if necessary, weight loss. Bob's yer uncle.
So I'm loosing the extra 20 (okay, 30) and stretching whenever I can sneak away from MW long enough. Meditation is bullshit, so that's out, nevertheless, between the diet and exercise, I have noticed some improvement.
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