November 16, 2004

The Worst Thing

I've been preparing myself to write this post for a long time--as long as I've had a blog, really. It's really hard for me, but I think it's finally time for me to address the biggest source of pain in my life. All you infertility folks who probably think I'm a dork for writing about infertility when all I've done is a round of Clomid, well believe me, I really do belong in the Barren Bitches Brigade, I just make up for a lack of miscarriages and years of IVF with a whole other kind of sorrow.

My mother is dying.

Fuck, I actually wrote it. I've never said the words out loud, although I think them constantly, dozens of times a day. I wasn't sure I'd actually be able to type them. I'm crying as I write this, though, so it's not without difficulty.

She's not dying today or tomorrow, but someday soon. I guess in the metaphysical sense, we're all dying, but my mother's death has a name. Alzheimer's. Rare, early-onset Alzheimer's that is frequently passed on through families, to be specific. After three years of misdiagnosis and random drugs given to treat hormone imbalances, weird menopause symptoms, and a host of other meaningless "illnesses," a year ago this month my father called to tell me that my mother had Alzheimer's. The King and I went out to Romano's Macaroni Grill that night for dinner. I haven't been able to eat there since.

For the past year, I've tried to come to grips with it. She's had symptoms for almost five years. The average Alzheimer's patient lives for eight years with the disease. Of course, the average patient also doesn't get Alzheimer's until he or she is about 70. My mother started forgetting things when she was 50.

I try to tell myself that I probably won't get it, that she probably doesn't have the genetic kind, because she has five siblings who are okay, and her parents didn't have it. She did have an uncle who had the regular, late-onset kind. I try not to think about that too much. Because it's incurable, you see. So I just try to tell myself it's not worth worrying about, because if it does happen, I can't stop it. I tell myself that I'm only 27, that even if I got it at 50 like she did, that still gives me 23 years with my husband, and to raise my children, if I ever have any. I try not to think about the King telling my 23-year-old child that his mother is going to start forgetting how to order meals in restaurants, and how to flush the toilet, and what his name is. I think that the first time my mother cannot remember my name, I might die myself.

I'm finally posting this because I hope it might help me face it better. I already cry every day a little for her, so crying while I type is not that hard. I find myself hideously jealous when I hear people say things like my sweet coworker, when I asked her how her day off went, and she said, "Great! My mom and I went and got facials at a spa; you know, that whole mother-daughter bonding thing." And I smiled and nodded like I knew, but I don't. My mother never did things like that with me; we had a lot of tension between us, and I always thought in a few years, we'd have one of those heartfelt moments where I apologize for all the crap I gave her as a teenager, and she hugs me and says she's sorry she couldn't accept my living with my boyfriend in college, and then we'd go to a spa and get facials. But now we never were.

I'm also hideously jealous of Getup Grrl, with her wonderful mother, who I wish was my mother so much. So because I feel guilty about feeling jealous, I'm going to emulate the better type of person (that would be Grrl), and try to find the humor in the whole dying-slowly-of-a-calcifying-brain thing. Cut me some slack if it's not funny; this is my first try:

Top Ten List of Why Infertility Is Like Alzheimer's Disease

10. Your doctor administers many painful and embarrassing tests, tells you he cannot give you a specific diagnosis and has no idea how to cure you, and then says that will be $500, please.

9. Your insurance company tries to avoid paying the $500 by saying that you have a preexisting condition that they don't cover. You say you're thinking of blowing up their building.

8. Your doctor instructs you to shoot very expensive, barely tested drugs into your body or swallow them although he has no idea what's actually wrong with you. And you do.

7. You wander in and out of the bathroom mumbling to yourself and pulling your hair out because (a) you can't remember why you were going in there, or (b) the fucking OPK stick is negative for the eighty-ninth day in a row.

6. Your body changes freakishly and you get fat or skinny, and you are either always too cold or always too hot, because (a) you are bloated due to the damned injections, or (b) you can't remember to eat.

5. People avoid you because they're afraid that whatever is wrong with you might be catching.

4. You curse loudly in front of small children because, at this point, why the fuck not?

3. Your husband starts giving you baths because he's afraid you might drown yourself in the bathtub if left alone too long on a bad day for either (a) your dementia or (b) your beta test.

2. Your family members give you ass-heady advice, such as "Take a vacation," "Eat more vitamins," or "Maybe more exercise will shake those plaques in your brain loose!" Fuck off, stupid people. I hate you.

1. They both suck.


Kitten said...

I am so sorry J. Don't know what else to say.....

April said...

I am so sorry. My heart goes out to you and all of yours.

Anonymous said...

We're never ready to lose our parents, but especially not when it seems they are still so young. My mom is 46 and has multiple myeloma - a cancer that usually effects people in their 70s or 80s. She's dying too, though we don't know when either.

My heart goes out to you. I am so sorry. There are no words that will make it better, I know. But I'm thinking of you.

Mandy (