Sunday, September 21, 2008

How I am

Last weekend, I drove down to CT to celebrate the wedding of my friends Anna and Heidi. Anna and I have been friends for a long time and she has helped me through some difficult days. I love her to pieces--and Heidi is wonderful, too. We always have fun. They were married last month in California, but I could not go. I was too sick.

After the reception on Sunday, which was low-key, creative, family-oriented, all-girl, and lovely, Anna and I (that's us with Phoenix, above) got to spend some time alone together in the car on our way to her sister's house--her sister who recently survived an amazing bout with a rare cancer.

Anna is one of my closest friends, perhaps my closest female friend, in a lot of ways, and yet we haven't been able to see each other much or talk much this last year or so. She lives in New Jersey now, so it takes some effort to get together. And I have been too tired, and for many months after the accident, too debilitated.

In the car, she said, "How are you?" and she asked in such a gentle way, I knew she wanted a real answer.I struggle with this question. I struggle to answer anyone honestly, partly because I can’t always tell how much people want to know, partly because I feel so confused by the tangled thread of the truth that I can’t get at an answer that can be explained quickly in any linear narrative way—let alone in one word--and partly because I often feel so much better when I’m around people who care about me that I feel cheerful and then I can’t remember how bad things are. It’s like living in a dimly lit room, but then having someone light a candle and then turn to me and say, “How is the light in this room?”

It’s terrific now, thanks!

But then they leave…and it gets dark again, and they don't understand that this is happening to me because I haven’t told them. So they leave, thinking I’m fine, when really, I’m not.

There’s also a large component of stubborn adherence to my rural Maine upbringing and my mother’s fierce determination that one should never be a victim, which translated to my child self meant one should never have needs or—God forbid! Express them. One doesn’t complain, one sucks it up, no matter how extreme the condition. Add to this a high threshold for suffering and pain and an even higher expectation of what I should be able to tolerate without complaining, and I get very confused by this question, “How are you?”

But, I had made up my mind before I left for the drive down to the reception that I would be honest with Anna about my health if she asked. I didn’t know what the words would be, but I knew I would try—and so I made a few mental notes, a crib sheet for describing unwellness, so that when the light came on I wouldn’t forget about the shadows.


“How are you?” she asked.

And I told her that the fatigue was still very bad, but that other things had improved. The migraines, the vertigo, the allergies, a handful of other things have gotten much better or gone away entirely. But the fatigue, while somewhat improved, remains a big problem. And now there is this mysterious and dramatic weight gain that seems to be an unstoppable force of nature, there are the feelings of helplessness and discomfort that go along with that—the irritating inability to find clothes that fit or feel attractive, the yucky swelling in my face and hands—along with the pain.

“It’s very difficult for me to walk or stand,” I told her. And it’s not just my knee—that injury has healed mostly—it’s like when I stand up, there are lead weights on all my joints, especially my hips and sacrum. It feels like there is extra gravity pressing on me and it makes it painful and difficult to function—or to exercise, which I’m sure doesn’t help with the bizarre piling on of weight.

To my great relief, Anna said she’d been having a hard time physically, too. I want Anna to be happy and healthy always! And she looks fit and attractive as ever. I was relieved because she got it. Because she wasn’t living on the outside of the glass box I feel I am always in, with the healthy people on the outside not comprehending what it can be like to be plagued with illness, particularly the kind of illness that has no name, no successful treatment, only Byzantine corridors filled with doctor’s visits and blood work and attempts at therapies and questions that only lead to answers that create even more questions or that result in dead ends.

Anna’s health issues are her own so I won't describe them, but we were able to say, “me, too!” to one another here and there, and in this feeling there was great calm for me. There was dismay that someone I love has struggles, of course, and there was also comfort in that we could talk with one another about it—and that perhaps we could help one another find answers.

Her sister took steroids as part of her cancer treatment and experienced a weight gain that should have gone away by now, but won’t. This is very much like what happened to me. Last fall, I saw a psychiatrist about my severe PMS depression. He prescribed a tiny dose of Prozac—one quarter of the smallest does usually prescribed—and in the six weeks I was on the medication, I gained two cup sizes in my breasts, my hands swelled to the point that I could no longer wear my rings, I gained 15 pounds—and I got no relief from the PMS.

The psychiatrist said he’d never seen anything like it. “That’s impressive,” were his exact words.

I went off the Prozac, but a year later, I do not have my body back.

I saw my primary care physician (PCP) (who is actually a Physician’s Assistant) who tested my thyroid, my sugars, my iron levels, and found nothing wrong, so she never followed up. I pursued another primary care physician who suggested I take B vitamins. (I did. It didn’t help.) I tried a gynecologist thinking she’d know something about hormones. She put me on a birth control pill, which did help with the depression, but which put my libido into a coma and left me feeling generally sort of odd. I also put another almost a pound a week on my body during the 12 weeks that I took it.

After eight weeks, I went back to the gynecologist to express my concern about the weight. It was February. She said it was just “weight from the holidays” and not to worry. (What holidays? It didn't even occur to her that I don't celebrate whatever the hell eating festival she thought I did.)

[9.26.08 There's more to this post, but I'm having technical difficulties and haven't been able to get it live yet. Stay tuned.]

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