Making Disability Visible

I'm speaking from experience, people, having had most of these lobbed at me one time or another. Please feel free to add to the list in the comments section. 1. "When is the baby due?" I'm not pregnant, you douchebag. I'm fat. If I were pregnant, I'd probably be prancing around telling everyone and her goddamn sister about it because that's what we do in our society. Or, if I were pregnant, and afraid I might lose the baby, maybe I wouldn't want to talk about it. In any case, if I were pregnant, and you haven't heard about it yet, wait for me to talk to you about it. Otherwise, STFU…
My fitness program the last 3-4 months - or reasonable facsimile thereof... Monday: go to gym, half hour on elliptical, half hour doing weights routine picked up at last stint at physical therapy for excruciating neck pain developed over several years due to chronic migraines. Tuesday: spend day writing bills for mom, wrangling with health insurance company and/or health care providers over some mix-up regarding payment for service provided six months to a year ago. Tuesday evening: receive phone call about new urgent health care crisis for mom. Spend rest of evening phone conferencing and…
The whole month of October has gone by, and none of the things I promised myself I would finally get around to writing about this month have appeared on my blog. They haven't even made it out of my cranium into rough draft form on my computer. I didn't even manage to get a post up exhorting you all to open your wallets for the good cause of DonorsChoose 2009 Social Media Challenge (though there's still one day left should you be so inspired!) I managed somehow to get my giving page set up (and a few of you stumbled across it and donated, with absolutely no help from me - bless your hearts…
Because you do not want them to think you're crazy. Also, do NOT put on that hospital nightgown, no matter what they say. Mind Hacks gives us another perspective on patriarchal norms for female appearance. Don't run out to the convenience store without brushing your hair, make sure to always dress well, or else you'll be taken for a CRAZY LADY! And you wouldn't want that to happen. Oh, never mind. We already know all teh wimminz is crazy anyway. Mind Hacks post found via this David Dobbs post.
Whenever I go back home to see my mom, I usually spend some time visiting with her cousin D., who lives in the house across the street from my mother's house. D. has spent a good many years taking care of his elderly mother, my great-aunt. I have known D. all my life. As a child growing up, he was one of my elders. As a young adult, coming back home now and then for visits, I often didn't know what to say to him when our paths would cross, thinking I didn't have much in common with him. Now we are both intimately involved with the care of our elderly mothers and this brings us a…
I don't particularly enjoy having needles poked into my scalp and neck and shoulders and temples and I especially don't like having them poked into my forehead just above my eyebrows. Yet I allow my neurologist to turn me into a pincushion every three months because regular botox treatments subdue my migraines, and nothing else does. I like my neurologist; I trust him, and we have a good doctor-patient relationship. On this last visit we discussed my current medications and how they're working, and agreed that I could probably start scaling back one of them. My neurologist is at a…
Mr. Z and I went to see "Quantum of Solace" last Friday night. The cineplex was packed and teeming with Twi-hards. I went into the bathroom and found three of them before the mirror, primping and fixing their carefully coiffed hairdos. And what hair they had! Long hair, thick hair, shiny hair, healthy hair. It was almost painful for me to watch them, knowing full well how they must take for granted their luxurious heads of hair. Because it never occurred to me in the past that my hair would change in any substantive manner - at least not until I got really old and gray. When I was…
There's been some quite lively blogging recently over at Abel Pharmboy's pad. Of particular note was the live-blogged vasectomy: Anyway, as a medical blogger, I will try to liveblog the process from my Palm Treo 700p at the Hospital-That-Tobacco-Built. While I hope it will distract me and relieve some of my anxiety, I'd like to post it on blog as a public service to other men who want to be selfish and make their wives have tubal ligation after the mother of their children suffered through birth(s). (I've blogged on PharmGirl's complicated C-section experience and having my scrotum hacked…
Hmm. I seem to remember this thing called blogging...used to do it all the time...lo these many weeks ago. Let's see if I'm able to get started again. The past month and a half I've been taking care of mom and working with my siblings to arrange everything for her to move into assisted living. Let me just say it takes a great deal of time and emotional energy to accomplish something like this, especially given that my mother still lived in the house she was (literally) born in. All along the way, I kept thinking (and my siblings kept saying), how in the world would we ever get this done if…
Earlier this month, my siblings and I were out on a daylong excursion with my mother. It was lunchtime, and we decided to go to local restaurant for our meal. We pulled into the plaza parking lot and my brother headed for the handicapped parking spot near the restaurant entrance, as my mother has a handicapped license plate. She can't walk very far at all without getting fatigued. Unfortunately, the one accessible spot was taken. By a car with a regular license plate and no handicapped sticker. Was I ever pissed. But I became even more angry when the car's owner came bounding blithely…
Posting will be sparse to non-existent over the next week, as it has been the past few days. This is because I'm hanging with Mom for a week or so. Actually, I'm hanging with my mom and my sister at the beach at Cape Hatteras. Sister and I have spent months planning this undertaking. Cape Hatteras is a place very special to my mom; it was a beloved vacation spot for her and my dad, and it is more special to her since he passed. She hasn't been back there in years, and her failing health has made it questionable whether she might be able to undertake such a trip at all. So it's very…
Here's the problem: I've got migraines. So I take topamax. Topamax helps decrease the occurrence of daily headache and decrease the frequency of migraine. But topamax has side effects. A really bad one is cognitive confusion. This manifests itself in several ways. One is during speaking - I'll be just on the verge of pronouncing a noun and will suddenly feel as if I've been choked - the word is gone. This is not your usual "oh, I can't think of the word I want". The word is there, it's about to be pronounced, and I have the mental sensation of having it ripped out of my brain. It…
The word of the month is "balance", or so they tell me for the upcoming scientiae-carnival. I have been thinking for days about what I could write on this topic. What does balance mean to those without careers? I can talk about stuff from the past, how I made choices about balancing career and relationship over a period of several years. First there was the decision to leave my life in Philadelphia and all my friends to move to Kansas, because I wanted to continue living with Mr. Zuska. That was a hard decision, but I was able to find a job that represented a significant career advance…
I want to go to California and eat cheese. From the LA Times: The benchmark for California cheese is higher than ever in a market that finally has caught up with a few pioneers who were way ahead of the curve. Both the flavors and types of cheeses are constantly evolving. From the highest end (an elegant triple crème made with cow's milk crème fraîche stirred into fresh goat's milk curds) to the more accessible (a creamy farmhouse sheep's milk cheese drizzled with a little olive oil and sprinkled with sea salt and cracked black pepper or a buttery, rich, handmade cheddar) -- cheese-wise…
Warning: this is an intensely personal piece and I'm not sure why I'm posting it at all, except that some people I know have been encouraging me for awhile to write more about my illness or disability in general. So blame them. (By the way, you aren't supposed to read this and feel pity for me. Just understand better what it's like to be chronically ill - and maybe experience your own health a little more sweetly, or take comfort if you are ill, too.) I got up much earlier than usual this morning, so that I could be at the hospital imaging center by 7:45 a.m. I was scheduled to have…
I don't know if you've missed me, but I've missed blogging these last two weeks. However, my body has demanded a period of healing and I have acquiesced. The neck and shoulder are screaming less these days, and tomorrow I get my next botox treatment for the migraines, so I'm thinking by next week I should be able to tolerate some computer time again. It's been very, very frustrating to have to submit to the limitations of my physical body, even more so to admit that I feel less mentally sharp because of being so worn out. This is the worst I've felt in a long while. I don't like it! If…
Penny commented that today is Annie Jump Cannon's birthday. I have long known of her as a famous astronomer but I did not know that she became deaf as an adult. Thanks, Penny, for providing the link to Disability Studies at Temple U. and the bit about Annie Jump Cannon for her birthday today. Do visit the DS-TU page; there is a marvelous photo of Cannon and a great short little bio. Her biography at 4000 Years of Women in Science is here. Also see this site at Wellesley. Great photos there, too, and a link to more info.
Ask a Science Blogger asks: UPDATE: THIS IS SUPPOSED TO BE THE OCT. 27TH ASK A SCIENCE BLOGGER ANSWER What's the most underfunded scientific field that shouldn't be underfunded?... I can't presume to know the definitive answer. But I can give you one answer: a field that's not even on the radar screen for nearly everyone. We all know women routinely go to see their gynecologist, and women's reproductive health is an important issue. What's the equivalent for men? Do you hear of men routinely going to see their andrologist? The closest thing they have is a urologist, and that's just not…
So, you ask us bloggers this week... ...What's the best science TV show of all time?... For real-life science shows, I guess I would have to pick NOVA. This is because Mr. Zuska, who is not a scientist or an engineer, will actually sit and watch Nova and become absorbed in the program and occasionally ask me questions about what they are talking about. He once watched an entire program on string theory called The Elegant Universe. He even watched part of it a second time. I watched it with him but I had to cover my eyes when the little vibrating string graphics were on the screen because…
My fellow SiBling Dr. Charles has written a post about women and breast cancer that is a gift. Skip the pink ribbons and read what he's written. That dude can tell a story. Dr. Charles quotes Audre Lorde from The Cancer Journals on women with breast cancer as warriors; the patient he's examining has read Lorde and has foregone reconstructive surgery or a prosthesis after her mastectomy. The post ends this way: Regardless of whether a woman replaces that which has been taken from her or decides to go without, she is a noble warrior, tragically drafted into a bitter war. A good war, worth…