When someone catches me limping or I mention the wheelchair of times past, people ask what happened and I have no easy answer. I usually say something vague about a car accident, which is about 75% a lie, just to change the subject because it is a long, boring, messy story and it doesn’t reflect on me very well. “Car accident” makes people nod and feel that they understand: there was a catastrophe and my body broke and it took a long time but I am more or less better. I might as well say “soccer injury”, it would have the same result.
So, hang onto your hats, here is the story.
I did get hit by a car. I was riding my bicycle and took off from a stop sign. A car rammed into me from behind – they hadn’t stopped! not even a pause! and I went flying in the air. I did a somersault and came down on my head, shoulder, wrist, and hip. I passed out and woke up to see two people bending over me – a lawyer and a nun. All my needs taken care of! I think someone took me to the emergency room. I was about 2 blocks from my co-op, and I have no idea what happened to my bike but maybe someone else from the co-op happened on the scene and took the bike home.
I had no helmet on and did not even own one. In 1989 or whenever this was, I don’t think I knew anyone who wore a bike helmet.
I ended up with some medical bills for xrays, a concussion, a sprained wrist, a very large bruise on my hip and some difficulty using my arm for around a week. The guy who hit me paid the medical bills. Then I lost his phone number and completely forgot his name. Oops…. My mom drove up and took care of me for a few days, maybe a week, as I was so addled from the concussion that I was shuffling around like a thorazined mental patient. I remember being really dizzy for about a week. I had to sleep on the floor as I couldn’t make it up the ladder to my loft where the bed was. I really don’t remember much of that time. The guy underneath me, Jamie, kept playing his electric guitar far into the night and my head would throb horribly. He wouldn’t stop even for a concussion, or my mom! JerkOLA!
A few months later I woke up and was unable to move my arm or neck. I got out of bed and went downstairs for breakfast (down 3 flights of stairs…) realized that the pain was getting so bad I could not stand to breathe anymore, tried to get back up the stairs. I passed out from pain on the stairs, and threw up, maybe not in that order… Someone took me to the student hospital, one of the most agonizing experiences of my life being bumped in the car. Again, my memory is fuzzy probably from the painkillers they pumped into me. End result: My shoulder was fucked up and so was my neck. A lot of physical therapy. A bunch of codeine and muscle relaxants.
After a few weeks of this, I could move normally again though my shoulder still felt like hell. The doctor got me to come in his office -the office with books and a desk, not the examination room. He asked me a lot of questions about my interests, how I spent my time, insomnia, waking up in the night, and then said the weirdest thing. “If you don’t become a very, very physically active person, you are going to be in big trouble.” What do you mean? “You lead a very sedentary lifestyle and you don’t sleep enough. You are just the sort of person that will have a lot of problems if you don’t make big changes. Your shoulder will never get better if you don’t listen to me. Quit school. Go become a ditch digger. Run a marathon.” I dismissed this as complete insanity.
Now somewhere around now I stop getting my allergy shots, just out of laziness and leading a disorganized life. A year or so passes. I keep getting worse and worse shoulder and low back problems: same thing, I sneeze, or bend over to tie my shoe, and suddenly I’m sort of frozen in one position and can’t move and am gray and sweating with pain. The doctor gets more and more frowny. X-rays never say anything significant. My sinuses start to freak. I get sinus infections that don’t go away for months. Then I get bronchitis and I get it again and again. I get asthma all of a sudden. At this point I wake up and go back to my allergist, who yells at me. Back on shots. 8 million different asthma inhalers – they keep trying all different ones. Theophylline and weekly blood tests. I can tell you that theophylline is the devil’s business. I was on so much theophylline and albuterol that I was trembling like a leaf in the wind. Meanwhile, I could not breathe. I spent more and more nights hacking up huge ropy wads of mucus while my girlfriend pounded on my back.
Keep in mind I am 20, 21 years old… forgive me, universe!
I believe this was also around when I was disowned by parents for the 2nd time (this time for being gay basically) and was trying to support myself in grad school. I worked 20 hours a week in the library and had benefits. I was in 2 classes. I started having trouble getting to class. My ex boyfriend forced me to move and I moved into a tiny shack where dogs had lived in the middle of a field of ragweed, maintained by the worst lesbian activist landlord in the world. I got a bad pap smear and had some really unnecessary surgery – a whole other story but I nearly bled to death over a week in my squalid, allergenic shack, calling the gynecologist’s office every few hours (“are you bleeding more than a teaspoon an hour? because that is normal” Jesus fucking christ lady, could you put me through to the doctor? Because it’s been 5 days and ever single towel and article of clothing in my house is crusted with blood…) I had to quit my job in the library, because I couldn’t make it to work most days. I started stripping – in 1 horrible, smoky night of albuterol abuse in the sleazy club next to I-35, I could make as much as my whole week in the library. The other strippers didn’t press me to do drugs with them because they figured I was already high from the way my hands shook. The low back problem got worse, but I could do the thing where I kill myself one day, and then limp for a week. I’m sure I didn’t sleep more than a few hours a night, most nights. Oh, I think I left out the bouts of mystery illness, which were diagnosed as Not Chlamydia and Not Gonorrhea, but I could not walk from pain, and during pelvic exams, screamed and passed out when they wiggled my cervix, so, got diagnosed with viral Pelvic Inflammatory Disease of some unknown kind, though I had no fever.
Thus goes the slippery slope to hell.
I moved with my girlfriend from Texas to Oakland. This is the period when I got the mystery Pelvic thing again an d also some sort of low back problem that I still don’t know what it is, but it recurs and I just call it sciatica. When it happens, I have difficulty moving my right leg forward, so I limp with the right leg. (The left leg limp is from the left knee.) I also still couldn’t breathe, but had a nebulizer which was beginning to help.
Are you bored yet? I was. If at all possible, I thought about anything else other than this crap.
If you go to the doctor with this kind of history, as some of you may know, and especially if you are poor:
a) they figure you are a drug user and lying
b) they write you off immediately in many other ways
c) you are presenting with too many symptoms at once, and doctors can only deal with one set at a time. I learned it was best to go one time, and complain about asthma, another time to a different doctor, and talk about my back, and a gynecologist for the pelvic thing. Nothing got resolved, but it helped me look less like a hypochondriac lunatic which meant they treated me more nicely.
d) Any of these things, the doctor will just tell you “avoid stress” or at worst, tell you that you are suffering from hysteria. Yes, I was told that I had hysteria. Can you believe it?
e) did mention it helps not to be poor?
f) Also, don’t cry when you talk to the doctor, even if you are desper
ate, have been waiting for the appointment in terrible pain and dysfunction for 3 weeks.
It is only in the past few years that I managed to talk to a doctor in a doctor’s office without randomly bursting into tears just from the trauma of the whole horrible history of bad doctors.
I know there are crazy, bad patients, but there are also crazy, bad, lying, ignorant, cruel doctors, because I have met them.
I got better especially with the asthma but my shoulder got worse. I got temp jobs and then regular secretary jobs. It’s not like I stopped doing anything with the shoulder (such as playing excessive video games, mousing, or whipping D. with a heavy flogger) or began exercising. Well. *wrenches mind away from dungeon and memory of ex-girlfriend in leather sling and chains* Anyway, right before my COBRA ran out I got rotator cuff surgery on my shoulder which might have been a big mistake. But I could no longer raise my arm above my head. Who knows… All sorts of badness then happened… My shoulder got better but my back and leg got worse and then the other leg started just collapsing under me. I would take a step and the leg would just buckle. No idea there. I lost my job. That was when they started talking MS….
I just deteriorated… exhaustion, complete exhaustion so bad that sometimes I could barely turn over in bed. I could do it but everything was a struggle. Some days I was walking around, some days I was in the wheelchair. After collapsing on the campus of DeAnza I ended up in Valley M3dical Center being kicked around from department to department having conversations like this: “I can’t walk, what am I supposed to do? My legs don’t work.” “They look normal on the MRI and the xray. Without a diagnosis, we can’t give you a wheelchair. You can’t get a diagnosis until you see neurology and they don’t have appointments and won’t talk with you until 9 months from now.” “But I CAN’T WALK.” (why couldn’t I just rent a wheelchair? I didn’t know you could rent one for like 25 bucks a week, and no one told me. They made it sound like you had to have a special prescription.) At some point a social worker or nurse suggested in a roundabout, kafka sort of way, that it would be illegal and bad if I just wheeled myself out of the hospital in the one I was in. Bing! The lightbulb went off and I stole the chair, as instructed.
Later at D3Anza a guy who was paralyzed from L3 down or something, gave me his old basketball chair. I cried, it was so much better. If you ever know an old person who starts to use a chair, please, please, get them a light framed GOOD chair, it makes a huge difference. They have things you can attach to the wheel rims that are like big padded knobs if you have arthritic hands. Also, get them leather motorcycle fingerless gloves.
The new, good chair and my parents buying me a pickup truck meant I was now mobile and independent, even if I could not walk much. I could drive, and haul my ass out of the seat and, holding onto the truck’s side, sit on the tailgate and remove the wheelchair. Now you know why the bed of my truck is all scratched up. My arms got buff. It is actually a very good thing my shoulder was getting better by that point. Maybe the surgery was necessary, maybe the 6 weeks of not using the arm and being strapped into the continuous passive motion cyber-girl torture machine fixed it?
On the advice of D’s friend Alexis I went to her rheumat0logist, who did not think I was crazy and listened to my whole story. I think I typed up the details for him. From poking me in tender points and hearing of insomnia and the whole history of rotten health he told me I had fibr0myalgia (FM). He went down the hall and xeroxed a giant binder full of articles for me on what it was and what to do. It used to be called “psychogenic rheumatism” which basically meant you feel like shit and no one knows why and maybe it’s all in your head. In the 80s at some point the Amer. Assoc. of Rheumat0logists decided it wasn’t all in your head, but instead it had something to do with – as far as I understand it – If you don’t sleep for at least 4 hours uninterrupted, you don’t get to a certain stage of sleep in which your muscles repair themselves when minorly damaged. So minor damage turns into major damage over time. Apparently, if you sleep deprive a person, and they’ve done this in military experiments, anyone will develop the symptoms of FM). But it is reversible and if they can fix your sleep and you exercise enough, you will get better.
So, in retrospect, I realized the student health center doctor from my original shoulder problem had been right. He knew that I was on the road to FM, thus his advice about giving up books and turning to ditch-digging.
I did a rotten job of rehabbing myself and it took a long time. I suck at exercising. I credit the sleeping pills with fixing me. I would swim a little in the YMCA warm pool and do leg lifts and be walking for a little, and then I would do some dumb ass thing that would mean I was crippled again.
It is very boring to stay in bed and in fact for FM it is the wrong thing to do. The welfare hysteria-diagnosing doctors told me to stay in bed flat on my back for weeks. But about it being boring. Even if going out might cripple me more, and might be exhausting, and I am in pain as I hobble around in the cafe and post office or am wheeled about the museum, it is SO much better than being trapped at home.
The hospital warm pool was like heaven. I did a lot of walking in there. It is hard to walk again after not walking right for a long time. Even a week or two, I think, means you have to remember to make your gait right. Balance is just off — off in a weird way unlike being dizzy. Little muscles have to be moved with conscious effort – you have to THINK about it and do it on purpose, like breathing while doing yoga.
Meanwhile I was super annoying to everyone around me. (Minnie can attest to this. I should mention that somewhere in this history she moved to CA partly to take care of me. However I felt that I was also taking care of her on some level, despite our unwise involvement with F@k1r and C@rl@, because in TX she was strangely fucked up and calling me all the time in a semi-suicidal manner. (Can you believe I’m talking L33t to avoid googlebusting?!) Anyway she was helpful.)
Also in this time of wheelchairing was my involvment with the kids next door who I wrote about last March or so.
more in a sec, mars lander is landing!
okay that was just too exciting. I love the sound of nerds on walkie talkies. Oh mission control, let me be your geeky lapdancer…. *sigh*
whump is all red with delirium. “I’m just giddy!” he says like a prom queen thanking her committee. NASA signs off.
I think fondly of the wonderful lovely pathfinder panorama, and expect great things.
whump is ranting on in great excitement about “The Martian Internet”.
Back to our regularly scheduled broadcast.
I got some work tutoring, I kept taking classes, I kept making zines, but meanwhile me and SK, our relationship had really just gone away. D. and I were more or less serious but from a distance as she lived 2 hours north and was semi crippled herself from asthma. She did not want to have babies with me either, she had already done that once in life and couldn’t face it again! SK and I finally fought… he started dating some windsurfing girl… he moved out… well… I felt that I was on my way to getting better. It devastated me that he would not wait for me… but then we fought over the future too. I guess I should not go into it but he wanted to wait many years before any sort of baby-making and I did not want to wait. I wished he would marry me and commit to helping me get better and would support me whil
e I did it. He could not deal with the thought of me as a burden (as I had been for the last year of our living together). I didn’t want to wait till 35 to have babies because of my mystery pelvic inflammatory disease and the possiblity of ectopic pregnancy or infertility. And indeed several years ago I did have a horrible ectopic pregnancy, which if you don’t know what that means, it is that the embryo implants accidentally in your lumpy, scarred fallopian tube and basically explodes and kills you from peritonitis unless someone removes it.
I ran off, or wheeled off, and almost immediately married my old friend m. who was happy to gallantly open doors for me. Next to my cane and wheelchair, he with his leg-dragging limp, I think he felt like superman to the rescue. As I got better, he got worse, and I felt like he preferred it when I was sick so he could be the healthy one in comparison… I got better and better… it helped to have INSURANCE … holy fuck how that helped. I worked every chance I got… I am not really a flake despite what everyone thinks. Do you know how many awful temp jobs I have worked… and how many humiliating jobs I have had… the sheer number of jobs I’ve GOTTEN is amazing. I am an expert on getting jobs. When I started missing too many days from sick time it often turned sour but I never got fired. Last year’s flaky unemployment getting and 8 hours a day of babysitting was the first time I have been jobless and healthy.
Chronology is hard but let’s see. In early 1997 I gave away my wheelchair after not using it for many months, over 6 months. It was a very scary thing to do. I walked with a cane still. Sometimes I needed it, sometimes I didn’t but I always had it. The metaphor “like a crutch” is an accurate one. It is scary not to have crutches or cane when you are not sure if you need them or not. A hard transition to make. I’d carry a folding one in my backpack. I left my ex husband. Rook moved in with me almost immediately. We got married a year later. When I had to stop taking sleeping pills while trying to get pregnant or while I was pregnant, Rook would sing me songs and gently pet my hair and massage my head to help me go to sleep. He was very soothing. I got better and better jobs. He taught me stuff and always was there to help me stay out of the secretarial ghetto.
Every winter I would end up needing the cane or being on crutches for a while. 2000: after being more or less healthy for a long while and successful preganancy, I went hiking on hills with a sore knee and ended up on crutches nearly all winter, to my great despair and Rook’s great inconvenience. Moomin liked to play with “mama crutch” (horrifying words to hear from my child’s lips, as I had often imagined hearing them, and hoped to hell I would never hear him say “mama’s wheelchair” until he is 65 or so and I am 95.)
Last winter, no crutches (except that one week from twisting my ankle, an actual legitimate injury and I got better just like a normal person). This winter, no crutches!
My knee ached all today and I had to put my leg up and stop walking around for trivial things when I got home, and my sciatica acts up now and then, but it is NOTHING to the past. I am fine now. I am not disabled, I never feel the asthma unless someone smokes or I get bronchitis and then it only lasts for a month or so. I get my allergy shots like a good little girl. I don’t exercise worth a damn, but I should. I do sleep.
I hope that explains how I got crippled, how I got better, and why I mutter “car accident” and look away pensively.