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In the fall of 1997 I had a husband I loved and a two year old son. My husband drove a truck for a living and was gone for a week at a time. One Wednesday evening I decided around five pm that I would drive out to my mother's house, which was ten minutes away in the country around my home town. I admit that I was not watching the road as closely as I could be; I had one eye on the toddler, whose mechanical aptitude had shown itself by his figuring out how to open the latch on his car seat. I looked back at him in the rear view mirror, looked again at the road, and saw someone doing something utterly unexpected in the road. I think my sheer “They are not PARKED on this road?!” reaction cost me valuable time. I was traveling forty miles an hour (the speed limit) and slammed the brake pedal to the floor. I did, unfortunately, contact the other car. Not hard, but there was a small dent in the bumper. As I looked at this, I realized my foot and ankle really hurt. Really, really hurt.

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I was taken to the emergency room where they diagnosed a sprained ankle, and sent me home. I knew better. You see, I've inherited loose joints, and by the time I was 25 had sprained my ankle so often that I kept elastic bandages in the cabinet, an ice pack in the freezer, and more or less just rolled my eyes and said, “Here I go again” when I twisted it and got the familiar ache. This was not a sprained ankle. The foot kept telling me that something was Very Wrong inside it, and it was so puffy I couldn't get it into a shoe. I visited the podiatrist that had taken the plantar wart off my foot, and he took X rays. I had suffered a Lisfrancs dislocation.  Surgery was scheduled.

Recovery from the surgery was hell. I had a screw in my foot and external pins, and a non-walking cast. I also had a spouse who could not take more than two days off from work to help take care of me, and a toddler. My parents took my son for those first six weeks, and a friend stopped by every morning and left me a peanut butter sandwich, refilled my water bottles, and made sure I hadn't fallen down. I still can't eat peanut butter without remembering that time. I probably walked on my foot sooner than I should have, but I was tired of peanut butter, I missed my son, and was tired of sitting down. I'm not a sedentary person by nature.

Three weeks after I graduated to a normal shoe with good arch support the three of us were walking in the mall, and as I took a step I felt a pop and spreading sensation in my foot, and pain. I grabbed my husband so that I wouldn't fall down. “I think the repair failed,” I gasped. I was half-right. The screw had stripped and slipped out, but the joints it was holding appeared to be in alignment. As having metal in my foot proved to cause me intense pain during cold Indiana winters, we made an appointment to have the screw out.

By this point my husband was working for a different trucking company. We couldn't afford insurance on me and our son. Our son was covered by the Indiana program that insures all children under a certain income level, but we had to bear the cost of my surgery ourselves. We spent a few years paying it off. We both knew we couldn't afford to do anything else, but it was fixed, right?

Two years later my husband had a wreck and wanted to stop driving trucks. He went back into security work, but it was 50 miles from where we live, and only paid eight dollars an hour, and there were no benefits. We considered it incredibly decent of them when they held his job for him when he broke his ankle. When the job opened up with Triple A, we considered it manna from heaven. Thirteen dollars an hour! But we can't afford the benefits.

Today is payday. When I go to the bank, I will take out two hundred dollars of the probable six hundred in there. That all goes for gas to take my husband the hour's drive each way to work.  They want two hundred dollars a month just to cover him. To include me would be eight hundred. We prefer to keep the utilities on and eat.

Around the time he started at Triple A, the foot began to hurt again. We thought at first it was due to my having sprained the ankle on that side so often that the tear in the ligament can be felt through the skin. We paid  $150 for six minutes of an ankle specialist prodding it and pronouncing that it was too loose and slipping out of alignment. He prescribed a brace. (This is, incidentally, The Best Ankle Brace Ever IMHO.) But I had noticed other things beginning to hurt too. My hip and pelvis had begun to complain, and my spine began to twist. I didn't have lumbar scoliosis as a teenager. If I see a chiropractor twice a week, I can live without hip, lumbar, and sacroiliac pain. Of course, we can't afford $250 to pay a chiropractor either.

Now, I have the joints in my foot dislocated again. The tear is still in that ankle's supporting ligament, and my knee is showing signs of instability. I frequently cannot stand up easily because my hip is out of alignment, and deal with muscular spasms all through my pelvis and lower back. The multiple pregnancies left their mark too; my pubic symphysis is loose, and frequently dislocates. My abdominal muscles are separated and stretched, but crunches pull on the loose pubic symphysis, and it hurts like hell. The loose abs probably don't help my back pain at all. I have dysmenorrhea, and spend 36 hours a month weeping and writhing, or stoned and sleeping. And after the fifth pregnancy, I developed fibromyalgia, and that never shows up alone, nor does it ever leave you alone. Not only every step I take but every move I make is made with pain edging it, even on the good days. The good days are the days it's only about a four or so and I can ignore it. But it is never gone.

I cannot hold a job.  When we put the computers in a room of their own, mine wound up four feet from the toilet, and sometimes the IBS hits so fast I still don't make it. Sometimes the mental fog of the fibromyalgia leaves me staring helplessly at the can opener, having forgotten how to work it. Right now I am preparing for Hell Week, when I won't be able to cook or do the laundry because I will be unable to lift or stand for longer than two minutes at a time. Not that I stand well anyway. Tonight when I walk I am hobbling on one foot, able only to bear weight on the heel. When the muscles in the sole spasm, it will help, though it hurts, because it will support the dislocated joints.

I'd love to go to culinary school, or perhaps go back and finish my degree (I was a double major in psychology and sociology, with a minor in religion), and get my masters and start my own counseling practice. But I can't. Not until I can walk without so much pain, not until I can reliably sit and stand, not until I can think clearly. Until I get some form of help with the costs, I can't pay for the Lyrica that will help with the fibromyalgia pain, or get the testing done to confirm the cognitive changes that worsened my ADD. I can't get a sleep study done to see exactly what the hell is going wrong with my sleep patterns. I can't go see the chiropractor to make my pelvis behave, and I won't get the surgery to repair my ankle ligament, or to fuse the problematic joints in my foot to make the foot issue resolve itself for good.

And I'm not alone in this. My husband has worked hard all his life. In a prison riot while he was a guard, an inmate broke both his kneecaps with an oak broom handle. His neck has a bulging disk from the padlock in a sock that hit it at the same moment. He has fallen several times in icy parking lots as a trucker, and years of driving didn't help his knees at all, nor did standing around as a security guard. Now we pray for the days when he doesn't have to change a tire and get down on his knees. He doesn't do laundry; that requires walking on stairs, and his knees just don't do that very well any more. He can hear the right one grinding. We can't get that fixed either. Or his neck. Or the shoulder he got shot in so many years ago. Or the elbow that causes him so much pain.

He takes a lot of ibuprofen, and endures. I take tramadol and endure.

And we are both writing and calling. Because we will die on this hill. We will remember who voted which way. Use up the majority, use up all the political credit, I don't care what it is that happens. We just need health care that we can access. That's all. I don't forget about the fight. I remember it with every step I take.

Extended (Optional)

Originally posted to Alexandra Lynch on Thu Aug 20, 2009 at 09:51 PM PDT.

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