One of the things that is hard to understand about my life is how much it has changed.
As a child, I apparently ended up in the doctor often for minor things like colds. My mother still teases me about this when it comes up. I don’t know if this is connected with any of my medical issues; it may just be that I was a spectacularly whiny kid.
I started playing soccer when I was 8; it was quickly discovered that most of my talent at playing the game came from two things – my physical quickness and my mental agility. Physically speaking, I was short and not especially athletic. I played goalkeeper every season after my first, and different coaches gave me different field positions. I was, oddly enough, the center forward when I wasn’t playing goalkeeper for 2 years – a position usually reserved for someone with a lot of speed – mostly because I could set up break-away plays for the left and right forwards. I played center half even though that is the position demanding the most athleticism, for my ability to get a ball out of a crowd and again, my ability at setting up break-away plays and finding open teammates. I did play the season after I destroyed my knee, and while at first I was very hesitant and unsure of myself, by the end of the season I was one of the better players on the team.
When I was 12, I was diagnosed with asthma and plantar fasciitis in the same year. Plantar fasciitis means that the connective tissue in the sole of your foot gets damaged and inflammed. In my case, I have very high, very flexible arches, and thus the arches move farther than the tissue is able to sustain. This means that I don’t just irritate the fascia, I outright tear it. My asthma was mostly exercise induced, and has varied in severity throughout my life.
My sophomore year of high school was a bad year for me. I strained ligaments in both ankles playing soccer, badly enough to be laid up for 6 weeks and have some permanent damage. A car accident my freshman year came back to haunt me in the form of back pain and spasms. Finally, in the spring, just a few weeks after I got out of physical therapy for my back, I tore up my left knee. I had a bone bruise, and a small tear in my ACL. I was in an immobilization brace for 6 weeks, and unfortunately they did not start me in physical therapy immediately when I got out of it. Because of this, the muscles were not re-developed evenly, and my kneecap began sliding out of the cartiledge ‘track’ it belonged in and ripping up the edge of it very badly. To this day, I have terrible trouble with that knee.
There were a bunch of small injuries over the next year, but nothing major.
I went away to college at 16. Weeks before my 17th birthday, I got very sick – terrible viral infection. It aggrivated my immune system so severely that my body began attacking my joints. Because of this, I started having trouble eating – I could not close my hands, so holding utensils was out of the question. I ended up fainting in class, which separated my right shoulder.
Two months after I turned 17, I was in a major car accident. I lost control of my car on the highway, going about 70 mph, and had a side-on collision with a pickup towing a horse trailer (fortunately empty). I dislocated my left shoulder and tore a muscle in my shoulder/upper back, and injured my lower back, mid back, and neck. I was unfortunately subjected to a physical therapist who wouldn’t listen when I said she was hurting me, which I am certain made the shoulder injury worse. If that happened to me now, I’d have the chutzpah to take her down a notch, but at 17 I trusted medical professionals.
The left knee and shoulder were problems on and off for the next few years; I dislocated my left shoulder repeatedly. The right shoulder was less of a problem, but still not good. I went through many, many sessions of physical therapy for that left shoulder, and for that matter I don’t think I could count how often my left knee has sent me in to physical therapy. I was put on vioxx for a while to control the inflammation in my knee, after ibuprofen and aleve stopped working. Vioxx worked so well for me that it grieves me that it is no longer on the market (though given the side effects, I am absolutely certain it is for the best).
Just before I turned 20, I started taking a yoga class. I needed a PE class to graduate, and with my knee and shoulder being what they were, this seemed like a relatively safe class. Particularly after I emailed with the professor and was assured that he would very much like to work with me to design modifications to the various positions so that I could participate as fully as my body would allow. During that semester, the fall of my senior year of college, there were rumblings of operating on my left shoulder to attempt to stabilize it, as physical therapy had failed repeatedly. However, it was yoga that saved the day – through an intensive program that eventually meant hour long workouts 5 days a week, my shoulder stabilized in a way that made surgery irrelevant; the results were better than could have been expected of even a highly successful operation.
I graduated from college the following spring at 20, and got a job at an amusement park for the summer, because I was headed off to grad school in the fall. I kept the job for the holidays, and it was over Christmas break that the next injury in my long story occurred.
One night, the ride I worked on stopped working (a minor mechanical failure) so we had to evacuate everyone. In most parts of the ride, we would have someone in the water pushing the boats back to areas that people could exit, but there was a section in which this was impossible. To get people out of there, we would stand with two employees having one foot in one boat, and one foot in another, handing the people across. I’m sure you can imagine, it takes a fair amount of force to hold the boats together with your feet; there is nothing else securing them. I dislocated my left hip and pinched a nerve in my back.
My left hip is the third piece in the triad of really bad joints.
I more-or-less recovered. I had taken up ballroom and latin dancing before the injury started, and continued once I was cleared by my doctor. I apparently was a startling natural talent, and people always thought I’d been dancing far longer than I had.
It was around this time that my shoulder began acting up again – my doctor suggested that surgery might be in order, so I was sent to an orthopedist. The orthopedist checked several of my joints and declared me hypermobile, and stated that surgery would be useless. I wish that he had told me this hypermobility meant that I needed to protect my joints! Ah, the damage that could have been prevented. Well, I suppose I’d done the worst of the damage by then, but…still. If only he had said.
After two years in grad school, I had come to the conclusion that I was in the wrong program, so quit and moved back to my parents house. I worked as a bartender while I was there, a job I absolutely loved. I suppose you could say I was lucky; for a couple years, the injuries were all the things I consider average little day-to-day things – mild sprains, subluxations, so on.
I was certain I was going to go back to school after I left grad school, the only question was what I was going for. I narrowed it down pretty quickly to law school or med school, both things I had thought about since I was very young.
About 4 months into this, I decided I was going to med school. As my major had been in the humanities, I was lacking in the sciences, so I applied to a local college to work on this. I was accepted, and planning to start in January of 2007, but then something happened.
I was in a very minor car accident – someone rear-ended me. Because of my history of back injuries and my connective tissue disorder, this was actually highly painful, and I needed to see a doctor. We talked about my past injuries and he checked my back very thoroughly. I thought wow, THIS is what a doctor’s appointment should be like.
I then noticed that he had only spent 15 minutes with me. That was what stopped me from going to med school – the realization that HMOs have really screwed up doctor-patient relationships, so that we expect only a few minutes with our doctors to try to race through our symptoms and get answers. I thought no, no no, this I cannot do. I cannot be part of a system where my medical opinion and expertise is subjected to the oversight of someone who has never seen my patient.
So then I applied to law school. Due to some things I’m not getting into, I decided that I would go across the country. This was, after all, the last time I knew I’d be able to do that. No pets, no husband, no children, not much furniture…okay, why not? I was accepted to several law schools, and chose one in an urban area that had offered me a scholarship and had the greatest number of public service and public interest connections. I had long known that if I was going to be an attorney, I wanted to be a litigator (someone who appears in court) and I wanted to be working for what I deemed a good cause – a DA’s office, a charity whose objectives I believed in, the ACLU, so on.
August 11, 2007 was the last relatively normal day of my life.
On August 12, 2007, I woke up with the joints in my hands hurting. My first response was panic. The auto-immune event I mentioned before had started in my hands. It couldn’t be coming back, how could I get through that again?
August 13, my whole body hurt when I awoke. I have been that way every since.
August 15, I moved across the country from all of my family to go to law school.
In November, I decided that this was probably here to stay, and applied for a service dog.
I have struggled tremendously as my condition has gotten worse. It was not until January 31, 2009 that I recieved my primary diagnosis of Ehlers-Danlos Syndrome. I have not recieved an official diagnosis of secondary fibromyalgia, but it is strongly suspected.
I started full-time, and struggled terribly. I was forced to drop down to part-time status because of attendence problems. I was able – just – to get through my first year as a part-time student, but my grades suffered as I was spun around a merry-go-round of new prescriptions and new problems. I was, I’ll admit, deeply disappointed in my GPA when in retrospect I should be proud to have survived. Something like 1/3 of people do not make it to their second year. All things considered, I think I am justifiably proud to have managed ‘average’ grades when trying to learn to live with a disability in a place far from my support network.
The next year, I sprained my back during my fall exams. While my school was very accomodating, the fact is that I was not capable of taking 2/5 of my exams. That spring, I decided that I had run my body into the ground quite enough and needed to take a reduced course load. With the approval of the faculty committee, I took just two classes. My GPA for my second year was much better, to the point where I felt reasonably proud of my improvement.
In the middle of that spring semester, I recieved a phone call that has changed my life: I was being matched with Hudson, a 2 year old black labradoodle service dog. You can imagine my excitement; I had waited almost a year and a half since I sent in the original application, and here it was, a match and a date to start training, June 20, 2009.
There are ways that the timing of this was difficult. I really needed the summer to let my body heal and reduce my stress, and here I was going to 3 weeks of incredibly tough all-day classes learning to work with the dog. If it were not for The Boyfriend, I would not have gotten through. As it was, it was a near thing at some points.
But we made it through. I started fall semester far less rested and ready than I would have liked to.
The semester got suddenly more difficult when I started having insane migraine problems. They came two and three a week, and suddenly with frightening add-ons like visual distortion and hand twitching (which would make them compound migraines).
As suddenly as they had started, they stopped. A week later, I started…losing time. It is as if I have an on/off switch that someone toggles, and I am unaware of it except that time passes. As of right now, we suspect this may be some form of absence seizures, though there is some potential for a brain aneurysm. We don’t know why. I’m in the middle of testing – the EEG has been done, but the MRA (magnetic resonence angiogram, or map of the blood vessels) is yet to come. I haven’t recieved the answers for either.
So there – you are now caught up to us sitting here in mid-november, a week before I turn 26.
Oy la. 26, and I am waiting for an answer from Social Security to see if I can get disability. 26 and not sure if I will be able to finish law school, much less ever practice. More often afraid of how my disability will become disabling than accepting of the process.
But if you would know anything about me, know this – I am a fireball. To be sure, I burn myself and those dear to me sometimes by my very nature, but it is passion that drives me when there seems nothing else to go on.