How It All Started

Like most people with a chronic illness, I can't really tell you the day it all started. I can't tell you that I was sick for a month and then noticed it. My initial symptom was absurdly vague. My neck felt sore like I hadn't gotten enough sleep but I was certain a few days of rest would make everything better. I toughed it out to the end of the week and did nothing during my "weekend" sure that it would be just fine.

It wasn't any better but I couldn't justify an unpaid day off from work. My company considered it to be an offense to call out if you didn't have any paid sick time "in your bank." After another nonspecific period of time, I realized that I was getting worse. The neck ache was more painful and I was getting headaches. Since my benefits took effect shortly before this started, I bit the bullet and re-established my relationship with my doctor.

As usual, I left my doctor's office feeling offended but he decided that I needed some time off for work. He wrote doctor's orders specifying that I could not work with these symptoms for the maximum amount of time my company would accept per note: two weeks. I didn't get any better during those two weeks off and the added stress of not getting paid didn't help at all. Melissa and I tried everything we could think of including cold packs, moist heat from towels and dry heat from this stuff you could stick in the microwave and then put it on your neck. It was as hot as it would get when it came out of the microwave. Sometimes, I would get temporary relief from these measures but I didn't other times.

When my two week note ran out, I panicked because my doctor went on vacation. I needed to have a doctor's note or I wouldn't have a status and could get fired. Therefore, I went back to work for two days. The first day seemed unbearable yet I made it through taking maximum doses of my doctor's narcotic prescription and my iron will. On the second day, I collapsed in the elevator as my big boss was walking in. He ordered me to go home despite the fact that I had no way of getting home except by driving. I went to the ER and got a note for the rest of my doctor's vacation. The ER doctor told me that this was something that had to be taken seriously.

I was deeply offended by the "fact" that no one but Melissa and me seemed to be taking this seriously. My doctor had ordered an MRI which I got but nothing seemed to come of it. It turns out that my doctor was on vacation but his staff wasn't. He had ordered his staff to get me the first available appointment with a neurosurgeon because he knew what a stubborn cuss I was so my complaints were serious.

Melissa looked through her medical books that she kept as a hobby but the symptoms didn't fit anything. As a spina bifida patient with hydrocephalus, I was concerned that my shunt needed to be replaced. We were able to rule that out for the moment along with a brain tumor because both included projectile vomiting as a symptom. With all the things I've experienced, I'm happy to note that I have no first hand knowledge of projectile vomit.

The neurosurgeon had a diagnosis waiting for me when I walked into his office. It was an Arnold Chiari Malformation and the only treatment for it was surgery. He stressed that surgery was not a cure but only a treatment. The "book" said that either 70% or 90% of post-op patients would retain some symptoms. Without surgery, I could die but he told me to go home and think about it. After a few days, I realized that I couldn't figure out what I was supposed to be thinking about. It was surgery or this strange hell that could culminate in a mysterious death.

This, of course, is not meant to be the story of why I'm mad at certain doctors, etc. I would like you to note that you should not take a doctor's word for it when he says that there are no specialists for your condition. I might have saved myself a lifetime of pain if I had done the research. There were significant obstacles including the fact that my computer lacked internet access in those days but I should have found a backbone somewhere.

It took more than a month to get an OR for my surgery and my surgeon certified me as temporarily completely disabled. Thus, Melissa and I had time to work on the symptoms. For reasons beyond the scope of this particular work, my symptoms changed from day to day if not hour to hour. That was the bad news. The good news was that something almost always made things bearable. If I were in pain, either heat or cold plus good narcotics made things bearable. My job had made me a little bit of an adrenaline junkie. Withdrawal from that made the pain worse, made me dizzy or gave me the twitches with which I'm so familiar. I had to learn to relax but music helped a lot.

Boredom became a serious problem for me. If I did nothing, I felt better physically but I ran into boredom and the blues. Being able to purchase a new computer shortly before my surgery helped a lot. Computer games gave me something to do in short sessions. Early on, the biggest problem was the lesson I had yet to learn. I had to accept very strict limitations on what I could and could not do. If I had to sit down and remain still with a cold pack to keep the symptoms bearable, that's what I had to do.

My first surgery made me feel worse for a while, of course. Significant parts of my vertabrae had been removed. It boggled my mind to realize that so much pain could come from a few milimeters shaved off the bones of my neck. The good news was that this period of feeling worse didn't last long. Between my coping strategies and the fact that I had been in so much pain made me feel great by comparison. Thus, I learned about guilt and its effect on me.

I was told that my recovery would take between six weeks and six months. Others in my family were told it could take up to two years for a full recovery. I felt well enough for very limited daily activities but anything resembling work left me helpless and twitching. I started to believe that it was all psychological just as I did when the tired neck feeling started. I hated my job so I was making myself sick to avoid it or so the self doubt went.

When my surgeon suggested that it was all in my head yet my shrink told me it wasn't, I went looking for that nonexistent expert. After months on insurance fighting, that expert told me what my previous surgeon did to make me even worse. It was all in my head for sure. The damage done by the first surgeon was contained to my head and neck.

During the first summer after my surgery, I discovered online journalling. Therefore, I have a pretty good memory for how things felt so much better for a while. My symptoms grew in variety and intensity until my second surgery gave me a second "recovery" period. My second surgeon never accused me of being crazy. He tried various tests until he discovered a problem that couldn't be fixed safely.

This new journal will be about coping with the fact that I have been disabled since I was 25 for a total of twelve years now. I will remain disabled for the rest of my life unless a medical miracle takes place. Even if the new surgeon manages to fix the problem that cannot be fixed now, all these years of being sick mean that I will never be able to work again at least in the conventional sense. The best I can hope for is a relatively comfortable state of disability.