I've been forced to learn a lot about dealing with disappointment in my years of being sick. The most constant disappointment has always been the failings of my body. I had to learn in high school that for some reason, my body couldn't do the things that it should be able to do. I missed out on opportunities that I could have enjoyed. Every day was more challenging than it should be. But I learned to deal. I had no choice but to get through high school, excel in my courses, and move on to college. So that's what I did.
My next major disappointment came with the first surgery, in July 2002. It was an initial success. I felt better than I'd ever felt. So, when I began a quick decline after six weeks, having to eventually drop out of college, that was a major disappointment. But I learned to deal. I needed to remain a student to keep my health insurance. So I enrolled in community college and adjusted my expectations for myself. I also made an appointment at The Chiari Institute (TCI). I had to wait 9 months to go there. In that time, I became quite underweight, and lost most of my ability to function. But I kept pushing on, with a new goal in mind.
At TCI, we made plans for another surgery, a cranio-cervical fusion. I went through hard times. I missed out on a lot of life. But I believed that if I got through this, I would have my life back. So, I kept pushing.
My next major disappointment came after this surgery. Despite intense physical therapy, massage therapy, and a lot of patience, I wasn't getting any better. There was nothing more that could be done for me at the time. And my body was more broken than it had ever been. I was very lost for a while. In the end, I had no choice but to form a new plan and start moving forward again. So, I kept working and found a way to return to my college, in an electric wheelchair, 9 months after surgery. It was a long road, but I worked hard, with a goal in mind, and graduated school as planned. I even began working, part time, after graduation. I started my own piano studio, teaching 10 hours of lessons a week.
Unfortunately, the next disappointment was never far behind. As hard as I tried to pretend that I was fine, it was clear that I was not. My symptoms were unbearable. I hadn't contacted TCI in a while. When I did, they ordered some tests. They decided it was time for my next surgery. Life would need to be put on hold again. In June 2008, I had my spinal cord untethered. During the same trip, I had a life-changing experience: I had invasive cervical traction repeated. This test came back positive. This means that even though I already have my head fused to my spine, I still need more surgery to correct a problem of functional cranial settling in the area. So, I had a new reason to hope. The surgery on my spinal cord didn't seem to help much. I have actually been on a decline since then. I would have begged for them to perform the other surgery that day, but they wouldn't. They won't perform the surgery until my bone density improves.
That has been a new source of disappointment for me: my frustrating bone density. When I was first tested, my bones were practically average; just a little soft. But not strong enough to qualify for surgery. Unfortunately, the first endocrinologist I saw refused to treat me. There were two reasons: he refused to treat a pre-menopausal woman for osteopenia. And, he refused to treat osteopenia that was so mild. When I brought him a note from my neurosurgeon, he refused to see me anymore. He did refer me to another doctor.
The next doctor had similar concerns. The medications used to treat osteoporosis and osteopenia are untested in women my age. So you need to have really bad bones to get approved for them. It was decided that we would start with non-drug treatment. Unfortunately, my next DEXA scan, of course, came back worse than the last. So surgery was looking further and further away. Then, in October 2009, we finally started with a drug treatment (Forteo). Since it is such a strong drug, there was hope that it would show significant improvement after 4 months of treatment, which is when I had my next DEXA scan. Unfortunately, this showed very little improvement. So, we are back to waiting. This may mean postponing my wedding this time. We had actually planned the date based on having surgery sometime around this April. So, we may have to re-think that.
If I've learned anything from all this, it's that there are ways of coping with major life disappointments. For me, I need to stop and grieve over the loss. Then, I need to re-assess the situation. Then, I need to set new goals and time-frames. Then, I will be able to accept my situation once more, and keep moving forward. Of course, I know that disappointment comes in cycles, and acceptance doesn't last. So I don't expect to stay in this part of the cycle.
