This is a public post. I will be screening all comments on public posts both to avoid spam and to ensure that content from locked posts does not bleed into public entries via comments. Nobody would mean to do this, but since I have posted so many locked entries related to my health I ask the indulgence of my regular readers. It is not personal.
When I was in seminary, I did a lot of reading that spurred some potentially profound reflections; but I had very little time to expand on them. Since graduating, I have had the intention of doing just that; but various things have gotten in the way.
In August, after finishing with the Greek teaching assistantship, I stayed on with the fall class,, which progressed at a much slower pace. I thought this would allow me to remain active and also allow me down time to reflect, study various things of personal and professional interest, etc. However, it was around this time that I developed a migraine that did not respond to abortive medication or pain management. Eventually, the pain became so severe that I spent most days in bed and could not even tolerate the sound of my screen reader at low volume. I slept most of the time, and I don't remember most of the period from September through the end of the year. I know that I taught a class period or two in October with the help of a second year student. I must have done by sheer force of will--when I stood up, the room spun and I was nauseated and felt like someone was squeezing the life out of my head. At times, the room spun when I was lying down, and often I could not form coherent sentences.
During this time, I relied on a group of friends to sit with me on the phone when I did anything around the house that required moving around, especially if it required going downstairs. They had my parents' phone number and would have called for help if I fell while I was up and around. Fortunately, it never happened. If a friend was busy and could not stay on the phone with me, they called back after a few minutes to check on me, or I reported in when I was back in bed.
My animals were of great help during this time as well. Loretta (my dog guide) learned to be very in tune with me when we walked; and I could tell when she thought we really should not be working because she was obstinate. My cats often herded me to bed when my pain level was very high or I was too dizzy, then stayed with me while I rested.
Eventually, I found the cause of the headache. It was not a migraine, as my doctors thought. I had been trying (successfully) to lose weight. As part of my diet, I had been eating fruit smoothies made with pineapple and orange juice. Both pineapple and orange are high in amines, a chemical that causes headaches in some people. I analyzed my diet and cut out all foods containing amines; and in the spring I finally conquered the untreatable headache. My life returned to its "normal" routine of a few headaches every month which are generally triggered by weather patterns.
With the headache under control, I set about two things: working on my ordination requirements and getting off Prednisone, which I have been taking orally since 2007 for what my rheumatologist is calling spondyloarthritis. My variant presents more like rheumatoid arthritis with pain in the extremeties, but my abnormalities on X-ray are all in the spine.
The progress on my reflection papers and theological statements for the ordination and licensing committee has moved along nicely; and I completed some other writing assignments that I had not had the energy to work on while the headache raged. However, getting off Prednisone created new problems--and new opportunities. Weaning off of five mg of Prednisone took several months. I needed to stay on each new dose for several weeks in order to give my body a chance to adjust. My back began to hurt badly, sometimes so much that I had difficulty sitting or standing. I had begun chiropractic treatment for the interminable migraine; and I asked if he could also treat my back. Treatment was somewhat helpful, but the help was limited. My back pain improved somewhat once the Prednisone wean was complete; but I am still struggling to control pain in my hands and left knee during flare-ups which is severe, and other joints are affected to a lesser degree (including my lower back).
I have slipped into a fairly bad depression regarding my lack of employment or steady freelance work. Rationally, I know that I have skills which would enable me to work and generate income; but I feel emotionally paralyzed the longer I go without earned income. Living with such excruciating pain does not help my state of mind; and lately I have begun to wonder about the link between high levels of pain and mood-altering neurotransmitters in the brain. I have undergone many years of intensive psychotherapy in order to build skills to cope with ongoing stress associated with chronic illness and chronic unemployment. This is the reason I am able to think rationally about my options while I am also aware of the deep depression. I have been able to spring-clean my house in preparation for a guest with allergies to cats and to maintain a general state of affairs since getting finished with that task in spite of the depression; but I am having difficulty pushing myself to do anything about income-generating possibilities...
Perhaps I am missing a step... In my rambling thoughts somewhere in my internship journal, or perhaps in one of my ordination reflections, I talked about the need for a someone to write extensively about faith and illness/disability from the perspective of having lived with it. I have read various books about theology and disability. In the most recent one, the point was made that no one has written from the point of view of a theologian and a person with a disability. This is a vital piece missing from disability theology; and I am very aware of it and very keen to fill it. I am also a teacher; and I think that it is important for a person with disabilities to write about disabilities and biblical studies. It matters not just for the disability community but also for the church because they learn from our perspectives and they are so often drawn to the healing narratives as sources of encouragement. I need to let my life interact with these texts, let my vulnerability be part of what I do... It is hard to do this when I am in pain; but that is something I cannot do when I am well and working as if I am not really very disabled. I can't let the depression take hold of me and control me, though it matters that I acknowledge it is there.
I have no idea what will happen regarding my employment possibilities, freelance work opportunities, etc. I really hope something turns around soon. Chronic pain is not going to change. It is something I have learned to live with. I made it through seminary as a full-time student; and there is no reason why I should not be able to rise to the challenge and work, barring any more six-month headaches. In the meantime, I must rise to the challenge and do disability theology. I think that there are people who need this; and I think that for now this is what God has given to me to do.