I’ve been away from social media for a few months now. I found myself increasingly not wanting to post or say anything about my condition because it’s so depressing. I hate to bring depressing news to people but this is my world. Several people have been asking so here it is… (last chance to turn away if reading this will cause you too much distress)
The Bad News
In the past few months my disease (Adiposis Dolorosa) has taken a turn for the worse. Much, much worse. I’ve become more and more disabled and my pain has dramatically increased. Recently I had another fruitless trip to the emergency room after spending about 4 hours in a semi-comatose state along with extensive dystonia.
Dystonia is a neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. The movements may resemble a tremor. Dystonia is often initiated or worsened by voluntary movements, and symptoms may “overflow” into adjacent muscles.
I’ve had these episodes before but this last one started out with an increase in my double vision, severe head pain followed by nausea and vomiting. Fortunately, I had a doctors appointment scheduled that morning and my mother was able to coax me into the car. At the doctors office, the shocked staff quickly brought a wheelchair. I was unable to keep my eyes open or speak very much at all when there. The doctor who had never seen me in this state previously kept looking at the records of my evaluations with Neurologists only to find nothing. As he said, the problem is that when I am not having an episode like this I don’t appear to be very sick. This causes Neurologists to suggest that I am in need of psychological help (a suggestion which sounds like “This patient is delusional and faking his symptoms” to me). In the past two weeks an event of this severity and duration that had previously occurred once or twice a year has happened four times.
The Good News
Having to leave seminary and ministry because of my illness sent me into a tailspin of depression and crisis of faith. The other morning as I was heading into the event that led to my trip to the hospital instead of listening to rock tunes from the 70’s and 80’s I put Pandora on a station of worship music. As my body drifted into semi-consciousness I was glad that I was listening to songs of worship. I believe this was the grace of God comforting me in that difficult moment. Since then, I’ve found a renewed interest in scripture and worship for which I’m very grateful.
To those who I’ve ignored or shut out over the past few months, I apologize… I’m sure you can understand how I really hate being a perpetual bummer to those around me. I suppose it is better that I stay engaged as long as I am able.