I am not sure what is going on with my body. I began this long odyssey with body malfunction and pain when I was twenty six, it came on rather suddenly, although there were warning signs throughout my life. I have always been a pretty skinny guy, I weighed somewhere around 130-135 lbs back then, but when I first got this disorder, I stopped eating and I stopped sleeping, and over the course of six months or so, I dropped weight until I was a paltry 119 lbs. I ended up going to the emergency room, and got on some anti-depressants, which really helped, and I regained the weight.
The pain, however, did not go away. At first, I would make some change, like going vegan, or sugar-free, or wheat-free, and sometimes it would seem like there would be a difference, but always the pain would come back after a few months.
When I moved to Eugene, I had my good and bad years, but there was one year in particular, when it was really bad, and that winter was a long season of myself teetering on the brink of self-extinction. It sounds terrible to say, but I have had a long history of wanting to end my own life. I have never once attempted it, always because of my family. The thought of the pain I knew my suicide would cause them was always enough to make me seek help. So I have been hospitalized twice.
Joke Break: A judge in divorce court says to Mickey Mouse: “So let me get this straight – you want to divorce Minnie on the grounds of insanity?” Mickey shakes his head and sighs, “No, I said I want a divorce because she’s fucking Goofy!”
Anyway, back to suicide. No, just joking.
I am forty now. I have lived with moderate to severe pain for almost fifteen years. Generally, I am in pretty consistent pain for eight to nine months out of the year, with my worst pain coming in the fall and winter months, but that pattern has changed over the past three or four years, as has the texture of my pain.
Whereas my pain used to be almost completely random – it could affect any joint or area around the joint in my body, and even beyond that, skin burning, stabbing pains, stiffness – now my pain is becoming more exclusive to the area of spin between my shoulder blades, and to my hips. I still get it all over, but not as often. I suspect that what I really have is Ankylosing Spondylitis or one of its family of disorders. Irregardless, whatever disorder I possess is definitely progressing.
As I stated above, I generally feel most of my pain from late September (approximately) until April or May. But over the last four years that window of relief has gotten smaller and smaller, I have had major scapula issues two out of the last three summers. I felt obligated to resign from my job as a rock climbing instructor. For the first time in my life, I questioned whether or not I had the energy, desire and inclination to climb anymore.
So now we come to the present, and me in the middle of the worst flareup of the year. I have been in solid, unending pain now for three or four days straight, I am having difficulty eating for the last two. I’m grumpy with the kids. I groan and cry out and my family all cringes. Sometimes they put a comforting hand on me, but lately, even the pressure of their touch is painful. That isn’t an exaggeration, either. It literally is painful (sometimes) to have someone put a hand on wherever it is I am currently hurting. Sometimes it will be hot to the touch.
I go to sleep in pain. I wake up in pain. Or, more precisely, pain wakes me up, generally around 3 to 5 in the morning. I take more drugs than I care to. Especially when I am really getting blasted by pain, I have to get blasted to blast the pain that is blasting me.
People have often noticed that I do much better in the warm weather, and asked why I don’t relocate to warmer climates, and for me the answer has always been the same: My daughter Zoe. From the time of her birth until she was about six, I spent almost every day of her life with her, and when I moved to Roseburg, I began commuting to get her on weekends – pick her up after school on Fridays, and take her back on Sunday night or Monday morning. There was no way I was going to miss out on time with her, even if it meant I had to suffer during the long Northwest winters.
Even that has been reconsidered. First we were going to move to Bend, but then my mother suffered a pulmonary embolism, a scare that made me realize I didn’t want to be too far away from her. She is 73, she smoked for almost fifty years, she already had to have a foot-long section of artery in her leg re-routed because of clogging, so I really didn’t want to move just then. But, as with my daughter, I now have to reconsider. I still have four months (at least) of this type of pain for this year alone, more than likely I am looking at five or six months before it lets off. Then it starts all over again.
So we are going to move to the Southwest, in all likelihood when I graduate from UCC in two years. Zoe will be twelve then, and will more than likely stay with her Mom in Oregon for at least a few more years. We won’t see each other like we have, it will be on summer, winter and spring breaks, but I am hoping that our time will be even better together because I won’t be in so much damned pain.
I am getting too old to keep enduring these winters. Heck, it ain’t even winter yet. I just can’t keep going on. It’s way too much. If my pain was more moderate, it would be tolerable, but often, it’s not, it’s severe. I feel like my bones are breaking, my tendons burning, knives being pressed slowly through sinew and muscle. It’s indescribable how bad it gets. Sometimes I truly do want to die. just to relieve it. Now, now, don’t get all in a tussle, like I said before, I’m not going to do that to my friends and family. There’s a difference between wanting to do something and intending to do something.
I look on-line at places to visit and property for sale in towns like St. George, Utah, and Taos, New Mexico, and Sedona, Arizona, and dream of the day when we can go there, and feel warmth, and sun, and my body will be freed from this hellish nightmare that right now it can be. I love my life, I am grateful for everything I have (including this disorder), but I am ready to find a place where pain is an occasional visitor, not a homunculus come to tear at my body every hour of every day.
I see myself, no I feel myself lying on warm sand dunes and red rocks, I see myself climbing, all the time, because there are no limitations to when I can do it anymore, because I feel good all the time.
Sometime soon, that is the way it will be.