This came into my life and I think it should be required reading for all human beings, and posted in every doctor’s office. LETTER TO PEOPLE WITHOUT CHRONIC PAIN.
Yesterday, while looking at my battered slippers on my socked feet, I started to cry. My mind had immediately jumped to my dad and all the physical pain he experienced as an adult. For weeks, sometimes months on end, he literally couldn’t move off of the couch or out of a hospital bed that was directly next to my parents regular bed. I thought about how for a long time, the only gifts we could think of to get him on holidays or his birthday were things that he could wear or use when he was laid up in this way. It was always new bedclothes, slippers, or something like an extender-grabber for when he dropped things since he couldn’t bend or get off the couch to retrieve items for himself.
I was crying because I’ve been married 3 months to my wonderful husband, and out of work for roughly 4 months because of my back and this absolutely debilitating pain. Money is tight, stress is high, and I am literally in pain 100% of the time. I can’t keep my own house clean, I can’t make us dinner if it means I have to stand for over 5 or 10 minutes at a time. When I do get out of the house, it’s carefully planned and easily canceled if I’m in any sort of pain. There isn’t another option. I have to take cabs, the closest bus and subway is half a mile which is just too much right now. Making the decision to attempt a walk somewhere, or to hope there are comfortable seats available at a restaurant or bar, could mean that I wind up in a pain that I still don’t have words for, unable to dress myself and bawling in the fetal position for 6 to 9 hours with absolutely no relief.
This, as you can maybe imagine, causes major anxiety. Anxiety causes muscles to tense up, making pain worse. Anxiety and tight muscles make it hard to sleep, which makes anxiety worse, which makes pain worse. Tossing and turning has, more than once, been the cause of a day of hellish agony. Being unable to work, being stuck at home, causes depression to develop/reawaken and worsen with each passing day. And this doesn’t even go into the guilt, the weight of being truly shiftless when one desperately wants to be a part of productive society or get back into school. Forget the loneliness. People forget how to talk to you if they don’t just forget about you entirely. It’s too much for them to deal with. I don’t blame them.
My back went out for the first time 8 years ago, the day after President Obama was elected. We had thrown a party in our Lower Haight apartment on election night and, as you can imagine, there was a lot of standing around, being excited and running into the streets, and wild abundant celebration. The next day I couldn’t walk. I remember, really, barely making it to the polls the day before, I was already feeling pain in my lower back. I didn’t fall or have any kind of accident, it just started. It’s never been looked at by a doctor, because those first 4 years or so, the pain entirely disappeared with a days rest.
It came back with a vengeance when I was working at a jewelry store, but only really caused extreme discomfort rather than knocking me off my feet. (But it was still horrible.) It was when I was tutoring in Manhattan that I woke up for the first time and couldn’t get out of bed to use the bathroom. I couldn’t move, I felt paralyzed. I couldn’t feel or move my legs, and my lower back was on fire. The pain is impossible to describe. It starts small and gets big, fast. Aaron had to help me to do anything, everything, and after a day or two I made it to an out-of-pocket doctor who gave me drugs and wrote me a note to get me out of work for a week. She told me I had a pinched nerve and to rest, take baths, and it should sort itself out. It was the first diagnosis I was ever given about my pain.
Since then, it’s been hit or miss. I managed to get a degree at a nearby enough university that I didn’t have to be on the train for more than 20 minutes, and never really had to wait more than 10. I had a job at a wonderful imports gallery, but it turned out to be a less than perfect fit. Worked at what has totally turned out to be my favorite job ever at a beautiful florist in Park Slope, that sadly turned impossible due to the physical nature of the job (which was my favorite fucking part of the whole thing, really.) I’d much rather be moving than sitting. Even at home (before all of this,) I find it hard to relax when I am on my own and would wind up cleaning the house from top to bottom on sometimes a twice a week (or more) rhythm.
My back has gone out 7 or 8 times in the last 5 – 6 weeks. I feel it all the time. A smile on my face or getting out of the house for one afternoon or evening does not mean I am feeling better. The ability to get down the stairs a little easier does not mean I am feeling better. It means I am making it work, and nothing more. I am in pain every moment I am awake. It is the first thing that occurs to me in the morning, and the last thing I worry about while I arrange my body to fall asleep comfortably as possible. I wake up all night, every time I turn over, because of the simple fact that it hurts. If I wind up on my back during sleep, I might not be able to get up in the morning.
In fact, I’ve taken a small break from finishing this particular post and in that short interim my back has gone out twice. The last time was after waiting in line to vote in the election. 10 hours of misery as the results rolled in. I still haven’t quite found the right words to turn my pain into literature. To be absolutely frank, it’s the scariest thing I think I’ve ever gone through. I don’t know what’s happening, and when in the throes I have some of the ugliest, most frightening thoughts I’ve ever experienced. It often feels like it would be easier to give it all up than go through another moment of torment. I’m not trying to be dramatic or ask for help at this moment, just honest as fuck with you.
I made an appointment, I finally have my insurance. I have an appointment on the 23rd of this month and I’m nervous as hell and very excited all at the same time. Excited might not be the right word. Maybe anxious, to get started. I have to keep reminding myself that this first step probably won’t tell me anything at all, but it will hopefully get things rolling. A referral for an X-ray would be most excellent. Renewing my prescriptions through my insurance would be incredible, paying out of pocket is not an option.