When I was 15 I developed an auto-immune disease called Fibromyalgia, but a certain variety which results in a condition called Myofascial Pain Syndrome. MPS creates trigger points in the nerve clusters in the soft tissue of the muscles, which causes the area to spasm, which in turn creates ropey cords of muscle, which in my case can be as dense as bone when the spasms are particularly bad.
There are all sorts of secondary and tertiary effects from Fibro/MPS - sleep disorders, memory fog, succeptibility to illness and infection, digestive problems, intolerance to alcohol and other drugs- but the primary effect is pain.
Pain that can be so intense to take you out of your head (and not in a good way), or put you in a hyperaware state that you can almost perceive the air molecules as a crystalline sheet, almost like you are encased in acrylic. The bitch of it is that the pain can outlast any medication you can throw at it. Pain is very patient.
When my symptoms first emerged, my pediatrician said it was just growing pains. Then it was sciatica. Then it was neuritis. Then it was herniated disks. But after several years, two very prominent doctors in the field were able to figure out why I used to come home from work (where I sat at a drafting table all day) in tears.
The disease is not supposed to be progressive, but two years ago entered a new phase. I used to have long, asymptomatic periods, not anymore. I used to do Karate. I used to be able to sit at a drawing table. I can't draw on paper anymore- I can sit for very long periods, but only if my neck is not craned. I spent a long time working out the proper ergonomic setup, and it does help.
There are all sorts of ways to manage the symptoms, but the one constant in my life is Pain.
Pain has its own agenda. It forces me to constantly make decisions in order to negotiate daily armistices with it. Going to the beach is usually a bad idea. Any kind of activity that involves standing around- museums, parties, nightclubs, etc- is usually out. Or at least has to be planned for. If I break down and end up having a couple drinks somewhere I need a couple days to put myself out of commission to recover.
It also wipes away a lot of the nonsense that most people take for granted. You find yourself having a lot less patience for the silliness that people put up with when you're in pain. You don't suffer fools gladly. When someone tells you of some ridiculous herbal treatment or new massage therapy they read about online for your condition, you just have to smile sadly, knowing that they mean well.
But Pain knows that I am weak and lazy. And it forces me to make decisions on how to deal with it. It makes me look for compelling ways to take my mind off of it. It forces me to me to justify my time- I'm going to be in pain so I need to find comfort in a feeling of accomplishment. There are all sorts of easy ways out that Pain has not allowed me to take- the 9 to 5 job, the usual suburban circuit of wine-tasting parties and backyard barbecues, never mind golf. All of those are completely out of the question, since all would aggravate my condition for one reason or another.
But I'm sure I could've accomplished so much more in my life if not for Pain.
I know that Steve Willner is a brother in good standing in the secret society of Pain, and Sharon Gilbert is too. I wouldn't be surprised if some of you were as well. When your daily life experience is outside of those around you, it tends to do the same to your thinking.
And unless there is some major breakthrough, I don't really see myself dealing with this crap when I'm in 70s, and I'm sure the stress on my body will prevent me from reaching my golden years, anyway.
So if I'm going to do what I have to do, I have to do it now. I can't wait until my retirement to do the things I feel compelled to do.
So, if you enjoy the Secret Sun and wonder where I get a lot of these ideas, at least part of the answer is Pain. And hopefully Pain will appreciate the shoutout and make tomorrow a little easier.
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