OA_Skeleton_anteriorThis week, cellist Julian Lloyd Weber announced that he will no longer perform on account of worsening spinal disease in his neck which has caused his right arm to weaken.

“After 2 May, my cello will fall silent… I would like to use the knowledge I have gained through my life as a musician and an educator to give back as much as I can to the music profession which has given me so much over the years”

This hit home hard for me since I too have to deal with managing my spinal arthritis. Arthritis is managed with a combination of rest, medication, and therapy. If you do too much you pay for it. Flares can last 3 months or more if you overdo. It is a systemic disease. There is no cure. The joints continue to corrode and rust (yes that is what the specialist called it) even if you manage your disease well.

What causes it? Rheumatoid Arthritis is an auto-immune disease. Osteoarthritis on the other hand, can be genetic, caused by past injury (car crashes, sports, falls, etc.) or a combination of the two. I have the genetic kind and I get it from both sides. When I was 19, I was also rear-ended on the interstate. Double Whammy.

My disks bulge, there is impingement of the spinal cord, there is corrosion where the nerves exit the spinal column and along the ribs, and there is compression of the nerves along the ribs. I have the added bonus of one vertebrae being out of position. Additionally, the disease tends to spread about so it will randomly pop up randomly in other parts of my body. Last summer it was my left foot and recently it has been a middle finger and thumb.

I have to stay on my anti inflammatory, get lots of rest and sleep (yes these are different things), do my exercises, wear the right shoes, ice my back every night, and use electrical stimulation patches a few times a week to manage mine. All that means I can function, practice for a few precious hours a day, and even do some performing if I’m careful. I can ride my bike, blog, garden, teach, and drive. I have learned to say no and not feel guilty. I have learned to delegate and ask for help. I have learned to rewrite passages mostly without guilt.

The interweb circles in which I run have been full of discussion of Julian Lloyd Weber’s announcement. Some of it is insufferably judgy. I have been dismayed to see how many people infer that this was something he could have prevented, like overuse, improper technique, or measles. His brother said that he had been managing the disease for some time and they had hoped he would never have to make that announcement.

I am a little hyper-sensitive on this subject. People can’t see outward signs of the disease and as long as you are up and walking around many of them think you should just tough it out. They can’t see the day to day pain that you are in even when you are managing your symptoms well. They don’t know that an arm can go to sleep suddenly or just simply say no when you ask it to do something.

If you have symptoms of pain or weakness you need to seek help. My pain and weakness started when I was a teenager but it was not diagnosed until I was in my 40s. Before that I had pain and stiffness on and off and usually one really bad back event per year. There was never anything on the x-rays so I stopped going to the doctor and just took aspirin when I needed it. Suddenly my left arm was numb and tingling and I was in terrible back pain. The radiologist didn’t send the results to my doctor because thought he had the wrong patient. The x-rays were those of a person twice my age

Sometimes there is no healing. There are times when there is no going back to the way your body once was. There is only managing the body that you have.

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