I just went to my website. One of the members posted a message. At the end of it she directed a question to me. "How are you feeling?"
I never like to answer the question. It is not the issue I have written about here, not liking to talk about the pain. It is a feeling of guilt.
My pain is not as bad as most of theirs. Many of the members have bodywide pain disorders. The pain they have is so bad there are more than a few days when they cannot tie their shoes or even get out of bed.
My pain is only in my eye. The answer to "How am I feeling?" is almost always "Fine.", unless I use my eye.
Ask me after I have been on the computer and writing unceasingly - when the pain is so bad I cannot use my eyes to answer the question. "I am doing horribly." But, I know even if I have let it get out of control, even if it may take hours before it subsides, my body will let me do anything and usually everything I want and need it to do. I may take to my bed or the sofa, but it is only because then I will not use the eye.
Writing this is becoming an eye pain problem because I wanted to write it as soon as I saw the posting on the site.
I do not know how to answer it. The truth is I am not in the kind of pain most of them are. They are so kind. They want to make sure I am doing well. Is my pain not as concerning, is not as disabling in its own way because it is not the kind of pain they are in? I know they would emphatically say "No."
I wonder even about posting this to the site. A part of me says I should. The other part says, will it make them feel even worse if I told them this?
Pain is pain is pain but a sprained ankle is not RSD. An eye pain that resolves quickly is not lupus pain or fibromyalgia.
Maybe it comes down to the same problem I always have. Is it merely a rationalization for my not wanting to talk about the pain, to admit to it, to accept it as a part of me?
I was and am asked by many people if writing my book was cathartic. That is the stereotype. Someone writes about a bad experience and it lets them get out the pain. It was not for me. I am not sure why not. This blog, on the other hand, is causing me to look at things I am not sure I want to see. At some point I have to be able to write 'disabled' on forms where it asks for occupation without writing or thinking (at present).
Maybe I titled this the way I did, to force the issue. 30 years, and counting, is a long time to be in pain. My life is not going to magically go back to when I was 26 and sitting in my living room in NYC. Back to the moment before the first pain hit and took everything from me. Writing that sentence makes me want to cry. I suppose that is a start.