My book.

My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

Total Pageviews


Friday, March 2, 2012


There was a Messiah singalong the other night at the church. Our choir was scattered througout so I did not feel compelled to go but, since the failure of the implant, this is happening more and more: I want to go but I do not want to go because of the pain.

All that afternoon I argued with myself. It will be fun but how much eye work will it take? How much codeine? The 3 minute walk to the church starts the problem. The cold makes the lids swell, the swelling makes the pain worse, the pain makes me need the codeine so I start out already behind.

In the old days, when I had the touch triggered pain, it would not even be a consideration. There would be no way I could do it. Even though it is now only the eye pain, not, Thank G-d, the horrendous excruciation of the original tic the pain still becomes the decider of what I will do.

I want to be a part of this. I want to sing. I want to be one of the many, of a community that contains me as a member. It is the pain that does not want to be there.

So I ask myself, Do I want to be there more then I do not?

I wish it was as simple as that. Everything socially, all that would let me be a part of something well worth sharing, cannot overcome the fear of the pain, the fear that I will not be able to control how much I use the eye. I also want to be part of the socializing after, which is also bad for the eye, but I will force myself while making the pain close to unendurable, as close as you can get while still pretending. So ther decision is unhappily made. I stay home.

The choir is doing a concert this Sunday.

Again I have to decide. Can I do it? After, and during the rehearsal last night, I fought the weight on each shoulder, both devil and angel. One says "Forget how dry your mouth is from the drug, forget the pain, you have to do it. Do you really want to let the pain separate you, once again, from the group?" The other replies "Forget doing the concert. Let go of the need to be one of the many. You saw it in rehearsal. The joy of singing turned into desperation and longing for the song to end, the pain escalating, refusing to leave." Each side is right. Each side hurts me in its truth.

Once again the pain puts me to the side of life, keeps me from being a participant. We have another rehearsal tomorrow morning. I am putting off the decision hoping that my mouth stays wet, the codeine is not necessary, and the pain decides not to make itself known.

It amazes me that, after 30 years of this, I still have the capacity for self delusion. And yet, maybe this time, my fantasy will magically become real.

Hope truly does spring eternal.


  1. These are very uplifting posts. I have found I have been doing more avoiding lately in expectation of pain as for unknown reasons mine is cycling up higher and faster than any doctor seems to understand. But, you are right, there are times I can be part of the community. I can attend. I am planning to attend a black tie dinner with my husband the end of the month after another procedure (one week prior - how's that for gutsy). I have ordered a dress custom made as my figure has also suffered these last seven years for me. Thank you for reminding me to keep my mind open. There are times I am able to be out and have fun with people and almost forget I am disabled for a little while at least. Your blog is great. I just found you and will be sure to follow you from here on. I am so sorry you have not had the support you deserve to have with you on your journey.

  2. Thank you. Sometimes I do worry that they are too depressing or not 'happy'.
    I hope that this cycle will be at an end soon for you.
    Good for you and sounds like something well worth the looking forward to.
    It is those times that are so important, when we can just be in the world and not an observer that I think helps with the bad times.
    Thank you for your kind words and I am glad you found me.