We ran into a friend tonight. I asked him how he was and he said he was in great pain. I naturally expressed sadness at his pain, and said that I thought his last surgery had promised to relieve his pain. This guy has been living with nearly constant pain for many years and has had many surgeries to correct various problems that have arisen, but the last one was supposed to finally end the pain.
He was having a neural stimulator implanted in his spine, which was supposed to help him control the pain.
I am very familiar with neural stimulators. Our friend Olivia (who seems to have vanished off the face of the earth) suffered from severe back pain for years until they implanted a neural stimulator. It's a gruesome procedure, she explained to me. The stimulator consists of electrodes which attach to nerves in your spine and you have to be awake through the procedure because only you can direct the surgeon to which nerves need to be stimulated. It sounded like a multi-hour electrocution.
After the device has been connected, it is controlled externally by something that looks like a TV remote which allows you to turn the device on and off and, if I'm not mistaken, adjust the amount of stimulation that goes to the nerves. Olivia said that it didn't completely alleviate the pain, but made it bearable.
(Her back pain eventually worsened and the last I knew she had to have a second stimulator installed, so that she had one to control the pain in her upper back and one to control the pain in her lower back).
Apparently the device has not been as successful in our friend. He says that with it turned off, he's in excruciating pain and with it turned on he has constant electrical vibrations down both legs and the knees lock.
Problem is that he's about to open in a play and he can't have the device turned on when he's on stage because of the problems with his legs, so he has planned to turn it off just before he goes on stage (which means he will be performing in excruciating pain) and then turn it back on again as soon as he goes off stage.
This is carrying "the show must go on" to incredible heights and I feel so sorry for him, but in awe that he is actually going to perform.
Which all reminds me of a book that I received today which I have been asked to review before its release to the public. It was written by my friend Toni Bernhard, the author of the award winning book, "How to be Sick" and its sequel, "How to Wake Up." The latest book is titled "How to Live Well with Chronic Pain and Illness."
Walt and I got to know Toni and her husband Tony (yes, really) when our kids were performing in the high school jazz choir together and the four of us went along to Disneyland with the group as chaperones. We got along well and we liked each other very much. We may actually have gone on two different trips. I can't remember now. But the kids graduated in the mid 1990s and our paths didn't really cross after that.
In May of 2001, Toni and Tony took their dream trip to Paris. They had rented an apartment for the duration of their stay and what could be better than Springtime in Paris?
Only by the time they got to Paris, Toni felt like she was coming down with the flu and so she went to bed while Tony did sightseeing. She assumed the flu would run its course. But it didn't. The virus compromised her immune system and that turned into a chronic illness. She has been sick ever since. She had been a law professor at the University and she tried going back to work, but it proved to be impossible. Fourteen years later she is still mostly house-bound and often bed-bound.
Her first book, "How to Be Sick" was written as she learned to live with her illness and make the best of things. As she says, she "learned to cultivate joy through others" -- not an easy task, but six years in the making.
She had studied Buddhism and her coping mechanisms were based on Buddhist principles, but the book is very readable even if you have not studied Buddhism (or even if you are not living with a chronic illness). The book has been a big success and got her on the staff of Psychology Today, for which she writes regular articles. This interview with NPR is wonderful.
It has taken several years — and many tears — to learn how to thrive in my new life. I still have rough days when I wish I could do whatever I want. But really, who can do that anyway?
On the whole, I'm content and at peace with what I can do. Even if it's from the bed.
So tonight I'm thinking of Toni, and Olivia, and our friend, and all those who live with debilitating illnesses, which may not be visible to the casual observer. I cannot feel their pain, but I can try to be empathetic. I will be spending the weekend reading Toni's new book and hope I can finish it over the weekend, so I can write a review.