I had utterly agonizing facial pain for thirty years with a suicide rate of 95% or more. Coping was very difficult. Words can't begin to convey how bad it was. My father was horrific with abuse. Perhaps, there was a balance b/c my mom totally supported me. She contiually gave up things to her detriment to help me. I was very independent but tied to her b/c of abuse from my father. She actually moved in with me to help. I was very dependent. I forced myself to endure thirty oral surgeries. I have a morphine pump but opiates don't address nerve pain.
One old-time antidepressant worked but its side effects were so incredibly toxic. The few meds that help with nerve pain did not help mine. One bad factor was that I was at the very top of the legal profession when I became ill. My ilness is poorly diagnosed. Dentists keep giving me weird, terrified looks. Nothing was explained. I later learned there was no cure. They were shocked I was not dead. I went from Wall St. and the Princeton Club and St. Bart's to cringeing in front of the Family Affair building, calling a friend from work b/c I feared I would walk in traffic or gain access to a window and jump of the iconic building. Normally, I would ask the police for help but I knew I would be taken to Bellevue.
I saw so many oral surgeons, acupunturists, massage therapists, osteopaths, chiropractors, dentists and physical therapists. Chinatown was no longer about food but trying Chinese herbs. Finally, I did my own research back in the days of magazines at a NY medical library. I diagnosed myself. When I spoke with teaching hospital doctors in NY and Harvard, I was told the diagnosis was a scam. Meanwhile, I am going down the tubes. I went from the toast of the town to the bottom. People attacked me on mental health units. The book described my symptoms to a T, something no other source could. My first surgery completely erased the first pain site. My entire jaw was affected. I lost almost all of it. Surgery would remove pain at one site but not another. Finally, over the course of many years, it was contained to under my nose.
The spot under my nose would not respond. I spent countless hours in psych ers to stay alive. Also, I called priests just to have someone to talk to for a while. My mom accompanied me for all outpatient visits. My life was so good and dear after the Witnesses and my father, I truly reveled in it. How could Jesus condemn me to this? He condemned people to the Holocaust. Why was I special. The medicine was the easy part. Dealing with the political issues with doctors and catering to their egos was the hard part. They want virgin patients, untouched by another doctor b/c of liability. Finally, a very prominent and innovative doctor saw a correlation between the rotted sockets in my jaw bone and the rotted hip bones of cancer patients from chemo. I flew all around the country for help. A sophisticated blood test revealed abnormalities in my blood. Every illness in my family could be seen in the blood. I was placed on blood thinners. The pain disappeared for the first time. A couple of year of here and gone followed. Gradually, the pain free moments increased.
Facing the damage to my life was terrifying. I ended up at Bellevue outpatient. My dependence on my mom was extreme and she was not immortal. She was in deep denial concering my level of dysfunction. I insisted we get pro'l help for making the transition when she died. She tried very hard once confronted. I could not wake up like Sleeping Beauty, put on a Prada suit and go practice law. So many times I've wanted to pinch myself b/c even for Ms. NY neurotic, my degradation was extreme. The opiates meant I had to be admitted to a psych unit to detox. The local hospital had the contract for heroin addiction in Manhattan. Other patients were a collection if criminal misfits fresh out of state prisons. Several times I faced death or serious bodily injury from patients losing control and becoming violent. It may be a very small population but when they act out, watch out for your very life! A woman who razored someone's mouth to death and spent time upstate was newly released. There was an argument over air-conditioning. They had no idea how it worked. No idea of air vents, etc. She came out me with full fury. Fortunately, I befriended a prostitute who was in the crack house where the homicide occurred. The prostitute tackled her. I screeched the details to the staff so if I died someone would know. The staff told me she was harmless. Since the unit was very bad and I had world ranked doctors, her assault paved my way out of there. I threatened to have the police enter the unit and arrest her.
I am recovering today. It is quite an effort but worthwhile. I volunteer for a civil rights law firm. Altho I tried hard, I did not pass my local bar but by a small margin. Recently, I've spent hours on the phone talking to friends. One of my goals is to grapple with writing about severe pain in a meaningful and eloquent way. i feel I must have something unique to say. Several people have suggested that I represent people with disabilities. There is such a need for political advocacy. The legal field is limited. Disabled people have to be vocal. A wheel-chair sit-in is a great visual. I get annoyed with other disabled lawyers who think faxing documents to overwhelm an agency at a coordinated time is a great protest. My idea is to have pain-athons the way we have cancer telethons. Pain plagues humankind. It is worse than death. We are too complicit in our oppression.
One of my favorite political statements was one I heard from Tom Daschle, the Senate minority and majority leader who received anthrax. Trent Lott made some comments favoring (I remember every Southern Dem who was pro-seg except the one I want). Sen. Daschle thought he would not exploit Lott's political misfortune so he gave a neutral statement. Lott's comments were not overtly racist. Once Sen. Daschle returned to his office, he field phone calls from the civil rights coalition. They demanded he back away and condemn Lott. Daschle rethought his earlier support b/c he had no choice within his constitency. He withdrew his support of Lott. He was not being nice to the civil rights coalition. They were so powerful within his party he could not decline. I want that earned power from the disability movement.
I spent time in pain clinics and programs. There was no answer for me. It frightens me. Basically, I just hung on b/c I was terrified of dying. A rational choice would have been suicide. Despite supporting Kevorkian, I just could not. I always felt that was my option. Now I must live with knowing I could be brave enough to do it.
This is over the top stuff. I'd rather people be impressed by my family, career and civic activities. Perhaps I could use a ghost writer. I wrote this as I went along so it may not be the best I can offer.