Below is a brief biography of Joan's life. It does not do her justice. It is emotionless. My pain of losing my best friend; my sister is tearing my soul apart. Joan and I were so close. We shared a room as children. Shared an apartment as adults. There are no words .. I want her back.
Joan graduated from Johnson City High School in 1979. Joan was a 'people' person and had a genuine calling to help others. She followed in our mother's footsteps and pursued a nursing degree. Joan graduated from SUNY Morrisville in 1983 as a Registered Nurse. She worked for Lourdes Hospital in Binghamton, NY. She chose work in the Oncology ward –- it was not for the faint of heart. But Joan knew that was where she could do the most good. Her experiences at this Catholic hospital profoundly inspired and moved her. She converted to Catholicism in 1984.
In the summer of 1985, Joan began to experience pain in her teeth. I remember our typical Friday night, sitting around the TV and munching on junk food. I would see her wince in pain. I admonished her to take better care of her teeth and to see a dentist. She did see the dentist and our lives changed forever. The dentist found no tooth decay, but rather, a dysfunction in her nerves. A CAT scan was ordered and the tumors were found. Her first brain surgery was completed at Wilson Hospital in our home town of Johnson City in 1985. She made it through this surgery beautifully and demanded that I sneak in chocolate milkshakes into the ICU. I remember how she grabbed my hand, how warm it was; how grateful I was that she made it through.
The tumor was sent away for analysis. The diagnosis was horrifying - Neurofibromatosis 2 (NF2). A rare condition occurring in 1 in 40,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom. We were told there would be more tumors and that Joan would eventually loose her hearing.
Joan took the news like a trooper. She decided to reeducate herself and to prepare for her future as deafened adult. Following the removal of yet another tumor in Boston in 1986, she went to Gallaudet University in Washington, DC to pursue a degree in social work. Joan, in her high school days, had always struggled as a student. At Gallaudet, she blossomed. She graduated Summa Cum Laude in 1988.
Just four weeks following her graduation, she had her third brain surgery. She awoke into the world of deafness. I remember meeting her in Washington and trying to adjust to her new deafness. She was so happy to see me. We had no trouble communicating. She could always read my face. I remember being thrilled with excitement as we sat in the airport waiting for our plane. Joan was alive and well and everything was going to be ok. She wanted McDonald's French fries this time so I hurried to get them before we boarded. As we sat on the plane, I remembered feeling so happy. We were holding hands. At take off, there was some turbulence. I squeezed her hand to reassure her. What I felt back was a convulsive shaking. Everything turned into slow motion. I remember freeing myself from my seatbelt and standing to look at Joan. The plane was in full ascent and it was difficult to stand. What I saw when I looked into her face will remain with me always. I later learned it is called oscillating eyes. Joan was in the middle of a grand mal seizure. Her eyes were vibrating back and forth. I called the stewardess and within five minutes we were in a full descent power dive back to Dulles airport. All I remember was the screaming of the other passengers. Neither Joan nor I were ever the same after that. Fear had entered our lives. We had lost our innocence. NF2 had won that day. From that day forward, NF2 was our mortal enemy; it had taken on an identity of its own and I hated it.
Joan recovered and began her Masters studies at Syracuse University. She graduated in 1990. As chance would have it, I was transferred to Syracuse at that same time. Joan and I rented an apartment together and lived companionably. Well..we did have these royal cat fights because she saw my neatness as "a problem" and I saw her slobbiness as a serious character flaw. Overall, those few years were so peaceful. She was employed as a social worker with Aurora in Syracuse. She was helping the deaf and hard of hearing. She was totally fulfilled.
I remember weekly dinners at local restaurants. Joan was great at finding the best places. We both discovered a love of gardening in Syracuse. Our weekends were filled with picking out the best flowers and most unusual color combinations. We would walk the streets of Syracuse every day after work and admire other people's gardens. We walked because she needed to build her endurance. Another surgery was planned.
In 1992, she had her fourth brain surgery. This time it took 22 hours. I remember sitting in vigil for three days; sleeping fitfully in her room; eating nothing. I would watch her take each breath and send a prayer to God at each breath– thank you. We made it out of those dark days. We slowly learned to laugh again. We healed.
Work sent me to Saratoga Springs, NY in 1992 so Joan went to live with our mother in Endwell, NY. We both had purchased computers and were active in IRC and MIRC. We communicated almost every night. Joan settled into a relaxing pattern. She worked part-time in a medical lab and in her spare time she was on the computer talking to people all over the world. I transferred back to our hometown in 1998 so we could go for those dinners and walks again.
Joan planned exotic travel at least annually. This wanderlust culminated in a trip to New Zealand in December 1999 to see the New Millennium. Of course I was in fits of worry, but I am glad she did it.
As it turns out, the New Millennium was not kind to Joan. A spinal tumor was removed in Syracuse in June of 2000. Joan never walked again. What followed was a period of time in a nursing home in Vestal, NY. The nursing home was only three miles from my house so I could visit her everyday. I'd bring my dogs with me. We got yelled at a lot because, with dogs in her lap, I would wheel her around the halls at ramming speed.
We were lucky to get Joan placement in independent housing. Finally, she had her own apartment. No mother or sister to harp at her for being messy. Even better, she had aides to take care of all of that for her. We would talk regularly over the computer. Our favorite thing to do while on-line was to watch the same television show and write a commentary on all the action. We loved figure skating especially.
So now we come to March 2002. I fought her decision to go to Los Angels bitterly. I begged her not to go. How could she have forgotten the dark nights of her last surgery? The nights I would have sold my soul for just one more breath in her lungs. I felt confident the insurance would not approve this; that the doctors would decide she was not a good candidate; that she would go to New York City instead.
There were no impediments. Joan went to Los Angles. Joan's time had run out. NF2 won the final round. I will never be the same again.