I met Joanie in 1996 at an SWC gathering in Secaucus, New Jersey. I was drawn to this tall, exuberant girl who seemed to make the place come alive with her presence. As I talked to Joanie I was taken aback by the fact that she could not talk to me very well and that her face seemed paralyzed "Stroke," I thought. But then she pushed a pad and pen in front of me. I had never met anyone with NF2 nor did I even know what it was.

Joanie freely explained to me via notes about the tumors pressing on her nervous system. She told me how the disease robbed her of the ability to talk effectively and how she was not able to smile and show her pleasure at our meeting. The fact that this person wanted so badly to share in our interaction, but could not, was similar to my own struggles with the hearing world, so I could immediately empathize. Then she told me that I needed to learn sign language and I needed to do it NOW. haha

I had lost a sister to a terrible cancer at 27 yrs old and I thought that nothing could be worse. But after learning about NF2 I decided it is one of the most difficult and debilitating conditions a person can have because the person is stunted from free expression and has to also deal with a society that oftentimes judges others by how they look.Tumors cut off the central nervous system, paralyzing the natural expression of the face, the hearing is robbed, and speech is distorted. Soon, the tumors affect other parts of the body.

Months later I met Joanie in Florida and this was also my first meeting with Rich, whom I had met online and who was also deaf like me. Joanie had prepared me earlier in the month for this meeting, telling me I had better go to Florida well-equipped with condoms and that she had a "surprise" for Rich and me. On the day of our meeting she presented Rich and me with a gaily-wrapped book on Sexual Sign Language. I was so embarrassed! Here was this book on sex being pushed at us! And then Joanie gave everyone within distance a colorful condom and demanded we all use them. She sure was colorful!

I was not able to attend a few conventions and did not see Joanie for awhile but we continued to talk online. At that time I was the editor of the SayWhatClub's newsletter and it was Joanie's idea to begin a recipe column and she collected recipes from people and put together holiday dinner menus... She liked bugging people for information and that was her driving force, her ability to push and motivate!

Gradually over the years my focus changed and I did not go online to the chats as often. I met Joanie again in Cape May and she was still the lively, exuberant, devilish girl that I remembered. We had a real blast and she told me that she was still looking for a boyfriend.

I did not see her again for a while, but online I heard about her surgery and her need for a wheelchair. I just could not imagine Joanie in a wheelchair and being made helpless! I spoke to her a few more times but there was something about Joanie that had changed and a part of her had been claimed by the illness ransacking her mind and body.

Joanie touched my life in a way that no one ever could. She showed me how to look beyond the disease to the soul of the person that yearned for acceptance and love. She was level-headed and wise in many ways. On this note, I can well understand Joanie's decision to go forth with this surgery. Though I will miss her, I understand her need to move on.

--- Suzanne Gossett