Rencontrer Un Ami Spécial

The internet emerged shortly after we established The Transverse Myelitis Association (TMA). Jim, one of the original officers of the Association, started the Transverse Myelitis Internet Club (TMIC). It was one of the first list-serve groups on the internet. Transverse myelitis is a very rare disorder. The chances of getting TM are about 1-5 in a million. The TMIC opened the opportunity for people to communicate with others who had this rare disorder. These communications were going on across the country and around the world. At about the same time, AOL began offering people two MBs of space to set up a web site. Jim used his two MBs to set up the first TMA web site. Before the internet, the only way people could find us was by our posting information in the National Organization for Rare Disorders newsletter. We grew very slowly. After Jim’s work, our membership began to grow steadily and started to include an international membership. We went from fewer than 200 members in 1997 to more than 14,000 members today from more than 100 countries around the world.

Jim will never get enough credit for how he transformed our Association. He created opportunities for people from around the globe that would never have happened without his creativity, skills and hard work. Jim often worked many hours, day and night, seven days a week. He created so much of our education, support and awareness.

The most miraculous aspect of all this work is that Jim got TM when he was 21 years old. He became a full quadriplegic and is ventilator dependent. Jim has been paralyzed from the neck down and unable to breathe for decades. He’s experienced some return of sensation but almost no recovery of mobility. Jim does all his computer and internet work by sipping and puffing Morse code into a device that translates these actions into taps on a keyboard or movements of a mouse. I’ve written extensively about Jim in my book. He changed the lives of so many people through his work. He’s changed my life through our friendship.

We were so excited to meet all these people from around the world, and to make such intimate connections through our shared experiences. Jim would place a country flag on our web site every time a new international member would sign up. Jim also found volunteers from around the world to translate our web site and some of our important medical articles into many different languages.

Through Jim’s work, I met Roland. Roland and I have been friends for more than twenty years. He and his family are French. They live in a small village in Brittany.

Shortly after Pauline was diagnosed with transverse myelitis, Roland’s daughter got TM. She was not yet a year old. Roland found our web site and the TMIC. Roland and I communicated through letters for a long time, and later started writing each other via emails. As the newsletter and journal editor, I started a column called In Their Own Words. People from our community would submit their personal stories for publication. These were so important from both an education and support perspective. As a rare disorder, people feel isolated in their experience. It is helpful for people to learn that they are not alone. Roland wrote one of the first In Their Own Words columns about his daughter and his family. It is heartbreaking for a person to get TM. It is more than heartbreaking when it happens to a child, such a young child. She was paralyzed below the waist before she even had a chance to walk.

When we put on our first children’s and family workshop in Columbus in 2002, Roland contributed his daughter’s photographs and her story to help me raise awareness and money to fund the program.

Roland became an active participant in our community. Over the many years, he has generously shared his experiences and has become a valued resource in our community. He makes himself available to others to share information and support.

Over the years, Roland has become a dear friend. Our communications became very personal, sharing information and experiences about our families and our lives. We shared photographs from our travels and we shared our lives as our children went through all the stages of growing up and becoming adults. All our communications were through writing. We had never spoken to each other. I would say that Roland’s English is very good. I do not know a word of French. In fact, I don’t pronounce Roland’s name correctly. I can’t say his name without sounding like Pepé Le Pew. Roland is an excellent photographer and writer.

The intensity of relationships become magnified when you share such a powerful experience. That is certainly what happened between Roland and me. We shared similar interests and enjoyed communicating with each other.

Last winter, I received an email from Roland letting me know that he and his wife had just booked a vacation to New York. They had been married thirty years ago and honeymooned in New York. They were returning to celebrate their anniversary, and they were going to bring their daughter. He wanted to see if there was any possibility I could meet them in New York. I wrote back that there wasn’t any way I was going to miss this opportunity. I booked my flight and made plans to stay with my brother who lives in New York. So does my friend GG who also has transverse myelitis. I wanted to be sure that GG would be able to meet Roland and his family.

We spent two days together over that weekend in August. They were staying in a hotel in Times Square. GG and I went to the hotel and met Roland, Pascale and Coline in the lobby. It was so emotional to meet them face-to-face for the first time. Roland and I hugged, and of course, I cried. We had such a wonderful time together. They were so looking forward to meeting Pauline. We shared such deep sadness about Pauline.

I was grateful to spend time with them. I was grateful that they got to know GG. I was grateful that they got to meet my brother and brother-in-law. What an emotional weekend.

Since our meeting, Roland and Pascale have become first-time grandparents. And, of course, I receive lots of emails from Roland with wonderful photographs of the new parents and grandson.

It was a sad good-bye, with every expectation that the next time I see them will be in their small village in France. If I’m ever allowed to leave my house.