President’s Column

You are not alone.

When Pauline received her diagnosis of transverse myelitis in July 1994, she was immediately faced with all the horrible symptoms that are usually associated with this disorder. Paralysis, horrible nerve pain, bowel, bladder and sexual dysfunction, spasticity, fatigue and depression. It was a nightmare. All her physical symptoms were magnified by our feelings that we were going through this awful experience alone. We didn’t know anyone else who had this diagnosis. There was no one to offer us any kind of information or support. We had so many questions for her doctors, and they had so few answers. Our sense of isolation magnified our fears. Pauline’s future seemed so uncertain.

A few months after Pauline was diagnosed with TM, my mother discovered the National Organization of Rare Disorders, and she began receiving their newsletter.  She excitedly called one morning, telling us that someone had published a short paragraph about wanting to start a support group for transverse myelitis. There was a name and telephone number included in the information. We made the phone call on a Sunday morning. I remember it like it was yesterday.

Pauline and I spent an hour on the phone with Deanne Gilmur. She had a daughter who was diagnosed with TM when she was 18 months old. We spent that time on the phone sharing our experiences.

In that phone call, we learned the power of connection.

We learned for the first time that we were not alone. That phone call also initiated those support group efforts which became The Transverse Myelitis Association.
Looking back over the past 30 years, there are so many memories and milestones. None are more vivid or significant than the occasions that brought people together from our community.

The first time the officers met at a rare disease education program held in Columbus in 1997.
Our first meeting of The Transverse Myelitis Association members in Seattle in 1999.
The first family workshop in Columbus in 2002.

We watched connections being made between people over and over again. No one ever forgets the first time they met someone who has their disorder and shares their experiences. Those people share a bond that will remain with them for the rest of their lives.

In each of these meetings, and the many that followed at our symposia, and our quality-of-life family camps, and our walks, I’ve watched the creation of the most amazing friendships. These shared experiences result in the strongest bonds. For most people, being diagnosed with a rare neuroimmune disorder becomes one of the most consequential events in their lives. The impacts are profound, and unfortunately for many, last for a lifetime. No one understands this impact more than another human being who has gone through this same experience.
When we were first getting our organization off the ground, there was no internet. As soon as it became available, we had the good fortune of having Jim Lubin as one of our officers. Jim was diagnosed with TM when he was 21 years old. Jim had a unique talent for information technology, and no one has done more to forge connections in our community. He established the Transverse Myelitis Internet Club, one of the first list serve groups on the internet. We quickly had members participating from all over the world. People shared their stories and experiences 24 hours a day, 7 days a week.

The international headquarters of the Association was Pauline’s and my home. Our telephone number was listed everywhere, from our publications to the National Institute of Health to the Christopher and Dana Reeve Foundation. We were receiving phone calls from people day and night from around the globe. Pauline and I had no training whatsoever to be the people on the other end of the line. Our education and experience provided Pauline and I with near to nothing to offer to people who called. Pauline was a kindergarten teacher. I was a cultural anthropologist.

It was the connection that mattered.

We spent hours on the phone with people. They would describe everything that had happened to them from the day they experienced the onset, through their hospitalization, through their rehabilitation experience. We listened to all these personal and family crises, and the most tragic being those that involved children. It would have been totally inappropriate for us to share medical advice with them, because we had no medical training or experience. In any event, we would have had little medical advice to offer, because there was so much that the medical community didn’t understand. We had all the same questions that they had. There were no medical centers or specialists to refer them to because there weren’t any.

What Pauline and I had to offer was patience, empathy, compassion. We offered them a connection. If they asked, we would share Pauline’s experiences. When they hung up the phone, they didn’t know very much more than they knew before they made the call. But they made one of the most important connections they’d made in their lives, and they learned that they were not alone.

Very early on, we learned about neuromyelitis optica (most people told us that they had Devic’s disease) and acute disseminated encephalomyelitis. We barely understood anything about transverse myelitis, so we were in no position to share any kind of helpful information about these other disorders. We eventually figured out that they found the TMA and made a connection with us because their physicians told them that the inflammatory attack in their spinal cord was transverse myelitis. Eventually, I figured out that people only get to have one of these disorders, and I would share that important information.

We understood how isolated and afraid we were at the outset, so taking all newcomers came very naturally to us. That same philosophy exists in our organization today. The cause of paralysis could be from a spinal stroke or radiation myelopathy or any of the other rare and horrible things that can happen to a central nervous system.

When you find us, you’ve found your home.

Often, Pauline and I would hang up the phone and cry uncontrollably. So much pain and suffering and so many tragedies. As difficult as these conversations were for us, we never failed to pick up the phone in our kitchen, because we understood the power of these connections.
I have so many people approach me and recount the telephone call or calls that they made to us over the years. I only remember some of these calls. We’ve spoken to so many people. I’ve often reflected that no one will ever speak to more people with these rare disorders than me and Pauline, because no one else would be stupid enough to publish their home telephone on the internet. If you google the Siegel Rare Neuroimmune Association, you get a nice photograph of our home with Pauline’s purple garage door. Our concern about privacy evaporated a very long time ago.

From the very first day until today, one of the most important things the Siegel Rare Neuroimmune Association offers to people is a connection to others in a way that no one else could possibly relate to or understand.

You are not alone.

Please take care of yourself and each other.
Sandy