You Are Not Alone

By Sandy Siegel, President of the Siegel Rare Neuroimmune Association

You are not alone …

Sunday, July 31, 1994 at 5:30pm. That was the very moment that life changed forever for Pauline. Life changed for me and for Pauline’s family and friends, as well.

And life also changed for all of you!

I can’t remember what I had for breakfast this morning, but I vividly remember so many of the events surrounding that horrible moment and all of what occurred afterwards. Most everyone who has gone through the onset experience from these rare neuroimmune disorders carries the traumatic memories from their experience in great detail. I know this for a fact because I’ve listened to many of you tell your stories while speaking with you on the home telephone in our kitchen.

I started to get this numb, tingling sensation in my right big toe that spread through my foot and up my leg. I started to feel an intense, sharp pain in my back. It felt like I was being stabbed with a knife. My bladder felt full but I couldn’t pee. And then I couldn’t move my legs.

I’ve listened to the stories over and over again. From the acute episode to rehabilitation to the many difficult symptoms that people experience after damage to the nervous system.

Pauline’s story is well chronicled on our website and in my book. If you have any of the rare neuroimmune disorders, I strongly encourage you to read the book, The Patient Experience with Transverse Myelitis. It includes everything I know for a mere $18. If you have a kindle, you get my thorough brain dump for $2.50 here.

Pauline spent a week in an acute care hospital receiving intravenous steroids. There were lots of doctors in her room throughout the week, and there were numerous tests done. She was totally paralyzed from the waist down and lost all bowel and bladder function. We had no idea at all what was going on. As Pauline was being moved to a specialized rehabilitation hospital for people who suffered a traumatic spinal cord injury or stroke, a doctor mentioned a diagnosis of transverse myelitis. She came into the hospital on a Sunday. We heard the words transverse myelitis for the first time on the way out of the door on Friday.

What is it? How did it happen? Could it keep happening? Was Pauline going to get better? Was Pauline going to get worse? Was Pauline going to survive?

Nothing. Not a thing. No explanation of the disorder. No explanation of cause. No prognosis.

Pauline spent the next two months focused on intensive rehabilitation therapy. She was so focused and worked so hard on her therapy. She gave herself little time or energy to be worried about much else. She was a kindergarten teacher. It was summer break. Her focus was on getting better so she could dance around her classroom like a butterfly in the fall. I, on the other hand, was focused on being worried about everything and being about as uncomfortable as a human could be with our total ignorance about what was going on.

I was working full time and was going home in the evenings to care for our two young teenage sons. On my way home from work, I would stop at the hospital to see Pauline. The doctors, nurses and therapists came to know me well. I was the nervous wreck who popped in every day to cheer on Pauline while she was working so hard and getting her head around the idea of being catheterized regularly and having no bowel sphincter control. It was apparent to all with eyes to observe that our heads were in a constant state of implosion.

Finally, likely out of sheer pity, a resident rehab doctor stopped me in the hallway to ask me how I was doing. I’ve learned over the years just how rare his gesture was in this situation. When a person goes through a medical emergency, such as the acute episodes from these disorders, all the focus is on the person with the disorder. The family members who are as much in a state of shock, are pretty much ignored by the medical professionals. I totally get it. They have more immediate concerns to deal with. The family, unfortunately, is drowning and they are rarely offered a life jacket. I have no idea what I said to him, but I remember like it was yesterday what he said to me. He told me that transverse myelitis was a symptom, a collection of symptoms. I’ve written extensively about the problematic medical nomenclature and the diagnostic mayhem associated with this notion, so I won’t get into it. Suffice it to say, I left that conversation with the idea bouncing around in my head that the person I so dearly loved was paralyzed, was unable to pee and had no control over her bowels from, as he put it, a “symptom.” I spent the following weeks with my head turning around on my shoulders like the girl in the Exorcist.

If I continue on with this story, I’m going to end up writing a 600-page article. I’ll stop. Please read my 600-page book.

Pauline and I started to learn that very little was understood about transverse myelitis. We also learned that there was no information available for people diagnosed with transverse myelitis. There was almost nothing in the medical literature, even though physicians have known about transverse myelitis for well over one hundred years. That wasn’t an encouraging sign. The doctors treating patients with transverse myelitis were basically operating by the seat of their pants. There was one acute therapy, and it didn’t always work. It didn’t work at all for Pauline. Rehabilitation was modeled after people who had traumatic spinal cord injuries or strokes. Symptoms were being managed by extrapolating from experience with multiple sclerosis and other neurological disorders. Most unfortunately, little has changed in that regard.

There were no specialists in transverse myelitis anywhere in the world. There were no medical centers with a focus on transverse myelitis. There were no support groups. There were no websites that included information about TM. In fact, there was no internet! If you wanted to read something that included the words transverse myelitis, you had to make a trip to a medical school library. And absolutely no research being done on transverse myelitis. It sure didn’t look like there had been any meaningful basic research on this disorder at all for over one hundred years.

Pauline and I felt so alone going through this experience. And we were so uncomfortable with how little we knew about what happened to her and what could possibly happen to her in the future. I heard it many times from Pauline, and from so many of you, that there was a deep fear about having to go through this experience another time. She didn’t know if she could handle it. I watched. I understood her fears.

Going through this experience in ignorance and alone was frightening and demoralizing.

By the end of 1994, we found Deanne and Dick Gilmur. Their 18-month-old daughter had been diagnosed with transverse myelitis. Shortly thereafter, we found Jim Lubin, Paula and Mike Lazzeri, and Debbie and Michael Capen. This was the core group who founded The Transverse Myelitis Association. We were The Transverse Myelitis Association because we had never heard the words acute disseminated encephalomyelitis or neuromyelitis optica or optic neuritis. That all came later. Not even physicians knew about AFM or MOGAD. That came much later.

Along the way, there was a whole legion of volunteers who contributed their resources, creativity, and energy to our cause. Geoff Treglown, Stephen Miller, Ursula Mauro, Margaret Shearer, Ann Moran, Lew Gray … many, many wonderful volunteers. We operated as an entirely volunteer organization for almost twenty years. That was nothing short of a miracle. Most of us worked full time jobs and had families. We did all the work in our spare time, and we had no time or energy to focus on raising money to make all this work happen. We did what we could, and it wasn’t enough. We know how much more needs to be done, and now we are counting on all of you to help us make this critical work happen. I’ve said it so many times before … we need for you to help us help you!

Our focus from day one has been to provide as accurate and thorough information to our members as possible. To provide an education to the members of our community so that they can become the best and most effective advocates for their medical care. To foster a sense of community among our members by offering the most compassionate and caring support, as well as gatherings such as our symposia, walk and roll events, and family camps. To provide education opportunities to the medical community and to grow our discipline by offering fellowships in clinical and research training. To support and conduct the research needed to find the most effective acute and long-term therapies, rehabilitation strategies, symptom management practices and restorative therapies for all the rare neuroimmune disorders. And to support research to better understand these disorders.

What Pauline and I experienced was horrible, and the tragedy was intensified and magnified by having to do it alone. It sucked beyond belief.

That this happened to you is horrible. It is a tragedy and it sucks, however you slice and dice it. There’s no putting a smiley fact on this experience. Period.

But … you aren’t going to go through this horrible experience alone. Like ants, bees, and gorillas, human beings are very social creatures. We depend on each other.

Being diagnosed with ADEM, AFM, MOGAD, NMOSD, ON or TM is going to be one of the most, if not the most difficult experiences you are going to have in your life. That SRNA exists means that you won’t have to go through this experience alone. You aren’t going to be totally ignorant about everything that is happening to your body or what can be done about it. You are going to have some sense of what the future might hold for you and your family. There are going to be specialists in the medical community who understand something about these disorders. There are researchers trying to understand them better and to find ways to improve your quality of life. You will be able to meet others who understand what has happened to you better than anyone else, and they will be there for you any time you need a compassionate shoulder to lean on.

That is all a very big deal. I know. Pauline knew, because we didn’t have any of this when it happened to her. None of this would have been possible without Pauline. She will always be the reason there was a Transverse Myelitis Association and now a Siegel Rare Neuroimmune Association. Her memory should be a blessing.

You are not alone.