Honoring Pauline’s Memory

On Sunday, July 31, 1994, at 5:30 in the evening, Pauline became paralyzed. I’ve written many times about Pauline’s onset of transverse myelitis, her nightmare experience in the emergency room, the mysterious diagnosis, her long and difficult rehabilitation, and the many years of recovery and managing (or not managing) all her complicated and horrible symptoms.

The Patient Experience with Transverse Myelitis, An Anthropological Perspective describes and explains all of it. If you have a rare neuroimmune disorder, I encourage you to get a copy of my book. It’s relatively cheap, all the proceeds are donated to Pauline’s Eclipse Fund for Research, and the book is full of information that we wished we had when Pauline was going through her experience.

We were so afraid while we were going through this entire experience.
Because of Pauline, you can be less anxious and fearful.

We felt so alone going through all these events.
Because of Pauline, you are most definitely not alone. There are support groups both in person and virtually, we hold an annual quality of life family camp, and we have fundraising and support events across the country.

We were totally ignorant about her diagnosis and her symptoms.
Because of Pauline, you have access to so much information about diagnosis, treatment of symptoms, long-term disease management, rehabilitation, and research. We hold education programs throughout the year collaboratively with academic centers of excellence. We offer regular blogs and podcasts. And we have an excellent website with a resource library that provides articles and video presentations covering everything known about these rare disorders.

We had no specialist to care for Pauline.
Because of Pauline, we have specialists in all these rare neuroimmune disorders, and we are helping to grow the discipline by funding the education and training of physicians. You can find a specialist in your area by searching on our medical professional network.

There was no research being done and we didn’t know of any researchers.
Because of Pauline, there is research happening on all these disorders, including restorative therapy. When Pauline died, the SRNA Board established the Pauline Habib Siegel Eclipse Fund for Research on rare neuroimmune disorders.

Pauline changed the world for people who have been diagnosed with one of these disorders and for anyone who will get these diagnoses in the future.

We recognize July as the birth of The Transverse Myelitis Association. We do so to remember how and why this organization was established, and we do so to honor Pauline’s memory. We’ve always been advocates for people with ADEM and NMOSD–from the beginning. AFM and MOGAD are relatively newly discovered disorders and we immediately included them under our umbrella. To be clear, our members also include people who have had spinal strokes, radiation myelopathies, Lupus, various direct infections of the central nervous system, related autoimmune disorders such as Sarcoidosis and Sjogren’s, different cancers of the spinal cord, and all sorts of other central nervous system maladies where people don’t have a home. We have become their home.

When Pauline died, the Board changed our name to the Siegel Rare Neuroimmune Association–to better reflect the broad and inclusive advocacy of our work and to honor the origins and history of our organization.

Today, I will reflect on that day back in July when Pauline’s and my world changed forever. I will think about just how courageous she was, how hard she fought for herself, for her family, and for all those kindergarten students who wanted her back in school. I will think about my love for her and how much I miss her.

And I will think about how it has come to be that we are beginning the 30th year of this Association. It is more than a miracle that an all-volunteer organization was able to survive for as long as we did – in large part to the devotion and hard work of Jim Lubin, Debbie Capen, Paula Lazzeri, and all the people who volunteered to do this work all over the world. It is also a miracle that we’ve been able to grow and professionalize under the direction of our executive director, Chitra Krishnan, and our wonderful Board of Directors.

It is also the beginning of August – the most difficult month of the year for me. I lost Pauline on August 15th. This date corresponds to the 23rd of Av on the Jewish calendar. While Pauline was Catholic, I follow the mourning traditions of my faith. Pauline loved the Jewish traditions. Her Yahrzeit (remembrance) will be on August 10th. I’ll light a candle for Pauline, and I will say Kaddish (the mourner’s prayer) for her at our Sabbath services that week.

I also made a contribution to the Pauline Habib Siegel Eclipse Fund for Research to honor her memory. This is an important tradition in Judaism – to perform an act of tzedakah (charity) to honor the memory of someone important to you. This is one of the important ways I honor Pauline’s memory.

If you are looking for a meaningful way to honor Pauline’s memory and to invest in your own hope that comes with research on these disorders, I would encourage you to donate to this critical fund. I would be grateful.

She was a remarkable human being in so many ways. She gave so much to so many – from her family and friends to all her students, to everyone in this community. She was selfless, generous, kind, and compassionate. She gave so much to me, and I miss her every day.

I love you, Pauline.
Her memory should be a blessing.

Sandy Siegel
President