In loving memory of
Pauline H. Siegel
It is with deep respect and admiration, and a profound sense of loss, that we remember our dear friend, Pauline Siegel, who passed away on Tuesday, August 15, 2017.
Pauline was our “Queen,” and her light will continue to guide us. It was Pauline’s 1994 diagnosis of TM that catalyzed the formation of SRNA. For over 20 years, she worked with her husband and SRNA President, Sandy Siegel, to educate, support and inspire others in SRNA community. It would be difficult to find a SRNA member who has not been touched by the Siegels’ collective warmth, compassion, and commitment to the organization.
Outside of SRNA, Pauline’s life revolved around her family, students and friends. She taught elementary school in Ohio for twenty-five years. She was beloved – as a wife, a mother, a sitte (grandmother), a daughter, a sister, an aunt, a teacher and a friend to many. She was also a loving mom to her cherished service dog, Kazu.
Pauline and Sandy shared an incredible bond that was evident whenever you saw them together or spoke to one of them about the other. Pauline was the light and love of Sandy’s life, and the driving force behind the incredible and impactful work Sandy has done on behalf of SRNA community.
At Pauline’s and Sandy’s wedding, their son, Aaron, sang “Here Comes the Sun.” In remembering that celebration, Aaron noted that “the sun was an important symbol for the hope and optimism of their new life together”. During their honeymoon, on a beach in the US Virgin Islands, Pauline and Sandy watched a solar eclipse. And just after Pauline was laid to rest, her mourners joined people across the country in lifting their eyes to the heavens to witness that very same sun go dark during the recent total eclipse. In hiding its face in darkness, the sun mourned the loss of Pauline, a truly beautiful soul, with us.
Despite the difficulties she faced, Pauline always managed to see and feel the blessings of her experience, and never lost hope for a better tomorrow. Pauline lived her life trying to improve the future of other people with TM and other rare neuroimmune disorders – NMOSD, ADEM, ON, and AFM. She was a powerful advocate, and touched us all with her compassion and vitality. It is with great honor that we announce the establishment of The Eclipse Fund in memory of Pauline H. Siegel. The fund is designed to drive transformative research that will eclipse all of our efforts to date in further restoration and repair.
Pauline’s is a legacy of hope and, in her name, we will drive research forward to find a cure for rare neuroimmune disorders and enable spinal cord repair.
Reflections on Pauline that were written by her sons, Aaron and David, as well as a remembrance from the Ohio State Senate, are shared here:
I remember sitting down to a Chinese dinner with my Dad and brother while he explained to us that he was going to be bringing Pauline, his new girlfriend, to meet us. And as we giggled over our “poo poo platter”, I think he was hoping we would somehow muster our best behavior for her.
That didn’t happen, it would never happen and it never needed to. Pauline walked into a house of mullet-wearing, Browns fan bachelors who became all too accustomed to going to the bathroom with the door open. She rolled with it.
Pauline came into our lives just in time to partake in all the drama that teenagers have to bring and she approached it all with the same open mind she did everything and everyone. No judgment…she would offer her thoughts if asked but never pushed her thoughts and opinions on me.
Pauline always radiated positive energy, despite the extremely difficult hand she was dealt. Everyone that met Pauline, loved her. Anytime I talked with her about challenges I was experiencing in my life, she listened fully and expressed sincere empathy. Many people in her shoes would have used the opportunity to one-up with challenges of their own. And while Pauline would have had every reason and right to do that, it wasn’t her. You never heard her complain about her life circumstances.
Pauline was strong and she was patient and she was a really good soul. Her gifts made her especially suited to her years in the classroom with children but also to lending her ear and heart to many of her friends around the world in SRNA that needed someone to talk to.
She was sitte to her grandchildren…Lebanese for grandmother. And she holds a special place in their hearts. Being a grandmother was so important to Pauline and we will make sure she is remembered for everything that she was to us and everything she would have continued to be to them as they grew older.
Over the last couple days, I have been trying to make sense of all this and it’s impossible. None of this will ever make any sense…
When my dad and Pauline got married, they asked me to sing “Here Comes The Sun” for them at their wedding. On that day, the sun was an important symbol for the hope and optimism of their new life together. Here, today, as we all mourn together so too does that very same sun as it hides its face in mourning for the loss of a beautiful soul.
I love you Pauline and I will miss you.
There’s not much I’m going to be able to say that’s not going to bring tears to your eyes and I apologize for that in advance. The reason for this is simple. Pauline was taken from us tragically too soon. If any one person on this earth deserved to say her final goodbye in the most heavenly, peaceful way, it was Pauline.
There is no justifiable reason for the loss of such a lovely woman. Time may dull the sorrow. And our love and support for one another may help to ease the suffering, but nothing will ever make this ok.
So where do we go from here? I would like to share with you some of my fondest memories of Pauline that I am sure will strike a chord in your hearts and hopefully lift our spirits as we commemorate the life of one of the most positive, joyous, caring, selfless, loving and loved people in our world.
I will start as Pauline started each of her 25 years as a teacher in the Worthington School system. Standing in front of her students, Pauline would adorn this feather boa and declare her classroom a democracy, and with the crown perched upon her head, remind them that she would still be acting as their queen. Fun fact, Pauline was also the Queen of the Transverse Myelitis Association.
Pauline was a teacher through and through and truly cherished working with kids. Especially her own grandchildren. To help distinguish herself amongst the plethora of grandparents, she asked that our kids use the Lebanese word for grandmother, which is Sittie. And there was no better Sittie than Pauline. Leo, Stella, Maceo, Van and Rhys all adored their Sittie. She wasn’t going to let her difficulties with mobility interfere with her relationships with her grandkids. She was the first to crawl on the ground with them and chase them from room to room, building lego sets, swimming through the vast carpet oceans filled with angler fish and whale sharks. Pauline had a passion for reading. And she never missed a chance to read Leo his Star Wars sagas and Stella her favorite Elsa and Anna stories.
And how many other children can boast that they rode through the zoo in the lap of luxury, literally, cruising on Pauline’s lap on her motorized scooter, what our kids referred to as the Sittie mobile.
Pauline loved anything to do with water and the beach. I know her and my Dad were pining for the years to come, when they could take our whole family to a vacation home on the beach. I am so sad that she won’t get to live out that dream.
Pauline was always very conscientious about not wanting to overstep her parenting bounds. She wanted to respect the fact that my brother and I already had a mom and she tried to find a balance on how active a role she was going to have in shaping our adolescence. Those of you who knew my 9-year-old self in 1989 would definitely agree that it took a village. Pauline was as sensitive and sweet a human being that you will ever meet and one cannot help but to treat her with kindness and love in return. Knowing of my legendary status of a grouch upon waking, my brother Aaron and my Dad would enlist Pauline, as the only one who should wake me from my nap if I had fallen asleep before dinner. It was inconceivable to raise your voice to Pauline.
Pauline always put family first. So earlier when I said she tried to find a balance on how involved she felt she should be in our upbringing, it was never from a lack of want. So when she was finally blessed with grandchildren, there was nothing on this earth that could have stopped her from being the best, 100% engaged Sittie to our kids.
As I’ve said, family was always very important to Pauline. She would call home 3 or 4 times every week to talk to her Mom and Dad. She built very special bonds with those dearest to her.
I never corrected people when people would assume I was Pauline’s son, not only because she’s been such a big part of my life for 28 years, more so it was that we had a very special relationship, the kind you have with a mother.
Those motherly instincts truly kicked in when we were driving in the car. No matter if it was me driving or her, if there was the slightest sign of impending danger, she would yell “Yettada” and thrust her arm across my chest, on the off chance I was going to be hurled through the windshield.
And boy oh boy, I am certain everyone in this room knows of her fondness for 2 things: the color purple and chocolate. My brother and I were two of just a handful of Jews in our elementary school. But I can guarantee the chocolate Easter bunnies of our gentile peers, would have paled in comparison to the behemoth Pauline stuffed in our basket each year. And I will never forget her sage advice: No matter what their actual size, when it came to brownies, cookies or anything chocolate, Pauline would always tell us to “Take 2, they’re small.”
Another fun fact about Pauline: she loved fantasy violence. I have a very vivid memory of going to the movie theatre with my Dad, Pauline, and my brother to see Terminator 2. Aaron was 13 and I was 11 at the time. For the sake of the little ones listening, I’ll choose my words wisely. I remember a scene where the bad terminator’s arm morphed into a sword and pierced into the ocular region of another character. I remember looking over to see my Dad and brother covering their eyes and Pauline just smiled at me and said Woah!
Pauline never missed a chance to enjoy culture, especially that of her own heritage. She taught our kids to say Ana Hubik, the Lebanese words for I love you. This became the tradition with her upon leaving. To help keep Pauline, Sittie in our memories, we will continue this tradition with our kids. Pauline, may you rest in peace. Ana Hubik Sittie.
In 2016, Pauline was a Hope Ambassador for SRNA’s Myelife. My Hope Awareness Campaign. Pauline’s story is a powerful reminder of her positivity and hope for the future.
Pauline’s Hope Ambassador Story
On Sunday, July 29th, 1994, I was completely paralyzed from the waist down from transverse myelitis. I had a bout with the flu that lasted for a couple of weeks which was followed by a week of low back pain. That the flu and back pain could possibly be symptomatic of an auto-immune disorder that would cause complete paralysis was not anywhere in my 35-year-old mind. My attack came on suddenly and I fell onto the floor with excruciating pain. My husband, Sandy, called an ambulance and I was rushed to the closest hospital. I spent nine hours in an emergency room while the doctors ran tests looking for evidence of a traumatic injury. When he found nothing, coupled with no history of trauma, he began to suspect that my pain and paralysis was caused by some type of psychosomatic phenomenon. It wasn’t until after I was unable to urinate that it dawned on him that something neurological could be going on with me. He then brought in the neurologist on call.
The neurologist did not know what was going on either, but he got me admitted and he began high dose intravenous steroids. The testing lasted throughout the week and included MRIs, a lumbar puncture and many blood tests. I was released on Friday. As I left my room, the neurologist told me that my diagnosis was transverse myelitis. I had never heard those words and had no idea what my future might look like. I didn’t know if I would be paralyzed for the rest of my life; I didn’t know if this was a disease that could kill me.
I went to a rehabilitation facility where I spent the next two months. Nothing moved below my waist. After a month, I was finally able to move the big toe on my left foot. Very slowly and in amazingly small increments, I began to experience a return in nerve and motor function. I received intensive out-patient physical therapy for two years. I went from a wheelchair to a walker to being able to walk with canes over those two years. My long term symptoms have been bowel and bladder problems, motor weakness, neuropathic pain, fatigue, depression and cognitive dysfunction.
I had been a kindergarten teacher for three years when I had my attack. Six months after onset, I was back in my classroom teaching a morning and an afternoon kindergarten class. I was an elementary school teacher for another 22 years.
In many ways, my story is also the history of The Siegel Rare Neuroimmune Association. Shortly after I was diagnosed, Sandy and I found the Gilmurs from Tacoma and we established our organization. Along with Jim, Debbie and many dedicated and selfless volunteers, we worked to create SRNA.
Almost everything about having TM has made life a challenge. Activities that able-bodied people take for granted require so much time and energy from me. I sometimes feel like I’ve run a marathon after brushing my teeth or putting on my socks.
If given the choice, I would have chosen to never have heard the words, ‘transverse myelitis.’ But I wasn’t given the choice. In spite of the losses that I regularly mourn, I am aware every single day that this experience has offered me many blessings, as well. I have been surrounded by the most amazing children, teens and adults from every nationality and ethnic background on the face of the earth. I have been introduced to courage and generosity and kindness in ways that might not have been possible under any other circumstances. I have worked with people in SRNA who have given so much of themselves for a cause that is not at all understood or appreciated outside of our community. I have had experiences, such as camp, our symposia and Cody’s scuba adventure that would not have happened otherwise. And I have Kazu, my service dog, in my life. In spite of the struggles, I always see and feel the blessings. And in spite of the difficulties, I’ve never lost hope for a better tomorrow.
If you would like to write a few words or share your memories of Pauline, we invite you to leave a comment below.