The Siegel Rare Neuroimmune Association held the first children’s and family workshop in Columbus, Ohio in 2002. Families came from all across the country. Physicians and therapists also attended from all over the country. They not only donated their time, they also brought their own families who volunteered during the program. For all the children and their parents, it was the first time any of them had met other children and their families diagnosed with a rare neuroimmune disorder. In 2002, we now know that some of these children had AFM, ADEM, MOGAD and NMOSD. In 2002, most of these children were being diagnosed with TM.
It was an incredible weekend. The parents spent three days in an excellent education program. The younger children spent one day at the Columbus Zoo and the other at our Museum of Science and Industry. The older children participated in a recreation program led by Pauline and my son, David, organized by Nationwide Children’s Hospital and the Columbus Parks and Recreation Department. It was a very emotional weekend. Most of these parents and children have remained friends. Some of these children are now coming to our family camp as volunteers.
During the last day of the education program, I had the opportunity to speak to the families and to the physicians. I told them that their children were going to grow up and have the same opportunities that any child had without TM. Their children were going to grow up, go to college, get married, have families and pursue whatever careers they wanted. In 2002, I had no idea what the hell I was talking about, but I felt in my bones that having the symptoms of TM shouldn’t stop any of these children from living the best life.
My message was that this is the only life we get, and regardless of the hand we are dealt, we all need to make the most of it. There were lots of tears while I was speaking to the parents, and no one cried more than me. And if you know me, that should come as no surprise.
I knew what I was saying was the case … and I had Pauline’s experience to rely on, as well. Pauline was paralyzed from below the waist. She had all the symptoms that come with the spinal cord damaged in the lower thoracic region. She also experienced pain, fatigue and depression; what I have come to think of as the triumvirate of suffering. Life was never easy for Pauline, but she sure made the best of it. She went into her classroom every day, either on her scooter or wheelchair. Caring for the young ones could be a physically grueling experience, but she taught kindergarten for eight years. She also taught second, third and fourth grades. She retired after 25 years of teaching. She touched hundreds of children’s lives over those 25 years. Some of these children became elementary school teachers from her influence.
Pauline loved being with her family and was the most amazing Sitte (grandmother in Lebanese). She loved reading to her grandchildren and spent hours playing with them and reading to them on the floor. Pauline also loved the water. She went on Cody Unser’s first scuba adventure and became certified as a scuba diver.
Pauline applied for a service dog from Canine Companions for Independence. She was matched with Kazu. Kazu changed her life and mine. There are more than a few people from our community who applied for service dogs after watching the relationship between Pauline and Kazu. Recently, the theatre department at The Ohio State University performed a play about Pauline and Kazu and the prisoner who puppy-raised Kazu.
Pauline lived an incredibly rich and full life. Yet, it was a hard life. I could write a book about it and I have. So much of the book I wrote about TM includes many of her life experiences. Pauline’s diagnosis and her paralysis did not define her as a human being. It was a part of who she was, but it wasn’t who she was. Pauline was a wife, mother, Sitte, teacher, sister, daughter, and friend. That is how Pauline thought of herself. The paralysis and the other horrible symptoms became wrapped up in the whole ball of wax.
Pauline’s identity was complicated. If we’d never helped to establish this organization, I suspect that TM and her paralysis would have been focused almost entirely on her medical issues. Her role at SRNA totally changed that identity, because she was, in fact, The Queen of SRNA. As we were involved in everything, Pauline was often the first person many people with TM spoke on the phone with the same or a similar disorder. We were traveling regularly across the country to participate in symposia or awareness events or family camps. Pauline was a very private person but she was thrust into this role by virtue of our doing this advocacy work. She performed her role with graciousness, generosity and courage. Taking on this role elevated TM as a part of her identity in a way that was way beyond what would have been had we not been involved in this work.
Pauline’s life was cut short by a horrible tragedy. I feel that sadness every day of my life. I also think about all of what she would have done in these years while she was retired. I have no doubt that we would have traveled everywhere, that she would have spent her years with other CCI service dogs, and she would have spent lots of time underwater being thrilled and amazed by all of the spectacular sea creatures she loved watching. She would have voraciously consumed hundreds of books. But most importantly to her, she would have been with her family, especially her six precious grandchildren. It all sucks mightily. Her memory should be a blessing.
Over the past thirty years, one of my great joys (and this work isn’t packed with joy) has been to watch the many young children I’ve befriended along the way grow up to become independent, self-confident adults. I’ve watched some of them become great athletes and Paralympians. I have watched many of them excel in school, go to college, and become speech therapists, occupational therapists, physical therapists, physicians, or go into the business world in marketing or accounting or finance. Some have gone into engineering. Some have become teachers. Some have become homemakers. Some have married and have children. Just as I told the parents in 2002, these children are growing up to do and to be whatever they’ve wanted.
No one escapes the difficulties that come with life. Life is filled with disappointments and tragedies. I’ve always told my children that when life is running smoothly to enjoy every minute of it because there’s a bushel basket of crap around every corner. It is inescapable. It is unfortunately the case that the people in our community have been dealt larger baskets then most. I’ve learned in the most detailed and intimate ways just how much suffering is involved in these disorders. I watched it in Pauline every day, and I’ve spoken to thousands of people on the phone who shared all of it with me. Why share that suffering with me? Because I was willing to listen. Listening was the best I could do, because cultural anthropology didn’t offer me too many great treatment options.
Our personalities, our backgrounds and our life experiences help to determine how we manage all of life’s problems, and there are no greater problems than the ones that impact our bodies. When your body isn’t working, that becomes the only problem that matters. For people with disabilities, chronic body problems become a way of life. I’m not an expert on anything. I can’t say how people manage these issues in how they construct their identities. I only know that it is different for everyone. And the nature of the issues has to impact this process. For a person who has unrelenting pain or has absolutely no bowel sphincter control, paralysis is the least of their problems. All I can say is that over the past thirty years, I think I’ve seen it all. From people who have incorporated their disability into their identity and self concept in the healthiest ways possible, to those who have become so bitter and resentful and angry that they are owned by their symptoms and diagnosis.
I make no judgments in either case or in any case. People always get my compassion regardless of how this all works for them.
Life is hard. For many of you, it is harder than it is for most. I can only hope that you are finding ways to live your lives to the fullest. It’s the only life we get, and we all need to find ways to make it the best life it can be.
Please take care of yourselves and each other.
Sandy
