Tuesday, September 3, 2013

A Fighter, not a Victim

To avoid the hot 1942 summer, Sandy’s family left their New York home and traveled to Moodus, Connecticut. Sandy’s stay lasted longer than he planned. While in Connecticut, he was afflicted with polio. It started with a headache and fever; shortly afterwards he was hospitalized. The health officials would not let him travel back home, so his mom chose, for his stay, the Connecticut hospital closest to New York. His parents visited, though they were not allowed to have physical contact with him – they had to stay behind a screen (as in the story told by Judith). Sandy stayed there for at least the full balance of the summer and possibly longer, leaving the hospital on Labor Day. Labor Day became a special occasion for the family, one celebrated again and again. 
Sandy remembered clearly the hospital member – nurse or assistant, he never told his children – who told him he would never walk again: “he told me I would never walk again; I told him to get out of my room and never come back”.  Sandy lost his faith in health care professionals after that.
Sandy proved that man wrong. He left the hospital with his left calf muscle atrophied, but he not only walked for most of his life, he played tennis three times a week. “Stubborn,” says his son, Les. “he didn’t even let that slow him down. He acknowledged the disease but he didn’t acknowledge any disability or handicap from it until very, very late in life.”
Sandy attributes his recovery in part to two things: the Sister Kenny Method under which the muscles were moved around to prevent them from atrophying, and the fact that his adored mother used to take him to the beach to walk on the sand barefoot, which also, he thinks, strengthened his muscles. His family attributes it in large measure to his strength of will.
Still, the shadow of polio was with him, and not just in the atrophied calf (which did not slow him down). He would never acknowledge a headache and always denied having them; Les believes this was due to a headache being what started Sandy’s disease: Sandy was unwilling to acknowledge the possibility of polio coming back. He did not like things touching his feet, probably because of the memory of the hospital bed, so his parents “built a little frame over the bed so that the sheets could hang over the frame instead of touching his feet”.
Another memory brought home to Les how deeply the polio affected his father: “When we went to an Indian Guide Camp to Catalina one year – coincidentally the same camp I took my own children to – I came down with a fever.  And I did not know at the time, I had no idea until much later in life, that that was a signal of the onset of polio, a high fever, but I did not know that. I had a propensity for headaches and fever when I was a kid, but it was always my mother who took care of me, but this was a father/son campout and I remember they called the camp doctor and I was laying there in the little cabin and the doctor came in and they stepped outside, they thought out of earshot, but I remember my dad asking the doctor in a concerned voice, ‘it’s not polio’ – something to that effect and I realized he was so concerned about that.”
In spite of his mistrust of healthcare professionals, and in spite of the recent Cutter Incident (see also here), in which several children died from an improperly inactivated polio vaccine, Sandy made sure his children were vaccinated against polio. The Cutter Incident made everyone at the time aware there was a risk; but Sandy was also aware of the horrible risks on the other side.
Sandy built a successful career practicing law, and Les and his brother worked with him and learned from him.
And then Post-PolioSyndrome caught up with Sandy. As the new millennium started, he  was starting to weaken. He no longer played tennis, and the cartilage in his good knee was gone. It’s not clear if this was part of Post-Polio Syndrome (PPS) or just aging. Sandy started using a cane, then a walker, and finally a wheel chair. His cane was the first aid he used, and he got it from a 99 Cent store which sold it as a walking cane. Then one day it broke, and he hit his back against a wall as he twisted to avoid falling. Sandy believed it was the fall that triggered the PPS. He filed a lawsuit against the 99 cents store and the makers of the cane, and his sons helped him prepare it. Through his determination he ended with a $40,000 settlement.
By 2005, Sandy was in a wheelchair. He hated it. For years he fought succumbing to polio, now he could no longer do it. But he was a realist, so he bought a wheelchair before July 4, 2005 and bought a van and remained mobile, alert and active. It was at that time he met the only doctor he came to trust, Dr. Jacquelin Perry, who worked on polio and post polio syndrome and recently died herself, in her 90s. Dr. Perry taught both Les and Sandy a lot about post polio syndrome. Les describes her as a “remarkable woman, who really was the one who identified post-polio as a late onset symptom of polio survivors.” She is described as “the Grande Dame of Orthopaedics” and admired forher revolutionary work in helping polio survivors and in relation to post-polio syndrome. Sandy learned to trust her judgment and respect her.
Even with post-polio syndrome, Sandy demonstrated the stubbornness that helped him walk again after his experience with polio. Les tells about how Sandy managed to be mobile for his granddaughter’s graduation: “When Leah graduated it was a hot day and he had to cross a long field and that guy like the energizer bunny just kept going and going and he made it to the graduation, and she graduated in 2006. That was just after, within a year of him getting that wheelchair he had to make it across that lawn. And he did.”
Eventually diagnosed with terminal cancer, Sandy was sent home in a hospice care. Les tells how Sandy refused to be assisted onto the gurney that would take him there: “two ambulance attendants came in with a gurney, and they were going to roll him onto the gurney and roll him out, he refused. He said, I’m going to stand up, and … that guy stood up barefoot on the hospital floor and then sat on the gurney and said “now take me”.”
To the end, he refused to be a victim.
Sandy died in October 2011. Les and his family feel his absence, but also feel honored to have known this strong, stubborn man who would not give in to the horrible disease – but was very, very anxious to protect his children from it.

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