Tikun

by Dean Kramer
October, 2004

"Tikun" is a Hebrew word meaning "healing." This is a holy time of year for those of the Jewish faith with Yom Kippur, the Day of Atonement, crowning the new year’s observances.

My father was Jewish, though completely secular in his Jewishness. Before he died on September 1st we had seen each other only once in eleven years, and that was two months before his death. The reasons for our estrangement were many and mostly unimportant now. But one of them was his discomfort with my having MS.

A few days after my diagnosis in 1984 I traveled from Cripple Creek to Philadelphia to give him the news. I was frightened, but I was also in shock enough to be fairly numb and deadpan in my delivery. His first words were, "Well, I hope you have health insurance because I don’t want to be saddled with your medical bills." Now, as heartless as those words seem, the truth is that my father was way more frightened than I of any sort of medical problem, any sort of disability or disfigurement. He was a vital and handsome man, very invested in his appearance and in mine. He spoke out of fear.

Never-the-less, I was hurt by his words. Though quick to reassure him that my insurance needs were provided-for, I allowed those words to widen a gulf that had already begun to distance us. In several years, once my MS had progressed enough to affect my gait and to require the use of mobility accessories, we lost touch completely.

Early in 2003 several things brought me to a desire to connect with him again. First, my book, Life On Cripple Creek was published. He was central to one of the book's essays and I felt it was only fair to give him a heads-up. Second, my benefactor and surrogate parent, Sue, died unexpectedly. This was the first major death in my life and it woke me to the knowledge that we never know how long people will be around. Additionally, at that time I found myself employed as a graphic designer. My father had been a very successful graphic designer before his retirement. I was the only one of his 4 children to follow him in that field. I knew he’d be delighted to learn of it. Whatever hurt I’d experienced I had managed to survive. I was also finding ways to survive MS. I felt strong and contented with my life.

I sent him a letter with a copy of the book. He responded with a phone call and, from early 2003 until April of 2004 we spoke by telephone or wrote via email. In retirement he’d become a celebrated independent film-maker. He was still handsome and vital, despite some of the frailties common to people in their eighties. We planned to get together, he and his wife, I and Twink, for a meal to see who we might be in one another's lives after the many years of silence. Before that meeting took place my father had a stroke.

He survived the stroke and began rehabilitation at a top-notch facility. I received daily reports from his wife. They were upbeat. Everyone believed that, with effort on his part, he could regain most of what he'd lost. I wanted to visit, but he didn't want visitors at first. While recovering from the stroke he required emergency gall-bladder surgery. His recovery slowed, but his doctors were still encouraging. He'd have to work hard to make up ground lost during the surgery, but significant recovery was still possible. Finally, after 6 weeks of rehab, he agreed to a visit.

Twink and I drove to Philadelphia, to the rehab hospital. We unloaded my scooter and made our way into the building. We took the elevator to his floor and followed the numbered signs to his room, Twink on foot, I on my scooter. His wife, Debby, aware of our arrival time, was on the lookout for us. As we approached his door she motioned us to wait a moment and disappeared into the room. I heard her speaking to him cheerfully, announcing our arrival. Then she called to us, "Come-on in!"

Twink stood back to allow me to go first. I rolled into the doorway and stopped. Inside the room Debby turned my father, in his wheelchair, to face me. And, after eleven years, there we were.

It was a good visit, a healing visit for both him and me. I understood, as no one else among his friends and family, what numb, uncooperative limbs felt like. He was obviously tired, but he wanted to know about my scooter and about other options for independence. We rolled side by side down the halls. We embraced, clumsily, leaning from our chariots. We planned to spend more time together. I looked forward to sharing my experience in disability with him. He had given me life and the innate talent with which I earned my daily bread. Now, at last, I had something to offer in return.

Debby says that he was brightened by the visit, in terms of his own disability. But my father was also a very different person than I. To Debby, as the days passed, he confided that he didn’t know how I "did it." He was not a man who could have tolerated living in a wheelchair, using a Hoyer lift, needing to be bathed, dressed, and helped with every aspect of physical hygiene. In any case, he was unable to fight his way back from all the physical insults. His family believes that, to a large extent, the psychological insult was an even greater burden. As an adult, he'd had no practice fighting for survival. His days had been made smooth and comfortable both materially and, through Debby's devotion, emotionally. He had been healthy and suddenly, profoundly, was not. He was also 82 years old. The attitudinal changes he would have had to make in accepting disability and recreating his life were more than he could bear. He was tired and depressed. Hanging on long enough to give Debby time to let go, he slipped slowly away over the weeks and died of complications of pneumonia and cardiac arrest.

My MS is worse enough these days that walking has become dangerous. Two weeks ago I broke a rib in a fall. I’m spending more time in a wheelchair or on a scooter than I have before. I'm in the middle of a learning curve adapting to mobility equipment inside, outside, 24/7, and so is Twink. When I go on stage in the auditorium to speak at my father's memorial service, I'll be using an appropriately funereal, purple and black Quickie GP manual wheelchair rather than the Bozo-the-Clown red Rascal mini-scooter he last saw me using.

I'm blessed to be able and willing to learn, to be young enough to adjust, to have the optimism to make the most of whatever time there is, to have shared Tikun with my father, to be here still.