I've been craving apples lately - when I was little I have fond memories of being on a blanket in the side yard of my cousins house, playing with Barbies and picking the green apples from their tree - with the white plastic salt shaker never far from reach. I miss apples. But more than missing apples I miss the ease of going out to dinner and not worrying about what ends up on my plate. It seems just as I have gotten this fatigue improving, these food allergies have come crashing down, and once again limited my freedoms - somedays it's like wearing a house arrest monitor without the sore ankle. And just as my pity party was gaining steam, bring out the party hats and noise blowers - a memory flashed to the forefront of my brain and it snapped me out of it. The truth is I can still go out to eat, I just often need to eat before. I can still move freely, though often stiffly - and there is hope i will continue to improve...
The memory that flashed was my junior year of high school. I was doing the rounds figuring out what colleges to apply to, so my parents and I were attending a Boston College informational meeting at Turner Hall in downtown Milwaukee. It was a cocktailesque meet and greet with Boston College alums. While there, we ran into a partner from my uncle's law firm, (and I don't know why I remember) but I am pretty sure he had a red sweater on - a subtle shout out to his UW-Wisconsin alma mater where he still held a track record. He was attending with his younger brother (I believe Oliver) and I recall being a bit jealous because it seemed awfully cool to have a hip older brother showing you the ropes rather than your parents! More likely it made an impression because that's just how Jeff Kaufman was - he was a person that without much fuss could make a lasting impression. The type of person that recognizes the importance of eye contact and can make you nervous because you realize someone is actually listening to what you are saying. That was over 20 years ago and though the specific details of memory may be blurred this first impression was forever embedded with a lasting imprint on my mind - nothing special about the event, or even the memory, but something was special about the person - little did my adolescent brain know how monumental special he was.
Shortly after that initial meeting, Jeff was diagnosed with ALS - Lou Gehrig's Disease. I faintly remember the whispers of something being terribly wrong with my Uncle's partner and dear friend - the initial doctor appointments ruling out various reasons why Jeff had difficulty walking up the court house steps - the unexplained falling - slowly these whispers gained volume as the diagnosis was cemented and the daunting new realty the Kaufman Family would soon have to face - the defining line of before and after.
I only saw Jeff, his wife Jan and their family a few times over the next 20 years, all at fundraising events for ALS. I remember the first one we attended while Jeff was still only showing minor effects of this terminal illness. A fundraiser at Miller Park before a Brewer's Game. There were tents and food, a jovial atmosphere yet I can still feel the intimidation I carried, staying close to my cousins, not wanting to lock eyes with any of those attending that were prisoners of ALS. Those individuals trapped in bodies that had been ravaged by this illness, knowing their mind was perfectly intact - it scared me - I didn't know how to act. It terrified me that this illness existed in real life - no longer something I may read about - the torment of this illness was right in front of me, and I couldn't reconcile seeing Jeff from a far and knowing this was his most certain fate. How, how does one go on?
The last time I saw Jeff was a number of years ago at the yearly ALS Evening of Hope Gala - I'm sure I said hello, thinking back I should have told him what an impression he had made on a 15 year old girl many years ago - that dashing dark haired red sweater wearing uncle - but I probably just said hello, and made small talk about what a great event it was; my lips moving while my brain was having a separate conversation chastising myself of how lame this conversation was - but that was the cruel reality of ALS - unless you know someone well - a quick two way conversation is not possible. So, the benign one way pleasantries of a not so pleasant reality was what sufficed. And I walked away feeling empty - knowing I had done my best, but well aware of the reality of a forced normalcy that Jeff had to endure, being helpless to verbally respond.
Jeff, his wife Jan, his family and close friends are heroes of optimism - heroes of support and perseverance - and I have been so blessed to be sprinkled throughout my lifetime with these amazing examples of strength and love- I always meant to write a note to Jeff and Jan - but never quite knew what to say - just as I have heard others mention to me - and how sorry I am I didn't - its not in what you say - its in taking the time and effort to say it.
Jeff waged a historic battle against ALS - he had that "je ne sais quoi" presence about him before and after - and that is what I saw and felt all those years ago at Turner Hall - when you are in the presence of someone exceptional - it doesn't matter if they are doing something exceptional at the moment - its that sixth sense of what they are capable of - Jeff was monumentally capable in spite of ALS.
As I went to sleep, my pity party quickly disolved with me thinking - who the hell cares if I can't eat apples - I can go to bed with the hope and reality that tomorrow can be better. Something currently only a dream for those diagnosed with Lou Gehrig's Disease.
Life for anyone is a balancing act between recognizing your blessings and honoring your misfortunes. Between giving respect to your personal experience without loosing sight of those with far greater burdens - the following copies of Jeff's article from Newsweek and links to his Obituary are re-printed with blessing from Jan Kaufman - Thank you. May your family continue to know what an amazing example of love, hope and integrity you have shown to so many - and may your endless efforts for a cure be realized in our lifetime.
And here is Jeff's Newsweek Article, which I would be remiss not to acknowledge that Jeff did not have the luxury of typing this - it was painstakingly completed with his special computer while using his eye movements - Exceptional.
From Newsweek Magazine - September 10, 1995 Digging Your Own Tunnel - Jeffrey Kaufman
Every now and then during your lifetime you read or see or hear something that so exemplifies your existence. or a part of it, that it's almost painful I recently had such an experience while watching "The Shawshank Redemption," a movie about the effects of life-term imprisonment on hope and the human spirit. It's also a good metaphor for my life with Lou Gehrig's disease (or ALS).
I have heard it said that ALS is like being a prisoner trapped in your own body. I have always thought that this is an oversimplification. By providing an in-depth look into the experiences and psyches of various prisoners, this movie took the metaphor to its proper depth for me.
The story begins with the main protagonist, Andy, being sentenced to two life terms for double murder. On his first night in prison, he is faced with the enormity of his situation. This scene evoked my memories of receiving the sentence without hope: a life with ever-increasing disability and death within three years. I remember lying alone in that hospital room with little hope or sense of future. The enormity of my nightmare hit me as I thought about my wife and kids, money, my job, and my kids some more. I never thought about myself, not because I'm unselfish, but because I'd written myself off. I prayed out loud for the first time since I was small, asking for a reprieve so that I might see and help my young kids grow up.
Like Andy, my first two years were the roughest. He was regularly beaten and forced to compromise. In my case, I was constantly fighting--with myself and sometimes with others, as the disease continued its relentless violation of my once dependable body. As I watched the film, I remembered the stitches, head bangings, cuts, bruises. torn muscles and strained ligaments that resulted from my efforts to maintain normalcy. I recalled the frustration that came with each grudging compromise: walks and the exercise bike instead of runs and swimming; leg braces: no driving; working at home: wheelchair. I remembered the depression that came when I was forced to ask for help with my progressive loss of freedom.
The movie illustrates how Andy's reaction to the loss of freedom is different from most of the lifers'. Most of the lifers simply surrender after a while. Andy finds ways to assert his status as a thinking, functioning human being despite the limits of prison life. He establishes his worth to others as an advocate, financial manager and librarian. He has long-term projects, a chess set and a tunnel that takes him 19 years to dig. He never gives in. He finds ways to grab moments of normalcy, like playing music and drinking a beer. Andy's ability to affect the lives of fellow inmates is most important to him--he can cause things to happen and make people react. Andy talks about hope making a man free. His philosophy is, "You can get busy living or get busy dying."
I thought about my reaction to imprisonment and recognized that I have both an Andy and the other type within me constantly doing battle. The daily opportunities to surrender to the isolation of physical limitation. The temptations to give up something else. And how each day brings chances to participate in life, to fight against the forces that imprison me, to dig my own tunnel. It's easier to withdraw to my cell. As time advances and the disease progresses, everything gets harder, not only for me but for everyone around me. It is more difficult to affect the lives of others in a positive way. The walls close in. I become more of a spectator in order to ease up on the people around me-and on myself. I wonder if I could return to normalcy if my tunnel's ever finished; if I'm strong enough to sustain the effort involved in coming back; if I'm too comfortable with my isolation.
I became more convinced that death would be easier, but I've found reasons to live. I know that without my children and without the hope medical research offers, it would be very easy to give in. Andy makes his own hope. I have mine given to me.
I rely on images from my life on the outside for the motivation to "get busy living." I can see and feel myself doing things like holding my children, playing with them, eating certain foods. The movie echoes these reflections. I thought of how much I resent the necessity of asking when I need a shower. food, the bathroom, to scratch an itch or change channels. I've learned to ignore many of these things to avoid asking for help.
The movie's visual images were especially evocative. There's a scene where inmates, working on a roof, rest in the warm sun, drinking beer. I recall the great feeling that came from finishing work and resting with a beer on a hot day. There is a shot of Andy, recently free, in the rain, reveling in the interaction with God's natural forces. I took a lot of pleasure from running, playing ball, standing in a rainstorm. Quite a contrast to now, when I can't brush away a drop of water from my eye or hold my head up.
Another image from the movie is of a freed man walking along a country road, farm fields on either side, the sun casting a golden haze over everything. Having spent much of my youth in rural areas, I felt as if I was seeing country roads that I'd enjoyed as a free man. My youth came flooding back. Making hay, working road construction, riding horses and motorcycles, swimming, just sitting. I thought how desperately I want to have the pleasure of walking again.
What really struck me was Andy's dream that motivated his tunnel-digging. He envisions life in a small fishing town in Mexico. Warm sun and water, cool breezes, cottages and cafes lining the beach, seafood, snorkeling, deep-sea fishing. I knew the place exactly. I had been there on my most memorable vacation, nine months before I was diagnosed. I was experiencing symptoms, but nothing that stopped me from doing anything I wanted to. It was the last time I would feel that freedom. In the six years that have passed since that vacation, its memory continues to provide a picture of the pleasures life offers to free men.
Images may fade. As does the motivation. However, life can replenish these things. Sometimes it takes something like this movie to remind me to get busy living. Hope can live for as long as we're willing to dig. Even for 19 years.