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.
The following are two links, one from the Milwaukee Journal Sentinel and one from Jeff's law firm, I wanted to include the links rather than copy, because they include photographs -
Jeff Kaufman Tribute
Milwaukee Journal Sentinel
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