The Day We First Met and the Dance Began

There was nothing romantic about it.  MS flirted with me on a long bike ride in Seattle in the summer of 1993. After the ride, I felt a strange sensation in my groin and upper thighs that lasted a few hours. A few months later, I fell hard on a slippery sidewalk in Boston’s Back Bay. My legs and arms felt a weird numbness and tingling, a little like when your leg is on its way back from having fallen asleep. I bounced from doctor to doctor at the university health services and finally ended up sitting with a deadpan neurologist. He’d sent me for a MRI.

“Your MRI shows several active lesions on your brain. What you have is clearly multiple sclerosis.”

“What the hell is that?” screamed my mind.  I knew in some calmer corner of my brain that it was one of those scary diseases with an acronym beginning with an “M” like muscular dystrophy or maximum meningitis or mega measles or multiple sclerosis or etc. etc.  But those were just a bunch of letters and images of Jerry Lewis and his kids and . . . “What the hell?”

“The last law student I diagnosed with M.S. chose to lead a less stressful life.  I think he is very happy and selling real estate on the North Shore (of Massachusetts).”

Now the doctor had my full attention.  Looking back, it seems like that moment on the frozen river at 9 years old. My flailing fear gave way to ambition, just like it had to self preservation and the slow, ice crunching under my feet walk when I was 9.  I sat there looking at this man — some doctor, reading slides and telling me that it was over, that I should hang it up.

Not two years before, I had received my first set of law school grades and quietly enjoyed the fact that many of the people who had talked the most in class now fell silent. My grades encouraged more attempts at thoughtful comments, not less.

I had walked into a classroom to argue in the first year moot court competition to find Archibald Cox sitting as one of the judges. Archibald Cox!  http://www.washingtonpost.com/wp-srv/onpolitics/watergate/Archibald.html

One of the great heroes of the greatest generation, the paragon of virtue, the standard for all that was good and ethical and excellent in government, the man fired by Nixon.  I argued well, and he said so.  Archibald Cox, a living legend.

I had not come to Harvard Law School and moved within striking distance of this dream to hang it up.  Not now.

“Doctor, with all due respect, I am not going to do that (downscale and distress). I come from a long line of ministers and teachers.  I’m not going to hang it up.  I’m going to clerk for a federal judge in Hawaii and then another in Seattle and then I’m going to work for a law firm and make some money and maybe do some good along the way.  Looking back, this was one of the most important steps in my life.

“What else can you do for me doctor?” Steroid treatments.  Great.  Steroids, like some roided out, washed up athlete?  “No, not those kind of steroids.  It is medicine, called Solu Medrol.  It will help shorten and tamp down your exacerbations.  You should start tomorrow with a five day course of infusions.  I will call health services.”

The next morning found me in a hospital room taking off the watch with the face the color of the water around St. Thomas where I had bought it on my honeymoon not three weeks earlier.  The kind nurses with the wicked Baahsten accents stuck me with an IV needle FIVE TIMES AND COULD NOT FIND A VEIN.  No IV. I lost it, storming out and demanding that they supply a surgeon the next morning.  He was a young resident wearing the exact same watch I had on.  He got the IV going on the first try, which I have now come to learn is exactly the opposite of how things usually go in the nurse/doctor world.

And life went on.  I went to the Advanced Constitutional Law class taught by the legendary Lawrence Tribe, http://hls.harvard.edu/faculty/directory/10899/Tribe tried to say smart things, and felt more or less ok, but never physically quite the same.  My Relapsing Remitting MS more or less remitted, but honestly I can’t say my fingers and legs have ever felt quite mine again.

My eyes and ears sure worked though.  I could see.  I could hear Professor Tribe’s reassuring voice in his office as he set up an appointment with a specialist at Mass General.  I stared at him in disbelief as he had his assistant TAKE A MESSAGE from Senator Lloyd Bentsen (democratic VP nominee and slayer in debate of Dan Quayle). http://en.wikipedia.org/wiki/Lloyd_Bentsen  Tribe would not interrupt our conversation for Lloyd Bentsen.

I graduated in the top 10% of my class from Harvard Law School. To this day, part of me still can’t really believe that I even got in. I passed the bar in Seattle that summer with only one more steroid treatment.  I clerked in Hawaii.  I clerked in Seattle.  And, fortunately, I did not hear from the MS much at all leading up to another pivotal moment.

In that crossroads moment fate firmly took the hand of this fortunate man.  I had planned to practice law in Seattle and had accepted an offer for after my Seattle/9th Circuit clerkship from one of the best firms in town.  One day the hiring partner called and said that he wanted me to know that they would no longer be honoring the years of clerkships with salary credit.  In the big markets like New York and DC, they gave both salary credit and big bonuses for clerkships.

The same message in various versions came rushing to me.  “Gather ye roses while ye may.”  “Carpe Diem.”  “If you are going to sell your soul, at least get a good price.”  “Money talks and bullshit walks.”  But the most memorable message came from a plainspoken Assistant U.S. Attorney who had befriended me in my first year summer in Seattle and listened at lunches patiently three years later as I dithered over what to do.  I had an offer from the formidable law firm of Williams & Connolly in Washington, DC.  Going back and forth, my struggle boiled down to the question:  “Should I go for it or should I play it safe?”  At length he smiled and said:  “You know, I think in life you only get one chance to play for the Yankees.  If you don’t take it, you’ll always wonder.”

In that moment I learned for the first time what I would see over and over in more than a decade of law practice – a well placed one liner beats a 50 page brief. I also knew that I was going to trust that fortune favors the bold.

And fortune smiled.  I still work in a limited role for this wonderful institution, and I packed what feels like a 40 year career into 14 years of practice that ended in 2010.  I left it all on the field, working 3000 hour years followed by long breaks, careening from periods of remission through attacks treated by Solu Medrol, and later by the new interferon drugs (in turns Avonex, then Betaseron, then both Betaseron and Copaxone – two shots a night, yay) and finally Tysabri, a monthly infusion. A long history of hard work earned the support of the firm and of good disability insurance which in the end saved me from the financial ruin that usually befalls the loss of the ability to do that job for which I had trained and dreamed of doing – being a lawyer.

I will never know whether my health would have been better in a less stressful job.  I do know that to my dying day I will be grateful that I took my shot. It has landed me in a place where I still have a professional identity, some options, and am working to create a satisfying life now living with Secondary Progressive MS.

As it turned out, the first day I met MS was not the last day of anything. It is a dance where most days I still feel like I am leading, with new steps and challenge for every stage and tune.

 

 

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