The Beginning of the Story


At 9 years old, standing on the ice in the middle of the partly frozen river, I realized this was a big mistake. As my more
sensible older brother watched from the bank, our friend Jeff had led me out near the middle of the wide Kanawha, an industrial strength river on which coal barges steamed through the West Virginia valley.

It had never frozen before to my knowledge.

A man stopped his car in a traffic lane of the narrow interstate
overpass a bit upstream. He got out, waved his arms and shouted “YOU DAMN KIDS, GET OFF THAT RIVER!!”

Hearing him yell and seeing him risking his own life, it all
suddenly dawned on me. We were within 20 yards of the middle stream of unfrozen river where the dark brown water rushed by. Looking at the water, the overpass, and the distance to the bank, I realized that we had made an awful mistake. Before that moment, it frankly had not entered my 9 year old mind.

Living a block from the bank of the Kanawha, our parents had made very clear that we were never to go down the steep bank, let alone approach the fast water. A handful of kids drowned every year, and my usually cheery mother made a point of showing me the newspapers describing their deaths:”Rucky Stubbs, 7 years old, drowned in Kanawha”

Now here I was, the young follower of 14 year old Jeff, looking
back at the bank toward my brother. Those were the longest 50 steps of my life — filled with the sound of the ice crunching under my feet on each step. But since I am here telling this, you can assume correctly that the ice never cracked and broke, sending us down and swiftly under and gone. We survived and soon had to confess to relieved but furious parents after a neighbor turned us in.

Terrible judgment saved by plain dumb luck stands as one of many
ways that I have been a very fortunate man, a man who in 17 years  . . .  having surviving the river, would find himself diagnosed with multiple sclerosis.

All of us are born with and develop unique gifts in this fragile human life. Chronic illness, in my case multiple sclerosis,
refracts our gifts, distorting and sending our light into unexpected
directions. In my case, mercifully, multiple sclerosis did not impact
my life with a force that snuffed out the development of gifts or the
enjoyment of life. It came at the crest of a first wave of
long-sought success.

The story of its effect on my life will, post by post, play out here in this blog.

This is one story of one person with multiple sclerosis, a very
fortunate person. All or nearly all of the people who live with
multiple sclerosis, and the myriad angels who care for them. will tell you that, if you have met one person with multiple sclerosis, you have met precisely one person with multiple sclerosis. Just as nature has decided to make snowflakes different, the stories of people with MS are every one of them very different.

My goal is to tell a good story without judgment. This story will attempt to avoid judgment, express or implied (I am a lawyer), of anyone else suffering from multiple sclerosis, including
the author and of any of the characters in the story. I understand
that this is an impossible goal, but it is the goal nonetheless.

There are many things that this blog is not. It is not a medical resource. It will not catch you up on the latest treatments.
I have in my twenty years since diagnosis sought whatever the latest treatment was that had been approved by the fallible authority of the FDA. It is not a self-help blog. There is no list of tips or checklists. It is not a scientific or factual resource. It will not
contain statistics, and it will not pretend end even the smallest step
into the wealth of knowledge that the angels who research, tend, love, and care for the people with multiple sclerosis have accumulated over countless years of grappling with this chronic illness. These angels know best that it is “our” MS, and I would never presume to describe the learning they have carved out of their struggles.

This is my story, told in the hope that maybe just one person who has been recently diagnosed or has lost hope might read it.
Maybe they will take just one more walk, go to one more work out, move one step away from despair, or strive for one more day to make sense of this strange, often terrible, and occasionally fortunate presence
in their life.