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Jeff's Story


Some things are no less true because they are trite. One of them is that nothing changes your whole life like getting a chronic illness. When the doctor diagnosed me with Multiple Sclerosis, I went through all the normal stages that can run through the mind of someone who has had their future laid out for them like raw meat on a table. I worried, I researched, I cried and I tried to laugh. I had the fleeting fantasy that perhaps, instead of MS, I had actually gone insane. Some therapy, a stay in a place where mentally ill people go but they still serve meals 3 times a day and have games to play and all would be well. At least, with that, the doctors could declare me both healthy and happy in a few years. MS lasts forever, it can be treated but not cured. No matter what I did, what medicines I took, what therapies I tried I would never be rid of the MonSter. Once I came to accept the fact that I had this illness, I thought I could just go on with a few changes to my normal life. Unfortunately, I realized that my life could no longer be what I had considered normal. It has changed irrevocably. I had to not only find but also accept a "New Normal".

I had, the previous fall, narrowly missed becoming one of the casualties of the World Trade Center attack. I had been in a building that overlooked the plaza at one World Trade. I watched and listened from start to just about the end of everything that happened. I watched people leaping out of windows, their ties standing on end, as they plummeted to their deaths. I saw the first tower topple and heard the second tower take its slide to infinity. We were the only floor of our building that had not been evacuated. In the chaos of the day, they had missed us. We ran down the flights of stairs to find the entrance to our building blocked by debris. We moved through the building to the connecting deli. Everything was filled with gray and black smoke. My throat felt like they had been sanding it until it was smooth but had not finished. Eventually, after what may have been 10 minutes but could have been 10 years, someone, the NYPD or the FBI, kicked the door down. They escorted us out. We saw the destruction from the first building toppling over and were worried about the second coming down before we made it out. We were hustling and running to where City buses were waiting to take us to safety. To me, what I saw next, in many ways summed up how the whole event seems in memory. It was a man's dress shoe covered in gray dust. The whole area along Broadway and Dey Street was covered in the same gray dust and pieces of debris. As I looked closer at the shoe, how I still can see it in my mind's eye, I realized that there was a foot still wedged inside. The blood must have been covered by the dust and the wound itself perhaps instantly cauterized. It was vile and horrible but it was not frightening. It was almost sanitized as if it had been someone else or something I once saw in a movie. In many ways, September 11th still seems that way to me. Vile and horrible but strangely sanitized. By the time I was trekking back to Brooklyn over the Manhattan bridge it was almost as if it had happened to a different person. Some bad dreams, a touch of therapy, a bit of alcohol and I felt worlds away from the nightmare of that day. Nightmare being the key word a terrible thing but faded in the first light of the morning. I was alive, my family was safe, and I still had a job, and generally was A-OK. I maintained an aura of invincibility, of safety, of normalcy.

Taking, humbly said, a well-earned anniversary trip that January to London and Paris an unusual thing happened when I got off the plane. My left leg was not working. I felt that was a touch unusual, as my left leg had always been up to walking, running and the occasional dance step. Suffice to say, after many tests and many doctors and even more stress, I was diagnosed with Multiple Sclerosis.

Being a Gen-X'er I went to my first and best research tool, the Internet. I looked up Multiple Sclerosis, treatments, and what to expect. I learned that you could expect anything. That the illness could not really be chartered, could not be anticipated, no guesswork could be done and no estimations made. I learned that MS was different in every person who had it. Some had leg problems and some people had upper body issues. Some people got optic neuritis and some just had tingly feet. I discovered I was going to have to give myself an injection at least once a week if not more often. I cried when I read that I had just as much of a chance of ending up in a wheelchair as I did of dancing at my grandson's wedding. Assuming I could have a grandson as Erectile Dysfunction is quite common in people with Multiple Sclerosis. I read about spasticity, loss of bowel and bladder control, and some people who even lose the ability to swallow. Mostly I cried at what I perceived as the loss of possibilities, the loss of opportunities, the loss of control. I was afraid in a way that made my fear on 9/11 look like a drop of water added to the ocean. I could not push this away in a box and try not to think about it. This was going to affect me every day for as long as I drew breath.

I certainly should have recognized it that morning on 9/11. I maybe should have seen it in college after breaking up with my first real serious girlfriend or even in high school after not making the National Merit Scholarship. My other triumphs, from meeting my "Bshert", my fantastic wife, graduating from Columbia University or simply being happy with my job may have helped to outweigh the main fact of life. What is "normal" is just a notion, an illusion, an idea we sell ourselves to bring harmony and contentment. To bring order into a world that can get quite chaotic with out even trying. Getting Multiple Sclerosis brought that fact up in a way that I had barely confronted before.

I am almost a year into my diagnosis of Multiple Sclerosis and over a year past September 11. I am still acquiring my "New Normal". My wife helps give me a BetaSeron injection every other day. I have a handicapped parking permit. I have begun to exercise and am thinking about finally quitting smoking. Some mornings, I cannot put on my own shoes and some mornings, all I want to do is get up and dance my way to work. Some evenings I come home from my job, cook dinner, and do the laundry. Other nights, I sit down and cannot move until it is time to get into bed. My feet, arms, and legs so tired they can barely move. Sometimes I just want to curl up in the corner and cry. Other days no one would know that I ever had any problems, let alone a chronic illness. I cannot say I do it all the time and I cannot say I do not have times where I feel like Sisyphus on one of his bad days but I try just to take each day for what it is and each moment for the potential of joy that it holds. My "New Normal" is shaping into being. It is simply accepting the fact that what we think of as normal grows and changes. That it is what we make of life not what it makes of us. That in a world of infinite possibilities anything can happen and anything is feasible. What we do with what happens is what becomes our way of being. That is the only normal that exists.

Jeff Newman, 2003