Ten and Forty



This picture dates back to days when I was flaring before I was diagnosed with MS. I was lucky to spend the week with my mom, father-in-law and brother-in-law rafting down the Grand Canyon.

I realized a couple of weeks ago that it had been ten years ago that I had horrible headaches. For months I had headaches bad enough to wake me up in the middle of the night. The irony is the headaches would only go away with sleep. I used to ask my head, as if it were separate from me, “Why do you wake me up to tell me to sleep!” I might have yelled except J was sleeping, and the prospect of yelling with those headaches seemed abhorrent. I went to my primary care doctor, an ear nose throat doctor, an ophthalmologist, and got an MRI. I took steroids and antibiotics. I thought I had been tested nine ways to Sunday. During all this time, the headaches came in waves with good and bad days. It was like this for almost a year before I was diagnosed with “probable MS.”

However even during this time, I was incredibly lucky for I had almost an entire good week perfectly timed to allow me to go on a trip with my mom, my father-in-law, and my brother-law to go white water rafting down the Colorado River through the Grand Canyon. During this week, I rarely needed head ache meds, though this was the beginning of my realization those meds do nothing for me. It was only on the last two days that I began to have problems again. At the time, this was a very welcome break from the stress of feeling as if my eyes could shoot laser beams.

As I hit the ten year mark, it seems a natural time to look back and ask what MS has done to me.  How has it changed me?  Even with Tysabri, I still progress.  It is just a slow progress, almost imperceptible if one’s time frame is carefully chosen.  I saw a doctor on a research board comment about how much more seriously MS would be taken if all the damage happened at once.  Spread out over months and years, patients are assumed to adapt to our invisible ailments.  So, how do I see myself changed?

The biggest changes aren’t to my physical abilities.  Yes, buttoning shirts quickly was nice.  Playing competitive sports, especially soccer, was how I used to draw confidence and get over the worst parts of life.  Multitasking despite distractions sure made life easier. However, these things are small compared to the biggest change I see in myself.

The biggest change I see is far more insidious, how I measure success day to day.  For most of my life, I have tried to progress, to do better today than yesterday.  As time has gone by, I find myself ever more trying to stave off degradation rather than improve.  I run three or four times a week, and I keep track of my times and abilities to run intervals during my run.  More and more often I find myself changing goals from running a marathon to running another half marathon.  I find myself satisfied equaling glories past.

In moments of honest reflection, I have to admit much of what I see on these fronts could be as much a factor of rapidly approaching forty years old rather than ten years with Multiple Sclerosis. I simply fear MS ages me faster and faster year by year. Still, my bet is many people approaching 40 suddenly find themselves noticing all the ways we are no longer 21. C’est la vie.

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