What Goes Up

by Dean Kramer
May, 2004

Most people I’ve known say broke down when something, well, breaks down. I grew up hearing such sentences as, "My car broke down." But in the community where Cripple Creek sits people say went up on me as in "My car went up on me." Sometimes you'll hear an attenuated form such as, "The washing machine went up." Well, a couple of months ago my neurologic system went up on me.

Most of us who have any MS symptoms at all notice that they fluctuate in severity. Though the rule of thumb tells us to contact a doctor if old symptoms worsen or new symptoms manifest for longer than 48 hours, I seldom follow that suggestion. My own experience has been that an old symptom may worsen for several days and then subside. In addition, after almost 20 years with MS, there has been a slow worsening that isn’t tied to a specific symptom, nor has it been very profound.

I may have my injectable therapy to thank for that and for the fact that I have had very few attacks. By now I am so used to living with the ever-changing severity of my constellation of symptoms I’m not even sure when I’m having an attack. Consequently, a few weeks ago becoming aware that my symptoms had gradually worsened. I thought I was far enough advanced toward the secondary/progressive stage that I’d simply slipped several rungs down the ladder of relative health.

My neurologist sees me yearly unless I ask to be seen more often. I saw him shortly after my symptoms had worsened and we both agreed that I was much worse-exponentially worse (his words) than I had been in the past from year to year. He ordered another MRI to make sure it was "only" MS. Fortunately, it was "only" MS. It was so clearly MS that, had I been a first time patient, my neurologist said, he would have had to call me with the bad news that I have MS. While I was waiting for the results of the MRI the intensity of the symptoms began to diminish. By the time he told me I had MS, I was almost back to what passes for normal with me.

It wasn’t until then that I realized I’d had an attack. It had come on so quietly over such a long period, that I was unable to identify it as such. Since I didn’t point to my situation as an attack and my neurologist had never seen me so symptomatic in all his years of treating me, we both assumed I had reached the stage of secondary/progressive MS. And, possibly, I have. Attacks and gradual worsening are not incompatible states, nor is there a definitive division between relapsing/remitting MS and secondary/progressive MS.

MS is such a day-at-a-time disease! I really have to accept myself as I am each day and go from there. If I’d known I was having an attack I probably would have done just as I did anyway-gotten more rest, used more help from others, made sure to eat well, and continued with my various therapeutic agents. In the end, it doesn’t matter what stage I’m in or what my symptoms are. It matters how I feel, how I adjust to those feelings, and how I choose to live with my situation, whatever it is. I keep wondering if my generally positive outlook is so much hot air. When it gets "really bad," will I be as optimistic? Has my character truly been tested by this disease?

Of course it has. Each of us has been tested every day of our lives with this disease from the hour we’re told we have it through every symptomatic moment that follows. We’ve been tested and so have the people who care for us. I don’t know how I’ll behave if ever I can’t walk at all or if ever I can’t see. I know I feel rotten when faced with not being able to do something formerly easily done, but I don’t seem to stay with that crummy feeling for very long. Maybe that’s because there continue to be things I love about being alive, and things I look forward to. Today, for instance, the sun is shining and the temperature is warm. I can still haul my butt onto a tractor seat and do some mowing here at Cripple Creek. So that’s what I’ll do, just for today (unless the tractor goes up on me).