Am I True?

I was going to be 40 in nine days. The neurologist examined me and talked for a long time, but I only heard, "Barbara, you have multiple sclerosis." I treated him gently, I told him it was all right, that I knew something had to be wrong. "I'm just so relieved I'm not neurotic," I said, "I don't need to feel like such a loser anymore."

Yes, a loser was what I had felt like through 20 years of numbed extremities, double vision, hundreds of urinary tract infections, and a lack of coordination noticeable by my coworkers on a daily basis. I had nausea, weeks of pain shooting down my face whenever I touched my hair, and an ever-present sense of fatigue and depression. Add to that a bevy of doctors suggesting everything from possible MS, small strokes from taking birth control pills, and stress. It felt good to have the weight of guilt and failure removed.

That relief lasted as far as the elevator. When the door slid closed behind me, I began to cry. What followed were months full of sobbing with ugly gagging noises on every intake of breath.

Now I know others who have MS. They speak from years of living with increasing disability and hardship – their courage and grace is remarkable. They are farmers, mothers, grocery clerks, university graduates. They sing in choirs, they teach children. They have an air of calmness about them that I envy.

I am at the beginning of the MS journey. I rage at my body and at the doctors who had been so paternalistic. How could they have allowed me to blame myself? They knew I had MS, there was no other explanation for the symptoms, and yet they chose not to tell me, the person who owned the body. It took a long time for me to forgive them.

*   *   *   *   *

The traveling numbness of MS occasionally reaches its tentacles up my leg and into my crotch. My thoughts are stopped by the sudden sensation, but then my mind moves on. My symptoms increase at night; sometimes it feels like a caress, sometimes a pinch. I lie awake between the sheets, hoping it will stop. Sometimes I get up, read, pace, and amuse myself in front of the computer, waiting out the sensation.

The pain that MS causes surprises me. It takes my breath away, and I wonder why this particular symptom has happened to me. But what would I trade the pain for? Loss of eyesight? A tremor? A wheelchair? Loss of the ability to speak? Thanks, but I'll take the pain.

I now walk using a cane. Sometimes I fall, great sprawling falls. "No, don't help me," I say to the assortment of people who are trying to haul me up by my painful shoulders. I thank them, but I need to find my own equilibrium.

I'm still angry with my body. I've been told that anger is a healthy part of grieving, and I will eventually reach acceptance. Like hell I will! I have an agreement with MS: I won't deny MS, but it won't cage me.

*   *   *   *   *

I bless the freedom MS has given me. My true friends understand when I just cannot do something we had planned, cannot go out two days in a row, or when I tell them, "I don't do evenings."

Oddly enough, occasionally, I thank MS. It has given me the ability to understand aging, disability, and death at an earlier age than normally I would have. It has forced me to look at life and ask myself some penetrating questions. Am I my job? Am I money? How do I want people to remember me, smiling or crying? Am I a good friend? Do I love? Am I true?

The answers to these questions will define my future. MS will be no more than a companion on the journey.

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