My 11 years with Multiple Sclerosis

In March 2003, I was diagnosed with Multiple Sclerosis. I was 28 years old. I had just graduated from Naturopathic College and had started my residency.  Within a span of a week, I lost all feeling in my left leg and my right foot.  I needed a cane to walk around.  I would make it to work, my boss would take one look at me and send me straight home. I would stop in the middle of a grocery store and crouch low to deal with the pain from muscle spasms. Then, several weeks later, I started to have double vision.

I remember waking up the day after my diagnosis. Swinging my legs over the side of the bed, burying my head in my hands and sobbing.  I was so afraid.

I remember telling my husband it was okay if he wanted to leave me.  We had been married 3 short years and just moved into our first home.  I told him he didn’t have to take the whole “in sickness and in health” seriously.  I understood if he didn’t want to stick around and watch me potentially lose my mobility, my sight and other pieces of myself to a disease that was ravaging my brain. He didn’t leave. He cried instead.

I remember the panic that set in when the doctors told me my prognosis was bad.  That my MRI results were worse than they had anticipated and it was best if I started aggressive treatment as soon as possible.

But I couldn’t.  I wanted children.  I couldn’t take the drugs and still try to conceive.  Besides, I was a naturopath remember?  There had to be another way.

The doctors told me to “Hurry up and go have your kids so we can start treatment”.  Well, as luck would have it, that didn’t happen either.  It took me 3 years to finally get pregnant with the help of in vitro fertilization.  Remarkably, I was in remission for those three years.  I never relapsed.

I have never relapsed again. I have been close. This month I was scarily close. I lost feeling in my left leg again. Started tripping up the stairs again and had to be extra cautious walking and exercising, but I have recovered for the most part.

To be clear, I never fully recovered from the first episode but I did remarkably well.  If you look at me, you would never be able to tell that on any given day the amount of feeling I have in my left leg varies like the weather. At night, in the comfort of my home, I stop compensating.  My husband will see me limp.  My boys will ask why I am walking funny.  If I haven’t slept, or if I have been overly stressed, my eyes let me know.  The tell-tale double vision returns whenever I look left. Not for long, just long enough to let me know it’s time to slow down.

But 11 years after diagnosis, I am not afraid of losing my mobility.  I am not afraid of losing my sight.  I am not afraid of this disease.

In fact, most times, I consider it a blessing in disguise.

The diagnosis 11 years ago, which incidentally has not been confirmed since I never had a second episode that lasted long enough, changed my life for the better.  I don’t take my mobility for granted.  I don’t take my sight for granted.  I don’t take my life for granted.

The disease has taught me to listen to the whispers of my body.  Sleep when I have been pushing too hard.  Take a breath when the stress is too much.  Eat well. Exercise regularly. Choose friends wisely. Avoid drama.

This is good advice generally. We should all do this. But my type A personality never knew when to quit before the illness and truth be told, I still have trouble stepping on the brakes, but MS has made me try harder to strive for balance.  Those close to me may argue that I am still failing miserably at trying to balance my life, but they didn’t know me before I got diagnosed.  This is an improvement.

When I see patients in the clinic that have been told their test results are positive, that their prognosis is poor or that the odds are not in their favor, I want to scream at them to ignore all of it. We are more than test results, more than statistics, more than data points to plot on a graph.  We are individuals with challenges.  We don’t have to let those challenges define our lives.

MS reinforced to me that people are more than the sum of their parts.  There is a whole other part of us that science and medicine can’t figure out. For all intents and purposes, I should be in a wheelchair.   I should be heavily medicated.  I should be sicker than I am.

But I’m not.  I am fine.  I am healthy. I am happy but most importantly, I am more than an MRI.

 

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7 thoughts on “My 11 years with Multiple Sclerosis

  1. Thank you so much for sharing Rahima. I can relate to your post in more ways than one. I completely agree with you when you said “we are more than an MRI”. What a blessing this experience has been and continues to be. Sending love and healing.

    • Lesley, I hope when the storm passes, a calm will set in. I know you are already feeling the calm after the storm, but the more time goes by, the easier things get. I look forward to following your progress:)

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