In July 2010 I was told I was dying of amyotrophic lateral sclerosis (Lou Gehrig’s disease). At the time, I was a 35-year-old mom of four. A month earlier I had thrown a huge birthday party for our youngest daughter. It was over the top and ridiculous…it was fantastic. I was a busy mom, active with painting our new home, seemingly healthy and perfectly content in life.
Shortly after my daughter’s birthday, I noticed my right leg was dragging. Within two weeks, I could barely walk and my right arm had become so weak that I could no longer open my hand. I couldn’t write, cook, drive, change diapers or carry my daughter down the stairs. I couldn’t take care of my family. I was barely functioning.
I started making the medical rounds, trying to find someone who knew what was happening to me. After several weeks I met with a neurosurgeon who nonchalantly uttered the words, “I think it is ALS.”
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I had been preparing myself to hear “MS,” multiple sclerosis, but never anticipated something much worse. I was devastated. The next 18 hours were spent in hysterics, tears, and negotiations with God. My mind was overcome with one horrible thought after another:
I am going to die in three years.
I will never see my children grow up.
I will never see my baby go to kindergarten.
Will my children even remember me? Will they know how much I love them?
The next morning I was rushed in for an MRI, and met with a new neurologist to discuss the results. He told me there were lesions on my brain that were indicative of MS. I nervously asked, “Not ALS? I don’t have ALS?”
He superiorly dismissed my previous diagnosis with a smirk and an eye roll. No, of course not. ALS presents totally different than this…how ridiculous. ALS. Please.
So, let me tell you a universal truth: MS sounds like THE BEST NEWS EVER when you previously thought you only had three years to live. I wanted to throw a party and invite everyone I had ever looked at. I knew I would very likely become disabled, but I would be able to drop my little girl off on her first day of school. I would see my children grow up. I would go to their weddings. I would spoil my grandchildren.
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During the next 18 months I tried my hardest to embrace MS and be thankful for it. “It could be worse” was my daily mantra. So what if I am so dizzy and uncoordinated that falling happens frequently? I am still walking. So what if my legs buzz and I can’t hear out of my left ear? Today I am alive and raising my family. When I would have anxiety about my future, I would repeat to myself, “This is better than the alternative. This is better than the alternative.”
As fate would have it, 18 months after my MS diagnosis I found out that once again, I did not have the disease I thought I had. While pregnant with my fifth child, my midwife encouraged me to be tested for Lyme disease. It seemed far-fetched and at the same time, too good to be true.
I didn’t want to hinge my hopes on a better case scenario. I was still trying to come to terms with my progressive, debilitating disease. I resisted getting tested for months, but finally succumbed to the quiet, persistent niggling thoughts in my head. In February 2012 I was diagnosed with Lyme disease. I am on antibiotics and my health is improving each month.
When you are told you are sick, you start to let go of dreams and plans you’ve always had. I was preparing to steadily get worse, to have each relapse rob me of more and more of my abilities. Someday I would not be able to walk. Someday I would be totally dependent on my husband. Someday this disease might kill me.
It is strange—I feel like my entire life has been presented to me on a silver platter with a brass band and fireworks. There is nothing to hold me back but myself. More than any other thing, I have learned that God loves me and that life is precious. I don’t want to waste my second chance to live it.
Have you ever been misdiagnosed with a serious disease or condition? Let us know in the comments.
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Mary Thompson is a stay-at-home mother of five children. She blogs about life, home, and her journey with Lyme disease at Quite Contrary.