Stories to Inspire: Finding Happiness after an MS Diagnosis
By Courtney Carver
Courtney Carver making notes while enjoying the outdoors. The author found happiness by removing the overwhelming stress and clutter from her life. Following her diagnosis, Courtney simplified her life and wrote a book about the process, titled Soulful Simplicity. This book is featured in our “Spread the Word” column.
In the spring of 2006, I was training for a cycling event in Salt Lake City, Utah, to raise funds for MS research. The owner of the company I worked for had multiple sclerosis and inspired me to raise money for this cause. He was in a wheelchair and I was going to ride for him.
Things were crazy-busy at work that spring and I wasn’t feeling well. After coming home from a trip to Europe, what I thought was a little jet lag turned into a lot of vertigo. I had experienced vertigo before and I figured it was just some type of ear infection.
My doctor thought the same thing. As the weeks progressed, I couldn’t walk a straight line, let alone ride a bike. Along with vertigo came fatigue. One side of my face and my hands were tingling. None of these symptoms were brand new, but I had never had them all at once or this severe. Two months later, I still felt like I was stumbling out of a bar whenever I stood up. I had missed the bike ride and was diagnosed with MS.
My diagnosis wasn’t as tidy as I just noted. Instead of a few sentences, it was days and weeks of fatigue, vertigo, and uncertainty. It was MRIs with gadolinium-contrast agents delivered via IV that made me want to throw up, eye tests, blood work, ultrasounds of my heart to rule out mini strokes, balance and neuro exams. And the cherry on top … a blood patch to stop the debilitating headache caused by the leaking fluid in my spinal cord after a lumbar puncture.
By the time I called for my test results, I was vulnerable, scared, sick and tired. Here is how the conversation went:
Me: Hi, I’m calling for test results from my lumbar puncture.
Them: Yes, we have them right here. You don’t have MS.
Me: Thank you so much!
Them: I can’t believe you didn’t know. We got your results back last week.
Me: That’s not possible. My lumbar puncture was this week.
Them: (big, painful pause) We’ll call you back.
Next call:
Them: Hi Courtney, Sorry about that. You do have MS.
Me: What? (Thinking to myself: did you just diagnose me with MS over the phone?) What should I do now?
Them: Come pick up some brochures and choose a drug.
Me: OK (Thinking … I’m supposed to pick my own drug? This is not okay. Nothing will ever be okay again.)
I left the cubicle at my office and cried all the way home. I thought my life was over. I was afraid that MS would take over and ruin my health, my family, my work, and everything I cared about.
And then, inch by inch, I changed my life. I changed what I ate, what I owned, what I owed, where I worked, and how I loved. I changed all of it. Today, 12 years later, I am practically symptom free. I haven’t had a relapse in more than 10 years and recent MRIs show no new lesions or MS progression. I moved from powerless victim to the hero of my own story. I realized I have choices. I didn’t choose MS, but I do choose what foods I put in my body, what treatments I take, who I spend time with, who is on my medical team, and how I view my life and the world.
I didn’t want MS, and I don’t wish it on anyone else, but it has been a blessing in my life. Dealing with the uncertainty of MS helped me to become more comfortable with uncertainty in other situations. I am more concerned with what’s happening today versus what’s happening next week, or next year. Working through the fear of an unpredictable diagnosis reminded me that fear is only what I think, and not what is. That gave me confidence to make big changes, and take risks that I would have walked away from before. Ignoring the people who told me not to share my diagnosis with co-workers, my daughter, and other people, taught me that showing up and being honest about who I am and what I’m going through isn’t a sign of weakness. Honesty and vulnerability may repel some people, but it attracts the right people.
The unexpected diagnosis helped me to worry less as I realized that the things we worry about and stress over every day are typically not the things that actually happen. My busy life may not have been the cause of MS, but I had overlooked the damage that chronic busyness was doing to my health and relationships for years. MS gave me permission to listen to my body, and to create a life with time and space for what really matters to me.