How a Devastating Diagnosis Taught me How to Really Live

How a Devastating Diagnosis Taught me to Really Live

Do you remember where you were and what you were doing 9 years ago? I do. I don’t have an exceptional memory, and it wasn’t a special occasion, but my life changed with one phone call.

I was sitting in my office cubicle trying to focus on work, but I was anxious about my recent spinal tap. I hadn’t heard anything from my doctor, which I thought was probably good news. After my MRIs a few weeks earlier, I got a phone call insisting I come in right away, which I knew meant bad news.

I finally stopped pushing paper around my desk and called the neurologist’s office to see what was going on.

Let’s back up for a minute

In the Spring of 2006, I was training for the MS 150, a cycling event to raise funds for MS research. The owner of the company I worked for has Multiple Sclerosis and inspired me to raise money for the National Multiple Sclerosis Society. He was in a wheelchair and I was going to ride for him.

Things were crazy-busy at work 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 the paragraphs above. 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.

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.

After the pause.

Them: Hi Courtney, Sorry about that. You do have MS.

Me: What? (thinking to myself: did you just diagnosis me with MS over the phone?) What should I do now?

Them: Come pick up some marketing brochures and pick a drug.

Me: OK (Thinking … this is not ok. Nothing will ever be ok again.)

I left the cubicle 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, 9 years later, I am practically symptom free. I haven’t had a relapse in more than 7 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 spent time with, who is on my medical team, and how I view my life and the world.

How a Devastating Diagnosis Taught me How to Really Live

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 vs. 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.

When you share your story, you open your heart and let people in.

Being diagnosed with MS was a defining moment in my life that I will never forget, but MS does not define me. You’d never know I had it if I didn’t tell you. So why tell the story? In 2010 I wrote this post for my friend Leo at Zen Habits. Later that week, I got an email from a woman who was diagnosed with MS the same day she read my story. She said my words gave her hope and made her a little less scared.

Thousands of people read my story, but I wrote it for her. We met in her hometown a few months later and I knew she was why I shared my story.

I often skim over my diagnosis here, because this blog isn’t really about MS. Then again, it’s not about living with less either. I write about decluttering, paying off debt, and living more simply, but those are just little chapters in a bigger book about love, connection, light, and living. Really living.

In Daring Greatly, Brené Brown says, “We either own our stories (even the messy ones), or we stand outside of them—denying our vulnerabilities and imperfections, orphaning the parts of us that don’t fit in with who/what we think we’re supposed to be, and hustling for other people’s approval of our worthiness.”

Let’s use our stories (even the messy ones) to help each other. Think about the defining moments (big and small) in your life, and share them. The stories you share will inspire others, give them hope, and help people connect with you in ways you can’t imagine.