I woke up on November 2, 2009 with dizziness. I remember the exact date because it was two days before my daughter Clara’s second birthday. I thought I was getting a cold, and I did my best to ignore it. I’m a family doctor, and I struggled to keep up my usual schedule seeing patients and teaching students who rotated through my clinic near downtown Austin. I tried to take care of my kids, Ella, and Clara, preparing meals and snacks, reading bedtime stories, driving them to school. They were two and four – not exactly independent.
The dizziness—an unpleasant buzz combined with something akin to motion sickness—was relentless. Anti-inflammatories, allergy medicines, lying down, moving around . . . nothing made it better or worse. I kept expecting it to turn into a respiratory infection or the flu, but instead I started getting other weird symptoms like double vision and taste changes.
By the end of the week, I was freaking out. I couldn’t stop thinking about a brain tumor. Could I have a deadly glioblastoma? Metastases from cancer somewhere else? It was painful to look at my kids. Would they be motherless soon? Even as a doctor, I couldn’t come up with any other diagnosis to explain my symptoms.
When I got an MRI that was highly suspicious for multiple sclerosis, I was shocked. MS hadn’t been on my radar. A lifelong disease of the brain and spinal cord, it’s a leading cause of neurologic disability in young adults. It occurs when the immune system attacks and damages myelin, the protective covering of nerve cells that acts as a sort of insulation. As a result, the brain can’t communicate as well with the rest of the body. Common symptoms include fatigue, impaired mobility and balance, visual and sensory changes, cognitive dysfunction, mood disturbances, and bowel and bladder problems.
It wasn’t a brain tumor, but MS was a terrifying, and infuriating, diagnosis. I was 36 years old, and I couldn’t understand why I’d gotten sick. I was a health nut, a vegetarian. I exercised every day. I shopped at Whole Foods. I had no family history of MS or other autoimmune diseases.
I remembered my first encounter with MS as a medical student in the mid-1990s. One evening, my team admitted a man to the hospital with progressive MS and an intestinal obstruction. He was in excruciating pain and severely debilitated – unable to walk, barely able to move. He must have required round-the-clock nursing care even before he came to the hospital.
I realized that I could end up like that patient. And after I got a spinal tap, which confirmed my diagnosis, that’s exactly what I thought was going to happen. Two days after my spinal tap, when I thought I was supposed to be recovering, I got so sick I couldn’t get out of bed. I still had bad dizziness, but I also started vomiting. I was too weak and exhausted to read The Wizard of Oz with Ella – or even to come to the table when my husband made dinner. But even worse was the depression that sapped my energy and controlled my thoughts, filtering out anything remotely hopeful. Unlike many of my patients, I had a supportive family and health insurance and the means to get good care. Yet I felt like my future had just been stolen.
An MS diagnosis can be devastating physically, financially, and emotionally. It often strikes people who are young and healthy. It doesn’t discriminate, affecting nearly 1 million people in the U.S. Its course is unpredictable and random. Overcoming my symptoms and learning to live with the uncertainty that MS created have been among the biggest challenges of my life.
Nearly 14 years post-diagnosis, I’m healthy, with no discernable limitations. I work, travel, run, drive, and spend time with my family. I have good doctors and good medicine. I still resent MS, but I like to think I’ve emerged wiser, stronger, and more grateful because of my illness.
Here are some crucial lessons learned that may help others with (or without) a health challenge:
1) Build and nurture a support circle. Connection with others adds meaning to our lives and improves health outcomes. My friends, family, and coworkers sustained me during the early days and weeks after my diagnosis and continue to add joy and love to my life. I hope I’ve been able to reciprocate when they’ve needed help as well.
2) Always have a goal. Setting and working toward a worthwhile goal gives us a reason to get up in the morning and offers a sense of achievement. I like having a fitness goal, which always feels like a triumph over MS. Each spring, I bike the Texas MS150 from Austin (or Houston) to College Station, to raise awareness and funds for MS. I also have work and personal goals, like publishing a memoir, Up the Down Escalator.
3) Prioritize self-care. One chronic disease is more than enough, so I do everything I can to ward off other medical conditions. Exercise, a plant-predominant diet, adequate sleep, mindfulness meditation, and journaling are all part of my stay-healthy strategy. I also keep up with immunizations and recommended preventive care.
I never thought, when I was lying in bed after that spinal tap, that I would be able to return to my clinic and patients and to lead a life that wasn’t dominated by MS. Disappointment and despair overwhelmed me, as I started thinking of the plans I needed to cancel, the activities I’d never be able to pursue: running the 10-mile loop at Lady Bird Lake, camping with the kids and teaching them to swim, biking together as a family.
But my early pessimism was unwarranted. Thanks to advances in MS treatment and a big dose of luck, I have bounced back after three relapses. I’ve now been stable with no new symptoms or MRI changes for almost seven years.
And even though I might revise my bucket list, I’ve realized that MS, or nearly any chronic condition, isn’t an excuse to stay home and cancel plans. Instead, MS is my launchpad to achieve big dreams: getting scuba-certified with my daughters and husband, hiking the Inca Trail in Peru, finishing a half Ironman triathlon, publishing my book. I’ve learned to focus on my abilities and strengths and to push my limits, embracing a new mantra: Do more of what brings joy, adventure, meaning, and connection.
And do it now.
