Hi. My name is Bernardo, and I’ve been living with MS since 2010.
I was a third-year law student when the double vision started. At first, I thought it was my contacts, or just a transient sensation. Soon enough, though, I realized I needed medical attention, and that started the diagnostic battery of MRIs, blood work, eye tests, and spinal tap. Nine months later, I was diagnosed with Relapsing Remitting Multiple Sclerosis.
Over the years, I’ve been lucky to have avoided any major relapses besides the double vision that got the ball rolling in 2009, and I’m grateful for that reprieve. But the more subtle symptoms of MS sometimes seep into my everyday life, when my mind, or my body, or my emotions don’t respond the way I want or expect. It’s on those occasions that I’m reminded I can’t control how MS affects me. I’ve learned, however, that I can control how I respond to this disease.
Maybe the most important tool for me has been being a vocal advocate for myself. From the very beginning, I took an active role in my care, starting with finding a doctor who specialized in MS. Although my diagnosing neurologist was very competent and experienced, he wasn’t an MS specialist. I learned that because I asked him. Luckily, I was able to find an excellent MS team five miles from my work in Hartford. When I moved to Boston and needed a new MS care team, my Hartford neurologist linked me up with Dr. Katz and Dr. Lathi at The Elliot Lewis Center. And I’m still here! They’re awesome, and I’m not sure I would have found them without asking questions and being proactive.
Over the years, I’ve continued to stay involved in my care and advocate for myself. Every time I saw my MS team, I asked all the questions. There were so many unknowns for me early on– and of course there still are even now. But back then, I really didn’t know anything, so I had loads of questions. I asked about my symptoms, I asked about alternative treatments and research studies, I asked about my family and whether my son had a greater chance of having MS. Even if the question was trivial, I still asked it, because I knew I would leave the office with some peace of mind.
Another key aspect of my recovery has been relying on the medical treatments and expertise available to me. I’ve been on disease modifying drugs since the beginning, and I have been vigilant about staying on schedule and getting my meds when I’m supposed to. It’s certainly easier now that I have semiannual infusions, but for the first two years I was injecting myself once a week, and I never missed a shot. And if there’s something else my medical team thinks may be helpful—whether it’s switching meds, joining a support group, getting the flu or covid vaccine, or exercising more—I follow their advice. As the son and brother of well-trained physicians, I know that I can trust the science that informs the experts.
Finally, I’ve also learned to take it easy on myself. I know it’s not possible for me to sleep eight hours, run five miles, meditate, work, do yoga, and eat all the avocados every day. Instead, I try to evaluate what might benefit me and what won’t, find those things that can help me live with MS, and chose how I implement those changes in a way that fits in into my life. Sometimes that means I try something once, and never do it again, or maybe I do it twice, and then maybe a third time, and then just see what happens.
For me, that’s how I respond to this disease—I focus on the things I can control. I accept that I have this disease. But that doesn’t mean I’m helpless. I decide if I’m going to learn a new hobby, or exercise more. I decide if I’m going to fundraise, or take other actions to manage my MS. I decide if I’m going to try harder, meet new people, or make a new friend. I decide that. Not this disease.
Today, I focus on the present and the things I can control, and I leave tomorrow’s uncertainty for tomorrow. Sometimes easier said than done, but I’ve learned to appreciate that today is all I can count on, so one day at a time, I try to live a meaningful life.