My grandma died when I was 6 of breast cancer. I was too young to really know the implications of the illness at the time, and my memory saved the experiences in the end that any child would probably fixate on- going to the hospital, seeing a woman who somewhat resembles my grandma in the bed, playing games in the waiting room, tricking my brother onto the hospital elevator by himself and getting in trouble for it, etc. What I didn't realize at the time was that she died not only with breast cancer, but also due to complications of the illness. She also had multiple sclerosis (MS), which was overshadowed by the more aggressive cancer, so that I didn't even know until I was much older and I heard my grandpa mention it for the first time. Even at that point, I didn't know much about MS.
Fast forward to a few years ago, when I was learning about pathophysiology in nursing school and we talked about MS, the disease in which your immune system attacks the protective covering of your nerves, leaving you with a disruption in the flow of information between your brain and your body. This at best can be mildly disabling, and at worst can be devastating. It was then I began to comprehend what life must have been like for Grandma, and was even more in awe of who she was. A very strong woman, she was not to let her chronic illness get the best of her.
I met my friend Scott during this time I was living in Atlanta during nursing school. He was one of the leaders of Operation Bootcamp (OBC), with which I participated in many an early morning workout in Piedmont Park. He soon after moved to LA to start his own franchise of the business, so when I moved to LA last year, we reconnected and I got to participate in OBC, LA-style. He told me that in 2015 he would be putting together an OBC cycling team for the MS ride and asked me if I would participate. I told him that I would, not knowing what would unfold in the months to come.
When I first moved to LA, I began having bizarre symptoms. As is common when you are a healthcare provider, I started to run through the possible causes in my mind. I went to my primary care provider because I knew that I would likely need specialty care for the work up, and she confirmed this. I did not have a good insurance plan at the time, so when I went to the specialist and the consult visit alone was pushing my spending, I realized that I would have to wait to do the elective testing to investigate further. But, by this time, we had ruled out the simple, common causes. When I moved back to SF, I was incredibly fortunate to have a good friend of mine who is also a physician see me and rule out yet a few more causes, which left only a handful more in the differential, and then would require a neurology consult. She sent me to a physician in her group who specializes in MS, because this was now at the top of the list. Given my family history, my ethnicity, and my age, I am in the sweet spot for when this illness often develops. She ordered a battery of lab tests and MRIs. As my lab test results trickled in a few at a time, I was able to view them online and see that the least-likely neurological causes had been ruled out.
Then I had to wait for insurance approval for the MRIs. And wait. And wait. It took a month to get the approval and then even longer to actually have them done because I was not able to easily take off work. During that time of waiting, I knew the possible diagnosis and even though I tried not to dwell on it, at times it was hard not to think about what it would mean for me if I did indeed have MS. I thought about my athletic pursuits, the side effects of the medications that are used to treat it, my career, and all the other many ways that MS affects those who have it and their loved ones as well. The day I had the MRIs, I was in the scanner for 2 hours. It was a long time to lie there, knowing that the test would soon tell me what I had been wondering about for months. I thought about the many patients I've worked with who themselves have been in similar situations, and now I understand the waiting game. The threat of illness. The facing of a diagnosis that changes the course of your life, sometimes forever. I vowed to carry that experience with me each time that I sit with my patients and discuss their health.
My MRIs came back clear. It was a surreal experience, reading the radiology report. I reached out to the few people I'd shared with up to that point, letting them know that I did not have MS. And while I was able to celebrate after several months of uncertainty and at times fear, there are many more who do not have the same experience, whose MRIs do not come back clear, and they are given the diagnosis of MS.
Friday I drove to work with my gear packed for the ride. I was planning on leaving right after work, driving to LA that night ready to start the ride in Irvine with my team early the next morning. Well, as I left work later than I'd like to at 8pm, I thought briefly of not going, because it was a crazy thought to drive into the early hours of the morning only to ride the majority of the next day on my bike, sleep-deprived. But I had committed to doing it, so I went. And I'm so glad I did. Not only was it a fun time with my teammates, especially Scott, but I was able to experience firsthand how the funds that I helped to raise are being used. I spent time riding alongside a woman who lives with MS and listened to her story, and how she loves to ride bikes.
This weekend was a culmination of many things for me. I was celebrating the life of my grandma, who was able to lead a very impactful and influential life while living with MS. I was celebrating the fact that I do not have MS, and the bizarre symptoms have unexplainably resolved. And I was celebrating the many who rode alongside me who do have MS, to whose bravery and determination I can't do justice by trying to describe here their accomplishment in traveling from Irvine to San Diego, let alone living day to day with this illness. It was an honor to participate.
PS-
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