Five Year Anniversary
I recently hit a big milestone, five years since my official MS diagnosis. I have been reflecting a lot about the ups and downs of the past years, and the lessons I have learned along the way. At the time of my diagnosis I was 25, working as a neurosurgical intensive care nurse, and a year into graduate school. In my spare time I was also a competitive athlete, and musician. Back then there weren’t many problems that couldn’t be put into perspective by working up a sweat at the gym, or sitting down at my piano and playing a few of my favorite songs. Then, one day while I was running, my right foot fell asleep, but I brushed it aside, hoping that I had merely been overworking myself, and just needed some rest. After all, I had been been having strange symptoms for quite some time including numbness in the bottoms of my feet, hypersensitive skin that felt like it had been sunburned, and double vision, but they always resolved on their own after about a week. I told myself that it was nothing serious, and continued on at the breakneck pace that I was so accustom to. However, over the next couple of weeks I got much worse.
Admitted to the hospital where I worked
I was later admitted to the same hospital that I worked in, and spent a week having MRI scans, infusions, spinal taps, and painful tests- many of which were administered by my friends and colleagues. When the results came back it was official, I had Multiple Sclerosis. I went from being the type of person that has a detailed five year plan, to not even knowing if I would be able to walk in five years. MS threatened to take a wrecking ball to the path that I had laid out for myself so carefully.
You can't just go back to the ways things were
In the subsequent months I tried to continue living my life the way I had been up until my diagnosis. I coped with my MS, and tried to not let it change my life too much. But once you hear the words “you have MS”, “high lesion burden”, and “poor prognosis”, you can’t just go back to the way things once were. I was scared of a lot of things back then. But what was somewhat unexpected was how much I feared sitting down at my piano again. I used to be great, but now my right hand was weak and numb and it had completely forgotten notes that used to come so easily. I kept pushing myself to be the musician I once was, play like I used to play, be who I was before.
Maybe I was just trying to regain control over a completely out of control situation, but I was beating myself up every time I couldn’t hit a cord perfectly. I knew I had to make a change so I stopped obsessing over what my right hand could or could not do. I sat down at my piano, and with determination I took everything that I had been pushing down and just let it pour out onto the keys. Then something remarkable happened, life started following suit. When I stopped trying to force things to be the same, like they were before MS, I became better. Instead of striving for perfection, I focused on finding purpose in the challenges I was facing. And most importantly, instead of waiting for someone else to go and create a brighter future for me, I decided to take charge.
I started working as a nurse in the same MS center where I was a patient, and soon I realized that I could use my unique perspective as a patient and a provider to have an impact on the MS community. I became involved in government advocacy through the MS society, I write for awesome sites like MultipleSclerosis.net, finished my Master’s degree, and most recently I helped build an MS Comprehensive Care Center in Virginia, which I am now the Co-Director of. Prior to having MS, neurology was my specialty. However, living with MS everyday has taught me way more than any textbook ever could, and I now work tirelessly to create a brighter future for myself and for my patients.
Purpose and hope
Purpose and hope have propelled me through the lowest points over the past five years. I truly believe that MS has made me a better healthcare provider, a better person, and given my life more purpose than ever before. Despite living with a chronic condition, I have learned that it is very possible to thrive and live an incredibly fulfilling life. Today as I write this I am both nervous and excited to see what the next five years brings, and I look forward to bringing you all along for the journey.
How many specialists did you see before finding "The One"?