MS is a Thief... But I'm Not A Victim

It was my favorite time of the year, fall, which in the US meant it was football season. The air was crisp, the sky was filled with sunshine. A classic fall day in mid-November 2018. My husband and I decided to celebrate our one year wedding anniversary along with my in-laws at a Penn State football game. While at the game, I noticed the scoreboard was difficult to read. Naturally, I thought I was getting older and maybe my astigmatism was getting worse so it may be time to go get glasses. After the game, we went to visit my sister who lived nearby and that is when I started to feel like something was wrong. I thought I may be coming down with an illness because of how suddenly it came on. On the car ride home, I suffered from the worst headache I have ever experienced in my life—it felt as though an ice pick was being driven through my eye to the back of my head. I fell asleep in the car and when we got home I went straight to bed. The next morning I decided to go to the gym. While I was there, I noticed the lights seemed funny and my phone screen seemed to be going in and out of focus. Again, I chalked it up to being old (I was 31 at the time, so not that old). I got home and started schoolwork for the Masters degree I was working on and again the screen went blurry. This time lasting longer than before. I decided to call my aunt, who is a Nurse Practitioner and also a migraine sufferer to ask if what I was experiencing was a migraine. She told me to immediately go to the emergency room and I heeded her warning.

When I got there, I was asked a million questions, went through MRIs and blood-draws and had to explain to the staff of nurses and doctors multiple times that I could not see. Which proved very difficult for them to comprehend that light was still getting into my eyes but things were unfocused. Over the course of a few hours in the ER, it got to the point where I could not make out my husband’s face. When the results came back from my testing, an attending physician came in with two residents to deliver the news. Now, as someone who has been pretty accident prone and had a number of ER visits for various broken bones and other issues, I knew very well that seeing an attending physician walk into the room likely meant they found something and it wasn’t good. A sense of panic rushed over me at that point because my maternal grandfather died of brain cancer at a fairly young age; fortunately, the attending started his delivery with “I have good news and bad news; good news is it is not brain cancer (to which I audibly exhaled since I was holding my breath), but bad news is we are not sure what it is.” He continued..“There are lesions on your MRI and a spot that could be a possible brain bleed.” In case you are wondering, the possible brain bleed ended up being a cavernoma that is currently stable.

Anyway, I was admitted to the hospital for about a week and tested some more as well as underwent a course of high-dose steroids all to be told, “You probably have Multiple Sclerosis, but follow-up with a specialist.” So, a week later, I was fortunate enough to get into a specialist and they indeed confirmed my MS diagnosis in December 2018. When going over treatment options, starting a family was high on my list of things I wanted to do in the next few years. So I chose to get onto a Disease-Modifying Therapy that I would self-inject 3x times weekly that was considered safe for pregnancy. In late March 2019, I had a second bout of optic neuritis in the opposite eye. This time, the steroids stopped the progression but it took much longer for my eyes to recover. I had to spend time out of work because most of what I did as a scientist working in small molecule analytical drug development and commercialization was on the computer and involving reading and writing. I won’t go into detail about my return to work and the awful stigma that I faced having this chronic illness in which it was unknown when, where, or how the next relapse would occur. What I will say is that my MS has led me to get more involved as an advocate in the workplace. I have since been involved with our internal Employee Resource Group for persons with disability in order to ensure inclusion and equity within the workplace as well as proper accommodations particularly as a representative for those who deal with mostly invisible illness.

I said how I wanted to start a family as one of my main goals, but it was complicated from the start. Not just because of my MS but because my husband Chris, is a 2 time leukemia survivor. His treatments have led to him being sterile. Fortunately, at 19 years of age, his doctors had the foresight to bank sperm. Which we later used for IVF. It took 2 rounds of retrieval, 3 transfers, and one miscarriage to have our amazing son, Koa John in March of 2021. For me, the hormone treatments for IVF threw my body into disarray and when I finally did become pregnant, it was a welcome relief from my typical MS symptoms. The system relief did not last long though because after giving birth and then again after breastfeeding ended, my body completely rebelled. This time I would get new symptoms, like excruciating spasticity and ataxia. The loss of my fine motor skills finally made me realize I could no longer safely handle chemicals in the lab, so I switched positions into a different department.

Despite my newly realized disability, I found that remaining active with a healthy lifestyle has really slowed down the impact the disease has had on my acts of daily living. I found CrossFit over a decade ago and fell in love with the fact that it was functional fitness that you could be competitive in. Right before my diagnosis in 2018 and shortly after the summer of 2019 I was in the best physical shape of my adult life. After a brutal weekend of competition on a team of 3, I thought I had to hang up my CrossFit shoes because the combination of the heat, volume and intensity of the workouts caused me to flair up again. I actually had to be helped off the competition floor after the last workout and I collapsed under my own weight because my left side stopped functioning. After that, I focused on getting healthy, strength training, less intense workouts and eventually lockdowns happened so I worked out in my garage with equipment lent to me by the gym. Later on, I would find out that CrossFit introduced adaptive divisions where I once again was able to compete in the former neuromuscular division. I went on to qualify for the world championships, known as the “CrossFit Games” in 2022 only to be injured during the 3rd event causing me to withdraw from competition. I rehabbed my injury and went on to win a major competition in January 2023 in Miami known as “Wodapalooza” and will be competing in “WheelWOD Games” later this year. It has been incredible to use my fitness platform to advocate and bring awareness to Multiple Sclerosis. I have even been able to use my fitness to raise money for MS4MS through a burpee challenge I did ($1 for 1 burpee = 555 burpees) on World MS Day 2023 and with matching funds raised over $2,000.

At this point, I hope you have picked up on my central theme here. MS is a thief…a thief of joy, life, experiences, health, abilities, and the list goes on. But what MS has no control over is how I choose to view the things it has stolen from me and my reactions to it. There is power in acceptance and advocating. Now, many people may hate my overly positive attitude towards my MS and the many other challenging situations life has brought me, but I don’t mind. My positivity, my belief in not possessing a victims mentality, and my willingness to adapt and overcome are what gets me through my day. That and a decent amount of caffeine in the morning. I got involved with MS4MS because I want to advocate and bring awareness for myself, my sister who was recently diagnosed, and every other person who suffers with this chronic illness. There is power in words and sharing stories, so I willingly share mine in hopes others feel safe enough to stand up and share theirs.