Meet MS Warrior Phoebe Walker
Written by Phoebe Walker
While my personal MS journey medically started in 2001, it was not the first time I had heard of MS. In fact, when I was in elementary school, my uncle on my mother’s side was diagnosed with MS. By the time I was in high school, my mother was diagnosed with MS. They both volunteered with the Indianapolis MS society where I spent many hours learning copious details about MS. Back in those years, the 80’s – early 90’s MS was a very scary thing to me. I thought for sure I’d die if I was ever diagnosed with it.
Fast forward to the late 1990’s, I started feeling neurologic issues with odd vision disturbances and feeling like my arms and legs were heavy. In the back of my mind, there was fear that it might be MS but I always pushed it out as if it was nothing. When my husband Chip was stationed in Nebraska with the military, we lived in base housing. While he was away for a short deployment, I went out to shovel snow and suddenly my arms stopped working and my legs got rigid with sharp pain. This brought up conversation that he would leave active duty and change out for reserve work that year. That was the same year that I also graduated with my AS degree and was accepted to the University of North Carolina at Chapel Hill pre-med program. Our transition took place that year in June 2001.
As we were finally getting settled with Chip coming off active-duty August 2001 (right before the 9-11 attacks), I started to have new symptoms. These were complicated with the fear that the military was going to recall Chip for a counter offense from the terrorist attack. A case of left sided hemi-ataxia caused me to go to the E.R. A CAT scan of my brain revealed a large demyelinating plaque in my brain. My follow up appointment with a neurologist started my months long visits to labs and testing machines. At the end of it all, the doctor said he felt confident that I had MS but could not diagnose me with only one lesion.
This made me very angry. Angry for the testing, angry that my childhood was laced with all forms of abuse from my mother and stepfather and now she got me again through this autoimmune gene, angry that I had to make the decision to not go to medical school because that level of stress could mean the difference of MS fully developing or me being able to stave it off. There was nothing about the situation that did not anger me. In the end, after turning down my acceptance to the university of North Carolina at Chapel Hill, I decided I was going to fight MS and go on like I don’t have it. However, out of precaution, we decided we would move to Kentucky where temperatures were not to hot or too cold.
There I worked on my undergraduate degree in biology with a minor in environmental science. After 3 years of living like I did not have MS, one afternoon (in 2004) while I was working on my science research, my vision was like an old TV with the horizontal bands that rotated from the bottom of the screen to the top. It was time for another MRI. This time it showed I had a total of 4 lesions. The doctors then decided I had MS and started treatment. It was the everyday Copaxone injection. After six weeks of excruciating injection site reactions, I decided that I could not possibly have MS because if I did, I would not have welts from every injection I had taken over the prior six weeks. I told myself, if I had MS, my body would absorb the medication and not leave it in my skin and cause that much pain.
My husband and I then discussed moving back to Florida where our married life together began and both kids were born. Fortunately, my college was on board to let me complete the term and walk commencement even though I still needed two more classes to attain my degree. They did this because of accomplishments with my undergraduate research. Consequently, five years later, my undergraduate science research was published in a peer reviewed journal as an undergraduate sole female author. It is very rare to find that combination for published writers in peer reviewed journals.
We went back to Florida in summer 2005 and subsequently moved into a new construction neighborhood in 2006. Our house was the only one built. One morning, when I was all alone in the house, I was getting out of the shower when I collapsed to the floor. No one close to help me. I could not physically push myself up. It took me an hour to craw, scoot, roll, to where my phone was on the other side of the floor to call Chip and let him know something was very wrong. His commanding officer allowed him to go on emergency leave. It took him two and a half hours to get home. It took me almost that full amount of time to put my clothes on and start to move towards the front of the house.
2006 was literally the darkest year of my life to date. My physical abilities declined to absolute absence of sight in both eyes. It was like that for more than three weeks. When my sight started to become restored it was literally one sporadic dot at a time. I had no depth perception and could not see color. One of the interesting symptoms was when I looked at light bulbs they completely disappeared. While I was without sight, I was also not capable of doing any activities of daily living for myself. I did not drive for over eight months that year. Most of my eyesight returned though I have lots of dead optic nerve fibers and I had to retrain myself to walk among other things. The majority of my healing was well established before doctors ever saw me to start me on disease modifying therapy. Because I was doing so well on my own and because Chip was still deployed (though they did not send him overseas, he still had to finish out his orders from the other side of the state), so the doctors did not have me go to PT. Though I was instructed to continue what I was doing for myself.
While this was a difficult year (2006-2007), it taught me a lot about having faith in my ability to adapt and thrive. By 2008, I started putting together presentations for Breast Cancer Awareness and MS and started writing my memoir – sharing perseverance and unbreakable faith. I learned how to walk again and completed my first 5k in one hour 20 minutes. The organizers moved away from the finish line and started giving out awards because they didn’t know I was still on the track. The following year, I completed the same race in 45 minutes. The year after that, I completed my first 8K. We started completing one Disney 5K race a year until Covid.
In 2011, I went on to get my graduate degree, which I finally earned in 2013. My memoir was completed in 2014 and I opened my life coaching business for pain management in 2015. At the risk of losing my momentum in life, I picked up ballroom dancing in 2016 and now this year am going to start competing.
Through all the trials I’ve walked through with MS, I’m blessed to have been able to learn many new skills and hobbies like making crochet animals and little outfits for them. I learned I really enjoy sudoku. And my painting talent has risen to a level I never could have expected.
I guess what I am saying is that while I always looked at MS as a curse, I also see it as one of the best things that has happened to me. Of course, I would be happy to not have another relapse or have to deal with the daily problems that come with it, however, I’m blessed to be able to manage it well, for now. For as long as I can move, good luck catching me 😊 May MS help you to find your best parts too… making it easier to hone in and refine those parts!