“I am invisible, understand, simply because people refuse to see me.”
-Ralph Ellison, “Invisible Man”
I’m 5 foot 8. Half of my head is shaved. I wear bold makeup and jewelry. I’m hard to miss. And yet somehow, I have managed to (quite literally) stumble upon the secret to attaining one of the superpowers I’d mentioned in another article I'd written late last year: invisibility.
You’re so dramatic. You try too hard. How do you stay so upbeat all the time? Why are you always so negative? You’re crazy.
These are all phrases that I have come to accept as things people will continue to say to me for the rest of my life. They all contradict one another, right? It takes you on a bit of a roller coaster when you start to think about how these could all be said to the same person, and usually within a short period of time.
I was diagnosed with relapsing-remitting multiple sclerosis in February 1996. I was a young 36-year-old at the best time in my career as an athletic trainer. Despite my diagnosis, I kept moving forward and looked to medicine to manage my disease.
At the time, there were only 3 disease-modifying therapies (DMTs) on the market. I tried Avonex and in 2000 added Novantrone, a neoplastic immunosuppressant anti-cancer medication. Unfortunately, neither were all that helpful. But it was then I decided while perhaps I couldn’t be in the lab creating and researching new DMTs, I could lend my body, my broken nervous system and all, to help researchers decode the mystery of MS...
My stomach is churning. My mind racing. I’m in shock. I’m confused.
A doctor has just announced that I have multiple sclerosis. A disease that I know nothing about. Yet apparently it will be part of my life forever – there is no cure...
As fall begins, I can’t help but feel somewhat victorious. I survived – or to be more specific, my MS survived another grueling summer.
When I was younger and living on the East Coast, I had bittersweet relationships with the other three seasons...
This past June, I had the privilege of traveling to Europe with my mom and my stepdad Tim, who was diagnosed with multiple sclerosis in 2000. Tim has common symptoms of MS, including fatigue, sensitivity to temperature and numbness. But the symptoms Tim struggles with the most are cognitive. His difficulty with short term memory, word finding and delayed processing makes everyday activities challenging. Now, take all those problems and go to an entirely new city in a foreign country, and you can imagine how difficult it can be.
When it comes to MS, a lot of time goes into discussing the physical symptoms, although 50% of people living with MS experience cognitive symptoms...
There’s this dress in the back of my closet.
And boy, I used to rock that thing. It was perfect for any occasion. It hugged every curve, it made heads turn, and it made me feel so confident and strong...
In the final years of high school, I wasn’t sure I wanted to go to college. I was emotionally and physically exhausted. AP classes and the seemingly all too encompassing social stresses were trying, but paled in comparison to being diagnosed with multiple sclerosis at 15 years old. I was in a bad place then—stumbling through classes, and suffering from depression and anxiety. I applied to colleges as I thought I should, not expecting much back.
Once I entered college, I wasn’t sure I liked it. But I was aware of the immense privilege I had to be able to access higher education. During my sophomore year, I finally found my footing. I discovered what studies I wanted to pursue, and my grades have reflected my passion, as they seem to get better with each passing quarter...
When I made the initial appointment at Bloomfield Industries, I was told to bring the script from my doctor and cash. Oh, and a picture ID issued by the State of New York that identifies me as a registered user of medical marijuana.
That’s right. I was going to a medical marijuana dispensary...
Getting diagnosed with MS at the age of 17 posed a lot of challenges. Not only was I facing uncertainty when it came to my physical health, but I also wondered what life would be like finding someone who would accept me as I was. Someone who would be willing to take this journey on with me in sickness and in health.
If there is anything that I have learned over the last 29 years of life, it’s that there are no coincidences. Things don’t happen by chance, but rather by divine intervention. I believe there is a purpose in both the good and the bad. Instead of letting this disease take me down a dark path of discouragement and defeat, I refused to let it stop me and trusted that there must be some purpose in it all...