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Fight rare neuro-immune disorders. Together.
I grew up in New Jersey and had a “perfect life” filled with an amazing family, friends, health, etc. I decided to go to The College of Charleston, South Carolina to play on the Division I Women’s Tennis team, a goal I had been working towards my whole life. I quickly found that my college years were anything but “normal,” filled with lots of heartbreak, sorrow, pain, and challenges.
My dad passed away suddenly my freshman year of college. Within a year, my grandmother (my dad’s mom) passed away. After that year, I thought it couldn’t get any worse. Things were bound to turn around, right?
I was diagnosed with TM my junior year of college in December 2006, while I was home for winter break. I woke up in the middle of the night with my legs feeling like pins and needles. Thinking I had slept funny, I went back to sleep and woke up an hour and a half later with my legs completely numb and my arms from the elbows down feeling like my legs did earlier. I woke my mom up and told her what was happening. We decided to wait until the morning to go to the doctor, who immediately sent me to the hospital. After a couple of days in the hospital, countless tests, scans, and a spinal tap that leaked (ouch!), my neurologist ruled out other diseases like MS and meningitis and diagnosed me with TM.
It’s hard to describe my physical TM symptoms. My legs were numb and it was extremely uncomfortable with lots of pressure and I felt swollen even though there was no visible change. To give you an idea, the morning I woke up without feeling in my legs, I tried to put on shoes to go to the doctor. That didn’t happen, I was too uncomfortable when I bent over to put on sneakers, so I opted for flip-flops instead. I didn’t know it, but as I hobbled down the stairs to get into the car I lost a flip-flop along the way. It wasn’t until my mom got in the car carrying my missing flip-flop did I realize how serious this was.
I remember my doctor telling me that I was lucky because we caught it early and started aggressive treatment. I was told that whatever feeling I would regain a year from then, would be what I would have for the rest of my life. There was no guarantee that I would have full feeling or mobility ever again, only time would tell. That’s all I needed to hear to think “game on.” I’m no stranger to coming back from an injury having played sports my whole life. So, I asked my doctor what kind of physical therapy would be involved and what it would take to get back on the court to resume my “normal” life. That’s when I got the heart breaking news that would cause a lot of anger towards health insurance companies. Insurance would only cover enough physical therapy sessions to be able to walk about a mile and up a flight of stairs. WHAT?!?!?!?!? I was a 20-year-old Division I college athlete – unacceptable. So, I did what every stubborn, determined, hard working person would do. I decided that I was going to show everyone that I would get back out on the tennis court again and compete. I was determined to be “normal” just like all of my other friends and teammates.
I did two hours of physical therapy every day for five months, which was no walk in the park and was sometimes full of tears, frustration, and anger. Nothing was natural anymore. I had to learn how to walk, run, jump, shuffle, side step, etc. I really had to trust myself knowing that my brain would tell my legs and feet where to be, I just hoped they were actually there. After months of therapy I was finally able to get back on the tennis court and couldn’t contain my excitement. This was a day I had been hoping for since I got sick. Of course, I expected to be able to play like I used to before I got sick, knowing that I might be a little rusty. However, I quickly learned that while I might be back on the court, I would never be able to move like I was once able to. It was a heartbreaking blow.
When I was getting ready to apply to college, my dad had pushed me to go to a school where I could play on the tennis team. At the time, I thought it was so that I would have a group of immediate friends and some structure in my day. Looking back now, being on the tennis team saved my life (physically). Without my amazing coaches, teammates, and trainer there is no way I would have had a recovery that was as successful as mine was. College was a challenging four years, through all the curves thrown my way, I managed to graduate on time without taking summer classes. Since graduation, I have continued to push my body in ways that I thought wouldn’t be possible. My family is my rock and I wouldn’t be here today without the unconditional love and support of my amazing mom and brothers. They continue to push me to be the best that I can be, not letting the disease get the best of me. I’m most proud of climbing to the top of a section of the Great Wall of China. Hundreds of other people attempted to climb to the top that day but couldn’t make it – I had to fight the tears in my eyes when I made it to the top and it was just me and my brothers up there. Even though, I still don’t have full feeling in my legs, I know that I’m “lucky” compared to others diagnosed with TM. I like to call myself a Transverse Myelitis survivor, because I didn’t let the disease conquer me.
At the time I was diagnosed, my doctor explained that a “virus attacked my spinal column.” I still don’t know what that virus is, but guessed it was the mono that I had had a year and a half earlier. However, in 2015, I was diagnosed with “undiagnosed and untreated” Lyme Disease, which means I have had the Lyme bacteria dormant in my body for an unknown period of time. Now, we believe it was Lyme that caused the TM. Since Lyme weakens the immune system and can allow diseases like TM, MS, and others to attack the body, it now seems like the logical culprit.
My hope is that one day a cure will be found for this rare disease that won’t leave our immune systems susceptible to other diseases. I hope the insurance companies will provide affordable solutions to those fighting chronic illnesses. There is no excuse why necessary medicines such as penicillin injections aren’t covered under insurance, yet pills like Viagra are. Finally, I hope that I can be an inspiration to others. You can get back to your “normal” too, it just might be slightly different. I must admit that my new “normal” is pretty great. I have an amazing husband, the cutest dog in the world, a job that I love, and I’m able to get out of bed and conquer every day without people knowing all the challenges I have gone through. At the end of the day, this was really my original goal, to be “normal” again.
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