Six summers ago, I was a broke artist living in her first NYC apartment. I was smoking, living on crackers and coffee, and refused to pay for an air conditioner and the bill that would come with it.
I lived on the 3rd floor, and it was hot—so, so terribly hot. Although I never liked the heat, it was different this time: I would sleep with bags of frozen peas because my body was so uncomfortable. Every movement felt like my limbs were on fire and being attacked by pins and needles, but I ignored it. I told myself it was due to not eating properly and that I wasn’t getting enough sleep. Then one day I tried to look at my toes, and I felt like I got zapped with lightning. I ignored that, too. I ignored all the weird things that happened because I kept telling myself it was a pinched nerve.
My art work was suffering, and I was losing my ability to keep control over a paint brush… but I would tell myself that it was time for a new style anyway.
I finally chose to acknowledge something was wrong when a friend was trying to get my attention and was poking me. I didn’t feel it, so the poking led to pinching, and I didn’t feel that either. My friend was scared, and their reaction made me just as scared. After seeing nail marks on my arm that I didn’t feel, I needed to see a doctor.
The doctor tried to tell me I had carpel tunnel, until I mentioned the feeling of lightning zapping through me.
I was sent straight to a neurologist, and she said it was probably a blessing I didn’t want to pay for air conditioning because the summer heat brought the quickly progressing MS to light.
I was an emotional wreck. I was sad and angry; scared I would not be able to walk or paint, that I would have to live with my mother for the rest of my life.
The first medication I was on messed with my emotions and wasn’t working. Things spiraled out of control for a few months, but eventually things settled and were becoming more normal. I was sick, and I accepted that, but I would not accept changing who I was for my Illness. I was still an artist, I was still a woman who was going to date, go out with her friends and live the life I chose for myself.
All of my bad choices had a silver lining; they gave me the head start I needed to fight my disease. Since the day I realized I had MS, I have changed my eating habits, deciding to give the Shwank diet a try. Although I hated exercising, I started kickboxing. But the most important change I made was to make sure to push the pause button and to take care of myself.
July 7 will be my 7th year with MS. I am still living my life the way I want to, and it’s a pretty normal one. I have good friends, a great support system to help me keep myself in check, I take a pill once a day, I can walk, and although I thought things were going to fall apart, they did not. I turned my MS into opportunity. I have spoken about my story with students at Columbia University, the THML theater company, I create comics and I hope there will be more opportunities for me to spread the word that MS is not a death sentence.
Of course, there are moments where I am angry and wish this never happened to me. No one wants to be sick. But I have decided to view this part of my life as a secret blessing. My MS has given me a bigger voice, and I hope that it helps people who feel the way I did six years ago.