In December of 2005, I remember feeling a sharp pain in the back lower part of my head, thought it was a headache and then stopped thinking about it. It was uncomfortable but ultimately went away. Then one evening in January 2006, I felt sick, kind of like a mild flu. I think it was a Sunday night. I went to work the next morning at North Central Bronx Hospital and as I did every morning, I went to the local café and got a cup of coffee. As I got into my car, I put my coffee, as I always did, into my left hand. But on that day, it slipped right through my fingers. I was annoyed more than anything and cleaned up and kept driving. As I drove, I started to feel dizzy and heavy and not well, and pretty suddenly started to lose all sensation in the left side of my body. When I got to work, I went straight to the emergency room and asked for help. I remember feeling embarrassed and uncomfortable to be a patient in my hospital but also so relieved to just admit that I needed help. The doctors there did a CAT scan and thought because of a mark on it, that I had had a stroke. I decided at that point to get a second opinion and met with a recommended neurologist. I had an MRI done and one lesion was found. He subsequently diagnosed me with Acute Post Infectious Encephalitus, not MS because there was just one lesion. I didn’t question that diagnosis. I took steroids, a short leave from work, and slowly recovered, regaining all sensation in the left side of my body.
In March 2006, similarly out of the blue, I woke up feeling nauseous, dizzy, and as if the room was spinning constantly. It almost felt like I couldn’t stand up straight, as if the world was pushing down on me. It may have been the worst I’ve ever felt in my entire life. I saw my neurologist who thought I had an inner ear infection. I saw an ear, nose, throat specialist, who found nothing. I did acupuncture with the assumption that it was an inner ear issue. Ultimately, I did my own research and figured out that I had vertigo. When I told my neurologist, he ordered another MRI and this, this moment, in hindsight was so pivotal. The radiologist thought that this MRI showed multiple lesions and thought I had MS, my neurologist did not. Call it collective denial, but we ultimately decided that I did not have MS and after more steroids, the vertigo subsided. Once again, I did not get a second opinion. I didn’t want this diagnosis. I was engaged to be married, just starting my career and I take responsibility for not challenging these interpretations. Soon after, I got married and in April 2007, gave birth to my son.
For most of this first year of motherhood, I was fine, totally symptom-free as is common. I wasn’t on any medication because I was not diagnosed. I essentially forgot about what had happened, only occasionally panicking that vertigo would return. And return it did, in April 2008. It wasn’t as debilitating as the first time but it was terrible. Following the vertigo, I experienced mild numbness again and after another MRI, more tests, and a new neurologist, I was finally diagnosed with MS in June 2008. This new neurologist told me that I needed to start medication immediately, that a decent prognosis depended on that. I hesitated because I didn’t want this to be real. Because I was terrified. Because I was a new mom and breastfeeding. Because I was in denial. I lingered in denial until one day, on a walk with my son in NYC, a relative called me and told me they were sorry. I remember the store I was standing in front of when I heard those words. Somehow this propelled me out of denial and into deep sadness because I now truly understood that this was real. Undeniably real. On August 11, 2008, the day after my son found his first seashell at Jacob Riis Beach in Brooklyn, NY, I started Copaxone. But as warned, I started a little too late and in January 2009, a month before our move to Los Angeles and in major life transition, I started experiencing right side weakness and shortly thereafter started limping with my right leg. I still do but I will never accept this, will always keep fighting and trying everything so that someday I can feel free again.
When my diagnosis, the birth and infancy of my first child, and our move to Los Angeles, all occurred rapidly over a short time, I stopped and reevaluated everything. Since that radically changing year, I have been a mother to my two children, 100% of the time and have tried to make up for in dedication, presence, and focus what I feel that I fail to do for my children physically, namely, run and everything else that goes with having freedom of movement. My job has been surviving, not surviving motherhood, which I feel is a true gift, but surviving. Standing up. Moving. Always getting back up again. Never quitting and trying every kind of treatment that I can while keeping myself educated and informed and in charge of my health. I have changed my diet, tried pilates, yoga, personal training, spinning, acupuncture, herbal medicine, vitamin shots, physical therapy, walk aides, massage, cupping, acupressure, reflexology, cryotherapy. I have seen neurologists, osteopaths, naturopaths, chiropractors, nutritionists. I am always trying something new as my needs and body changes. What works today might not work tomorrow.
Today, after 7.5 years on Copaxone and an estimated 2,700 injections, I am on Gilenya. I still limp. I still try any new treatment that I can while sticking with my very consistent diet/exercise regime. I am frustrated, exasperated, angry, sad, hopeful, determined, and trying to look up, always.