MS Is Something I Have, But Not Something That Defines Me
In the mid nineteen nineties I began having trouble with tingling and numbness in my feet. At the time, I was in my early twenties and I blew it off as poor circulation. I was a little overweight and that summer I started walking with my Dad. We would walk from my childhood house in Boston, across a bridge, and over to the Charles River. In 1966 The Standells wrote a song called Dirty Water, that song was about this area of Boston/Cambridge, Massachusetts USA.
I clearly remember chatting with my Dad about the issues I was having. He thought it was strange, but he too thought it might have been attributed to weight gain, poor circulation, or possibly de-hydration. These moments where my feet felt like they were waking up after having “fallen asleep” were sporadic. Sometimes the stretches of time between them would be so long, I would completely forget about them. Several years later I was once again starting an exercise routine to try and get in shape. I noticed that every time I reached a certain point during the routine the numbness would occur. It was usually about halfway through whatever I was doing, you know the point where your body is warmed up and starting to sweat. At times, it would be so painful I would be forced to find a place to sit down for a bit until it passed or lessened. Fortunately, walking down by the river meant there were plenty of places to stop and rest along the way. It bothered me that I was getting to the point where I couldn’t get through an entire walk without stopping. What had started out as an occasional thing, was becoming more frequent and problematic.
In the Fall of 2000 I was going through a separation which eventually ended in divorce. I was working over 65 hours a week, and my weight had once again ballooned (my weight loss/gain journey is a blog post for another day). To say that I was stressed during this time would be a massive understatement. My maternal grandmother, the person I most adored in this world had just passed the year prior, I was devastated. She was someone I spoke with every day. I grew up in her house and when I was just a child, I shared a bedroom with her. She was smart, funny, and loved by many. She’s been gone twenty-one years and I still feel the loss. Long ago the sorrow left me, but the impact she had on me was tremendous and I pray every day she’s proud of the person that I’ve become, flaws and all.
In the spring of 2001 I was now having trouble with numbness in my hands. As the months passed and summer loomed, I finally made a mental note to ask the doctor about it at my next physical. Other than my weight, which doctors seem to attribute everything negative to, I was healthy. All my blood work was good, there were other tests that came back negative, and some of the obvious things were ruled out during the office visit. I was still in my twenties so certain diagnoses were ruled out purely based on my “youth”. Doctor’s don’t do that anymore, but back then there were still plenty of medical professionals that decided you couldn’t have this or that because you were too young.
When the numbness started to spread up my legs and even to my lower abdomen, I panicked and went back to the doctor. He asked the usual questions about stress and “how was I feeling?” I told him what I wrote above, and he swiftly recommended that I go see a therapist. “You’re under tremendous stress” he told me, and stress like that can manifest in the body in many forms. Now, I’m not against therapy, quite the opposite, but how in the world was numbness and tingling in my body related to my belly bulge? I was convinced something was very wrong. This was the moment that I knew I had to be my own best advocate, because had I taken his advice and walked out, I may have gone many more years without knowing the truth.
Before leaving the office, I proposed a trade. I told the doctor, I’ll go see the therapist, but what other tests can you send me for? He referred me to a neurologist. I left the office and staying true to the deal I made with my doctor I called for an appointment with both a neurologist and a therapist. Three weeks later the neurologist sent me for several tests, including an MRI. I remember that day clearly, both my older sisters accompanied me. When the MRI was finished, I got dressed and came out to check out. The receptionist asked me to take a seat, that the technician that administered the test wanted to talk to me. I was nervous, but my sisters were telling me it could be anything, not to stress until there was something to stress about (a famous line my grandmother used all the time).
The technician called me into an office and asked, “when do you go back to the doctors for these results?” I said I didn’t know. He told me, “call the doctor when you leave here”, he was calm, but he continued “I can’t tell you what’s on the scan, all I can tell you is to get in touch with your doctor in short order.” Um okay…talk about making someone panic…I was a mess after that. There was copious amounts of wine and pizza later that night. The word diet died on the supermarket floor where we picked up the chocolate chip ice cream.
When I talked with the doctor, he gave me the diagnosis over the phone. I don’t think that happens anymore, for obvious reasons. I had MS (Multiple Sclerosis), I had both the symptoms, but also the lesions in both my brain and spine. For those that don’t know what MS is, it’s an auto immune disease where my own body is breaking down the protective sheathing, called myelin. Myelin wraps around the spinal cord as an added layer of protection. One of my earlier MS doctors explained it like this.
“The sheathing or myelin is like black electrical tape, and your spinal cord are like the wires running electricity through your house. If the black electrical tape peels off or breaks down, you can have shorts and possibly even lose electricity. Well it works the same in the body, if you suffer from a de-myelinating illness, like MS, then you can suffer from numbness, tingling, possibly even lose the ability to walk on your own or hold your own bladder.” Dr. Timothy Vartanian
I thanked the neurologist and ended the call. I then called one sister, while she texted the other to go to my apartment. At the time I lived alone, and I don’t remember much about that conversation with the doctor. Everything after MS is sort of a blur. What I do remember is my sister Grace letting herself into my apartment, grabbing my coat and my bag, and taking me outside to her car. She drove us to my parent’s house where my Mom was waiting for us. I spent the rest of the afternoon talking with different people. I called my boss and took a week off work. I called friends, I even called my ex-husband, because now lots of things that had gone wrong in our marriage made a whole hell of a lot more sense.
My grandmother once told me that the older you get the faster time goes by. When I was younger, I didn’t really understand that, but now I very much do. This past month marked the nineteenth anniversary of my diagnosis. I still suffer from numbness and tingling in my hands and feet. It turns out those symptoms were caused by damage my body had already done to itself, but I walk on my own two feet and every day that happens, is a victory. I have had an amazing career managing Accounting Departments. I have travelled with family and friends to many places both in the US and abroad. I surround myself with positive people, as negative people can literally rob me of healthy living. I have an incredible family that supports me and all my crazy endeavors. This year I self-published my first novel and I began a social media campaign with a YouTube channel to promote it. In the last six years I met and married the most amazing man. I have a lot to be grateful for, and I do my best to remind myself of that daily. A grateful mindset might be the best thing I ever did for myself.
As I finish this blog post I’m thinking my sister Grace and I should do something special next year to mark the twenty year anniversary of my MS diagnosis. Something uplifting and positive, a day to celebrate a life of living with MS, but not letting it define who I would become.
For more information on MS go to