Remember we may look disabled, but we are capable of so much more!

I was 25 years old when I finally heard the words, "you have MS." I remember it well. November 10, 1995, I was in my neurologist’s office with my father and my boyfriend at the time, who soon became my husband, when those words were said to me. It was a sense of relief for me. I had been having strange symptoms since July of that year and deep down I knew it was bad. In grade school I remember being told about MS and MD. I knew Muscular dystrophy was worse but didn't know much about this multiple sclerosis disease and now I have it. I think one of the hardest things about this diagnosis was seeing everyone's face when I told them. See, there was a sense of relief for the person who is diagnosed with a disease, almost jubilant because there is a reason you are not feeling well but it’s a different feeling for the people that love us. I finally knew what was happening to my body, why it was acting weird. I was experiencing muscle spasms, numbness and tingling in my legs and now I knew why but now what?  

Even though I was relieved that we finally had an explanation, the people around me were not as relieved.  They were worried, scared.  I could see it in their faces and hear it in their voices. I knew at that time I needed to lose weight, I was very heavy and it probably would help me with my gait, but for some reason that diagnosis didn’t become my reason for starting my weight loss journey instead I was more focused on trying to figure out how to stay out of a wheelchair or lose my eye sight,  That’s pretty much what I was facing so losing weight at the time wasn’t a priority.  

When I was diagnosed, it's hard to believe this, but there wasn't the Internet like there is today. I had to go to the bookstore and library for any information on MS. I remember taking a trip to Italy to visit family and it was on the flight to Milano that I was reading a book about MS. I had a lot of the symptoms and feelings the book was describing about MS, it was as if I was reading a story about myself.  The book did talk about changing your eating habits and exercising but I wasn’t ready to change, not yet.  So when the doctor diagnosed me, I wasn't all that surprised but my family on the other hand was devastated.  Hearing that horrible sentence, “you have MS” meant different things to me than it did to the people I loved.

Looking back at November 10, 1995, was a tough day for my boyfriend, Chris. He had just heard the news that the woman he loved had a debilitating disease and that his mother had breast cancer, stage 3, which back then was a horrible diagnosis. I knew at the time that he was a strong person but how does one person handle this?  I remember thinking, how the heck am I supposed to process all of this never mind him.    When you are the person who has a disease, you know how strong you are and how you can handle it, it’s the people around us that we worry about.  How could he continue to love me and want to be with me not knowing what our future holds, will he be pushing me in a wheelchair for the rest of my life?  Is this something he is capable of handling?  I just didn’t know and that frightened me.  Until Christmas Eve 1995, he took me up to visit his family for the holiday and took me down to see the Boston Commons all decorated.  As we were walking around, he suddenly got down on one knee and asked me the most beautiful question I have ever heard, “What are you doing for the rest of your life?”  Any insecurity or doubt I had went away.  He wanted to commit himself to taking this journey with me, this unknown.  That takes a lot of strength and to that I will always love him.  Now, there were some freak out moments, still are but less of them, but even though he may have had his doubts at times, he was waiting for me at the end of the aisle on our wedding day, June 14, 1997.

My mother, on the other hand from what my sister and brother told me, couldn't stop crying. I had moved out of my family home and into an apartment with Chris back in June of the same year. I laugh to myself looking back because my mother kept asking my doctor if this strange new situation I was in, living with Chris, could be a factor.  She wouldn’t let it go and then I had my father who kept asking the doctor if he can run a Lyme test on me, again.  They obviously had a difficult time coming to terms with the fact that I was sick, not just sick and they can make it better but sick with a disease that they can’t fix.  I came from a very sheltered, privileged family.  My father is an attorney who likes to develop land and build houses on the side, a true entrepreneur.   We had money, not extremely wealthy, but my father worked hard.  I was spoiled; I admit it and I loved it.  I’m not saying all of this to brag but you need to understand how easy life was up until this point.  Looking back, it was a lot of fun, but at the time; I don’t think we truly appreciated what we had until I got sick.   It was this diagnosis that forever not only changed my life but my family’s life.  All of a sudden nothing else mattered but our health and our family. 

Although it has been almost 18 years since my diagnosis, I can still see that look in people’s eyes when I tell them I have MS. Some people have a look of surprise.  I remember a good friend recently telling me that if I hadn’t told her I have MS she never would have guessed because I just keep going like the Energizer Bunny.  Now that may be a stretch because I still have the drunken sailor walk, as my husband likes to call it, but that comment felt really good.  I know that all of my hard work at the gym has helped with my balance, stamina, weight loss but to have someone tell you that they never would have guessed that you have a debilitating disease, is AWESOME.  I may have “special legs” that I call them to my kids and nieces and nephews, but I can still take care of my family. I may never be able to run again, or walk the whole grocery store or mall but it’s the little things.  I get on a scooter and scooter around those places!  The one thing I want to leave you with is please try to not rush by the people you see in a wheelchair or on a scooter as if they are non existent or don’t matter because we do!  I will never forget the time I was at Mohegan Sun with friends and a good friend of mine offered to ride the scooter back for me.  As soon as he came back the next morning, he gave me the biggest hug and said what an eye opening experience it was for him.  He felt as if he was in the way and people were rude to him.  That’s the life of a person who may need a little help at times, be it in a wheelchair or in a scooter.  Remember, we may look disabled, but we are capable of so much more!