I would rather walk another 50 miles than speak in front of a large crowd so please bear with me if my voice cracks or I start to cry. Or I throw up.
Tonight I am going to tell you a story about my husband, Tom Baldi. It is not a unique story as I am sure that every one of you sitting here this evening could stand up and tell one very similar to ours. My goal in sharing it with you tonight is that I hope to help at least one person who has been newly diagnosed with MS to feel that they are not alone.
Tom and I were married in April of 2003 and shortly thereafter, Tom decided it was time to get a new riding lawn mower for our large lawn. I said “no way, you can walk your lazy behind around the lawn with a push mower, it’s good for you.” By June when Tom started to complain that he was having trouble mowing the lawn because his leg would get weak, I just knew he was up to something. For those of you who do not already know Tom, he has a great sense of humor and he is quite the jokester. I figured he was just trying to make me feel guilty about forcing him to use a walk behind mower because when the yard was about half done, he would have to sit down, rest his legs for a while and of course, drink a beer, before being able to finish the lawn.
It wasn’t until this happened a few more times and I actually witnessed his weak leg first hand that I realized he was not trying to pull one over on me. Convinced that it was a pinched nerve in his back, we made an appointment with his primary care physician. He referred Tom to a sports medicine doctor who performed some tests and scheduled Tom for an MRI of his head and neck but we were never given any indication that there could be something seriously wrong with him.
August 25th, 2003 is the day that our lives were changed forever. There are very few days in my life that stand out as vividly in my mind as the day Tom was diagnosed with MS. It is one of those days that you remember exactly where you were, what you were wearing, what the weather was like and how you felt on the inside. It was a beautiful summer day and I was at a financial conference with my company. During the break, I received a voice mail from Tom saying that the Doctor had called him at work with the test results. When I called him back I said “So, what did the Doctor say?” Tom replied “He told me that I have MS.” Dumbfounded, I screamed into the phone “he told you what?” “That I have MS” he said again. Very slowly I said “Tom, please tell me, did this Doctor tell you that you have Multiple Sclerosis?” Somewhat frustrated he replied, “No, no. He said I have Multiple Scarizerous, it’s not the same thing.” Thankfully, we can look back on Tom’s misunderstanding of what the Doctor said and laugh because it was a classic example of “Tom not listening”. However at the time, I knew exactly what the Doctor meant and I was scared to death. I told Tom to meet me at home right away so that we could call the doctor together. I don’t know how I made the drive from Burlington to our home in Upton that day as my vision was clouded with tears and my head was filled with pictures of my strong and vibrant husband Tom, being stricken by the debilitating effects of this unpredictable disease.
An hour after arriving home, the Doctor called and confirmed what I had feared the most, Tom had MS and there was no cure. I knew that Tom didn’t understand anything about the disease and as I sat there crying uncontrollably, he kept saying “why are you crying so hard, what does MS do to you?” How could I look into the eyes of my husband, my best friend and the love of my life and tell him that MS was slowly going to take away his ability to move.
Two days later we were sent to see to a neurologist at Faulkner Hospital. In a very short span he told us that yes, Tom did indeed have MS and that there was no cure. He went on to say that there were new treatments on the market but there was very little research about them. He explained to us what he saw as the typical progression of the disease and told us to go home and live our lives and if we had a problem to give him a call. Before we left he did give us two pieces of advice that would prove to be useful, the first was to learn how to say and spell “Sclerosis” and the second was the only website we should look at is that of the National MS Society. We walked out of his office feeling more frustrated and alone than we have ever felt in our lives. Needless to say, we knew our search for the right MS Doctor was not over.
As soon as we got home we sat in front of the computer and looked up the website of the National MS Society and we were glued to it for hours. We realized that people didn’t die from MS, that there was on-going research and new treatments that were indeed working. There was a wealth of information and programs available for people affected by and living with MS. I remember reading about the MS Challenge Walk that was due to take place on an upcoming weekend. I couldn’t imagine that anyone could walk 50 miles in one weekend. On another visit to the website, we signed up for the “Knowledge is Power” series which was designed for the newly diagnosed and dealt with a number of different topics over a period of six weeks. It allowed us to absorb information slowly and then forward it on to our family members so they could also understand more about MS and what we were going through.
The first year of Tom’s diagnosis was a very difficult one. We felt frozen in time, unsure about our future, afraid and very alone. People all around us were going on with their lives; they were making plans for the holidays and vacations, talking about the future and going to parties. We were living in limbo, not knowing what tomorrow was going to bring. Every time Tom felt a strange sensation, we were sure he was having an exacerbation. That fall I surprised Tom with a trip to Las Vegas for his 40th birthday. I remember the two of us sitting by the pool at the Bellagio, looking longingly at the hot tub. We were afraid to go in the hot tub as we were convinced that hot water would make Tom’s MS worse. Boy did we have a lot to learn. This first year can also be characterized as the year that our families were sure they knew what had caused Tom’s MS and how to cure it. It was the lead water pipes in Newton or it was the paint fumes that Tom was exposed to while painting his cars as a teenager. It was from the stress of losing his father. They wanted him to take this vitamin or take that vitamin, practice Yoga and do acupressure. I remember one day Tom saying to me “did you know that it usually strikes people between the ages of 20 and 40? I was 39 when I was diagnosed. If I had only been 40 already, it wouldn’t have gotten me.” I said “honey, it doesn’t work that way, MS does not discriminate.” One day Tom received a call from his brother Dave who had been doing his own research. He said “did you know that MS affects women more than men?” Tom replied, “Yes, I read that too. And the medicine they are giving me is derived from the ovaries of female gerbils! They certainly weren’t thinking about men when they created that drug. I can only imagine the side effects I am going to have!” You see at this point, Tom was convinced he was the only man out there who had MS.
By that spring my frustration turned into action when I signed up for the 2004 MS Challenge Walk. I felt so powerless to help but I knew the very least I could do was walk and raise money. We attended an “Explore the Challenge” meeting where we met Lori and Tina and we learned all about the walk and saw a movie that got us geared up and motivated for the event. Tom signed on as a volunteer and to our surprise our sister-in-law Sandy had signed up with the bike crew and Tom’s brother Dave also signed on as a volunteer. On day one of the walk, we were just four people facing a monumental task, trying to find our way and help each other and Tom with his journey through MS. By the end of the weekend we knew we were part of something so much bigger. We became part of a family of thousands of others, all united in a common goal to end the devastating effects of MS. We no longer felt alone in our struggle and each of us were there together because we love someone who has MS.
Over the next few years we recruited additional walkers, crew and volunteers. We formed a team and have been involved in numerous other events such as the one day walks, the Journey walk and the Great Mass Get Away. I wish I could say it gets easier every year but it doesn’t and as a result we can never give up. A couple of years ago I was extremely touched by the words of Clayton Wicker who spoke at the candle light vigil. He said it was his dream to never see anyone in the red shirts again. I have not forgotten his words or his dream and so I made a promise to Tom and I make it to all of you that I will not stop walking, bike riding, volunteering or raising funds and awareness until a cure is found.
Being closely affected by MS has taught me to try not to take anything for granted but occasionally something will happen that reminds me I have done just that. At the 2005 Challenge Walk when my brother, sister-in-law and I were crossing the finish line on day two, a woman approached us and thanked us for walking. We told her she didn’t have to thank us, that it was really no problem. She replied “no, you don’t understand, I have MS and I can’t do this walk.” I felt so terrible for trivializing what we had just accomplished because I knew that Tom felt the same way. He is always at every event with a smile and a joke, encouraging us, clapping and cheering us on but I know he would prefer to be walking or cycling with us. So I say to Tom and to everyone who will be wearing a red shirt on Sunday, I thank you from the bottom of my heart for your courage, for your smile, for being positive, for fighting this battle everyday and never giving up hope. It is because of your bravery as you face an unknown tomorrow that you are paving the way for future generations to live in a world free of MS.
As I think back about the day Tom was diagnosed with MS, I realize that I have similar graphic memories of other bad days in my life, like the day my father died and the day Tom’s father died. I also have colorful memories of very good days, like the day Tom proposed to me and our wedding day. In my mind I have already reserved some space for another vivid memory. I don’t know what the date will be, hopefully soon, but space is reserved for the memory of the day that they find a cure for MS. I will know where I was, I will know what I was wearing, I will know what the weather was doing and how I felt on the inside when I am able to look into Tom’s beautiful eyes and say “honey, today they found a cure for MS.”
Please never give up hope and thank you for letting me share our story with you tonight.