It is no secret that I have Multiple Sclerosis aka MS. This is one of the most bizarre diseases out there. Everyone's MS is different. If you have known me for most of my life you more than likely have witnessed some of the ways MS effects me. On the other hand if you have known me through the biking world you may think I am just fine. One of my worst symptoms is very silent to those around me. Did you know that Cognitive Challenges is one of the main MS symptoms. It is so incredibly frustrating. As a child I felt stupid and was often embarrassed from this symptom. The cognitive condition occurs when a lesion (area of nerve damage) occur in certain locations in the brain. Examples: One may have difficulty finding the right words to say, or trouble remembering what to do during a simple routine (I call this hitting a wall with my thoughts), multi tasking, foggy thoughts, one dimensional thinking. These symptoms come and go at any time which is good as well as bad. So needless to say I am frustrated quite often. If you ever here me say "I can't talk" now you know the reason behind it. Imagine trying to get ready for a stage race day after day when multitasking is nearly impossible. Not only is it frustrating it is also exhausting.
One of the National Multiple Sclerosis Society's slogans is "But You Look So Good". Being an athlete with MS I believe in my heart, exercise is one of the main 3 things in which has helped me do so well while living with MS. When you are a competitive athlete you have to have your mind in the right place for success. If you are always doing the very best you can then you are avoiding setting yourself up for failure. Doing the best you can as an athlete means training properly, eating well, getting plenty of sleep and most importantly "learning to listen to your body, heart and mind". This actually goes hand in hand in living successfully with Multiple Sclerosis. The heart and the head will tell you different things. The heart is the passion and the the head is the smart. Both are important in order to live successfully with MS as well as being a good athlete. A wonderful coach, friend and mentor has taught me all of this pertinent information.
This all brings me to Kimberly Flynn Fasczewski. Kym has been my coach in cycling since I believe 2008. Over the years we have grown together in many ways. She has taught me so much in life just through cycling. It never occurred to me how I would learn to deal with my MS just by being an athlete. Since working with Kym, she has earned a Masters in Research Psychology with an emphasis on sport and exercise behaviors. Currently she is working on her PhD at the University of North Carolina at Greensboro in kinesiology with a concentration in sport and exercise psychology. This girl has done all of this while teaching university classes, owning Vantaggio Fitness and Nutrition, coaching, running an elite all women's cycling team, racing as a professional in the road, mountain bike and cyclocross areas, wife, friend and student just to name a few.
Recently Kym was awarded the Kate Barrett Professional Development Award to go study this summer in Illinois with one of the top researchers in her field. She will spend 2-3 weeks at the University of Illinois working with Dr. Rob Motl. Dr. Motl's research focuses on the social-cognitive determinants and mental health consequences of physical activity participation with a particular focus on MS. (which is the topic of Kym's dissertation).
Together Kym and I have learned not only what works for me as an athlete living with MS but also we have realized just how little information there is in the world of how effective exercise can be for some one living with MS. The face of MS has radically changed since my diagnosis as I have mentioned in my first blog. Back in the earlier days they would completely discourage exercise to those diagnosed. Most everyone knows someone affected with MS. Usually I hear people say "I knew a lady/man who lived across the street who was bound to a wheel chair and they died of MS". I would like to say that no one ever dies from MS. They may die of complications they had while living with MS. Times have so changed and they will continue to make radical changes due to people with a passion (the Heart) to do research like Kym to help make a difference in as many peoples lives as she can. It is obvious to me and many others that Kym is just in the beginning of making a difference in the world. I myself share the same passion of helping people with any adversity to live life to the fullest. "Find A Way"
It will be interesting to see where life will take us both. One thing is for certain, We are "Paying It Forward". Thank you Kym for helping me get to this point in my life. As Kym says to me "I speak Grace" so it is ok!!!
Wednesday, December 31, 2014
Well my story really began 44 years ago in 1971 when I had my first symptom of Multiple Sclerosis. Imagine being a 10 year old little girl who loved playing with dolls as well as her dog Jack. While playing one day I noticed the vision in right eye was gone. When you are a child and you notice something isn't right you tell your mama. Thus the story of life with MS begins. Fortunately for me I had an amazingly strong eccentric mother who’s name was Rosemary, who had the mind set of there was no need to worry me or be over protective. Shortly After this first symptom, my mom made it seem almost like a game to me that I was “getting to go” to the Vanderbilt Children’s hospital in Nashville, Tn. She got me all excited about receiving my very first feet pajamas and I even got to pick out some cool coloring and puzzle books all for my visit to the hospital. She also told me that while I was visiting the hospital between tests I would get to make new friends who would be very sick, she encouraged me that I could make them feel better just by visiting their rooms to play games like Old Maid and Bingo. Once I saw these other children, I realized I really wasn’t sick and it was no big deal to not have vision in one eye. At least I had all of my hair and another eye I could see out of. During this visit at 10 years old is when I had my first spinal tap! It really wasn’t a big deal because Rosemary told me what a brave girl I was. Actually that spinal tap didn’t hurt. Funny how safe you feel when you are young with your parents close by. My mom always said my daddy would never let anything bad happen to me.
Nine years later in 1979 my rock, my daddy was diagnosed with Melanoma and passed away shy of 11 months after his diagnosis. This happened in the fall of my first semester my freshman year in college. Rosemary was only 48 years old. Mom knew I was also sick after several strange episodes for me over the years like numbness, heat sensitivity, fatigue, tingling, balance, eyesight, cognitive problems in school just to name a few symptoms that go with suspected MS; however, getting a diagnosis with MS 35 years ago was not easy. With technology today the face of MS is completely different. By my spring semester 1980 I had another bad episode of optic neuritis this time in both of my eyes. Although I was 18 I still went to my mom with this issue. Off we go for another trip to the hospital in which resulted in my second spinal tap and this spinal tap hurt and resulted in a diagnosis of Relapsing Readmitting Multiple Sclerosis. My daddy died a few months before I got the diagnosis so he never knew what was wrong with me over the years. Rosemary said it was probably a good thing because he would not have handled it very well. The year was 1980 a most life changing year for our family. With this diagnosis my mom said in these words “Gracie, you are not going to dwell on this and in fact I want you to go live your life to the fullest and have fun while doing it”! Being the good little southern girl Rosemary had taught me to be my answer was “Yes ma’am”. I personally did not shed a tear which I’m sure was not the case for Rosemary. She was amazingly strong to be a widow at so young and knowingly had a sick child and still managed to encourage me to be brave and face my life with MS head on.
From 10 years old until now I have never let MS get in my way. In fact if nothing else it has encouraged me to be as strong as I can. It never occurred to me to be any different thanks to my mom. I can accentuate the positive that I have had many years to learn to manage my MS symptoms. Over the years since my diagnosis and after several different relapses, experiencing almost all of the possible MS symptoms one can experience and despite one relapse which left me with a wobbly leg that I refer to as my “Elvis” leg, I am still going strong and daily I am “Finding A Way to Keep My Eye on The Prize” My heart knows that the power of positive thinking and laughter is key to living a successful life with or without Multiple Sclerosis. Sometimes riding a bike is tons easier than walking. I am fine with that because I can cover much more ground on a bike anyway.
While growing up I was always a very active child and even now as an adult I remain active. Over the years I have dabbled in running and even accomplishing several 5 and 10k as well as marathons and ultra marathons. After college I had the opportunity to ride someones mountain bike while on a back packing trip in California. I will never forget that feeling of freedom on a bike. On this borrowed bike I was able to ride in a field, over rocks thru a creek and even down some steps. Needless to say I was hooked. It wasn’t until after 1990 that I got my very own mountain bike. Around 2005 I realized I was tripping over my Elvis leg and falling down while running, and I was also getting pretty aggressive with my mountain bike which more often than not results in falling off your bike when you are a beginner. It was at this point that I decided to put all of my eggs in one basket. I hung up my running shoes and hopped on my mountain bike. This is when my real journey of “leaving MS in the dust” begins.
2005 I took back control of my life and found a disease modifying therapy that worked for me, changed my diet and got very serious about an exercise program of riding my bike. Once I got strong again from my last relapse, I decided to try my luck at mountain bike racing. I knew nothing really except to go as fast as I could like you do when you are running a race. Apparently that was good enough to win in the female division. The crazy thing is there was no age category so I was racing girls half my age without a brain disorder. The young girl on the podium next to me asked “How old are you”?..... I laughed, told her my age but said “that is nothing, I also have Multiple Sclerosis”!!!! At that point and time, It never occurred to me that I would be making a difference in so many others lives living with MS. From that race day till today I have accomplished some of the craziest mountain bike races that even few able bodied people attempt to accomplish just to name a few, The Leadville 100 four times, Sea Otter Classic, National Cross Country race, British Columbia 7 day stage bike race, Breckinridge Epic 6 and 3 day stage race. Although I may not be the fastest racer in the race I do know that I am there to do the very best I can and see what that can get me!!! I can always finish anything I start simply by not being a quitter and “Keeping my Eye on the Prize”. I have had the opportunity to travel across the US speaking to many people newly diagnosed or others living with MS for many years about how important it is to be in control of your life with MS all while doing the very best you can and see what that gets you!!!
This 2015 season will hopefully be my most successful year to date. If all goes well I will be the first ever female my age living with MS for most of my life to accomplish 3 3 day stage races in one season beginning in May. On top of the 3 big races I will need to do several training events to get me in tip top condition for these events. A quote from Author Ashe “One important key to success is self confidence. An important key to self confidence is preparation” has been very substantial in my daily training. His quote is so accurate. The toughest part of a race is the training. You should suffer while training and if all goes well the event will be a piece of cake. Mountain biking is like life. With mountain biking, you have to have momentum to carry you over obstacles, so therefore MS is like a race. You have to take care of yourself by keeping movement aka momentum so you can be prepared in case of a relapse. By today’s standards with MS and the available disease modifying therapies, people with MS are experiencing less and less relapses. If only there had been one available when I was diagnosed. Who knows what my strong mind and body could have accomplished. This is when I have to remember what my mom said to me... “Don’t dwell”. It is what it is so I am making all kinds of lemonade, checking all kinds of boxes and my glass is always half full.
So with all of this said, my 2015 3 biggest intentions are as follows: The Transylvania Epic in State College Pennsylvania in May, The Breck Epic in Breckinridge, Colorado in August and finishing in November with a stage race known as the worlds hardest stage race “La Ruta de la Conquistadors” racing across the continent of Costa Rica.