I am much more patient with myself and with others and feel an incredible gratefulness for my family and friends who I have bonded with in an entirely new way; these are the people who are able to recognize that I am the same person, just living my life at a different pace, in a different way.
Simple things in life hold so much more value and overcoming symptoms through physical activity has been hugely rewarding. I live a much fuller life as a result. I eat healthier, exercise more because I have that much more reason to do so. Allow yourself to wallow and digest the diagnosis then go out there and be your own warrior. It took me a couple years to get my head around this so be gentle with yourself and strive for the best version of yourself.
My greatest achievement has been to become a Full Professor at my university where I teach. How I did it? I was fortunate in that I had some great colleagues who helped me along with research. It takes a community to achieve this and we have a great department where we help the next person in line reach the next level.
In a university context, it is simply important to be easy to work with, to work hard, and stay out of trouble. I tried to do both of those things. I also kept my MS diagnoses fairly quiet. My immediate colleagues knew, but the students certainly do not, nor did my Dean-- although he does now.
So much good came from my diagnosis. Far more good than bad. On a very personal level I became more accepting of others. I became more compassionate about illness and physical challenges. I started to become a better listener. I started to challenge myself. I started to run. Just like Forest Gump I kept running and running. The running translated to climbing. Soon I was climbing some of the highest peaks in the world. The climbing took me to vast corners of the globe, to the poles, to Alaska. My story is varied and unique but it is not mine alone. My story can be anyone's.
I can't forget that I have MS. I have to always be thinking about taking care of myself. I had soooo much potential in life and I often wonder what my life would have been like if I didn't have MS. The subtitle I have for my memoirs says it all! It is, "If God only gave me problems in life He thought I could handle, I sure wish He had a whole lot less confidence in me!" Nonetheless, I have really had an incredible life!
There are many good things that my diagnosis brought about. At 45 years old I became the oldest rookie on the professional pool circuit. I was given a contract to play in 15 pool tournaments a year and would try to inspire others with MS in patient talks. I met a bunch of people that I don't think I would have met otherwise, including my wife.
I've learned that yes, I have MS. But...MS DOESN'T HAVE ME!!! I am still the same active person I was before MS. But I have to do things in moderation now. And I have to choose my activities.
Would I still like to backpack to the top of Mt. McKinley? You bet! But I can't. I have no steam (energy). And I no longer raft. Because of MS, I am weak and if I was to fall out of the raft, I would drown because I couldn't save myself... or anyone else for that matter. So I still camp, fish and day hike with friends.
The advice I give to the newly diagnosed is first, this is not a death sentence. It has its negatives but for the majority they live very active lives still. Second, I tell them to find a doctor they can trust. Third, don't be afraid to ask and accept help on the bad days. People want to help where they can
I was diagnosed with MS in the final senior semester of college. It was horrible. I had my whole life ahead of me and got this news that I thought was going to stop that. I immediately thought wheelchair. But then the universe gave me an article written by Wendy Booker and I read it and was inspired to write her a letter. She then wrote me a letter that ignited a spark in me to not let this diagnosis become me and run my life. From then on I didn't and I am so thankful for her and for her words.
My whole personality and life evolved in the ten years after my diagnosis. I didn't know what to do at first. I kept having flares and ended up in stability braces and a walker. Something had to give. I quit smoking, lost some weight and learned how to fight flare ups with humor and keeping a positive attitude! And all of those things helped immensely.
But it wasn't enough for me, I wanted to do more. So one day seven years ago I laced up a pair of old tennis shoes, headed outside and started to run. It was horrible! I wheezed, coughed and sputtered my way to the end of the block and stopped. I wanted my couch, a TV remote and a cheeseburger. But an internal battled started that day, a little spark in me ignited and I told myself "You can do better you lazy little sh*t", so I ran another two blocks but mentally I was unstoppable at that point.
So last week I wrote about “This Bike Has MS”. Now I am contemplating riding in a Bike MS event in Citrus County, FL in three weeks.
I love the Bike MS tours. I love the entire concept of forming a team, showing your team pride, raising valuable funds for MS and MS research. Riding a well planned route with awesome rest stops, food and incredible people participating and volunteering to make the event safe and successful.
Last week I was honored to be the keynote speaker at the Arizona Multiple Sclerosis Society’s Women Against MS luncheon. The venue was gorgeous, the event well planned and well attended. The hard work that goes into planning and hosting an event of this size was evident.
I also had the honor of sharing the stage with a bike. To look at it, you don’t see anything different. It looks like any other ordinary bike. It doesn’t standout, it doesn’t scream of all the latest and greatest gears, tires and technology.
It’s just a bike.
But is it? This bike has MS.
Now wait a minute. How can a bike possibly have MS? Why does it look so normal? What does this mean exactly? This bike has MS?
Often when I meet someone newly diagnosed with MS they feel isolated, vulnerable and confused. And that’s just the beginning.
But I have also seen encouragement, validation and strength when they feel like they are a part of something. It is in these moments I often hear “I have MS but MS doesn’t have me.”
My diagnosis over 18 years ago initially left me feeling scared and depressed. I envisioned a frightening future of disability. Being a burden to my family. Unable to do the things I wanted in life.
Little did I know that two years later I would be running the Boston Marathon and four years later climbing Denali in Alaska. This was entirely because I wanted to push back at my diagnosis. Even as I write these words I am concerned that someone reading this is saying, “That’s great, but I can’t do that.”
I think I am immobilized. No, think isn’t correct. I am immobilized.
Immobilization comes from many sources I have decided. Fear of the unknown, fear of failure. Inability to make forward progress. Mental set backs. Fear. Oh yea, I already said that. Guess fear is my most formidable foe.
So when fear strikes I notice my reaction. I find a million alternatives or distractions so as not to have to face my fear. Crazy isn’t it? I know what you’re thinking, “this is the woman who climbed all those mountains and went to the poles”, yea well that’s different.
I’m immobilized by the fear of not producing what I want to create. I want to build this amazing community for people newly diagnosed with MS and suddenly I am only hearing the negatives.
Last week a nine year old girl asked me how I would define myself.
A few days before that a high school student asked me what was my next adventure?
“I was diagnosed with Multiple Sclerosis two months ago. I am scared. I feel alone. I was a runner before my diagnosis do you think I can still run now?”
“There is so much information out there how do I figure out the me in all of it?”
“My family is telling me I can’t do the things I did before my diagnosis, is this true?”
Today I received a reminder from Facebook that it has been 72 days since I posted a blog. 72 days! Even I was shocked.
Let me explain.....
I have been living.
I have been loving.
I have been playing and singing and dancing.
MS is not a faceless disease. There are many, many faces of MS. Our goal is to hear and share stories of those who either have the disease or know of someone who is affected by it. We would love for you to share your story and let us know how best we can assist you in your journey.