Tuesday, August 2, 2011

The Fight Against MS: Motion Without Limits

Continued from last week, Chris Crawford would like to share his write-up from 2009 after the Bike MS fundraiser. Bishop-Wisecarver is sponsoring him in this year's 2011 bike ride, and you can learn more about him, his sister Bonnie and their fight against MS in our latest webisode series "Motion Without Limits" on our YouTube channel. To read his 2008 letter, click here.

She is a Fighter by Chris Crawford
MS Bike Ride: Written in 2009

"This year’s ride started with a tough reality – Bonnie told me she could not ride.  After two years of riding on the back of my tandem bike, Bonnie was instead sitting in a wheel chair, back as a volunteer at Rest Stop #1.  While this is obviously an important part of supporting the fundraising effort, it is not the same as feeling the wind in your face, pushing those pedals, crossing that finish line, and feeling like you, personally, are creating a visual impact of the power of the will – truly giving hope to others with MS.  Remember our friend Michael who, after seeing Bonnie ride two years ago found a way that he too could ride – this was his second year riding solo.  Bonnie helped Michael find the will to do that.  Seeing Bonnie sitting in a wheel chair this year was a tough thing for me to see.

Plus, not only was I sad that Bonnie couldn’t ride, but I also knew that I would actually have to train for a longer ride myself.  When Bonnie rides with me, we go the short route (between 20-35 miles), which is something you can kind of gut your way through.  Now, going solo, I knew I had to ride the 75-85 miles typical of the first day rider.  With a long sigh, I started training in May.

I worked hard at training and had a boost when I was helping my niece Tayler train for a boot camp experience.  Our gym trainer introduced us to all kinds of crazy routines, and it got me in shape.

I arrived in Portland in probably the best bike shape I’ve been in – in many years.  After joining Bonnie and her husband Trini, we set off for Stayton, Oregon, a very small town about 60 miles south near Silver Falls State Park, the site of this year’s ride.  We were joined by dear friend Twyla, and Bonnie’s favorite sister Barbara (certainly in my top two sisters, either #1 or #2 for sure).

There were about 500 riders, plus that many or more volunteers.  It is always heartwarming to arrive at the site and see people that have become our friends, which we only see once a year, who always provide such a warm welcome.  This is our 10th year doing this ride, and it is hard to imagine.  Believe it or not, we are close to having raised $200,000 – a total we will crest next year!  That is amazing!  And this year, we joined a new team – new to us at least – Team SlugFish, headed up by a great guy and legendary fund raiser, John Tietjen. While I know the SlugFish name is crazy, the people on the team are definitely not. They are a group of amazing people who are dedicated to finding a cure for MS. They have a ton of positive energy to share and they make the best homemade pies in the world. It was very fun being on an active team again. Our prior team, the MS Busters, basically disbanded this year.  I was told that tends to happen over time to people who volunteer.  I don’t see that happening to Bonnie and me.

Seeing Bonnie in a wheel chair is scary – scary for me, for her husband and kids, and it is especially scary for Bonnie.  We all know how the disease can progress.  Some people never get out of the wheel chair once they sit down in it.  Bonnie is such a fighter but I hate the thought of her not exercising regularly (since late last year).  Even worse was the feeling I had when she told me that, even on a day when she felt she could exercise, she chose not to go to the gym because she doesn’t want people to see her like that.  She doesn’t want to have to explain to people how she has gotten to this point

Bonnie had chosen to remain isolated from her support group.  Not all the time, but much more of the time.  That is a shift in Bonnie that I had not seen, and had not expected to ever see.  Bonnie is someone that when they tell her that the numbness in her throat is a symptom that may lead to loss of her voice, she takes singing lessons.  When they tell her that if she doesn’t exercise she may lose mobility, Bonnie says “Screw that!” and gets up at 5 am every day to swim in the pool.  When they tell Bonnie to give up this or that because it might help her fight this disease, she doesn’t think twice.  Bonnie hates the idea of not being able to walk, or talk or losing control and being dependent on others.  She absolutely hates it.  Yet, here was Bonnie isolating herself from others because she felt uncomfortable sharing this tough news.

The speaker at this year’s ride was Dr. Stanley Cohan, who just happens to be Bonnie’s neurologist and is a renowned expert in MS.  We had the privilege of sitting with Dr. Cohan for about 45 minutes prior to his speech, during which he basically gave Bonnie a private appointment. During that talk we learned that Bonnie’s nerve pain that covers much of her arms and legs is a natural symptom of MS.  We learned that Bonnie’s inability to naturally heal from a knee injury like most of us would (and the reason she was in a wheel chair to begin with) was likely a side effect of the drugs Bonnie takes for MS.  I learned that the memory loss, the feeling of isolation, the foot drag, the weakness, the numbness, the pain – are all part of living with MS.  I also learned that Bonnie is one of Dr. Cohan’s favorite patients.  He said she is a fighter.  She will do anything and everything to stop the progression of this disease.  Dr. Cohan shared his belief that Bonnie can get better.  He believes there is a cream that may relieve her nerve pain.  He said that a knee replacement is likely necessary for Bonnie but that MS patients can handle such a procedure and she can regain her ability to walk.  We were very encouraged by his words and it was wonderful that Dr. Cohan knows Bonnie like we do – that Bonnie’s fight is what keeps her strong.

I want Bonnie to stop feeling uncomfortable about other people seeing the way the disease affects her. I want to see Bonnie out of that wheel chair.  I do not want Bonnie to give up hope, thinking that all this hard work doesn’t make a difference.  I know it does.  Dr. Cohan said that the amount of money provided by our government and through government sponsored activities for MS is a mere pittance compared to other diseases that affect a similar number of people (about 400,000 in the US today have MS).  But for many, MS can affect them for 20, 30, 40 or more years.  Bonnie has had MS for 25 years.  That is a long time to fight this fight.  But with your help, and all those that give their time or money to fight this disease, we are making a difference.

You are amazing in your generosity.  There are a lot of worthwhile causes, and certainly these days in our economy are tough for many.  Your support, at whatever level, is so much appreciated.  And one more thing I want to share with you.  This year, of all years, I completed a Century Ride – that is 100 miles in one day.  It was definitely not easy but I was in good biking shape and the route seemed manageable so I thought I could do it.  I went for it and while the last 10 miles were absolutely killer, and it will take awhile for the pain to go away, I did it!  And most importantly, if Bonnie gets one ounce of extra fight in her, because I gave everything I had for her, it is worth it.

Thanks again for your help.  And cheers to our next 10 years!"