2011

It always is difficult to pick up the laptop and write my annual blog. This MS thing is taking it's toll on Sara and I and we are ready for a cure any day now. We fund raise when we can, but the fruits of our labor unfortunately come very slowly. The MS Society is working on many angles to curing this disease and it is refreshing to see our hard efforts driving the train to find answers. I know Colleen Kalt and she is really a great ambassador for all who have MS. She is seeing to it that our donated funds are going towards the most promising research. My only regret is that I feel we could do a better job of raising funds without spending so much doing it. The money it takes to put on the many fundraising events comes out of the amount raised. The smaller the piece of pie is, the more money can go to finding a cure. In 2010 for example, 16.7% of the money raised was spent on raising it. This leaves only 83.3% left to support programs and most important, the actual mission of finding a cure. I think with better planning of events and creative idea's we could get the administration costs and the fundraising costs down to 10% leaving 90% going for research. Every dime makes a difference in this fight.

We started our 2011 season with a training setback right from the start. We knew that skiing in the mountains was becoming more and more difficult for Sara. The altitude just adds to the fast onset of fatigue and then everything starts getting bad quickly. But we also know that we have spent some of the best times together on the mountain skiing. So we decided we needed to get in at least one last ski vacation to the mountains to keep our lives normal and not caving to this disease. We went to Utah to ski the mountain of Deer Valley. Sara has read for years about the meticulous grooming of this #1 rated resort and nobody loves groomed "corduroy" more than Sara. This was her trip, we were going to where she always wanted to go, period. We settled into our room, got the quick lay of the land of Park City and after a good dinner hit the sack early to get to the mountain the next morning.

Weather was great and there we were standing at the base of Deer Valley, tickets in hand, skis on our feet, ready for the accent and a day in heaven.
 
                                             I am going to give you a snapshot into what it can be like to live with MS.

We head up the 1st chair to begin our trip up the mountain, smiles all around. We hop off that lift and after a short shot to the next we are back on again looking for more altitude. When spring skiing, the snow at the bottom of the mountain degrades quickly as the sun hits it and so we head to the higher altitudes to find snow that is just heavenly. While riding the long high speed quad chairs I get a good chance to go over the trail map to make the plan for the morning. For those of you that have never skied at a mountain resort, make no mistake about it, without a trail map you might as well be blindfolded, dropped into the middle of Los Angeles and then expected to find your way. A plan is a must as the vast distances covered can sometimes boggle the mind. We make out our plan and let gravity do the rest. We have a nice run down a blue groomed trail and get on a shorter lift now that serves the top 1/2 of the mountain. At the top we slide off the lift and Sara says she needs to use the facilities. We slide a short bit to a small chalet just down the trail and pull in so she can do her business. So far so good??

She returns and I am about to see first hand how MS works. Upon getting to her skis she was now fatigued from having to get out of her equipment, walk to the bathroom, up and down some steps, and dealing with all the cloths, etc. She gets to her skis and I watch her spend 2 minutes to try to get into her bindings. She could put her boot into the toe piece, but when she needed to push down with all her weight to snap in, she just couldn't do it. I swore I just watched her walk into the bathroom normal and doing great, only to see her return unable to get into her skis. I was at a loss for words and would not have believed it had I not seen it with my own eyes. I helped her get snapped in and away we went. I watched this person who skied the last run with good style and technique, reduced to someone who looked like they had never had a pair of skis on their feet before. Her whole left side shut down and it got dangerous at one point when the run became very narrow. I could tell she was very scared and not because the skiing was difficult, but because she did not have full control of her body. Her legs were not doing any of the things her brain was telling them to do. I can't even begin to imagine what that must feel like; helpless. In fact, I kicked myself in the ass as I actually got mad at first, ranting; "what the heck are you doing, you are acting like you have never skied before?" When what she really needed was compassion from her soul mate. When I finally got my crap together, we were faced with some decisions. We still had 1/3 of a run to the bottom, no way she was going to ski that. Here is where having a ski instructor as your partner really pays off. We put her skis between mine and she stood behind me with her hands around my waist. I provided the stopping power and she just needed to hang on. We made it without problems, but Sara's legs were now totally shot and we knew we were done for the day.

The next day we headed for the mountain again and figured if we stayed close to the bottom on some short runs we could maybe fight off the fatigue. We did, and actually Sara was able to ski well and get her confidence back. Skiing is much better with a smile on your face instead of terror. So after many runs and doing very well I was convinced that we should go up the big chair to ski a run I had scouted out the day before. It was perfect for Sara and I just knew she would love it. After she reluctantly agreed away we went. The run was great and Sara was skiing well with big smiles all around. But without fail, the length of the run started to take its toll and fatigue set in. Worse yet, near the bottom the snow was getting very heavy from the sun baking on it. Sure enough, these two things together were just too much. She fell and her ski grabbed in the soft snow and "snap" there goes the right ACL. Most of you know that she blew her left ACL at Cascade Mountain getting off the lift a few years ago. Here we are, 2nd day on our 7 day trip and we are in the local doctor's office getting x-rays, immobilized, crutches, and worse, no more skiing. Grim! I have to take the blame on this one. Here is where having a ski instructor as your partner sucks. I always want her to have the best most memorable experience, and sometimes I use poor judgment to get to that result. As an instructor for over 30 years, I know better. Sara; I am sorry for not keeping you safe.

The knee surgery went well but the rehab cut into our early ride training. When we could get out and ride, the exceptionally hot/humid weather did us no good. In all our training rides we could not do over 30 miles before Sara began to have major problems. This would prove to be a major problem for the MS-150. I am sad to say that in 2011 Sara would not start our 7th MS-150. I went to Waukesha with Sara's sister Rosie instead as she would fill Sara's shoes and ride for her. I did the ride alone on my new solo recumbent bike. It was nice to make the long ride on this new bike, but I was lonely. I missed my riding partner. Sara met me in Whitewater and we spent the night together as well as attending the evening program. Aside from a totally rude motivating speaker that did little to motivate anyone, a great time was had by all. Sara was recognized for her outstanding fundraising as always and when all the people with MS were asked to take the stage she helped put the face on the reason why we are all there.

Sunday morning starts with mega thunderstorms, hey; just another day on the MS-150. While most are bitching about the weather, I am not. There is something I love about riding in the rain. The cooling effect of the rain gives me energy. This concept works for about 30 miles and then the sun comes out and I mean, hot, hot, hot. The rest of the ride is hot and humid all the way to the finish. Sara meets me close to the finish and we switch to our tandem to finish the ride together as it should be.

MS is a cruel disease. It's unpredictable, unforgiving, and is progressing much faster than I wish. We thought we had many rides left as a team, but maybe not. We are working hard to try to get back on our tandem for the 2012 ride. Sara is motivated and that is good, a positive attitude can be a powerful training tool and an absolute must for dealing with MS.

They say that a marriage is a love/hate relationship. I agree; I LOVE MY WIFE / I HATE MS!

Michael