Riding with MS



I have MS but it does not have me.

It's humbling for me to even write that I was able to finish the Jackolof 10 Miler on my bike. You see, for most of my cycling life 10 miles was barely a warm up. It's been a life full of 200-mile double centuries, solo 24 hr mountain bike racing, victories in the 350-mile winter race on the frozen Iditarod dog sled trail, and daily bike commuting in Alaska. And all of it was on a single speed bike. But Christmas Day 2003 changed all that. I woke up with blurred vision in my left eye that was later diagnosed as Multiple Sclerosis (MS). After 16 yrs of living with MS that has progressed to the point that I need a cane to walk, I am truly grateful that I can still ride my bike at all. I have all these benchmarks to gauge my disease progression. The hill coming back from the post office and the gear I'll need to shift into get up it. The 12 mile flat trail that goes out the Homer Spit and back. The stairs leading up to our bedroom. Can I do that ride on my single speed or do I need my geared bike? Just little things that help me gauge if what I'm doing to treat MS is working or not.

And the grandaddy of them all has become the Jackolof 10 Miler, a very hilly dirt/gravel road across the Bay that has no flat spots. You're either going up or down. I used to do it on my single speed bike but I'm not able to stand up on the pedals anymore and have to use a bike with gears like most people. My goal is to ride it on my single speed again but until that day comes I'm grateful and happy that I can ride a bike at all. Lots of my fellow MSers aren't so lucky.

The ramp sure felt steeper than it looks

 The first challenge of this race is just getting to the start. The Jackolof 10 Miler isn't accessible by the main road system. It's just an old logging road in the middle of nowhere across Kachemak Bay. The riders and runners must take a boat/water taxi from Homer for about an hour to the Jackolof dock where the race starts. The race ends in the village of Seldovia, also not accessible by the main road system. For someone with physical challenges this adds to an already challenging bike ride. My day started like this: We drove out to the Homer harbor with my bike. The tide was low, so the ramp down to the boat was really steep. I had to use my bike like a walker to steady myself as I slowly made my way down the 50 foot ramp. Then Kathy and Captain Willy helped me get the bike on the boat. Whew, first challenge completed! After a smooth hour ride across beautiful Kachemak Bay to the Jackolof dock, we reversed the process, only without the steep ramp this time.

Loaded up and leaving the harbor

Time to race my bike!! The hilly 10-mile race course was tough for me as usual and I had to walk part of the biggest hill on the course, but I was on my heaviest(slowest) bike so I wasn't too bummed. And when I say I 'walked' the big hill I mean I had to drag my paralyzed left foot up that damn hill. I was the last one to finish and I still wasn't bummed. Even all the runners beat me and I still wasn't bummed. I was just grateful that I was able to ride my bike to the finish. I may be slow but I don't care. I did it !!

 

I got to chat with author Tom Kizzia on the way back to the dock

After a short awards ceremony and a quick lunch it was time to take a van back to the dock, load the bike and us back on the boat, and do the morning trip in reverse. Again it was a nice smooth beautiful ride back across the Bay to the Homer Harbor and luckily the tide was back up and the ramp not as steep. My tired and happy self was able to push my bike back up to the car and drive us home. Whew, what a day! 

 

Happy to finish in Seldovia !!

I say I'm grateful to be able to still do these things, and I truly am, but I still get frustrated on a daily basis. I feel like I'm doing everything I'm supposed to be doing to treat this disease. I'm listening to the doctors even though they believe there's no cure. I'm taking the latest medication. I'm listening to the MS 'experts' who still don't know what causes MS. I'm listening to my gut instinct. We don't always agree with each other but we all want the same thing - to stop this disease from getting worse. But it continues to get worse and that's why I still get frustrated. But I've always felt like I'm right on the verge of a breakthrough and that's what keeps me going. I believe MS is curable. I believe that what I'm doing to treat this disease is the best approach for me. I'll continue to try anything and everything to treat this condition. I've nothing to lose and everything to gain. No matter how crazy it sounds I'll at least consider it and talk to my doctor about it. I've nothing to lose. I know there's a cure for MS and I'm ready for it. 

Pat Irwin

short video clip of the finish