If there’s one part of ALS that is really quite fun, it’s the wheelchair. I’ve always enjoyed going places, getting out and seeing new things, and going fast! For those who really know me, I had a bit of a lead foot in a car. Unfortunately, I’ve had my share of speeding tickets. Thankfully they don’t ticket people in wheelchairs! If they did, I would probably be the first to have one! I definitely push the limit on walking speed (my wheelchair maxes out at 7.5 mph – that’s an 8 minute mile for any runners out there). It’s fun if I can maintain the pressure on my joystick, but unfortunately it’s becoming harder every day to control. Eventually I will control my wheelchair with my eyes, which will slow me down a lot.
I can honestly say that I have had a lot of fun with my wheelchair. It provides a great sense of liberty and independence. But there has also been a few unwanted adventures also. When I first started using a wheelchair about 18 months after my diagnosis, it gave me a HUGE sense of freedom! I could still walk at the time, but I was a fall risk. My biggest problem was losing control of my neck muscles, so I couldn’t hold my head up. I’ve always been told I have a big head, so this proved it. Seriously though, I probably would have walked longer if I could’ve held up my head.
About 2 months after I started using a wheelchair, we took a trip to Idaho to visit family. While in Idaho Falls, we went for a walk around the river. I frequently had a child on my lap and sometimes two. I became a real pack horse! Anyway, we were just past halfway around the river, and naturally, just past the restrooms when my 5 year old daughter said she needed to go to the bathroom. I already had my infant girl in my lap, but we decided to have her sister get on my lap also so I could race her back to the restrooms. At this point I still had excellent control of my wheelchair. We arrived at the bathrooms, but my little girl was in such a hurry to go potty that she tried to hop off my wheelchair before I was ready and before I had come to a complete stop. As she hopped off, her blanket got snagged on my joystick, which caused an immediate 90 degree turn and a full speed departure off the sidewalk over a 10+ foot drop on the banks of the Snake River. Fortunately, my arms were weak enough by this point, so as we went over the edge I was unable to hold on to my infant daughter, and she fell off my lap and into some bushes. As I continued falling with the wheelchair, I miraculously fell out in a heap between two volcanic boulders that were sticking out of the ground. My 400 pound wheelchair continued on its way rolling 3 more times before coming to a stop inches from the edge of the river.
Well, if you don’t believe in guardian angels, let me tell you they are real. Within seconds an army of people came to our rescue. My little girl was picked up out of the bushes and found to be unharmed except for a few tiny scratches. I was a bit more battered and bruised, but nothing was broken and I didn't hit my head or lose consciousness. Two people helped me up and then back up the hill. It took 6 people to rescue my wheelchair and to haul it back up to the sidewalk. My 5 year old was witness to the whole thing and lost the urge to use the restroom. We gathered ourselves back together in the wheelchair that only suffered a broken armrest, let the 5 year old finally use the restroom, assured everyone who helped us that we were okay, and then continued our journey around the river to catch up to the rest of the family.
We were witnesses that day to a modern miracle. If my wheelchair and myself totaling 600 pounds combined weight had landed on my infant daughter, it would have crushed her. If I had been wearing my seatbelt, I would have been secured to the wheelchair and would have suffered a severe head injury or worse as the wheelchair went end over end several times. But miraculously, none of us were injured more than a few scrapes and bruises. We truly felt blessed!
I’ve had plenty of great experiences in my wheelchair! Shortly after the above accident, we strapped my wheelchair on the back of a 32 ft motorhome and drove across America. In 5 weeks, we traveled 9,161 miles, visited 33 states, and saw some of the most amazing sights in this beautiful country. The next year we visited 3 more states over 3 weeks. Except for a minor incident at the Grand Canyon parking lot where I went off a curb and tipped over my wheelchair after star gazing, we had an amazing time without any major accident. The wheelchair has become my new legs, and without it, I would be confined to a chair or bed by this point. It truly is life-changing!!
I've included some videos of the adventures!
#ALSAwarenessMonth #ALS #NeedForSpeed #HopeIsNeverLost
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