This year will mark 15 years since I was diagnosed with Multiple Sclerosis. 15 years that I have learned to accept, and once in a while even celebrate my life long illness. Sure, I have been lucky and my course of the disease has been manageable compared to others, but I can hardly remember what life was like before I began this journey. MS has driven me to take better care of myself, realize what is most important, and has given my life a real purpose. I am riding across the country on a motorcycle, raising awareness, funds and inspiring others to keep heading down their own paths to a fulfilling life. Living the dream, sort of.
I suppose the downside would be that I don’t appear to have any major symptoms or disability and even some MS patients have accused me of faking or that I must have been misdiagnosed.
I wish they were right. I often do pretend I don’t have any symptoms, mask my deficiencies and hide my short comings. After all, admitting I have an incurable progressive disease that has no cure is pretty scary and depressing. I am a badass biker and have a reputation to live up to.
Unfortunately, there is little doubt. I have multiple lesions in my brain, I have a neurological disease, and I struggle daily with some of my symptoms. Some are simple; tingling, burning and numb areas of my arms and legs. Some, I have been able to disguise by using technology such as my memory and multi-tasking issues. Some are a bit more personal and embarrassing and the hardest to be honest about. But as an advocate for MS and a public figure who lectures others to embrace their disease and learn to accept, and live proudly with their disabilities, I wouldn’t be real if I could not open up about the serious crap I deal with on a daily basis.
Crossing the country multiple times each year affords me to see lots of the country, including the most unique and obscure roadside attractions and famous tourist traps. If you have had the chance to travel south from New England to Florida, you were accosted by the 300 miles of billboards letting you know you had to stop at Pedro’s South of the Border. It’s a gift shop located just a click south of the North and South Carolina border. I’ve stopped many times and have the collectable mug to prove it.
If you travel across the top of the United States horizontally on Interstate 90, you have probably seen a couple billboards for Wall Drug. Famous for their 10 cent coffee and free water, the roadside signs advertising the mega historic mercantile stretch for over 500 miles! There is no option but to see it. Arriving in Wall, South Dakota, it becomes apparent the Drug store is the town. I stopped, drank the water and bought the mug, a few times.
In Missouri, there is quite the curious tourist trap, sucking in every adolescent 50 year old, curious elementary child and reluctant significant other. The dozens of roadside billboards are just begging you to stop and poke around. Plus, for 200 miles, the 50 foot ads proclaim, “The best fudge comes from…….
You see, this mega rest stop is called URANUS. Uranus Missouri. It’s a real place, no Sh#t! Google it. The parking lot has a missile launcher and a water tower proclaiming they are home to the Pirates, and the antique police car displays the slogan, “To protect and serve……..” There really is a fudge factory. You get the drift. I’m not ashamed to admit, I giggle like a 7 year old for 100 miles and stop every single time I am passing through. I have bought the fudge, a shirt, and a mug. The fudge might not be the best, but their slogan on the printed box is priceless, ask my granddaughter.
Recently, I had the occasion to visit this favorite pit stop of mine, but instead of the quick Facebook photo op to get 300 instant likes, I decided I would use this goofball location to shoot a video sharing the most intimate and embarrassing secret Multiple Sclerosis has delivered me. Bladder and bowel issues are common with neurological diseases and MS is no different. Riding a motorcycle daily with lots of protective gear makes bathroom stops a chore for normal people, and having a trick bladder and what I refer to as my uncontrollable A-hole, it has become a traveling nightmare for me. My brain tells me I need to relieve myself, and my brain is only about 50% correct. After I use the facilities, I often have an uncontrollable urge to go again. My bladder lies, cheats and embarrasses me at the most inopportune time. Additionally, my bladder and my bowels do not communicate or even share the same language so they really just have a mind of their own. I stand when I should have sat, I think I’m done when I am not and mostly I have no idea when, where or what will be expelled from my body. This results in extremely embarrassing near misses, and accidents. Lots of accidents.
It has taken me quite a while to share this, but If I am to be a public face to this disease and help others struggling with all the symptoms of Multiple Sclerosis, then I have to be willing to be completely truthful and open about the shitty aspects of this disease as well.
Please join me in my quest, “Chasing the Cure”.