Multiple Sclerosis is a condition plagued with physical symptoms that seem to come and go. As the disease progresses, the level of disability typically increases. Many symptoms like numbness, fatigue and cognitive difficulties are all but invisible to others. One thing for certain is, nothing for certain. Yesterday I climbed a ladder to fix the antenna struck by lightening, yet last week my leg was numb. Today I can walk the dog around the block, tomorrow it may be impossible. When I have a good day, I will push myself to get stuff done, because tomorrow might be that day I can’t seem to get off the couch. Unpredictable, unknown, unimaginable. Daily life with chronic illness can teach us a lot about perseverance and how to deal with life’s rollercoaster of uncertainty, including road blocks.
When I started my journey to help others with MS, I did not really know where it would take me, but I soon found an angle to help me start making a difference. Within a year, I had become a patient advocate for one of the therapies and began speaking at events around New England, earning some money and getting to talk to other patients. I worked hard to develop a good story that would be acceptable by the FDA and the regulatory departments of the pharmaceutical companies while still inspiring others to find something they love to do in life and to make it more important than their disease.
By year three I was sharing my story at two or three events a month and being asked to speak at even more events, some I could not even get to. I was traveling all across the country, strictly by motorcycle.
Four years into my quest I was forced to make a decision to keep my day job or go on the road speaking full time. The difference in compensation was about half, but I knew my ability to grow my audience and I had faith that I could market myself to speak at more events and make up the difference.
A month after quoting my real job, one of the companies stopped providing educational events for patients and my income from speaking was cut in half. I worked harder and was able to secure more events from the second company, becoming the most requested speaker in the country. I was also becoming a public figure in the motorcycle industry and many fellow riders and companies offered their support in my million mile quest. I started doing seminars at rallies and although there was no income, I was growing my follower base and gaining the support of major corporations like Yamaha, Bridgestone and Aerostich. I was getting most of my travel expenses and gear covered and I was able to squeak by with speaking income form the pharmaceutical company.
After 18 months of riding across the country full time, everything changed and my journey hit another giant roadblock. The drug company I had worked so hard to become the top requested speaker for had decided to change their travel policy. The legal department believed a patient riding a motorcycle to their events across the country was a liability for them and decided I could no longer ride my motorcycle to share my story about how I am riding my motorcycle for MS! After attending over 200 events for them without any issues, I was told I had to arrive by airplane and limos like everybody else. I fought the new travel rule as it only affected me and was discriminatory because of my choice of transportation. It was not a battle I would win, so I had no choice but to quit speaking for them. Not only did I lose my only paying speaking gig, I lost the 70,000 miles I was accumulating for MS each year riding to these events! No money and no miles certainly seemed like a dead end.
I did not give up.
I began looking for bigger motorcycle events and an MS charity that I could work with and perhaps inspire patients again by speaking at their educational events. MS Views and News began booking me for some events and offered to help with my expenses when I was fundraising on my bike. Yamaha also stepped up and started reimbursing me for expenses when I made appearances at national motorcycle events with them. By getting all my travel covered and getting paid to speak at a just a few live events, I could just about squeak by financially.
The International Motorcycle Show is the largest motorsports trade show provider in the United States. Each year, hundreds of thousands of attendees enjoy spending a day or a weekend exploring the latest and greatest models, buying accessories and checking out the latest gear from leaders in the motorcycle industry. By 2019, I had convinced the management of the International Motorcycle Shows to give me a shot providing a few travel seminars at their events where I was already attending as a guest of Yamaha.
My seminars worked out well, and the show paid me a decent income for an event I was already attending. I was humbly excited, realizing I was not only being recognized as an industry expert, but that I was getting paid real money for my advice and a chance to share my MS story to other motorcycle enthusiasts at the largest possible national venue. I felt like I had found a new source of income to replace what was lost from the pharmaceutical industry. One thing was certain, they would not tell me I couldn’t ride my motorcycle to the events!
When Covid hit, all the live MS patient events across the board were cancelled and I believe will be changed forever. People living with damaged immune systems are not willing to risk gathering; no matter how good the free chicken dinner is! For me to continue making enough money to stay riding would mean finding a new revenue stream or growing my trade show and rally presentations.
Last year, I received income by speaking at three of the International Motorcycle Shows and a few other small events. My seminars received a lot of positive feedback and so I offered to do more this year. My 2022 contract was going to include speaking at all eight shows across the entire country. I blocked off my calendar and began planning the cross country routes I would take to the events, traveling over 30,000 miles from from June through October. The income from the 8 shows would provide me just enough money to stay on the road the rest of the year and the paid travel would count towards my million mile goal.
Win, win. win!
Two weeks ago, I got punched with the biggest road block yet.
After 40 years, the International Motorcycle Show has pulled the plug on all trade show events; FOREVER.
While this news surprised everyone involved, it slapped me rather hard because it leaves me struggling for the first time with the possibility that my journey may have indeed reached the end of the road.