As some of you may be aware, I avoided the MS community entirely for a long time. I kept myself healthy and in shape and I had no issues. Hell, I managed to go through an entire marriage and show no signs of MS. My ex-wife has no idea what it even looks like fro me to have MS because she never saw it. It definitely slowed me down a bit, but so did age. I no longer ran with the ease that I used to, but I was still reasonably fast. Definitely well above average as a runner.
That all changed about 18 months ago. Things got really bad. Part of at least two back to back attacks with the first one going entirely untreated by the neurologist I had at the time. It led me through a pretty interesting journey. From medical guinea pig, to being the potential proof of what’s possible for MS patients, to loads of chemotherapy and a stem cell transplant and then back into the arms of the very MS community that I had shunned for so long in times of good health.
Don’t think I was like this super dedicated fanatic in my healthy times. I wasn’t. I drank way too much. I hated taking a load of vitamins. My personal relationships were crap. But running was my escape and probably what kept me healthy for that long. I was ultimately very fortunate. And that’s it.
When things got really bad for me 18 months ago, I was given a social worker and we reached out to all kinds of organizations to help cover the costs that were mounting. Things like what I called the stripper pole with a penis which helped me out of bed every morning. The assistance bars for the tub. The elevated toilet seat. The wedge for sleeping upright. So I wouldn’t puke while I was sleeping and then choke to death. Those things cost money.
And then I went through the transplant. And that meant more costs mounted. Really expensive drugs that my work coverage only seemed to put a dent in. That outside organizations wouldn’t touch with a ten foot pole. Those costs kept mounting and all I was doing was trying to recover. And then there’s chemo brain and the resulting depression. And when you have as much chemo as is needed for a transplant, you’re going to get chemo brain. And you really do need help. I was very fortunate in that I have friends who work in fields that I would have otherwise paid for.
All of this adds up. And the MS organizations don’t really do a lot to help you out. They’re focused on research and drugs costs and other issues. They don’t really seem to have a lot of time to help you out. And that’s unfortunate.
A couple months ago, after I ran the 10K at Ottawa Race Weekend just to tell my doctors to eff off just a bit, a friend asked me kind of jokingly to run the PEI Marathon with her. I thought about it. Would I have the time to train for this? Could I survive a marathon? I’ve never run a marathon. I’m a transplant patient. I have no immune system. Can I turn this into something? After a day or so of thinking about it, I agreed. I think Ashley was super surprised that I would agree because not only did it lock me in with all of my medical issues, but if I agreed, it was locking HER into running. I’ll be honest about it, I like when I get to see other people suffer, so locking her into doing it when she backed out last year seemed like an awesome idea.
Since then, I’ve been trying to raise money, not only for myself to get out there and do the race, but also for MS. And I don’t want to raise a little bit of money. I want to raise a lot. Because I don’t want to hand money to an MS organization and watch it go to overhead costs and CEO salaries. I want to be able to fund PEOPLE. The ones that feel hopeless because they have MS and nobody really helps them out. Nobody ever understands. It can be very lonely having MS. But the MS community can change that. And I have a plan to do it.
And here’s the plan. Every bit of money I’ve raised will be going into a fund. That money will be invested safely. All gains from the investment of that money will be split 60/40. Most of you will know that large organizations tend to work on a 90/10 split. For them, 90 percent of the money they raise goes to cost of operation. About 10 percent goes to their actual cause. In the case of the fund I’m setting up, 60% of all gains on the money will go out to MS and stem cell transplant patients. 40% will go to continued growth/any overhead that does occur. Hopefully, as the fund grows, I get to shift that number. to 70/30 to 80/20.
The fund i’m creating doesn’t want to run high overhead. I don’t want to rent physical space. I don’t want to spend obscene amounts of money on advertising. And unless the fund is absolutely rolling in money and nobody with MS needs help, I don’t want to drop money on research for drug companies. The plan is to help people. The people that get treated like guinea pigs. The people who get to suffer everything that MS brings. To help them out.
And I don’t want to make it hard. I don’t want to create some crappy MS bureaucracy. I want to develop a system that will work for MS patients when they need it. I want to be accessible for THEM. Because it’s hard to fill out forms when your hands and arms don’t work. But it’s easy to reach out a hand and help when yours are fine.
In order to get the fund really moving and producing money for the people that deserve it, I’m going to need some help. I’m not made of money unfortunately. Or I wouldn’t ask. So to help me out. To help me help the people that need it and deserve it, please donate to my Go Fund Me page. I’m going to make this happen. And the process of setting everything up starts next week.