I was interviewed earlier today by a health marketing company. Don’t look for a magazine article about me, though. These folks are conducting research on primary progressive multiple sclerosis (PPMS) by speaking with patients. The marketing company paid me for my time with a $75 gift certificate from Amazon.com. I must remember to buy something fun with that money, not just put it in the pot and have it pay for my next order of printer ink.
The interviewer asked lots of questions, but the only one that stumped me was, “What would you say has been the hardest thing about having MS?” So many good choices – which one to pick? I fumbled and stumbled and didn’t give a very good answer. But after thinking about it for a while, I know what I should have said.
For me, the hardest thing about having MS is that my future has been stolen. I received my diagnosis four days after my thirty-eighth birthday. My life was pretty sweet at the time. I had an amazing wife, two beautiful children, a career on the upswing, all the man-toys I wanted, and so much more. Even with that success, I felt that my best days were still ahead of me. I no longer feel that way.
Quick disclaimer – I know this isn’t terminal cancer, ALS, or Alzheimer’s. Those diseases don’t only steal your future, they stomp all over it. But PPMS is no lightweight.
I always had big plans of where I wanted to be in five, ten, or twenty years. I wasn’t naïve. I understood that these plans would probably never play out exactly the way I imagined them, but my vision for the future was optimistic, and rightfully so. Chasing these dreams was a big part of what motivated me to get out of bed each day.
I still plan for the future, but only in terms of months, because I can’t imagine what life will be like years from now. How much longer will I function like I currently do? Will I always be able to live at home? Will I remain a contented person forever? I can’t know. I mostly try not to think about it.
Being the glass-half-full kind of guy that I am, the fact that MS has stolen my future does have one benefit. I now live more in the present than I used to, one day at a time and all that jazz. This is a good thing.
Today is full of challenges, but I’m meeting them. It’s tomorrow that scares me.
What’s the hardest thing you’ve had to deal with because of MS (or some other challenge)? Do you feel MS (or anything else) has stolen your future?
Note: If you have PPMS and you would like to take part in this research, let me know.