I have been one of those people most of my life and while in many ways, MS has helped me to slow down, in other ways I feel more pressure than ever to keep moving forward, often at an unrealistic pace.
Last week, there was a segment on CBS Sunday Morning about a woman in her late 50’s who had been living with MS for over a decade. Her passion was climbing mountains. Literally. Like Mt. Kilimanjaro or crazy big mountains like that. She had set a goal for herself to summit a certain number in a set time period. What struck me was during her interview she said something to the effect of, “I want to do as much as I physically can before my disease progresses further and makes it impossible. I will climb as many mountains as I can before that day comes.”
There is a quote that pops up in numerous books on MS and on websites: “Hope for the best. Prepare for the worst.” After reading this phrase a zillion times I finally realized I had rarely processed the second sentence. I had been too busy hoping for the best! This fellow MSer on my TV seemed to be doing both. She was pushing her body to its physical limits while she still had a choice in the matter…before MS took it from her in bits and pieces, making things like mountain climbing next to impossible.
Suddenly I felt this incredible weight in knowing that I, too, could potentially have a much shortened “quality of life”. Sure, I could also be hit by a bus tomorrow and obviously we cannot live our lives paralyzed by fear of the unknown future.
On the other hand, there is a word I have had a hard time mentally digesting: degenerative. I think overall I have handled my diagnosis better than most and I digest other words pretty darn well. For example,
Chronic: means I don’t ever get a vacation from MS. It is with me all the time.
Incurable: I get to have this stupid thing until some brilliant scientist somewhere figures out how to make it go poof!
Neurological: affects my brain, and in turn my central nervous system, so basically everything (except my striking good looks)
But, Degenerative: something which worsens over time…
And yet there are so many MSers out there who have been on one of these fabulous drugs and have been relapse free for years! YEARS! That is awesome. Then there are MSers on the exact same drugs who have relapse after relapse and get progressively worse and worse. And no one knows why that is and hence the frustration of scientists trying to cure such a tricky disease.
So what now? Do I finally update and complete that life list of mine trying to check everything off at lightening speed in hopes of outrunning MS? Sounds difficult…and exhausting. But in 10, 20, 30 years I don’t want to look back and say “If only…”
Sometimes it feels like such an effort just to get through any given day. The thought of taking on something as mammoth as mountain climbing (or whatever else is on your life list)…well, it just feels impossible. Where do you begin? HOW do you begin? Which goal do you choose to complete first? Sing the national anthem at a sporting event? (been on my list since 1991) Swim with dolphins? (been on the list at least that long) Own my own home? (Check!) Own my own horse? (I think this was one of those When-I-Win-The-Lottery goals…) Travel to Europe? (Certainly not with the current exchange rates!)
And the list goes on and on. It doesn’t even include all those everyday things in life that I want to do like entertain in our new home and throw all sorts of parties: tea parties and cocktail parties and sing-a-long parties and wacky theme parties and Halloween parties. I want to learn to be a better cook and how to make a perfect dirty martini like my husband can. I want to FINALLY get my house done and in order and furnished. I want to do all sorts of traveling. I want to be a better calligrapher and a better singer and teacher and choreographer. I want to figure out what I want to be when I grow up and make new friends and visit with old ones. I want to go to comedy clubs and go to Broadway shows and watch improv and visit art museums. I want to do all these things andso much more.
What if my vision continues to get worse and I lose my sight completely? Should I visit all those museums now so that i can at least see parts of the paintings??
Or if I knew I would start having trouble walking, should I do all that traveling now, while I don't have to worry about handicapped accessibility?
If only there was a crystal ball so that we could all take a peek and know what our future holds.
In the meantime I guess we just do the best we can to Live in the Present and enjoy it as much as possible.