>We are heading off to visit Walt Disney World for what may be (my husband and I have quietly admitted to each other) our last family vacation. “Last” because my health is making travel more complicated and difficult.
When I was diagnosed almost 30 years ago, the doctor told me he thought they would have a cure for multiple sclerosis in five years. I have heard that more than once over the years. I recently watched (sorry,I can’t find the link) a broadcast of experts on repair of nervous system damage. The experts agreed that we may have ways to repair CNS damage in… say… five years. I have stopped believing projected timelines.
There an effort to create a website that would predict, based on the user’s answers,the course of their MS. Will it bother them once and then never again? Will it come and go with aggravating inconvenience? Will it result in significant disability? Will it move so fast they ought to get their affairs in order now?
I’ve been asking my friends with MS and other illnesses: “would you want to know?”
Most of them say no.
Almost everything I feared MS would do to me it has done, though not as fast as I imagined it would. I would not want my 20-year-old self to know in advance.
The good news is that living into it has not been as awful as I thought it would be.
I was bothered, in the doldrums of February, by not having anything to which to look forward. We scheduled this vacation and that changed my outlook.
But what can I do next year?
If I were an enlightened creature, I could live totally in the present and not need an imagined future.
It seems to me I have about a year to develop two skills:
- living in the present
- anticipating the simple
Next year, as the snows mount and the temperature drops, I may have to plan a tropical escape.I can go to the Tropics at the zoo and drink something poured around a paper umbrella. I can turn up the heat (and/or get some sunlamps) and watch a movie set in the tropics.The trick is to delight in it instead of wishing it were otherwise.
I can practice those skills every day.
But first: as soon as I hit the “publish post” button, I’m heading south.
>Hmmm, your "would you want to know?" question has given me pause. I'm relatively young and I feel like knowing would help me make smart decisions about what I'm choosing to do with my life. However, I can absolutely recognize that knowing could be a great burden.
I hope you have a wonderful vacation!
>Hello as you are vacating! I have met very few people who have had MS as long as we have had it?? I quit looking for a cure but the meds are much better now! It did change my life but??
>I see you posted this four days ago so don't know if you're still down here. I live in Florida and am enjoying the perfect few days we have just had. I hope you got to experience some of that.
>I can understand why you are somewhat jaded by hearing that MS will be cured in X number of years. I hope they are close though. i have been doing a lot of research lately and I am optimistic that a cure will come. Maybe not in 5 years, but hopefully soon! http://optimisticwithms.blogspot.com/
>We did have a wonderful vacation: warm and green, just what I needed. Thanks for your comments.
Kayla, the MS society frequently says "hope for the best; prepare for the worst." That seems like pretty good advice, as long as you don't get stuck on envisioning the worst.
Kim, nice to meet another veteran. I know there are some meds I'm using to address symptoms that definitely weren't around in "the old days".
Judy, the weather was indeed perfect.
CSA, I think I may be in the last generation affected with this level of disability and MS. What a thing to celebrate!
This disease has done to me everything I hoped it wouldn't as well. They tell me the question now is. "what are you gonna do about it"
Usually, I'm pretty present minded oriented. I even keep up a pretty up beat blog. But i must admit these last couple of days have been kind of challenging. Then, I came upon your blog one more time. I think it was just what I needed. Thanks!
I'm glad my words helped. That's one of the best things I can hear.
Your blog is upbeat and a gift. I enjoy reading it.
While some of my answers to "what are you gonna do about it" are physical (exercise, meds), most of them are mental: cultivating helpful attitudes and connecting with others.
Thanks for making a connection!