Here’s what I just wrote for the National MS Society… It was an adaptation from an eariler article that I’ll also post:)
Thanks for being patient with me, sorry I was out of it. I’m actually feeling a LOT better now!!! By that I mean back to normal and trying not to lose it whenever a sad song comes on, but that’s a major improvement
working title: Keep Going!
I’ve had MS for about 6 years now. While my doctors seem to think I’ve had it for much longer, until 6 years ago I was relapse free and blissfully unaware of my situation. It still feels odd, even wrong to say that I have MS, but I think that is a good thing: when it feels/sounds normal to say, then I might be in a bad situation. For now, things are actually pretty great. I’ve only had 5 relapses in 6 years… not too bad for a relapsing-remitting patient.
Since contracting MS I’ve gotten a lot of things crossed off of my life’s to-do list: I’ve been published, taught at the college level, learned a new sport (rock climbing, I highly suggest it!!), done a few (very long) charity walks, sold my work, moved to Germany and a few months ago, I got my black-belt in the martial art I’ve been training in for the past 10 years. I’m not 30 yet.
And I’m not planning on stopping, either. I still need to get my MFA and go further in the Martial Arts, and I still want to learn Japanese and Italian… I’ll think of more after I’ve gotten those out of the way. They’re my plans for the next five years.
I’m writing this here, for everyone reading it, because it’s important to me. It’s important to US: we need to keep moving. ‘We’ being the people that have MS and too often feel like the best we can do is to ‘just survive’ or ‘deal with it’.
Yes, I’m one of the lucky R+R ones that goes back to pretty normal after a month-long relapse. But that doesn’t mean I don’t know what progression in MS looks like: my mother had it, died from complications and I will never forget her state.
Because of her illness, every day I feel absolutely lucky to be able to walk. To be able to brush my hair on my own. To be able to shave my legs whenever I want, walk unassisted, have a job that requires standing. These are things that people have had to do for me when I’ve relapsed… things that most people take for granted. They are the things that those of us with a disease like MS learn to really treasure, after we’ve had a brush with NOT being able to do them alone.
We know what it is to have our body ‘not work’. We know what it is to need help. We know what it is to have to leave our pride somewhere along the road as we move forward with the people that love us.
I love my marital art. I love climbing. I will do them until I can’t anymore. These are the things that ‘we’ aren’t supposed to be able to do. The things that ‘we’ should be careful while doing.
To these things, I say, “screw that”.
I know my body, you know yours and we know when enough is enough. While most of us will have to learn eventually what ‘too much’ feels like (in my case, that’s a relapse), it’s up to us to find that line so we know when we should stop. In order to do this, we need to push ourselves to the limit. We need to be honest with ourselves. This is exactly what we’d be doing if we didn’t have an inconvenient disease like MS telling us that too much is, really, too much. Fine. While everyone without MS (or other diseases) is able to just do things until they decide they don’t want to (or vomit, whatever), we are the ones that truly, really, know our limits. We know where the line is. If we don’t know NOW, give us time.
Maybe my line is different than yours. Maybe your line is walking for a few hours. Maybe someone else’s line is running a marathon. My line is doing anything for too long in the heat. The point of this… all of the writing, the research, the 50k walks for more funding and education… it’s to keep moving.
My MA leaders are always telling me to ‘keep going!’
They don’t realize how correct they are or what that really means for me. Whatever the limit is for each of us, we can move it. We can change it. We can make it further, harder, whatever. The point is to just keep going. Because when we DO finally decide to stop before we really physically need to, that will be the point when we stop having a disease, and the point where a disease starts having US.
Do what you can; however much it is. Do it for your kids, your family and friends. But most importantly, do it for you. Because none of us has anything more than a disease. A silly, unpredictable and overall just inconvenient disease. Most importantly, a non-fatal disease.
We’re not dead until we die and only dead fish swim with the tide.
thanks for reading:)