Sunday, June 28, 2009

Letter to caregivers.

Obviously MS changes your life. The diagnosis shakes you to your core and the disease itself can be kind or cruel depending on it's own perspective. MS, for me, is something that has a life of it's own. No matter what I do, what treatments I take, MS is going to do to my body what MS is going to do. Period.

As MS has attacked my body I have lost more and more of some of the physical abilities I always took for granted. Walking for one, finding words for another. I, like most MSers learned the hard way what my limitations are, and what the consequences I have to deal with, often for days, if I ignore them and push on.

However, one of the things I absolutely refuse to allow MS to take away from me is MY right to choose and make decisions for myself. I'm the one who chooses whether or not to push a limitation, I'm the one who decides what I can and can't do. I may not have much left, but I refuse to allow someone else to make those kinds of decisions for me. The day I start allowing that I may as well crawl into bed and stay there.

I know that when a complete stranger looks at me in my wheelchair, they rarely see ME, they see a handicapped person in a chair. I get that. I understand that. However, I DON'T expect my close friends and family to see a handicapped person when they see me in the chair. I expect them to see ME, KIMBERLY. Not the chair, not a handicapped person. I expect them to treat me the same. Don't make decisions which lead to me being excluded from activities or gatherings because you "think" it may be "too much" for me. That's MY decision to make, and if I decide to push a limit in order to participate in an activity then that's MY decision.

I understand that those who love me want to protect me. They make the decisions "for me" out of love. I appreciate that and truly understand. However, what you have to understand is making decisions for myself is really the ONLY thing I have left. If you take that from me you have reduced me to nothing. It's hurtful and makes me feel like I'm no longer important or part of the family. How could I feel otherwise when there is a family gathering to celebrate a birthday and I wasn't invited because of stairs? Then, I find out about the birthday party through a niece on Facebook? Again, I truly understand the decision was made to protect me, but do you have any idea how hurtful that was? I wouldn't have missed my brothers birthday party for the world. I doesn't matter how many stairs I would have had to climb. I would have done it.

I hope this brings understanding to the friends, family and caregivers not only of MSers but anyone who has physical limitations. We're still US inside. We may not be able to walk or tolerate heat. We may stumble and fall, talk funny now and then and tire easily. However, we still think and feel, love, get angry, cry and wish with every fiber of our being we didn't have MS. SO please, for as long as we have our minds, let US decide for ourselves what we can and can't do.


Herrad said...

Hi Kimberly,

I am 100 % in agreement with you.



Anonymous said...

Hi Kimberly:

Thanks for putting into words what alot of us want to say too. Anne

MS. ME said...

Very well put! Is it bad if I wanted to stand up and stomp my foot when I read this?!?! Great!!

By the way - drop by and take a bow at my blog when you get a chance!!

Kayz said...

True, true! I'm lovin this blog! Good to find fellow FB/MSers. =)