Sounds like such a stupid question. Me, the one living with Multiple Sclerosis for the last nearly 13 years, but almost every morning I wake up thinking, “Just give me a second. I’ll jump out of bed and get moving.” Silly right? But, my dreams play a small part in this deluded thought. Stupid dreams! I still walk in them, how deceptive and unfair is that?
Since I met Dan, I have never walked. But in my dreams, we often walk together into crazy, nonsensical adventure all of the time – hey, dreams don’t have to, and trust me, mine don’t, make sense. And I guess it’s good that I still walk in them because it reminds me what I’m fighting for. I believe, I HAVE to believe, I will walk again!
But am I really disabled?
You’d think, the wheelchair or the reality I can no longer roll over in bed, or get to toilet without help might tell me. But, un-uh. Still don’t see myself that way. As for those little blue wheelchair signs designating handicapped parking spots and restrooms, those are just signs. That’s not me!
This lack of acceptance, i.e. denial, might explain my constant frustration and frequent tearful outbursts when no one is looking. But those are mine to live with and deal with, and pity is certainly not acceptable or being asked for.
But again I ask, am I really disabled?
Recently, I was asked by the office of Student Disability Services to tell the Facilities Management staff at Central Michigan University how they could improve the handicap accessibility of their buildings. Guess that should’ve been a clue, but truly, it was the 2 women in wheelchairs I met that night that made me doubt the genuineness of my disability.
They were also providing the FM staff valuable feedback on building improvements. Only they were sharing stories of cruising their power chairs around campus, or through town, the daily difficulties of riding public transportation, or having to replace worn out wheels.
I couldn’t relate. After all, I ride in my van and can’t imagine driving my chair enough to wear out my wheel’s tread. Really, I’m only kind of disabled.
But when they started talking about getting stuck in the snow or having slippery wheels from said snow and about hard to open power assist doors. I started to relate.
Then the topic turned to the best handicap bathrooms on campus. And when we all knowingly exclaimed, “Library. Definitely the library.” It started to sink in. I was with my peers.
Sure my MS support group is full of people who understand this disease, but none of our regulars use a wheelchair. And Dan, he provides tremendous support and understanding. But it was in that room; with those women in wheelchairs that it began to be okay.
Yes, I really am disabled. And after not walking for the past 8 years, you are probably thinking, “Well duh! Finally.” But for the first time, I felt comfortable enough to say, “I am disabled.” (of course with the caveat, ”I make disabled look good!”)
And maybe now, I’ll even be okay with photos of me in my chair. Um … probably not. Call me vain, but I’m thinking I’ll still probably crop it out. 🙂
Oh, Jennifer. You soooooo “make disabled look good!” and it was truly a pleasure to share conversation and insight with you the other night. You always have such great thoughts you share!
Jennifer, my feeling is that as long as I can dream or wake up thinking I can walk normally,it means that my brain has not forgotten how to walk and therefore maintains the potential for full restoration. Denial? As my late mother-in-law said, surely you’re not talking about me; you must be talking about that river in Egypt.
Judy
Jennifer, I lived in Monticello as a kid with Dan. I understand why your words moved your loving husband to tears. You’ve also touched me, someone you’ve never met, very deeply.
Thank you for this. I will think of this blog and smile a little bigger every time I wait for my friend to hide her cane before I take her picture. 😉
I also am now labeled “disabled” but can still walk. I tell everyone that the Dr. has me off work right now. Makes me think I am probably in denial..Does your support group still meet on Sabbath?
I walk in my dreams too. I think that is great and shows optimism and hope and what would life be like without that??? I do want to make one suggestion. You are one of the most fully functioning people I know. So let’s change the wording from “I am disabled” to “I am a person with a disability”.
I wrote about this in a piece titled “Watch Your Language”. I think our words matter. I hope you do too. (http://mgerber.blogspot.com/2009/05/watch-your-language.html )
As much as I try, I know I will never fully own this disease and how it affects me but reading from your perspective gives me great inspiration. Thank You, Courtney
I am with Courtney, I don’t know if I will ever fully buy into this whole MS and disability thing even though, in fact, I have MS and am disabled. So glad to have others who understand
Wow, I’ve been dx’ed with RRMS for almost 2 years now (lived in denial that anything was wrong for years) and I dream that I am running through a field. I can still walk, albeit kinda roughly, but I dream about running.
Great blog, Jennifer. I have enjoyed knowing you for a couple of years and have never once considered you disabled. You have so much spirit and drive in your heart.
You WILL walk again, I know it. I believe that dreams are more than just unconscious thoughts, they really mean something. Your brain, your mind, your whole body, knows that you will walk again. Never give up hope.
Jennifer,
I lived in denial until I could no longer deny. I’ve had MS for 16 years and I still see myself walking in dreams! I have learned to adjust to my circumstances and I have found joy, for the most part. There are moments when the tears still come. You’re a great writer, thank you for sharing.
Linda