I’ve dealt with Multiple Sclerosis for so long that it seems like a part of who I am. In case you don’t know, I’ve had it since 2000. In regards to this, blogger Robert Parker said, “This thing we call MS is just a collection of symptoms we suffer. All there really is..is us “. It’s taken me a long time to see things in that light. But this outlook frees me to live life to the best of my ability despite M.S.
So I picked up my collection of symptoms and headed to a free local concert featuring the queen herself, Mary J Blige! It was held in downtown New Orleans outside on the “Mighty Mississippi” riverfront. The event was hosted by Harrah’s Casino in an attempt to get people to sign up for their Total Rewards program. In other words, they were enticing you to spend money gambling! But they didn’t fool me. I knew what was up! I just went inside the casino briefly to use the restroom!
We were there about thee hours early to ensure a good spot. Tommy pulled out his lawn chair and I was comfy in my wheelchair. We settled in about three rows back and was enjoying the great weather while listening to the pre-show DJ. As the hour for the concert to start neared the crowd began too engulf me. Our three hour wait was in vein because I couldn’t see a thing. But more importantly, if Tommy and a nearby policeman wasn’t there, I probably would have had a slight panic attack! Luckily, the policeman saw what was happening and for safety reasons parted the crowd and ushered us right to the front of the stage!
Sometimes this wheelchair has its advantages. I actually got a perk because of my MS.
But to be honest, I wouldn’t think twice about trading the wheelchair in for some working fabulous legs and a brain to match!
[…] MS Perks […]
Don’t have MS but I have lupus and am in a wheelchair. I like reading about your experiences with chronic illness and enjoy your blog. Keep up the good work!
Sonya, Thanks for reading. I know viewing life from a wheelchair can be challenging no matter how you got there. I find it tends to change my perspective on many things. Thanks again.
Hi Nicole,
I just came across your blog here from a link off of a group I am on in Facebook..
I don’t have MS, but I do have Transverse Myelitis (TM). It’s a cousin of MS and quite a bit more rare…approx. 2 – 5 per million get TM.
Regardless though, I wouldn’t wish MS or TM on anyone…I know alot of folks that have MS and I know how debilitating it can be…
My TM initially paralyzed me from the waist down, and now, almost 4 years later, I walk (if you want to call it that..lol) with a cane, and have a lot of other residual symptoms….But I keep pushing forward. I will not let TM define me.
I’ve become very active in TM advocacy and have started my own Facebook group as well as a website..
I am sorry to hear that you are restricted to a wheelchair….I remember my first 6 months or better, when I was restricted to a wheelchair also….Although I know that doesn’t compare in the least to what you have to go through.
I just wanted to drop a note….I enjoyed your story about the MS Perks..and how the officer parted the crowd and moved you up to the front….That’s wonderful that he did that.
I can relate in a small degree…my wife and I attend an outdoor event here in town every year, and we do the same thing..we get there early to set up our chairs, and by the time early evening has rolled around, we are surrounded by other people and trying to get around is risky at best..
I’ve had to make trips to the bathroom on occasion while at these events, and as I get up and start staggering in the direction of where the bathrooms are, I can see in the faces of some of the people….that they can tell I am having trouble walking, even with my cane, and they usually make more than an effort to get out of the way and also help me through the group of people to get me to a more open area so that I can walk unrestricted….
I think to myself, that there are still some good folks out there and will go out of their way to help someone that is not able to get around as well as they can.
I appreciate what they do….
Anyway, just wanted to drop a note and thanks for a little smile with your story….
The best to you..
Kevin
Kevin
I have a dear friend with TM. Thanks for your sincere feedback and please know that I post every Tuesday. So I look forward to seeing your name again
Agree – being in a wheelchair does have its perks. Good parking spots, front row seating at events, no lines at Disney World for me AND my family. In some ways I know I’ve become spoiled. Oh, and did I mention the chance to stay at home and collect Disability? But I’d trade it all for the chance to go for a walk on the beach again.
Laurie, Oh, do I understand!
I agree with you Laurie, I use my cane and walker now. But what I wouldn’t give just to go to the mall and just walk around.
Nicole its so refreshing that you see things in that light… although I am not in a wheelchair today, I nor anyone else knows what the future holds, so my hat off to you.. I had always heard others say that seeing someone in a wheelchair or worse off than them was depressing. For me I find that to not be the case. I have heard and seen some of the more inspiring things from those that are faced with the most difficult of challenges. Your strength, courage and voice makes those of us who are not facing such challenges take a second look at ourselves, our abilities and the chance to make valuable contributions to our our families, our community, to society and most importantly ourselves!
Ella Jean
Wow, what a compliment! Like I always say I hope I can continue to be relevant. Thanks again!
Perks aside, I too “… wouldn’t think twice about trading the wheelchair in for some working fabulous legs and a brain to match!”
Judy,
Amen!
Nicole,
Yes, there are a few perks. I now have a special phone number to call for our baseball tickets and theater tickets.My husband is an a-list preferred on Southwest, when we fly together he would get a high boarding number and save me a seat for my much lower number. Now he tags onto my preferred boarding. And of course there are the good parking places, at least when they’re available.
But like you, best of all was last summer when I called a special handicap number, got through with only a 5 minute hold time, and got first row tickets to a Paul McCartney concert.
Mary Ellen
Mary Ellen,
Yayyyyy!
Front row seating, though it’s usually while my other friends have to sit in the regular seating away frrom me. That’s no fun. Free entrance to State Parks in my State of Md. anyway, and our own line at amusement parks, though I hate rides. Also in Md. Free parking meters. I’d rather have my legs any day.
Rebecca, I couldn’t have said it better. Thanks for reading!
A pair of WORKING LEGS! Now that’s a WISH! Good for you & your PERK! Sometimes there are advantages, but, alas, they are far & few inbetween. I hope you enjoyed the concert….it wasn’t to warm/sunny for you?
Kim, No actually it was quite comfortable.
You guys always find the best things to do! Mary J!!
Danielle,
We really do. I guess its because of all this time we have on our hands.:)
Its either get out or go nuts!
Tis surely a high price to pay for a premium spot. Ouch.
As for the still us just with sx, I’ve kept this posting from tejokid on MS world for years to trot out when ever I find myself wondering if I am still here under all these new sx even as I lose ability after ability after thought process. Tejokid said,
“Sometimes who we used to be wasn’t really “us” to begin with. Maybe it was not who we really were so much as a collection of roles we played. The hard worker, the soccer mom, the dad who was a rising star at his job, the great outfielder–all those things.
What we are now is “us” stripped of a lot of our roles. We define ourselves by what we do, not by what we are. When, suddenly, what we do isn’t possible any more, we’re left with something we don’t recognize because it’s been covered up by all the roles we play.
Maybe the question isn’t, “Who am I now?” but “Who am I?” We’re a go/do/purchase society–when we can’t go, do, or purchase things we want to be identified by (the Hummer, the newest iPod)–holy cow, what’s left? Just us. Unadorned, unembellished us.
It’s so hard to accept ourselves that way. Our culture is like those old west movie sets–a big facade on a building that’s built like a box behind. If a wind storm blows the facade down, we look at what remains and think–well, that’s not very interesting. Where’s the sign? The architecture? Where’s the fun in a boring, square structure?
In reality, what’s behind the facade is all that matters anyway. Denuded of our roles, we’re left with what we’ve always been. Who we were was often great (and often not)–who we are now is where all the good stuff came from to begin with.
We’ve lost a lot, but there it stands before us–the opportunity to remake ourselves.”