Mardi Gras Archive

23

Parade Days

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Last week I was in the hospital for two days after having an adverse reaction to my latest prescription. The symptoms were so bad that the doctors first thought I had a stroke. It wasn’t until all of my test came back negative that we linked my sudden change in health to the new medication.

Before this happened, I was excited because it is Carnival time. I have been going to Mardi Gras parades in New Orleans, Louisiana for over 30 years. But this year just wasn’t the same. I can’t put my finger on it but I didn’t have as much fun as usual. My guess is, since I really hate being in a wheelchair, being at a parade in a wheelchair just wasn’t enjoyable. I don’t like when people stand in front of me blocking my view. It’s funny because everyone is nice until the floats start throwing trinkets. Then it’s every man for himself. Also, bladder issues can cause a real headache especially since the portable restrooms provided by the city are not wheelchair accessible.

But my best guess at the source of my newfound melancholy feelings toward attending parades is the fact that I have been extremely tired lately. I am so weak these days that it’s hard to enjoy myself at events, especially ones that take so much energy. Parade days are all-day affairs that can last 5 hours or more. And there are usually multiple parades. The recent one I attended was actually three different parades. This is something I did all the time, but nowadays it’s just too much for me. And being only one day removed from the hospital didn’t help either.

After I made it home from the parades, I decided I would not attend anymore because they are just too taxing on me.

Moments later, following my declaration, I saw a picture posted by Steve Gleason* at a Mardi Gras parade. He helped me put my overreaction into perspective. So now I have decided that I won’t totally stop attending Mardi Gras parades. I’ll just adjust how long and how many I attend.

Happy Mardi Gras Everyone!

*(Steve Gleason is a former New Orleans Saints football player who is now battling ALS – Lou Gehrig’s disease)

Gleason

Hospital

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17

Potty Training

somewhat stupid

“…I talked about “butting heads,” and how me being in a state of easily-engaged contention was causing some of my energetic woes. MS is all about “againstness,” the immune system chewing on things it doesn’t need to chew on, the nervous system trying to reroute itself around the damage–there’s nothing that isn’t againstness in the whole process. The last thing I need to bring to the process is butting heads with {bathroom patrons }.”

From the Gift of MS http://giftsofms.blogspot.com/ by Robert Parker

I don’t write much about the mechanics of MS. I figure if you were interested in more you would leave a comment telling me so. Instead, I tell you how it affects me. In short, besides the wheelchair, I have serious bladder issues. In my household it is the boss of everything. And then it has the nerve to be contrary.

I will literally break my neck to get to the bathroom, sweating, and NOTHING COMES OUT! This is the damn immune system chewing up on stuff it has no business. Then in other cases it gives me less than adequate warning. If you get my drift!

I readily admit that the handicap bathroom stalls are nice and roomy. You can sit your bags down (If you let them touch the floor) or you can possibly leave them on the nice hook on the back of the door, which in most cases is nice and low so even your child can hang them up for you. Wait. Speaking of your child ….he can come in the stall too! Not only can you keep your eyes on him, but also he can hang your bags AND use the potty too! Now, you can’t get much better than that? Right?

WRONG! Only because someone in a wheelchair may be waiting right outside to get in the only stall they can. I don’t mean to sound crude. I just want to shed light on this because the concept is so often overlooked. I sympathize when the other stalls are taken. I don’t expect you to still avoid the handicap stall that would be too much to ask! I understand you don’t have to have a handicap license to use our stall. (That’s an idea though!}

I know too that everybody who is “handicap” doesn’t look a certain way. Remember, for years I lived ‘in the closet,” with MS. I don’t scrutinize the handicap parking spaces! I just want the public to be mindful of others. That includes a lot more than just those in wheelchairs! But that’s slightly off topic.

I have a prime example for you to ponder. I rolled into a mall restroom and someone, was just leaving the handicap stall. Well, as I sat there awaiting my take off, someone came in from the mall, walked besides me and went right into the now empty handicap stall! As if I wasn’t even there! Why didn’t I say something? I asked myself the same thing. When she came out and saw me sitting there her embarrassment was palpable. She apologized and I calmly took my turn.

I probably wouldn’t be so timid the next time as I have had several accidents! It seems the closer I get to the stall the worse the urge gets. I talk about acceptance all the time, I even wore Depends to that Mardi Gras parade earlier this month, but darn, I just can’t make myself do it on a daily basis.

Besides, that’s expensive!!!!

********************************************************************************
The girl you just called fat? She’s been starving herself & has lost over 30lbs.
The boy you just called stupid? He has a learning disability & studies over 4hrs a night.
The girl you just called ugly? She spends hours putting make-up on hoping people will like her.
The boy you just tripped? He’s abused enough at home.
Every person has a story. Accept differences. Show kindness.
From Simply Susan at
http://heysus74.blogspot.com/

Donde esta el bano? ( I can’t do the correct punctuation. )

20

Dig it in

KEEP MOVING FORWARD


 

My last post was angry and sassy. I have to be mindful of the energy I’m releasing into the world. That being said I did have a nice time at the parade and would do it all over again!

What I want to touch upon today is …shit! I’ve been searching for a progressive outlook towards Multiple Sclerosis that will transport me to the next level of acceptance. I think I’ve found it!

In times of pure angst, we cry “Why, Why, Why”? I’ve learned from a seminar that ”why” is not the question or the point at all! Multiple Sclerosis is here to stay for me. The question is: What am I going to do about it? You can find the positive in any disaster if you dig deep. This seems hard to grasp, right? Let me explain.

Earlier, I complained MS was infringing on the core of me. The truth is MS is only a PART of me. It’s not the whole of me! The thing I can do about it is harness the other 75% of me, the portion that is unaffected by MS. The part that adores learning and speaking Spanish (I’ve been studying it for 10 years!) The fraction that likes helping others, learning, reading, writing, and making them laugh! (I briefly volunteered in the food bank at my church St Camillus Catholic Church of Silver Spring, Maryland). The piece that likes exercising. (Though lately with modifications.) If I didn’t have this opportunity to make the most of these benevolent aspects of me untouched by MS….I wouldn’t. Or at least it wouldn’t be the focus of my life. Through my writing I can help others going through their shit. (Again, I got this from a monk.) AND drum roll please…There lies the positive part of having Multiple Sclerosis! I never viewed it in this manner. What about you?

A dear friend told me, ”I have Graves Disease and your webpage has completely changed my way of thinking regarding my disease. I’ll be the first to buy your book! One of my girlfriend’s sisters has MS and I have already forwarded your webpage to her. I love the site and will constantly watch for updates.”
It just doesn’t get too much better than that!

MS = Speed Bumps for Teri Garr

When you walk into shit (your MS) never wash it off your shoe. Instead, bring it home and walk out back and dig it in your garden.

 

Thus, MS (your shit) becomes fertilizer for something to come!

 

Unspeakable heartache can become the fertilizer for something great. It’s happened. So, what are you going to do about it? The earthquakes, the Tsunamis, the floods, the wildfires, the tornadoes, the hurricanes… all horrendous. What are we going to do about it? I know easy to question, hardier to live. But what’s the alternative?

MS is not the whole of me. I was so busy complaining about it infringing on my life, I forgot the lesson. The question remains. What am I going to do about it? I can exercise the essence of me. I can incorporate it into my daily routine. I can take a Spanish class. I love exercising. I can modify. I can take my meds. I can reach out to those who need a smile. I can volunteer.

I can pedal with my arms or Legs on good days!

Multiple Sclerosis is my fertilizer. What’s yours?

But more importantly, what are you going to do about it?

Next year as you are devouring your delicious fruit you can remember just what you are eating!!! (I got this from a monk!)     In using the profanity the monk and I just want to shock you and really drive home the point in a way you are less likely to forget!

Que le vaya bien!
 

4

Muse (Mardi Gras) 2011

The Muse 2011 Mardi Gras Parade in New Orleans

The longer I have this (MS), the more it intrudes on me.  In the beginning, it was convenient and easy to deny its existence. Now, it’s hard to find the line where it stops and Nicole starts! It seems as if  I’m constantly being required to yield to it!

It’s the cloud that overshadows my life, constantly threatening to reek havoc on whatever I plan.

It’s so big now I have to remind myself to exercise who I am.  For that reason, I went to a parade in NEW ORLEANS, in my wheelchair, with my damn MS. I managed to dismiss the awkward stares. I tolerated New Orleans’ bumpy roads. I had extra “protection” if need be. I was ready!

I admit.  There is something strange about me asking you to clear the path for my wheelchair. Especially amidst the passing parade! But we did! And they jumped to attention and moved. But I must give you your due respect. I understand many of you have literally camped out for those prime spots on Saint Charles Avenue. Honestly, I would be a bit grumpy too!

In order to position themselves in key spots to catch beads, they will be there hours before the parade.

I’m not the first seemingly young looking person to be in a wheelchair. Plus, It’s just MS. It’s just MS. At its, worst it’s often a HUGE hassle. My cross to bear. My slow motion stroke. My Inconvenient Truth.

Also, I recently started a new MS medication. It always brings on a medley of emotions. For one, another ounce of hope that maybe this one will be “the one.” Then, on the other hand, you don’t want to get too excited, because the let down is sometimes worst than the disease. In turn, I try to stay as objective as possible, but mix in a little Christian faith buffered with a tad of Buddhist acceptance of the present moment.

My cloud and I went to a birthday paint party. It’s literally a party where you and friends are instructed on how to paint a picture chosen by the birthday girl or boy.  The instructor said this was her first time holding a class so large AND for a 36 year old adult!  Apparently, my girlfriend knew this. It was her intent to have us painting, sipping wine and having a merry little affair!

And we did!

Slowly, I’m starting to see the line.