intro Archive

17

THE BEFORE

My Car

I drove everywhere. Fast.

I definitely see two Nicole’s. To be clear, I mean there is a pre-MS version of me and a post-MS version of me. I’m aware that sounds slightly Schizophrenic, but that’s one of the ways I view my life. (I’m going to touch upon this the next time I see my head therapist.)

I led a completely different life before I had MS. There’s a definite before and after distinction. Similar to the before the storm (Katrina) and after the storm New Orleanians speak of. The entire city changed structurally and mentally. I can even once again reference 9/11. Now, that one I know you can relate to. Some say things will never be same, at least not in our airports!

As far as before MS an after MS, someone online told me they didn’t share the same view. She said she sees it all as her life. I snubbed her opinion and figured she must still be able to walk! I mean I cannot stress enough how much MS has snatched from me. In turn, I don’t have the luxury of WALKING, WORKING or DRIVING (W.W.D.). So I refer to the time period when I could do those things as THE BEFORE.

I see now that right along with W.W.D. comes a subtle air of independence and worth. That is what I have lost. That loss hits hard. It sent me to the head therapist! But also it jump started me to start writing and this blog was born.

Okay, my other hobby is reading. I understand that these W.W.D. things may have accounted for my self-sufficiency, but the core of who I am remains untouched. I just have to keep reminding myself.

As for my before and after mentality maybe its making acceptance of what is…harder.

I’m sure Dr. Phil would ask me, “How’s that working for you?”

Dr. Phil I may need help.

“How’s that working for you?”

23

Change Yourself

The Blogashere

I read in the blogosphere, if you want to change the world…change yourself -Riding the tiger. Hmmm. What a way of shifting responsibility!!
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Though, I’m still in mourning of the Oprah Winfrey Show ending, I want to get myself together for just a minute to notify you of my recent unexpected opportunity.

 

Don't you think she looks great?

Oh,but first, in a previous post, Flaky Layers, I compared my acceptance of MS to peeling back layers of a biscuit. My head therapist blessed the idea, she agreed with the analogy. Then, her knowing me so well, asked if I could speak with some new physicians about my experiences living with a chronic illness!!!!!!!!!!

She may as well put rocket boosters beneath my wheelchair because I thought for sure I was about to fly through the roof! I was so flattered and excited, but ready!

Lift off!

When? How long? Where? Do you need a PowerPoint?

I was extremely excited and ready to share. I later told her I gave renowned presentations in my former career. I educated nurses in local hospitals. In college I worked as a motivational speaker for young girls in my local community. I love that kind of stuff! For a split second I felt like declaring to the world, “I’m back!”

 

She clarified no PPT was needed. It would be 15-20 minutes. Afterwards, we would have our normal session. Great. No need for two trips out there.

 

In Oprah’s last broadcast she said the show had been her platform to share her gift. If you don’t know your gift maybe it’s your charge to figure it out? We all have gifts, just maybe not the same stage on which to put it forward, but put it forward wherever you are.

Okay, now I have to go and prepare my presentation for these doctors Tuesday.

I’ll work on myself next week!

Next week.

14

Class of 2011

I’ve been to many graduations, but my little cousin’s really struck personal chords. The entire afternoon reopened wounds I thought were completely healed, forgotten, and shoved aside.

Yet again I was wrong.

At this point, my high school graduation was almost twenty years ago. My over zealous excitement, optimism and naivety danced within my words and engulfed any self-doubt or limitation. The little girl then had absolutely no idea what her future held. I wonder how she would react to the reality of today? I wonder if I could somehow prepare her?

I don’t think she’d respond too well. I wonder what I could tell her to ease the blow?

Not only was MS faceless, meaningless initials, I question her innate strength and fortitude to receive such news. Although, I truly believe I had Multiple Sclerosis then, my symptoms were small and foreign to me; hence they too could be waved aside. They were easy to ignore or to chalk up to “a bad day.” I believe sometimes “ignorance is bliss” and called for!

The most important things to me then and now bare a slight resemblance, but for the most part are different to say the least. I wanted a car, to “go off to” college, cash and a boyfriend. By those standards I actually faired pretty well. I have two degrees, a husband, and an apartment. Oh, also a truck I’m physically unable to drive! No, big deal. I’m sure the world of drivers… don’t miss me.

I took cognition (thinking), walking and driving for granted. I believe most of us do, until we are forced into a new normal. Speaking of cognition, I recognize I’m not the sharp focus-minded girl I use to be. I have MS related concerns with memory and perception.

Luckily, it would be seven years later before I was introduced to my life’s co-pilot, multiple sclerosis. Furthermore, I count nine more years until MS started steering solo. Now, I like to think that MS is just sitting in the front seat with me. I wasn’t ready to share the front seat twelve years earlier!

The ladies at church use to say, ”He only gives you what you can handle.” I know what they meant now.

By the way, congratulations little cousin!

12

Flaky Layers

These are delicious!

I fell into panic mode shortly after I went to see my mental therapist. If, you remember, she mentioned my passionate quest for independence (AKA hand controls) was possibly a manifestation of denial of MS. In other words, after 11 years, I still hadn’t accepted Multiple Sclerosis. Wow, what a blow!

I was so taken aback because the entire premise of this site is based on acceptance. In fact, through this blog I have gained a considerable amount of support and reinforcement. Her question rocked my foundation. I felt as if it was comparable to calling me a fake or phony. I was on shaky ground.

Her question rocked my foundation.

One week flew by. I went back to see the therapist. (I have a standing weekly appointment.) I asked her to expound on the nature of my questionable acceptance. It seemed as if she put a spotlight on me and echoed, “Acceptance comes in layers.” I choose to compare it to a hot buttery Flaky Grands biscuit! You can easily peel the layers off. Usually the outer most comes off pretty quick an easy. The others require a tad bit more fine finger work, detail and precision.

This seemed to me a good enough analogy. I think she said I’ve conquered some layers, but maybe the innermost I’m still pulling back. Does that make sense? I haven’t cleared this analogy. But for now it soothes me. I can receive that perhaps I haven’t accepted MS in its totality. Maybe a non-handicap person using “my” bathroom stall doesn’t require getting the mall police involved! I admit that I may have blown the driving thing out of proportion. To be honest, it does bother me that nearly all of my friends and family think driving may not be a good idea right now.

I mean driving is a huge feat. On some level I think it’s going to rewind my life to “normal.” Am I setting myself up for a huge let down? Possibly, I need to do a bit more physical AND mental therapy before attempting to get behind the wheel!

Oh well, maybe I’ll go eat a darn biscuit! I’m hungry now!

12

POV

My wheelchair point of view at Jazz Fest 2011 featuring Ms Lauryn Hill.

I shot a video of life viewed from a wheelchair. I find that failing to interact with other adults eye to eye is leaving a blow to my psyche. My mental therapist suggested I haven’t accepted MS. Is it just simple denial on my part? Maybe that’s it. I don’t know.

What I know for sure, (“Oprahism”) is that we’ve been here before. We’ve done this already. Okay, not the video thing, but the “entire accept, adapt, and move forward” definitely. I read online that acceptance is fleeting. My, is that my truth!! Because some days I just want to scream the ENTIRE day. Then, other days I’m okay.

Later, I’ll go to physical therapy (I go 4 times a week). There are all kinds of people there with a gamut of neurological pathologies; including strokes, MS, and spinal cord injuries. It’s a pot of all ages and races at different stages of our rehabilitation journeys.

“Why did he even leave me here?” a fellow patient moaned. I recognized the pain. I could feel it. I know when you go to that place not many words are comforting. So, I said little and I simply begin crying right along side her. That was all I could do.

My physical therapy minus the patients for confidentiality reasons!

I enjoy going to therapy. I have to admit even as a nurse I didn’t strongly appreciate the impact of physical therapy on multiple sclerosis. A therapist once reminded me that MS is a disease of initiation. The message sent from your brain to move a limb or muscle doesn’t get there because of road blocks (lesions). Physical therapy helps me accommodate these road blocks by possibly forging new routes. Okay, that’s enough medical talk. I know most of my fellow MSers already know this, so that was for friends and family! Besides that’s the most commonly accepted theory, but docs don’t know for sure!

I leave there feeling grateful to be who I am, like I am, because things can truly be worse… MAYBE. I have to live with this huge maybe. I’ve said before, it’s my cross to bear.
I count on the fact that I am here like this for a reason. It’s up to me to make the best of it and share whatever I have to give.  This somehow consoles me. I have a responsibility to share my story, to share my gifts. In a way it gives me purpose. I wonder if that’s what I’ve been desperately looking for, purpose?

I bet it’s cheaper than getting hand controls for disabled drivers installed in our truck!

Ms Lauryn Hill at New Orleans Jazz Fest 2011

4

Fade to Black

Sadness definitely not here. Just me hubby and Spike Lee!

People were in line an hour early at the Barnes and Noble on the West Bank of New Orleans awaiting the arrival of Spike Lee who was signing copies of his documentary, “If God is Willing and Da Creek Don’t Rise.

I just heard someone say, intense grief for a loved one subsides a bit, but the sadness never goes away. A person learns to live with it. I could relate.

I carry sadness when I accompany my husband to the park. I go because he likes me to. I never told him how gloomy it leaves me. It’s odd because on one level I enjoy the serenity of the park, but on another it ignites a personal pity party for one.
So it’s safe to say we (sadness & I) go the park together.

Do you remember Sam?

Phyllis Montana LeBlanc and me Do you see sadness?

I knew it could be a sticky situation. I use to run 2 to 4 miles there. I sort of compare it to Sam Malone (the recovering alcoholic) from Cheers working/owning his own bar. So, on some level I sit at the picnic table with my laptop loaded with Spanish programs and patiently wait for Tommy. I arrive a tad bit sad. I leave proud and very sweaty. This Louisiana humidity does not discriminate. It’s hot and sticky for everybody!

We go shopping but it’s just not the same. My point of view is obstructed and odd. Plus, if I wheel myself, it’s not for long. It’s just too much for my stamina. Just looking through clothes on a rack is cumbersome. One time I even had an accident in a Marshall’s dressing room! Let’s just say I haven’t been back there since. That was rough for the both of us!

10 minutes

 

Remember my recumbent bike? Well, sadness would accompany me on the bike, but I’m usually too busy trying to keep my heart rate in my target zone for 10 minutes! The point is that’s my workout! 10 minutes. But for that brief time I put on my headphones, iPod and heart rate monitor and sadness fades to black!

Read my happy comments about Spike Lee in a New Orleans Times-Picayuneinterview

21

Curtain Call

opening night

WELCOME

Independence is just out of my reach, but it’s the one thing I foresee granting me control, which in my world is symbolized by driving. It equals autonomy and self-sufficiency. As you may guess or remember from earlier posts, my doctors banded me from the world of drivers. The days I cry. The days I mope. It’s usually because I can’t do________. You can fill in the blank. Because, now 11 years into my diagnosis, it amounts to a multiplicity of things. Things I could once do. Things I silently weep for. But please don’t misunderstand me; it’s in no way the entirety of my being. This MS is heart wrenching, but I am hell bent on not letting it get the best of me. I choose to live accommodating whatever disability appears center stage…..reluctantly!!

Just like anybody else, I have my good days and I have my bad days. The point here is just that at the end of any given day I can’t DRIVE. UGGGHHHH!!!

That's the FJ I must be out to lunch!

I haven’t sat in the drivers seat since 2009. As is so happens, I lost many physical abilities then. But none has been as impactful as losing the powers to snatch my keys and go wherever I wanted. I didn’t have to tell anybody. I didn’t have to rationalize anything to anybody; I was a 34 –year- old woman who only owed an explanation to my husband. I could even call that one a courtesy! I want to make the decisions. I want to be responsible for more than the towels around here!

 

Now the wheels are turning. Things are happening. I’m going to physical and occupational therapy on a routine basis. The possibility of driving once again (with hand controls) slowly draws nearer.

 

I wonder if I’ve placed too much hope on driving restoring the complete independence I crave; control as I see it, that will ultimately lead me back to happiness. I’ve read numerous places that anytime we look for one particular thing to “fix” us we set ourselves up for disappointment. I hear placing this lofty of an expectation on anything is dangerous. That is, placing it on anything outside of ourselves; anything tangible. It’s similar to betting it all on black in Vegas!

 

I’ve done it with many things through out my entire life span. In grade school it was a Barbie then a 10 -speed Schwinn bike. Later, grades worthy of a sizeable college scholarship, a car (any car would do) and an apartment. Moving forward, a lucrative career.

Thanks for comin' out! Please come back!

 

Only for the curtains to close and I am still left with whatever it is I already had!