Archive for March, 2012

31

Passing Storm

The response to my last post was sooooo overwhelming! I’m still answering your comments! Thanks so much for reaching out and I think on a certain level it helped all involved. As far as MS goes sometimes it feels as if I can only take so much before I pop! And pop is what I did last week. You got to see my inner most vulnerable fears and thoughts laid out right before your eyes.

Though my rant didn’t literally change my circumstance, it made me a less tense person. It allowed me to press the release button. Most of the time I put on a smile to make others feel comfortable while I slowly shrink a little inside. This probably in the long run is damaging for us both. I need to consider being more sincere with those close to me. I probably share more with you guys than I do with those around me. It’s safe and convenient to write it here. Nobody’s watching. And as I mentioned before I secretly think all eyes are on me when I am out in public.

I am usually very positive but I do have “down moments” and for the sake of honesty and authenticity I feel compelled to share them. I know I changed nothing. The things that bother me are still here. I’m just a little different. I am glad my storm of hate has passed but I must admit it was very liberating. I compare it to yelling your favorite swear word *%@? after you bump your toe or something. It’s instinctual. Nothing changes but you just had to get it out.

The thing is I generally only share my M.S. complaints with a certain select few, including you. I do know no one wants to be around someone who is constantly complaining. Plus, as they say, “It could always be worse.”

200

I Hate…

When I write something, 99% of the time it is positive. Well as you could probably tell by the title, this post is going to fall in the negative 1%. Lately I have been frustrated and disgusted by a number of things so I decided to summarize them and vent a little.

I hate tripping over nothing.
I hate that I’m sick.
I hate how MS makes me feel.

I hate that I’m getting worse.
I hate that stupid handicapped placard.
I hate when people say, “But you don’t look sick.”

I hate that I can’t drive anymore.
I hate using canes, walkers, and scooters.
I hate how expensive medicine is.

I hate how hard it is to be declared disabled by Social Security.
I hate using adult diapers.
I hate that I can’t wear high heels anymore.

I hate that companies profit off of sick people.
I hate that the TSA checks my wheelchair before I can get on a plane.
I hate that I am tired just from typing this.

I hate that I am damn near blind in my right eye.
I hate that MS makes me hate.
I hate that I can’t do anything anymore.

I hate that there is no cure.

Please add your hate below.

24

Let’s Shine Together

I was no doubt a different person pre-MS. The disease has managed to smash all of my old parts and replace them with new ones that are stiff and unfamiliar to me. As I learn to get comfortable with this new normal of mine, at the end of day, I just need …a hug. Just like my friend Judy of Peace Be With You. I have no choice now, but to keep moving forward. However slow that may be.

I Still Want to Shine

I remind myself
that apart from my MS
I am still intact.

I still want to shine
with kindness, mercy, and love
to light up the world.

Bruised but not beaten,
I embrace my good person
who now needs a hug.

Her poem sums up my wish for this new experience. I recognize my bruised ego but hope it hasn’t over shadowed my shine. To be honest, I don’t think it has. It’s just that with each new symptom lurking around the corner I temporarily succumb to an onslaught of negativity. I feel bruised and beaten. I drag my feet. Head held down. Tears ready to drop.

Then slowly but surely I remember and continue onward. Dragging whatever new symptom I have in tow. I want so much more than I already have. I hear the key is to want what you already have. Now be honest, who doesn’t want more? But all said and done, if nothing else, I choose to believe in my ability to adjust to the unknown. I just hope as I adjust you do too. Maybe we can muster the courage to shine together.

“When you believe something can be done, really believe, your mind will find ways to do it” -Dr. David Schwartz

That alone gives me hope.

10

Make A Connection

If there is one thing I miss from my former lifestyle is my effortless capacity to create connections. I made numerous connections through work and social interactions. When MS entered my life, my ability to work was limited and public exchanges were slashed. I was not able to maintain the same level of links to the outside world. My life seemed to become more isolated. MS was truly killing my ability to make connections.

In 2009, I discovered that the internet was a great way to create and foster contacts. Before then, I never knew that so many people shared so much of what I feel and experience. And guys that is so comforting to learn. I am sure this is a mutually beneficial relationship that was spawned and for that I am grateful. I find reassurance in interactions with fellow MSers on various websites. For years I wished that we had a central place to congregate and share ideas. I just learned that the National Multiple Sclerosis Society has created a new way for us to network. It’s called MS Connection.

This is such an appropriate time for the National Multiple Sclerosis Society to usher in MS Connection because MS Awareness Week is starting March 12th. MS Connection is an online community that helps people make meaningful connections. This is one thing we need so badly because this disease is basically built on a foundation of disconnection that starts in our brains and spills over into our personal lives.

Check it out and make sure you look for me so we can make a true CONNECTION.

20

MS Perks

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!