Wednesday, July 23, 2008


Perfectionists.  Type A Personalities. Overachievers.
I have always been a member of all three clubs. 

I have always wanted to be the best at everything I did. Mediocrity was never an option for me. I have trouble sitting still for too long. There are too many things I want to be doing.

As we age, we can no longer do all the things we used to. With age comes the loss of energy, among other things. What you could do in any given day at 20 seems nearly impossible at age 40. I have just had to learn these lessons a bit sooner than most. What i could do at 27 now seems ridiculous at 29, but a lot happened in those 2 short years :-)

I have always struggled with defining myself by what i "do", by my accomplishments and by my productivity. As we age (or even face a neurological disease!) we must come to terms with the fact we can no longer accomplish as much as we once used to. But that doesn't make us less as people. Our lives can be rich with so much without being what we used to think of as "productive".

Easy to say. Much harder to come to terms with. 
If I cannot define myself by what I "do" or "accomplish" then who am I? There are so many old labels that I can no longer live up to. For example, I am known for being fairly entertaining. I tell funny stories, I am occasionally witty. I think people enjoy my company, for the most part. So what about the days when I am really struggling to walk straight, can't see worth a darn and am in pain? What if I don't feel well enough to be funny and entertaining? can I still show up to the party as I am, even if I am not able to keep up my usual witty repartee? Or will everyone be disappointed that I'm not living up to my "usual self?"

Aren't we all constantly changing? relationships change, friends change, people have children and lose loved ones and get sick and get new jobs and all sorts of things. So I guess it is inevitable that I would change, too. Not in ways I ever anticipated, but that's Life, right?

Perhaps I have to come to terms with no longer being able to BE an Overachiever. I am going to have accept the words "good enough" and let words like "perfect" be something that lives only in myth and legend.

In fact, I have been sitting here trying to end this blog post properly for the past 20 minutes.
I am now walking away.
It is good enough.
It is not perfect, and sure I could have probably come up with a better ending, but I am really tired and fighting what my dad thinks is probably a sinus infection and I should be curled up on the couch with my husband and my box of kleenex.

It is good enough. And so am I. :-)

Thursday, July 17, 2008

Pain...the body's way of letting you know something is wrong.
Your throat hurts, you find out you have strep throat and need an antibiotic.
If you break your arm, it needs a cast, and without pain you might not have known it was broken. I could go on, but you get the point. Pain is actually important. It is your body's way of communicating with you.

Neuropathic pain is the same- it is letting me know there is something wrong.
DUH. I have lesions. In My Brain.
But what else is the pain trying to tell me, perhaps?

It is a common joke among MSers that there should be some sort of betting and/or drinking game when watching the tv show "House". For those of you that don't know, it is a show set in a University hospital, where the lead character, Dr. Greg House, MD, is the country's leading diagnostician. He takes the medical cases that no one else can solve. The weird, crazy stuff. Like MS! So anyhow my husband and I often make bets on how long into the episode someone will throw out "multiple sclerosis" as the patient of the week's diagnosis. 80% of the episodes talk about MS, at least briefly.

Anyway, I was watching an episode a few months back where a young patient on the show was actually diagnosed with MS. The patient asked what MS was. And the handsome Dr. Chase tried to sum it up in one sentence. It went something like this:
"Well, MS is a painful disease. It can affect your bladder/bowel functions. It can also affect mobility. It is incurable, but there are lots of promising treatments to prolong your quality of life..." blah blah blah. Take it all with a grain of salt - it IS a tv drama! They have to make everything sound dramatic; however, all of those things Are true about MS. And it has stayed in my mind that the writers (for whatever reason) chose "pain" as the leading symptom when sharing this character's fate with him.

MS is a painful disease. I have been sorely reminded of that fact this week.
Maybe its the summer and the heat. I also seem to be fighting some sort of head cold. And since heat and infection are both major stressors to my disease it makes sense that i feel pretty awful. I am having horrible neuropathic pain/neuralgia, which I wouldn't wish on my worst enemy. So while this particular pain isn't telling me anything new, it must still be trying to tell me something. To Slow down? To get more rest? To keep my core temperature down and avoid the Atlanta heat? telling me my cold needs some TLC and vitamin C and the ultra soft kleenex?

I need to be a better listener. What is it telling me?

"Go drink more water. Go to bed super early. Find something good to eat for dinner. Stop judging yourself for being angry and sad about being in so much pain. Its okay to be angry and sad. Its also okay to have chocolate on those days."

Saturday, July 5, 2008

MS-Free Zones

Last week I helped my sister Helene, who asked me to come in and do hair & makeup for 10 actors & actresses appearing in "Charley's Aunt". The students were awesome and so patient with me as I played around with different wigs and moustaches and makeup techniques. I actually had to pull out my old college textbook to remember how to properly apply a bald cap (Yes, I actually had an entire course in college devoted to stage makeup techniques!) 
I re-learned old makeup techniques and invented some new ones. But what I really learned last week came as a complete surprise... 

For three hours a day I was just "Caroline, the lady helping with hair & makeup". The kids didn't know that my feet have been almost entirely numb for weeks. They didn't think anything of it when I squinted one eye at them, or looked at them sideways to try and see them better. They had no clue that I was anything other than clumsy when I dropped things every five minutes. They merely thought I was flaky when I asked them the same questions, "Did I tie the gold ribbon or the pink ribbon in your hair yesterday?" when in reality my short term memory is not what it used to be.

For three hours a day for five whole days I was just someone who helped put on a show. As I braided hair and powdered faces I could almost forget the constant pain, the numbness, the poor vision. I could almost, Almost forget that I had MS. For three whole hours!

It reminds me of the line from "The Wizard of Oz", in the very beginning, when Auntie Em tells Dorothy to go find "a place where there isn't any trouble".

"A place where there isn't any trouble. Do you suppose there is such a place, Toto? There must be. It's not a place you can get to by a boat or a train. It's far, far away. Behind the moon, beyond the rain..." And Dorothy begins to sing my favorite song.

A place where there isn't any trouble...
An MS-Free Zone...A place where MS is not allowed to visit.

In those few precious hours I learned that moments in time exist where I can just be Caroline. I can make-believe that i am not sick, not in pain, not impaired. I know it is simply a moment and it will not last; however, having those moments gives me strength. And hope. It makes the moments of pain and frustration a little easier. 

Who knows where the next MS-Free Zone will be? I am excited at the thought of it, whether it is three hours or three minutes. I aim to find more of them. And then somehow, slowly, I may be able to find my way back to myself. Not my former self, but a new version. Someone I am still getting to know, but every day liking a little bit more. :-)