Friday, March 2, 2012

March is Multiple Sclerosis Awareness Month

Yesterday (Thursday) was the first day I left my house since last Friday.  I hadn't planned on being home so much, but it tends to happen with me far more than I would have thought possible.  You'd think I'd be bored all alone at home.. but was I really alone?  Nah, not at all.  I'm always in the company of my sweet little babies who can't seem to get enough of their mommy's love and me of theirs.  But beyond having my kitties with me, I'm so comfortable with myself, my thoughts, my very simple life, that I'm able to be home for days on end and not go stir-crazy.
While on Facebook yesterday afternoon, I learned that this is Multiple Sclerosis Awareness Month.  I'm not sure if I knew this before or not, but now it's written on my calendar so I will have no trouble remembering MS month ever again.  And honestly with as many people who unfortunately have MS, everyone needs to be more informed.
I've been thinking lately how much my life has changed due to my having MS. When I was in high school, my dream was to be an English teacher and hopefully inspire young people to love writing.  My favorite time of the year was when my English teacher would announce we would be doing some creative writing.  I'm sure my face lit up every time while most of the class broke into groans of disapproval.  Writing gave me a chance to express myself in a way that I felt I wasn't allowed to do on most other occasions and I loved it.
For those who do not know me from a young age, as strange as it may sound, I used to be shy.  And I mean PAINFULLY shy.  If I could have been invisible while in high school, it would have made my life easier.  I was overweight, had terribly curly hair (the beauty industry had not yet understood that "white" people have natural curls and need products all their own!), was already large breasted, hated my name (Lucy is my nickname) and all this led to a deep insecurity in most aspects of who I was.. except in writing.  Writing is when I would come alive.

When I was diagnosed with MS, my life had already been falling apart since I was barely able to walk, couldn't see too well and didn't know who I was or what the future would bring.  While others, at the age of 21, enjoy "partying" or other young person activities, I was having numerous MRI's, spinal taps, all kinds of doctor's appointments and learning what life would be like if I had to live it out in a wheelchair.  Needless to say, becoming a teacher was put on the back burner and is no longer a possibility for me with the cognitive issues I have from the MS.  But yes, I'm OK with this.  Shit happens and life does go on.
A couple years after my diagnosis, Duran Duran, one of my favorite all-time groups, released a song called "Ordinary World."  This song became my lifeline as the words spoke to me in a way I hadn't thought until the moment I really listened to Simon LeBon's words of wisdom.  Here are the parts that made my life that much easier.. and Simon, thank you!

What has happened to it all?
Crazy, some are saying
Where is the life that I recognize?
Gone away

But I won't cry for yesterday
There's an ordinary world
Somehow I have to find
And as I try to make my way
To the ordinary world
I will learn to survive

So you see, I no longer look for the life I had once before because it would be an impossible dream to ever have again.  I've found my new "ordinary" and it's fine.  Yes, there are times when I want to scream at the top of my lungs at how unfair life can be and how much I fucking HATE my legs that don't want to walk too much and my hands that won't respond when I merely need to sign my name.. but I've learned to survive and honestly, I feel I do more than just survive.  I live.  And being alive is truly a great thing.


  1. Hey Lucy, this hit pretty close to home for me. I am 20, diagnosed 3 weeks ago and fully planned to be an ESL teacher and writer while traveling. Well guess what, teaching's out the window for me too! Now I am left scrambling for ideas of what I can do in life. I am not totally despairing, but rather a little lost at the moment. Can I ask you what you have done as alternative careers? I really like your sense of "ok, shit happens... now keep moving" - it's so encouraging! Thanks :)

    1. Hi, Niko. Thank you so much for reading my blog and commenting. I can't tell you how sorry I am that you were diagnosed with MS. It kills a little piece of me when I hear of yet another who will be forced to deal with this disease. I wish I could tell you that I figured out the perfect career for myself, but that didn't happen. I was 21 when diagnosed and the MS hit me HARD the first 8 years or so. I realized that working "temp" jobs would be the easiest, so that's what I did until I was 31, when my neurologist suggested I stop working. It wasn't an easy piece of advice for him to give, considering how young I was, but he could see how quickly my MS was advancing and being constantly exposed to germs was the culprit. So my alternative career has been staying at home with my three beautiful kitties, figuring out new ways to accomplish every day tasks and learning to love myself.. which was the hardest thing for me to do. I can't say life will be easy for you but maybe you'll be doing things in a few years that you can't imagine you would have been able to do. I'm still ambulatory, after 21 years.. who would have thought? Just try to stay positive and look me up on Facebook anytime. :)

  2. I can really see the strength in you Lucy! It's a strength earned, not just won like in a wrestling match, and I find it so admirable. I can imagine that to stop working, when you tried so hard to do it while living with MS, must have been a very difficult thing to live through. But hey, it's a matter of adapting to and living a different style of life, and it's certainly not a question of your life being over, as I know you've already figured out! And your kittens are adorable :3 I have a kitten of 9 months. I think that she gives me so much comfort when I am feeling lonely or despaired. What a difference an animal companion does to someone!


    1. Niko, you brought tears to my eyes when you said you find my strength admirable. It took me many years to reach a point where I'm OK with my circumstances and not dwell in a world of depression. It wasn't until I made the conscious decision to be happy that life, somewhat, fell into place. I was probably 38 or so and I would literally go to the bathroom mirror every morning, force a smile and say to myself "you have MS but you can still live on your own, you have terrific parents and brothers and your girls (my cats) love and need you. You have MS but you can still smile." As time went on, I would add things such as how I'm terribly (or wonderfully!) opinionated, have a great sense of humor and people would give anything for the curls I have naturally. Yeah, I would say pretty much anything to myself until finally, I realized I WAS happy. I no longer have to convince myself of it. MS sucks. No one can even begin to debate this fact with me because I'd always win. But in the face of MS, I can smile and share my feelings and explain that it wasn't the end of the world for me but when things get difficult or words come out all jumbled up I simply say "I have MS, what's your excuse?!"

      PS-- I'm so glad you have a kitten to keep you company. The unconditional love our babies (not pets!) give us make all the difference in the world.