My Story - Caroline Craven, theGirlwithMS

Coming Out with MS




Did you know that some MSers don't talk about what ails them because it is so little understood?


I know folks who feel they have to “come out” to express the fact they have MS yet here I stare at the cover of LA magazine with Sheryl Crow, breast cancer.  Even the NFL teams had pink on for awareness of breast cancer.  I think it's great.  It's all about the marketing.  Pink, October, Mammograms.  Excellent job.  The image around surviving breast cancer is the image we need about MS.


We are survivors.  Every day.  It's an annoying, pain in neck disease that will rob you of your life.  It may not kill you physically but it will destroy your Self if you do not understand and manage it.  I call it manageable stuff (other words come to mind, but this is G-rated) but that’s what the MS stands for, coming off of a 5-day relapse where I had to revert back to the cane.  But not today and that’s all that matters!  I mismanaged, paid the price, started feeling a major relapse coming on, vision, balance, strength, everything.  But I listened to my body and stood my ground with boundaries to get well:  Reduce stress, eat healthy, quiet, rest, peace...

So how do we raise awareness with the general public about MS because the current program isn't quite working.  Many options but basically we need a really hot spokesperson like Sheryl Crow.  But since she's busy fighting cancer we need to find someone else.  And I'll be honest, Montel Williams just doesn't do it for me.   This is something we'll have to work on because we should be proud of surviving this insidious illness and spend our time enjoying life. 



Actually, upon first viewing the Sheryl Crow cover on the LA Times Magazine for October 4, I was bored.  I thought really, another half naked, hot sexy, cancer survivor.  A bit pedestrian but it is Sheryl Crow.  And she is hot.  And there is photoshop.  But the point is that she brings up very poignant points about surviving cancer that relate hand-in-hand with surviving MS.  


"The mythology I created for myself as akid was if I took care of everybody, then everybody would love me.  If I made myself without needs, they would lvoe me more.  I think that's where I was fragmented all the years before my cancer diagnosis." - Sheryl Crow

I don't know about y'all but this hit close to home for me.  Here are some topics she discussed.  All of them are a part of my own healing regime, so let's do them together:


1.  Motto:
"Dont sweat the small stuff" - Sheryl Crow reminds us of the importance of this oft used saying.  
"Live the life you love, love the life you live" - reminds me that we only come around once (depending of course on your spiritual/religious beliefs).  All I know is that I'm alive right now, right now.  So enjoy this beautiful planet we have and all the beautiful people. 


2.  Self-Love
I've mentioned this one before but you and only you are responsible for your Self.  Take care of it.  And that means giving your Self time and attention.  Spoil your Self. Without guilt!


3.  The Big Lesson
Everyone has a different lesson to learn.  Mine was learning how to transition from a power player to a finesse player.  I learning something new everyday.  


4.  Spirituality
Sheryl's cancer was in her left breast.  Some say that the left breast represents nourishment coming into the body and the right represents nourishment going out.  Interesting to think about.  There is a spirituality within our bodies that requires attention.  Seek it.  Love it.  Nurture it.  


5.  Getting through it
Sometimes you just have to cowboy up.  But depending on how your MS hits, getting through it can often mean major life changes.  My initial attack rated at 5 martinis.  I looked that drunk at seven in the morning.  OK, seven in the morning without any martinis or alcohol of any sort.  I'll never forget the day that I could turn full-circle in the hallway without crashing into a wall.  It's not a very wide hallway mind you.  In the beginning I was just grateful to be alive.  To be breathing.  My primary needs were being met by my loving and caring family and friends.  I was surviving.  


6.  Go-To Guys
Of course, Sheryl has go-to guys.  Sure, I wouldn't mind some go-to guys.  Fortunately I have family and friends who make my life quite pleasurable.  


7.  Meditation
Necessary.  I'm not very good but yoga, meditation, peace-finding exercises.  Try them.  Do them. 


8.  Turning point
Several turning points have rotated since my illness but a significant one was in 2008.  I had lived the disease for seven years.  Call it the seven-year itch but it was time to define myself outside of my illness.  I applied for and received a scholarship at the Art Center of Design which I attended at night for graphic design.  I dove into my photography with several art shows and presentations.  And the riding of course.  Horses came back into my life after a 15-year hiatus.  


9.  Aging
One definition I have for MS is what feels like pre-mature aging within my body.  But then, maybe if you burn the candle at every end possible like I have, you just burn the body out.  We are only human despite what we do to our bodies.  


OK - so that's my input on the article.  An enjoyable exercise that helped me think about certain aspects of my disease and how I wanted to approach them.  


One day we won't have to "come out" with our various diseases.  People will understand.  Seriously though, imagine if Ellen had MS.  She would have so much fun with it and get the word out about better understanding it and all of it's elements.  Now I'm not wishing MS upon her but we need some good hype about it.  Educational hype.  It was great when the West Wing was on and the president had MS.  We could look for another character to absorb the role.  

Something to think about. 















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