Tuesday, July 15, 2014

Living the Dream!

“Hey, Kevin!  How’s everything going?”
                ‘Living the dream!’

It started as a quick line I’d shoot back to any daily greeting.  Everyone got the same ‘living the dream’ in response; nobody was safe.  I said it for no reason other than because it was a quick, snappy response and it was funny (at least to me).  One day not too long ago, however, something happened.  ‘Living the dream’ became something more. 

I meant it.

I’m living the dream every day.  Not intended to be a quixotic boast, ‘living the dream’ is my personal reminder.  Every time I say it, there is a smile on my face as I whisper the reminder “every day is better and better!”  I’m a 42-year old man with Multiple Sclerosis.  According to most odds, I should never again be strong, healthy, and full of life.  Statically, every day should be further degradation and decline as I continue to become more and more disabled.

That won’t happen; my dream doesn’t end up that way.  In my dream, I stand strong with the force of the world.  I stand with the hundreds of friends who support us every year, joined by thousands more new friends this message is passed on to.  In my dream, the support of our fight gets bigger and bigger, grows louder and louder, and reaches further and further until we win.

This is how I will stand strong with the voice of the world:
  • Please reach out to me: KevJByrne@gmail.com.  I need to hear voices of support.  In my dream, the fight with MS around the world becomes my fight and my fight with MS becomes yours.
  • Please support my fight: www.nationalmssociety.org/goto/EMBK.  My family fights here in Oregon under my daughter’s name.  Hundreds of supporters joined us last year to put Eleanor at the top of the fundraising list.  In my dream, our supporters and donors grow beyond imagination.  They donate, helping us raise the money needed to improve the quality of life for people affected by MS and ensure that our daughter’s generation can live in a world free of MS.
  • Please pass this on.  In my dream, your friends and their friends (and their friends and beyond) become that force of the world I stand with.  Every person who reads this reaches out to me, supports my fight, and passes my message along to start the cycle again.  There is no way we can do this alone.  In my dream, our BikeMS thank you cards are on countless refrigerators around the nation and across the globe.

That’s my dream today.  My dream starts with you and passes on to your friends' friends' friends...   Strengthened by you, I stand strong with the voice of the world.

I don't want Eleanor to continue to fundraise and fight for me.  Eleanor already knows too much about Multiple Sclerosis and what is does to daddy.  In my dream, Ellie’s name and face are the story of how we defeated MS and made me strong.

It has been a few long years since my body was strong; a long time since everything was easier.  I was diagnosed with MS in 1999 and it was (mostly) under control until just a few years ago.  I was living my life to the fullest and felt like the poster-child for victory.  There were a few years of hard fought struggles, but my MS couldn’t keep me down.  No way was MS was going to defeat me. 
When you’re a West Point graduate, former Air Cavalry commander and AH-64 Apache Top Gun pilot, things like MS don’t stop you in your tracks!  That wasn’t the storybook ending I expected, so I refused to let it happen.  With incredible family and friends sharing a wonderful life with me, my goals focused on paying forward, like those who helped me, for so many others fighting this disease.

What changed?  My MS has conducted a relentless assault on my body.  Since 2011, I have undergone a mind-boggling barrage of hospitalizations, infections, ailments and treatments.  My condition is now classified as Secondary Progressive MS; the disease now progress more steadily without any noted relapses, just a continual decline.  There are currently no approved treatments available.

Except for that, nothing else changed.  My beautiful wife, daughter, family and friends continue to rally and support me.  Try as it might, MS still can’t keep me down.  Fighting back is the only option.  All days are harder than they used to be, some are worse than others, but I refuse to stop pushing.  Some days I gain ground in my fight and work toward my next victory.  Other days I lose ground: unable to run, walk, talk clearly, or even lift my arms to drink a cup of water.  But every day I live.  Every day I do my best to stand strong with that force of the world.  Every day I’m ‘living the dream’.

‘Living the dream’ is my safety net, my response to the world when the world doesn’t need to hear about how rough life is for me.  Instead, I want to tell the world that I am fighting.  I want the world to fight for me.  I want to fight for everyone who cannot.

Sometimes I reflect on what dream I’m living.
  • A cure for me?  I cannot imagine being so bold yet; I am only 7 months into a 2-year clinical trial that hopes to stem the progression of my disease.  As a random, double-blind study, there is a 50:50 chance I am getting the medication.  If I am receiving it, the jury’s still out on whether it will even work.  
  • A world free of MS?  That is still the vision but we’re not there.  New cases of multiple sclerosis are diagnosed daily, reminding us that we don’t yet have a cure.  The worsening of my own disability reminds me that challenges for those affected by MS are paramount every day.

Indeed, we are not there yet.  Today, my dream remains my fight.  The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Please support out fight!

Kevin Byrne - Portland, OR

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