Tuesday, October 21, 2014

Tell us why you want to end MS, Kevin

I received an email today, a message from the National MS Society.  The subject was clearly stated: Tell us why you want to end MS, Kevin

It’s a petition but there’s not a clear political, financial, or social campaign associated with the question.  The goal of Katharine George (National Sr. Director, Database Marketing) is to “rally the MS community and together we can build on the momentum of recent promising research projects and do more to help everyone with MS better navigate the challenges of life with this disease.”

I’m not one to randomly click on links, but I know the source and it’s legit.  Besides, I’m kind of curious to know what she’s really asking for.  So, OK, I’ll bite.  I visit the site: (https://secure3.convio.net/nmss/site/SPageServer/?pagename=HOM_FY15_10_oct_survey&s_src=DHODI151042WEB). 

Clustered on the page is one line that stirs my response:
  • Tell us why ending MS is important to you
I can do that, Katharine, but your little response block on the page won’t do.  Please bear with me.

Why do I want to end MS?
Because my MS will not stop its attack on my body

It has been 15 years since I was first told “you have MS.”  In a flash, I lost most of the focus in my life at the time.  I was as a 27-year old Army Captain, an AH-64 Apache pilot serving overseas as an Air Cavalry troop commander, living the life that I always dreamed about.  Then I wasn’t.  I became a 28-year old patient at Walter Reed Army Medical Center in D.C., learning to live with vision issues, pain, mobility challenges, and the psychological damage of facing the rest of my life in a chronic state of disability.

I recovered; not everything but I recovered a lot.  I built a new life for myself, both personally and professionally.  I comfortably managed my MS.  Though MS symptoms and treatments were always a part of my life, I was still able to manage.  I began to focus on giving back to the MS Society; riding to raise money and awareness for those who helped me through my dark days.  With amazing personal adventures and fulfillment, exciting domestic and international assignments, I was living the new life I was now dreaming about.  That didn’t last long.  By the time I was 32 I had lost everything again and was faced with increasing physical and emotional damage.

My family and friends bore a heavier burden with me this time, more than they deserved, but again I recovered much of what I lost.  I regained my strength, fell in love with an amazing woman, and built a new life that is stronger than all of my old dreams combined!  Together, we thrive, fight, fail, suffer, recover some, then create more.  I don’t lose everything anymore, because Brie is there to share that burden and help me recover…time and time again.
  • We lived, loved, and married.  At 35-years old my next battle nearly cost me my life.
  • We recovered and thrived… I climbed mountains… and we welcomed our daughter into our lives.  At 39, 40, and 41-year old we battled infections, medication reactions, and further debilitation from the progression of my disease.
I am now 42-years old and battling the constant onslaught of secondary progressive MS.  We see my own worsening condition as well as the ongoing struggles of our vast MS community.  We welcome new research and new treatment options available; at the same time we welcome new members into our community.

Through this all, Brie and I remain focused on fundraising, advocacy, and awareness.  Somehow, we consider ourselves lucky.  We know that it can get worse.

We need to do something before it does.

Why do I want to end MS?
Because my MS is not unusual

Every person’s MS is unique.  The daily struggles of my MS are nothing like those experienced by the hundreds of close friend with whom I share those letters with….MS.  Every struggle is vastly different, yet we all understand the bond we share.  We understand their setbacks and pray for them when we’ve been in ‘that place’; we admire their strength when they show us how handle the challenges faced; we look on in fear as they battle through something we haven’t dealt with…yet.

The first 15 years of my MS was more severe than it is for some, a breeze compared to others, yet most often quite similar to most.  My progression is, in many cases, a mirror image of the ‘statistical average’.  That scares the hell out of me since I am familiar with the average progression of MS.  On the other hand, that puts me right in the spotlight of cases to consider for treatment and candidates for success when we do find the answer!               

Why do I want to end MS?
Because MS is hurting my family and friends

Brie and Eleanor suffer from my MS every day.  One came into this willingly, yet she knew me for a time as an active husband.  The other is the picture of innocence, who doesn’t even know what it is like to have a healthy daddy.  For both, every change in me brings with it an additional burden on them.  They watch as my MS takes me from them.

All too often, my MS becomes the issue and focus that others have to deal with.  My family and my friends care for me, provide the assistance I need to carry my through the difficult times, celebrate me when I see success, and advocate/fundraise/support me in my fight.  When there is cause to celebrate, they are joyous for my success, yet during the hard times they share in my burden and take all too much on their shoulder.

I let them all do this, for I can’t do it alone.

One question:
Why do I want to end MS?
Three reasons:
Because my MS will not stop its attack on my body
Because my MS is not unusual
Because MS is hurting my family and friends

It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Kevin Byrne - Portland, OR

Friday, October 10, 2014


My friend, Don, scolded me recently.  It had been quite a while since I had to sit through a stern lecture regarding the poor choices I was making.  The conversation went something like this:
Don: You've got to slow down, Kevin.  You’re doing too much and pushing too hard.
Me: I’m just doing what I can.  I can’t just sit still.
Don: If you do too much with your MS, you’re going to end up hurting yourself.
Me: But, Don, you do a lot.  You climbed up on your roof, cleaning moss off the other week.
Don: Yeah, but you've got to be careful about pushing your body too hard.
Me: But, Don…you’re completely blind!
Don: Yeah, but I’m not going to get any more blind.  You could really do some damage if you do too much.
Me: But, Don….never mind.

How difficult and challenging something is really does come from the unique perspective of each individual.  For me, Don’s my pillar of strength.  Although I like to imagine myself in the Daredevil superhero role, Don truly is "The Man Without Fear".  He’s the stereotypical blind lawyer turned superhero… the man who always seems to push too hard yet somehow manages to blow past the expectations and limitations anyone thought they had about him.  Don provides me valuable insight on perceptions and what to do about them.

I live in a strange world these days; a world where I struggle to bridge that gap between the perceptions that other people have about me and reality.  My MS creates perceptions in my family, friends, and everyone I interact with throughout the day. 

Sometimes I hear words like brave, inspiring, and motivating when others describe me.  Some people are impressed by what I have done in spite of what has happened to me.  Others admire my continued energy in spite of what is going to happen to me. 
…but that’s not reality

The reality is that I am scared, embarrassed, and disheartened when I try to describe myself.  I am continually critical of what I am doing; unsure of what I can or should do next.
…but maybe that’s my perception

My own perception is the most dangerous one of them all.  I get wrapped up in trying to predict or manage the image that others might have in me and my MS. 

If I push my body hard, against the limit of what my MS can do, will others see this as irresponsible and dangerous? 
The answer I found here is ‘sometimes’.

If I take it easier, resting early to conserving my energy, does that come across as lazy and taking advantage of my situation? 
The answer I found here is also ‘sometimes’.

How do I respond the next time I am confronted with these reactions (I experience them every day)?  Do I need to try and understand their perception?  Do I need to work to correct or adjust it? 
This is where Don comes in.

My talks with Don help me bridge the gap between all of these worlds.  He isn't overly-impressed by what I do (nor should he be).  Then again, he never takes pity on what is happening (nor should he).  He shows me the reality of my struggles through stories of his own past, before he had it all figured out (my words, not his!)

Don knows that there is something else. 

But what?  If the perception of others isn't reality and my reality is just another perception, then what is the real state of my MS? 
·         How am I handling everything? 
·         What am I doing right/wrong? 
·         What should I do more/less?

My energy usually goes into managing perceptions.  I feed off of the motivation that others see in me.  I push to do more to try and live up to their perception or overcome my own sense of reality!

Then there’s Don, pulling me from the extremes of every perception.  Don caught me off guard with his little lecture the other week, but I realize there was another plan.  I’ve been too wrapped up with what I have done and what’s right/wrong with my current focus.  I need to think about the future, the next steps to take.  If I don’t then I can really do some damage.  Worse than that, I might miss out on valuable time and opportunities with those I hold dear.

I got it, Don.  Your lecture and your example are clear.  Don’t do less…don’t hold back…but don’t go into anything unprepared!  Winter is coming; my historically tough season.  I can’t try and push my body through everything again.  I have proven that will not work.  This time I will focus and plan to:
·         Strengthen my body and mind to move along the ‘better’ path, in a way that’s faster, safer, and gets me where I need to go.
·         Guide my way around obstacles.
·         Prepare so that I can pull myself, and let others pull me when needed, through the toughest challenges.

What is the real state of my MS?  I don’t know if I will ever find the answers to all those questions I posed.  My guess is that complete answers really don’t matter.  I am entirely responsible for what I do with my MS, and I think that’s where perceptions will come in.  How I react to reality, rather than the nature of that reality itself, will form any impressions.

I’m not sure if I will ever change the whirlwind of perceptions about me and my MS, but I guess that's not so bad.  If someone considers me inspiring and motivating, that’s simply a reflection of how I've chosen to respond to reality. 

Besides, it’s good to feel like a superhero once in a while!  Wouldn't you agree, Don?

It will never stop…nor will we
It will never quit…nor will we
This is why we ride fight!

Kevin Byrne - Portland, OR