Thursday, February 27, 2014

News flash!

I’ve heard it said that the media has gone off the rails regarding what it chooses to air.  If it bleeds it leads.  In other words, sensationalism and the outrageous tend to win the day when it comes to coverage and attention.  However, in a refreshing twist, our local ABC news affiliate (WJLA) has consciously decided to go another way.

Led by anchors Leon Harris and Alison Starling, our local news reports all of the hard-hitting stories you’d expect in a top-notch broadcast, but then they go one step further.  Instead of focusing on all that’s wrong in the world, they dedicate time in their broadcast to highlight the good, uplifting and encouraging work that members of our community are doing to benefit our schools, neighborhoods, children, etc.

In his weekly segment called “Harris’ Heroes,” Leon Harris spotlights all that is right within our area.  And in so doing, he reminds all who tune in that the world is still a beautiful place.

After hearing about me coaching Sammy’s basketball team, Leon took an interest in our story.  Hoping that others would be inspired by the tale of a disabled father overcoming his physical limitations to coach his six-year-old daughter’s team, he decided to feature us on Harris’ Heroes.

Click here to see our segment.

Our story aired on Wednesday and so far, the response has been tremendous.  In the few hours following the broadcast, I received what seemed like countless emails, texts, phone calls, facebook messages, etc. congratulating me.  More importantly, they expressed that the piece brought them optimism and hope.  Mission accomplished!

I am humbled to be one of Harris’ Heroes and delighted that our tale is resonating with others.  I am equally proud that our local news team stands committed to using its platform to give a voice to all of us in the community who are doing our best to do our part.  And in so doing, they’re proving that, even in a ratings-driven environment, there’s no such thing as a downside to reporting good news.

And that’s worth tuning in for.

Tuesday, February 25, 2014

Eyes wide open

Sunday night was a turning point for me.  For the first time, I articulated a fact that while never spoken, and certainly never fully accepted by me, is still true.  My disease is going to continue weakening my body and it’s not going to stop until it kills me.  It’s a battle that can’t be won and to which there is only one conclusive and indisputable outcome.  My death.

Around the end of high school and on through college, I lived life operating under the belief that the progression of my disease had stopped.  My doctor’s never confirmed that it had plateaued, but they didn’t dismiss the possibility and certainly couldn’t deny that my strength and physical ability hadn’t seemed to diminish much over that period of time.  And so, ignorantly, I chose to believe that while muscular dystrophy had robbed me of my ability to walk, to dress myself and to do a whole host of physical activities, it wasn’t going to rob me of anything else.

But I was wrong.

Since college, my life has been filled with more blessings than I ever deserved.  Namely, I married the love of my life, became a father twice over, enjoyed some professional success and bought a house.  Not too shabby.  However, physically, that same period of time has been filled with numerous surgeries, severe loss of lung capacity, significant weakening of my body, a yearlong bout on bed rest and the overall challenge of trying to figure out how to live with less strength and ability.  It reminds me of the classic line: It was the best of times, it was the worst of times.

Only now I know there’s more to come.

We all love a good underdog story.  And so far, mine has been nothing short of incredible.  I’m the son of an immigrant, was diagnosed with a neuromuscular disease during childhood and was raised in a broken home.  Along the way, I shattered barriers, completed my educational, familial and professional goals.  All that and I usually have a smile on my face, a joke to tell and an appreciation for how good things are.

But as it turns out, great stories don’t always end the way we want them to.

There is a spectrum of physical wellness on which I have, and continue, to live my life.  The problem for me is that every day I inch closer and closer to the wrong end of that spectrum.  It cannot be helped.  It simply is what it is.  The real issue though is that there is a certain point along that spectrum, which, when reached, is the tipping point when I will transition from living life to simply being alive.  When I reach that point, I will very much be like a person stuck on life support.  I’ll be here, but I won’t really be me anymore.  And though I’m not afraid of dying, the thought of “living” like that is terrifying.

And so it is that I have to live right now.  I have to pour whatever strength I have left into making my mark.  I need to do all I can to create a lifetime worth of memories, stories and happiness for Casey, Isabelle and Sammy to hold on to after I’m literally or figuratively gone.  I need them to know how much I love, treasure and adore them.  I need to show them and make them understand how, because of all they have given me, my life has had true value.

I need to get in front of as many people as possible, impact lives and inspire others to have more joy.  I need to be a better person and be more sincere.

I’ve gotta be me.

Now, please don’t interpret this post as me checking out.  This is not my swan song.  In fact, my plan is to live as full and long of a life as possible.  This post is just the acknowledgement of my recognition that the window of opportunity for me to truly live is limited and closing faster than I’d like it to.

I’m 36 years old and I’m dying.  I know that now.  And even though I don’t like it, it’s going to be ok.

Maybe the good guy doesn’t always win, but that doesn’t make the story any less remarkable.

Wednesday, February 19, 2014

The importance of a win

I’m a little embarrassed to admit it, but when we recently won our first basketball game, I was so happy I felt like I was going to jump out of my wheelchair.  It may seem silly to have been filled with so much excitement, after all these kids are in first and second grade so it’s not like it was the NBA championship, but I couldn’t help it, I was so stoked!

In thinking about it, I realized that the happiness that came from that win had to do with a few things.  First, I was delighted for the team.  Our girls have worked so hard all season and while they’re improvement has been nothing short of amazing, that first win had eluded us for a long time.  They’ve poured their hearts into each game and they absolutely deserved to experience the thrill of winning.  And when they did, I was so ecstatic for them that I couldn’t stop smiling.

I think another reason why the win meant so much to me is because I’ve been going through a bit or a challenging time lately.  And sometimes, when you feel like you’re really in the thick of it, a win, any win, goes a long way.

When things aren’t going so well, it’s easy to feel like the world is against you.  You miss a traffic light, you discover you’ve run out of your favorite snack after the grocery store has closed for the night and the DVR programming messes up and records the wrong show.  They’re minor things, but when you’re struggling to keep it together, it all feels like a big deal.

And so, we find ourselves looking for something to break our way.

I’m not sure that any of us truly understands why it is that we’re “chosen” to go through whatever it is we’re dealing with, which can make things particularly hard.  As humans, we want to know and understand why things do or don’t happen.  Turns out though, it isn’t always ours to understand.  Great.

So where do we go from here?  What do we do?

Although it flies in the face of all that is logical and makes sense, we must never give up.  We’re allowed to get down, but we can’t allow ourselves to stay there.  Like the girls on my team, we need to do our best even when we’re losing and then keep going.

Eventually, our win will come.

No one can definitively say how things will or will not work out, but I’m going to do my best to keep pressing forward and I hope you do too.  Maybe we’ll get there together.

Monday, February 10, 2014

Buttoning up my pride

I ran into an issue while getting ready for church last week.  Like every week (and every day for that matter), Casey picked out my outfit.  Unfortunately, the pants she picked out for me, which I hadn't worn in a long time, proved to be a bit of a problem for me.

As the pants came up, the contour of the fabric hugged my legs like a long lost friend (What? Your friends don't hug your legs?).  It was great.  They made it over my booty just fine too, but then something strange happened.  They wouldn’t button.  Try and try again, it was no use, the waistline of my pants refused to stretch across my keg-like abs.

Casey looked at me and I looked back at her.  We both knew what was going on, but neither of us wanted to say it.  But a few moments later, I worked up the courage to say what I knew we were both thinking: “You shrunk my pants!”

As it turned out, Casey had a different theory, which she, seemingly gleefully, was all too eager to share with me: “You’ve gained weight!”

Technically, she was correct.  I have, in fact, per my doctor’s orders, gained weight.  But have I tacked on enough jelly in my belly to preclude me from buttoning my former favorite pants?  Sadly, the evidence against me was compelling.

In thinking about the experience, it’s hard not to feel like a total fatty.  I’m forced to question the wisdom of medical advice that would have me eating chips and dip every night before bed and cold pizza for breakfast (I made that last one up, but boy that would be awesome).  And I cannot help but wonder if the newer, chubbier version of myself is the real me I want to be.

But then I considered all the facts.  I haven’t had a single pressure sore since the weight came on.  I haven’t been hospitalized for pneumonia once since I chunked out.  In fact, overall, having a few extra pounds on me has helped me maintain good overall health.  All that and Casey says she digs on my meaty thighs and manly arms (TMI?). 

So, despite how much I’d like to be able to button all of my pants, maybe life is better now that I can’t.  Sounds weird, but I’m thinking it may actually be true.

It seems that, in life, none of us get to choose the particulars of our every situation.  Most often, through no fault of our own, we’re forced to suck it up and take the good with the bad.  And while we won’t typically have the luxury of selecting the details of our circumstances, each of us maintains the responsibility to accept the realities of our respective situations and the resilience needed to deal with it accordingly.

So with that in mind, I’m in the market for some new pants.

Now pass the chips!