Friday, December 4, 2015

Shout it out

I'm in the living room of my friend's house. I'm surround by friends, many of whom I just met tonight, and everyone is singing Handel's Messiah. Everyone but me. That's because, probably unbeknownst to my friend prior to this evening, I don't sing.

It's not that I don't like singing. I do. I just can't really do it. Literally. I really and truly lack the lung capacity to hold a note, let alone belt out Handel's Messiah. And that folks is why, if you want someone to give a kick butt talk, I'm you're guy. But if you're looking for someone to join the choir, I'm not the wheelchair dude you're looking for. 

But, what I lack in operatic skills, I make up for in heart and enthusiasm. And tonight, I'm feeling it. 

Engulfed in the surround sound of this beautiful piece, my mind is drawn to its composer. Talented, yes, but also a brother of sorts. You see, like me, Handel was disabled. 

Following a stroke, he could no longer play the keyboard and could no longer conduct. Physically, he was broken, he could give no more music to the world. 

And then it happened. 

He found the words. Those glorious words written by Jennens. And they called to him. Oh, how they called to him!

And he responded. 

Hallelujah! Hallelujah! Hallelujah!

Has there ever been a more famous or powerfully composed piece of music?

I'm listening to it now and my heart is full. 

"For He shall reign forever and ever!" "King of kings!"

Powerful. 

And so this man, Handel, who, though all stood around him to declare his masterful chorus, was never able to join in their physical exuberance, gave us all this incredible gift. 

I can only imagine that his joy, like my joy, in being surrounded by heavenly voices declaring heavenly praises in heavenly song, was as complete as mine is in this very moment. 

What a blessing it is to exceed expectation, to defy the odds and sing praises in the process. 

Shoot, I may stay here all night.




Sunday, November 29, 2015

Looking back...


Casey and I were watching home videos with the girls recently, and, as is often the case when you watch old videos, it was fun pointing out how much we've all changed. Things like Nubbins being a puppy, daddy having super poofy hair and how young we all were. But, of all the changes/differences, that we saw, none were more amazing to the girls than the ones they saw in me. 

No, it wasn't a weight thing. No, it wasn't a greying thing either!

What seemed to utterly shock and delight them was seeing me move in ways they had long forgotten. 

"Oh my gosh, Isabelle, Daddy's feeding himself!" "Whoa, Daddy look, you're leaning yourself forward!" And, "Mommy, Daddy used to move his arms to his controller without help!"

For them, it was incredible. They were giddy, happy and astonished - all at the same time. 

For me, the feelings were different. 

Seeing myself on that screen was surreal. In a way, it was like watching someone else; someone who looked like me, but wasn't. Like a stranger I once knew. 

We live life day-to-day. And because we take it in increments, we sometimes fail to see how much we truly change over time. It's only in looking back that we see how very different the "us" of today is compared to the us of yesterday. 

And sometimes, as was the case on this occasion, seeing those changes is hard. 

It's easy for me to want to be the guy I saw on that screen. Easy to want the strength I had, the independence I enjoyed, the mobility I took for granted. 

Wanting what we once had is natural. 

But then, I realized something I hadn't previously considered: To be that person again, I'd be giving up more than I'd be receiving. 

The person in that video hasn't struggled the way I have, he hasn't had the joy and fullfillment from leading his family in good times and bad and he hasn't grown, developed or improved the way I have. In short, despite how young, strong and vibrant I once was - in the ways that truly matter - I am infinitely stronger today than I was then. 

I do not know how different my life will be when, years from now, I watch videos taken from 2015. But, what I do know is this: Despite how physically strong (or weak) I'll be then, if I continue to strive to continuously improve, if I work on it day-by-day, I'll be a better man then than I am today. 

And that's something I look forward to seeing. 



Sunday, November 22, 2015

Reality check

When I first started blogging, I used to post every day. Then, I moved to once a week. Then I'd take a few months off and then come back and post regularly again.

And so it went.

Though the posting hasn't always been consistent, I've always tried to deliver something of value. Sometimes my posts are funny, sometimes they're sad; often times they're in between. But, always, what I write is genuine. 

Lately, I haven't posted much at all. Life has been pretty crazy since the move and somehow the blogging (probably along with a number of things) has fallen between the cracks. 

In some ways, I'm ok with it. After all, coming up with new content is challenging and sharing your deep, personal, private thoughts and life-happenings can be tough (like when I copped to liking romantic comedies, arg). 

But, other times, I feel bad about not posting more. I feel like I'm letting people down. 

My readers have been kind, loyal and generous and I appreciate greatly that you've let me know you miss the posts. In addition to letting you down, I feel like maybe I'm letting my girls down by not chronicling my/our life for them better. After all, this blog is really for them more than anyone else. It's my way of letting them know who daddy is and what I'm about.

In thinking about this back and forth of feeling ok, then bad, then ok, then bad again; I realized that this is life. Far too often, we take something that was supposed to be fun and easy and we turn it into something to feel bad about. We pick ourselves apart, convince ourselves we're letting everyone down and then sit back and wonder how we got stuck in the mire. 

It's silly. We know this, yet we all continue to do it. And though there's no silver bullet to stop doing it, I suppose acknowledging that it's happening is a healthy and helpful start. 

For me, that means blogging when I can and letting that be enough. 

What does it mean for you?

The fact is that, neither you, nor I, are letting everyone down. We may not always be all things to all people, but that doesn't make us disappointments to the world; it makes us human. 

I can live with that :)




Saturday, September 26, 2015

Riding dirty!

My wheelchair wasn’t designed to be an all-terrain vehicle, but I’ve never let that stop me from traversing through snow, four-wheeling across rocky terrain or running over countless people’s toes/feet.  Basically, I do what I’ve got to do to be where I’ve got to be – even if it means riding dirty!

Over the past few weeks, I’ve driven across some pretty hairy places.  Indeed, in my travels to the areas impacted by the fires in Northern California, ash, mud and burnt grass have become a new norm for my tires.  But it isn’t what I’ve driven over that’s left a strong impression on me.  It’s what I’ve driven through and what I’ve seen. 

I’ve driven through scorched landscapes, passed downed trees and through ash that hung so thick in the air it blocked out the sun.  And then there were the people.  I’ve seen the look on someone’s face after they’ve been told they lost everything.  I’ve seen people who evacuated so quickly they left without their wheelchairs.  I’ve seen cot, after cot, after cot filled with people who woke up homeless.

I have seen and witnessed, the worst days of people’s lives.

And yet, despite the soot and ash and heartache, what I have seen more than anything else is something I did not expect; love.

I’ve seen strangers line up to volunteer at shelters; trucks and cars packed full of clothing, food, toys and supplies for victims they’ve never met; and neighbors helping neighbors. 

I have yet to visit a single shelter without being received with kindness and generosity.  These people, who have lost it all, take time out – every time – to offer me a warm cooked meal, show me around and ask me how I’m doing.

And they open up.  They tell me about themselves and share their stories, which are always lined with hope, never despair. 

Ironically, because of their examples of courage, positivity and service, I feel like, in many ways, they’re helping me more than I’m helping them. 

And so it is that every night, when I go home, my head hits the pillow and before I sleep, I think of the people I’ve met.  I see their faces, remember their tales and think of where they’re sleeping.  I think about where I’ve driven and what I’ve seen.  I remember the love I saw and felt that day. 

And then I fall asleep – determined to wake up and fight even harder for those individuals (and the many I have yet to meet) the following day.  Because as one man told me yesterday, “we’re all family.”

You got that right, Bro!


Sunday, September 6, 2015

It doesn’t happen overnight

I’m sitting here surrounded by moving boxes – all of which are in various stages of being unpacked – and I can’t help but think that somehow this process of getting moved in is a metaphor for life.  As much as I’d like to get everything setup overnight, it’s a process; a hard, seemingly impossible at times and definitely slower than we want it to be, process.

And yet, we keep at it.

And so it is with each of us.  We all have a responsibility to do good, to be good and to strive to improve.  But never fear, for the power to change is within us.  We need not, and dare I say we must not, allow ourselves to remain as we currently are (though some of you are, I’m sure, scarily close to being perfect).  For I strongly suspect that there will be no greater blight against us than if tomorrow should come and find us as we are today. 

Let us ask ourselves, “What can I do to be a better husband, wife, parent, loved one or friend?”  And then, let us have the courage to do it.

Improvement will not happen all at once.  Remember, Rome wasn’t built in a day.  But, if we work towards it, brick by brick, we will build ourselves into monuments of goodness.

This is about the happiness that comes from the satisfaction of a job well done, the joy of serving others and the peace of a resting your weary body after a day spent working towards something of substance.

“I fail.  Every day I fail.”  You likely tell yourself that a million times over.  But tell yourself the following too: “At times I’m short with loved ones, impatient with strangers and slow to put others before myself.  But I’m trying.  And in recognizing my failures, taking out the chisel of humility and chipping away at my many imperfections, I am sculpting myself into something beautiful.”

Become your own masterpiece and the world really will be better because you’re in it.

And that, my friends, will be a life well spent.


Saturday, August 1, 2015

A warm welcome

Despite what you may think, trekking 3,000 miles across the plains is actually pretty straightforward.  All you need is your sweetheart, two angels, a couple of rascally dogs and a best buddy.  Once that’s squared away, just fill up your air-conditioned minivan and stuff every last available inch of space with everything that wouldn’t fit in the moving truck (which was surprisingly more than we had anticipated) and you’re ready to roll.

If I had to use two words to describe the trip out west, I’d probably use “a blur.”  It’s not eloquent, but it’s an accurate overview.  Time passed, the sun came up and down, rain fell, the sun shined, wind blew and thunder rolled.  And all the while, we pressed forward – Casey and Bryce switching off driving duties while the girls held things together in the back and I kept the navigating responsibilities locked down in the front passenger seat.  My directions were clear and infallible, “go west,” I said.  "Go west."

And we did. 

And as we did, this is what we saw...






In crossing the plains and seeing the sights, sunsets and majesty (yo, Nebraska, I’m being generous) of it all, I couldn’t help but contemplate my life.  And maybe it was the boredom of cornfields (yes, Nebraska, I’m still talking to you) or the tiredness that accompanies this type of trip, but I found myself thinking about everything that has led me to this point and feeling ever so grateful for having been on this wild ride of life.

Yes, it’s been rocky (to say the least) at times, but mostly it’s been wonderful.  My friends are true, my family is dear and my experiences have been transformative. 

Many years ago, I had a choice to make: I could get bitter or I could get better.  And having made the right decision, my life, despite its challenges, has been a joy.

Now, back to the trip...

Days 1, 2 and 3 were long.  We logged anywhere from 8-12 hours per day until we landed in Utah where we hunkered down for a few days. 

Utah was a welcomed respite as we visited family and got to catch up with friends from Virginia (all those miles to hang with friends from what’s now the old neighborhood).  What can I say?  It’s a small and crazy world.


Time passed quickly and before I knew it, we pushed off to California.  And 11 short hours later, we made it “home.”

Pulling up to my mom’s house (which is where we’re staying until we get set up) we were greeted with hugs, kisses and even a sign.  To say we felt welcomed was an understatement!  In fact, with an outdoor temperature of 108, it was the warmest welcome I have ever had.




And so it is that our voyage ended and our new journey began.  If it’s anything like where we’ve been or half as wonderful as what’s come before then I know it’s going to be a trek well worth taking.

And that, my friends, is a welcome feeling.



Friday, July 24, 2015

An angel in our midst

When I was 13 years old, my doctors told me I had to have major corrective back surgery.  Because of my muscular dystrophy, the muscles in my back had weakened and my spinal cord curved so severely it was shaped like an “S” and was compressing my lungs and my heart.  I was told the surgery would take 12 hours, it would be extremely painful and recovery would take months.  The news was terrifying.  

As you can imagine, the drive home was pretty rough.  And, with the exception of my mother’s sobs as she drove down the 101, it was quiet.

My mother, always a person of faith, offered a silent prayer.  “Dear God, show me you’re there.  Show me we’re not forgotten.  Show me you care and I know we’ll be able to get through this.”

Len Ellis
And that’s when it happened, Kathy, who was seated next to me, shouted out, “Look, it’s President Ellis!”  And sure enough, there was Len Ellis, a leader in our church and a dear family friend, driving along the freeway next to us.  He waved, gave us a loving smile and got off at the next exit.

And just like that, we knew everything was going to be fine (and it was).  On that day, and in that moment, President Ellis was, for our family, an angel on earth.

Years later, while attending BYU, I found myself in a rut, feeling lonely and uncertain about my future.  Far from home and not knowing what else to do, I had prayed for a sign to know things would work out.

And then it happened again; on my way back from class, I went up the hill leading to my dorm and there, directly to my right, was Len Ellis.  He still lived in California, but was in Utah on business and had decided to swing by the campus he had once traversed as a student many years prior.

Our visit that day was short, but sweet.  I confided in him and he comforted, counseled and encouraged me.  “There are no such things as coincidences,” he said.  And I knew he was right.  Once again, he was at the right place at the right time – an angel on earth.

It’s been many years since then and I now find myself at another crossroad in life as I’m moving my family across the country back to California.  And as we were packing boxes and coordinating moving companies last week, I received news - President Ellis was unwell.  His congestive heart failure had advanced and he was about to pass.  And suddenly, the chaos around me disappeared.  Our angel on earth was returning home.

I was able to speak with Jenn, his youngest daughter, and Elaine, his wife, who, though she doesn’t stand much more than 5’0 tall, is a monument of spirituality and strength.  And, though I had called to comfort them, it was actually they, who, in their generous way, comforted me.

And then he passed.

So it was in those circumstances that, just a few days later, I found myself crossing the plains in a packed minivan, thinking about life on a 3,000-mile journey.

As you can imagine, while I am excited and eager about our move, such a change naturally brings with it a certain amount of trepidation.  And, as always, during such times, it’s always wise to seek inspiration.  Interestingly enough, it came via Facebook.

While checking my phone, I came across a post from Brian Ellis, one of Len's sons, informing friends and family about funeral services for his father.  And wouldn’t you know it, they were being held in Utah, just 40-minutes away from my mother-in-law’s house on one of the days we were planning to rest there.

Casey and I attended the service, which was a celebration of his life.  Like him, it was beautiful.  And like him, it was inspiring.  I arrived feeling sad and carrying a heavy load.  But I left feeling encouraged, uplifted and reassured.

I don’t know how he did it, but once again, somehow, in the hour and moment of my need, Len Ellis just happened to be there to let me know that God loves me and that everything is going to work out well.

I felt him yesterday.  It was just as real as when I had seen him as a scared 13 year old and a concerned college student.  The only difference was that this time, he wasn’t an angel on earth; he was an angel in heaven.

How grateful I am for Len's influence and to have known, loved and been blessed by my association with him.  Because of him, I, like countless others, am a better person.

Rest in peace dear friend, you’re home.


Tuesday, July 7, 2015

Teeth beware!


You know how people say that doing something hard is “like pulling teeth”?  Well, in my house, pulling teeth is like, well, pulling teeth – that is to say it’s very challenging.  The problem for us has been that, anyone who can do it, doesn’t want to.

I lack the strength to do it, so, I’m out.  Casey lacks the constitution (she gets queasy) to do it, so, she’s out.  And neither of the girls have been keen on doing their own dirty work, so, they’re out.

And yet the kids keep getting loose teeth.

Recognizing that this was going to be an ongoing issue, we sat the girls down, laid out the problem and explained that a solution was needed.  Someone was going to have to step up.

Enter Sammy.

She doesn’t look like much (in terms of physical strength), but it turns out that kid is freakishly strong!  And when it comes to pulling teeth, lets just say enamel doesn’t stand a chance.

The first tooth she pulled was her own.  She was nervous, but she knew it was go time and in the clutch, she didn’t disappoint.  She took a deep breath, clamped her vice-like fingers on each side of the offending molar and yanked.  After that it was off to the Tooth Fairy for straight cash money.


The kid’s got such serious skills that she pulls all Isabelle’s loose teeth out too.

Such was the case twice (yes, twice) last week when Isabelle approached us with news of loose teeth.  We all knew exactly who to call; Sammy to the rescue!

Open, clamp, pull; open, clamp pull.  And just like that, two more teeth bit the dust.


So to all the molars, incisors and bicuspids out there, you need to know something: Sammy has a very particular set of skills.  Skills she has acquired over a very long career.  Skills that make her a nightmare for teeth like you.  If you fall out on your own, that'll be the end of it.  She will not look for you, she will not pursue you, but if you don't, she will look for you, she will find you and she will pull you.

So be afraid.  Be very afraid.


Monday, June 29, 2015

Homeward bound

When Casey and I were first married, our plan was to live on the East Coast for about a year and a half and then move back to California where we’re both originally from.  However, as we got closer to that timeframe, I got a feeling inside me that we should stay put.  Because the impression persisted, I approached my sweet wife and shared it with her – we were a partnership and would decide all things together.

With love in her eyes, she looked at me and said, “Oh, I’ve been thinking that for weeks.  I was just waiting for you to say something.”

And that’s how it typically works in our family, Casey figures things out and then waits patiently for me to catch up!

Well, we did stay on the East Coast, and 12 years later we’ve built a beautiful life together with two wonderful daughters, two rascally dogs and a slew of great friends. 

And just when we thought we had it all figured out, life did what life always seems to do whenever you’ve got a firm grip on it – it changed everything.

The long and short of what happened next is, for the first time in a long time, we found ourselves uncertain about where our hearts told us we needed to be.  So, we did what has always worked best, we counseled together, prayed together and asked our friends to do the same for us.  We did.  They did.  And the answer came.

It came in the form of an opportunity.

Richard Devylder, a pioneer in the disabled community, retired from his position as Chief for the Office of Access and Functional Needs (OAFN) at the California Governor’s Office of Emergency Services.  Despite the long title, the position read like a dream job for me as it centers on integrating the needs of the disabled within California’s emergency management planning systems. 

The more I learned about the job, the more excited I became.  So, I took a chance, followed my heart and with Casey’s support, tossed my hat in the ring.  What followed was months of emails, letters, interviews and waiting until last week when my phone rang...

Guess who’s moving to California!

I’m proud to inform you that Governor Jerry Brown has appointed me to serve as the new Chief to carry on the legacy of Richard Devylder.

And so it is that, once again, my heart and mind, along with Casey’s and the girls, know exactly where we’re supposed to be and what we’re supposed to be doing.

After more than a decade, it’s time to go home.

The only thing better than that is knowing that we’ll be packing up all the joy and happiness we experienced here and taking it with us.

That, and water.  We’re taking lots of water.


Sunday, June 21, 2015

More than just a day


I woke up this morning to the sounds of quarreling children, nothing big, but definitely arguing.  And while that would normally bother me, today it didn’t.  After all, today is Father’s Day and those are my kids, my angels, my heart’s sweet delight.  And because they’re mine, and I’m their father, I’m the luckiest guy alive.

But, for me, Father’s Day was not always a day to celebrate.  In fact, it was often a reminder of a day I would have much preferred to forget.

I was seven-years-old and had only recently been diagnosed with muscular dystrophy.  My mom, sisters and I arrived home late from an all-day series of medical appointments.  It had been dark for hours and we were exhausted.  I entered my house through the front door, looked down to my right, saw suitcases and knew something was wrong.

The mood became tense and heavy; my exhaustion was replaced by a nearly palpable sense of concern that no child should ever experience.  Things went from bad to worse and ended with my father driving his car down the street and out of our lives.

His car had a noisy engine and that night it roared particularly loud.  Listening to the thunderous sound of his engine fading into the night, I knew he wasn’t coming back.

We were on our own.

And so, on days like this, my life sometimes feels as though it would read like a Dickens novel, “it was the best of times, it was the worst of times.”  Interestingly though, as more time passes, the good days have proven to far outweigh the bad.

Take today for instance.

As soon as I got up, the girls stopped bickering and got busy wishing me a happy Father’s Day – hugs and kisses galore!  I got cards, gifts and bacon and eggs (big ups to mama bear).  At church the girls sung me a song and when we got home, Casey cooked me the best steak I ever ate and Sammy made me pecan pie (that kid has serious culinary game).


 
 


But even more than all that, they showered me with love, appreciation and kindness.



In thinking about their goodness, I couldn’t help but let my mind drift to the days when each of them was born.  To holding them, kissing them and telling them I loved them for the first times.  I thought about reading books with one on my lap and the other on my feet, seeing them crawl, walk, run and ride bikes.  Helping them read, write and do math – and, of course, the endless hours I’ve spent singing, laughing and dancing with them on my wheelchair.

And in so doing, my heart filled with the unending joy I call fatherhood.

I can’t say for certain why my father chose to bail on me, but I can tell you with absolute surety, having experienced the jubilation of raising my girls (and I’m not even done yet!) that in ditching out on his kids, my old man left an eternity’s worth of happiness on the table.

And seeing that, I am hit with the awesome realization that, more and more, when it comes to my own experience as a father, there is no such thing as the worst of times.

Indeed, for me, life as a daddy has, and continues to be, nothing but the best of times.


Thursday, June 18, 2015

A New York state of mind


New York means a lot of different things to a lot of different people.  Some see it as a melting pot, others as a financial capital and others still as the bright lights of Times Square, but for me, New York is all about one thing; love.

When Casey and I met, she lived with my sister right across the river from Manhattan on Roosevelt Island.  Because I lived and worked in DC we almost never got to see each other during the week.  Instead we spent weekdays talking on the phone until all hours of the night and looking forward to the weekend when we’d get to spend a precious couple of days together.  Because it worked out better for me to travel to NYC then for her to make it to DC, I logged a whole lot of miles cruising up and down I-95.

A typical trip consisted of me leaving my office around 5pm(ish) on Friday and with my care attendant, heading North for 5 or 6 hours until I made it to her apartment, usually close to midnight.  Upon arriving, we’d make out (I mean hang out) for a while before retiring to our separate quarters for the evening, spending Saturday together and then driving back to DC on Sunday.  Week after week it was the same routine and, week after week, I fell more and more in love with her, which meant it was always harder and harder for me to leave.   And just when it felt like I couldn’t muster the strength to tear myself from her side one more time, we got married and never had to say goodbye again.

12 years have passed since then and while we’ve gone back a few times to visit, it’s only until recently that we took the girls now that they’re old enough to see where the story of us started.

We were only in the city for a day so we couldn’t pack it all in, but here are a few of the highlights:

Central Park




The Roosevelt Island Tram




Skyscrapers



As much fun as it was getting to show the girls our old stomping ground, for me, the best part of the trip, ironically, came on the drive home.  It happened about 30-minutes in when I looked at the overhead mirror and saw the girls reading books sweetly in the back seat and then gazed to my left and saw Casey navigating us through traffic with the cautious, deliberate care of a mother hen protecting her brood.  And it hit me, we were going home together, there were no goodbyes, there was no sadness, no painful waiting until we could reunite again in a week’s time.

We were together.  For then, for now and forever.

How grateful I am for what NYC gave me.  It's something I can never repay.  Skyscrapers, parks, trams - yes, yes and yes.  But love, my friends, always love.

And if that’s a New York state of mind, then I'm it!




Tuesday, June 16, 2015

A messy glimpse at the future

It’s been said that if you want to see tomorrow, you need look no further than the youth of today.  And while there are plenty of people out there who will tell you that, based on the Millennials, we have much to fear; I disagree.  In fact, my experience interacting with the upcoming generation leads me to believe they are smart and capable.  What’s more, they are good and should be celebrated, which is exactly what I did.

A few weeks ago, Casey and I hosted a party for the students from the youth Sunday School class I used to teach.  And guess what?  Not only did they show up, some even brought their parents.  That’s right, instead of ditching us to text one another at the mall or lose themselves in the angst of the moment, these teens came and hung out at our house.

So how do you entertain a group of teenagers in a world of Facebook, Snapchat and Instagram?  Simple, all you need are some eggs and water! 

Let me explain...

You’ve heard the expression that there’s no need to recreate the wheel?  Well, when it comes to having fun, that’s exactly how I feel, which is why, when trying to come up with some fun activities to do, I ripped off Jimmy Fallon.

On the Tonight Show, Jimmy plays a game called “egg roulette” and another one called “water war.”  Both are messy and both are fun.

Egg roulette is when you put six eggs in a box and take turns smashing them on one another’s head.  Did I mention that while three eggs are boiled, three are raw? 



Water war is when you take a deck of cards and play “war,” where each player flips over a card and the highest one wins.  Did I mention the loser gets a cup of water thrown in their face?  First one to douse their opponent four times wins.




As you can see, all had a good time.  And isn’t that what being young is all about?

After all, they’ll be busy saving tomorrow soon enough.




Thursday, April 23, 2015

Gone too soon

Last Thursday night, I took the girls with me to an MDA reception on Capitol Hill.  The venue was nice and the food was tasty, but it’s only until today – one week later – that I’m realizing it was an unforgettable event.  Not because of the program, which was good, but because it marks the last time I got to see my sweet friend, Ben Cumbo IV, who had muscular dystrophy and, sadly and unexpectedly, passed away this week at the age of 27.

Receptions can be tiring and when I saw him, I pounced on the opportunity to get out of talking up strangers (all of whom were very nice) long enough to visit with my buddy.  Ben seemed a little tuckered out, but that didn’t stop him from being himself, which is to say he was funny, charming and real.

We talked about his recently completed Master’s degree in Middle Eastern Studies and I immediately thought about the countless hours he had put into learning Arabic.  He was constantly studying and it was the first time in forever that I hadn’t seen him carrying a thick book with foreign-looking letters on his lap.  Yup, Ben was a reader with a sharp wit and an eagerness to debate.  But on that night, unlike so many others like it, he wore a look of relief about school, not stress.  He had thrown down the gauntlet, bested the beast; he was a graduate.  A master.  And his relief was well deserved.

I congratulated him and we talked about work and the future.  As usual, he had a plan; Ben was going to conquer the world.  And had father time not been so stingy, I suspect he could have.

Over the years we served together on numerous panels, taskforces and advisory groups.  We played off each other in front of large groups.  Ben quoted Nas, I quoted Tupac and silently we laughed as highly educated and usually out-of-touch audience members praised us for reciting what they assumed were classic works of prose.

And that was Ben.  Half intellectual, half gangsta – all heart.

He was dedicated to helping others, encouraging to those around him, hard working, committed to excellence and hopelessly hooked on politics.  And though we weren’t best friends, we were close.  We goofed off at telethon, talked about homeland security and laughed a lot.  He confided in me about dating and I told him about being a husband and a father – something I hoped he would get to experience someday.

He was my friend and I miss him already.

As a person of faith I know my days with Ben haven’t ended, they’ve simply been postponed for a while.  The next time we hang it will be by the Pearly Gates.  I expect Ben will be swinging on them and, ever the teacher and friend, he’ll be anxious to show me how it’s done.

But until then, I’ll miss him, think of him and revel in the memories.

You did good young man.  You did good.


Sunday, April 5, 2015

A smashing good time!

I'm not big on major celebrations, but after this year's Easter festivities, I may be a new man.  My recipe for a great time: Eggs, dear friends and a great big mess.  That's right folks, it turns out that nothing says "Happy Easter" like an intense game of egg roulette!

Big ups to Bryce and our anxious smashers (and kudos to Jimmy Fallon for the inspiration)!

Hope everyone had an equally eggtasticly great celebration.


Wednesday, March 11, 2015

The power of example


Growing up I wanted what most people want, to go to college, start a family and have a successful career.  However, because I was growing up with muscular dystrophy, it was hard for me to imagine that that type of future was possible.

Along the way, my friends and family tried to support and encourage me by saying that despite my disability, I could still fulfill my dreams.  As much as I appreciated their kindnesses, it was hard to believe that what they were telling me was true.  In large part, that’s because I never saw anyone “like me” enjoying those types of successes.

We take the power of example for granted.  After all, many times it is only after seeing others succeed that we are able to develop the confidence within our self needed to achieve our own dreams.

We celebrate the firsts – the first man to walk on the moon; the first woman to win the Nobel Prize; the first anything (minority, gay person, disabled individual, etc.) to do something extraordinary.  We do so because their example empowers and inspires us to believe that we too can be great.

On the flip side, not seeing anyone “like you” accomplishing great things sends the opposite message.  It tells you you’re not good enough and you never will be because people like you aren’t meant to make it in life.  It’s a terrible and debilitating message.

Despite my hardships I did go to college, I got married, established a family and carved out a successful career.  In doing so, I’ve been fortunate to lift others with me through my example.

It’s an odd feeling when you find out that your example has inspired someone or given him or her a strength they didn’t know they had.  It’s something that I’ve heard at different times throughout my life and it always fills me with gratitude and humility.

I’ve never tried being positive or having a good attitude with the intention of inspiring others.  I have however, consciously decided to live as full and joyful a life as possible.

The way I see it, I can be upset and bitter about my circumstances or I can choose to be positive; either way I’m still going to be sitting in a wheelchair.  Another way to look at it is like this: I can let life pass me by or I can lead the parade.

So here’s to finding the example that gets you there.  Better yet, here’s to being the example that lifts others.


Tuesday, March 3, 2015

All about the benjamins


I speak to a lot of different groups; doctors, families, policy makers, etc. but my favorite groups to address are disabled youth.  And when I talk to them, I tell them one thing: GET RICH!!!

Do I say, “be strong, be positive and chase down your dreams?”  Sure I do.  And that’s all well and good, but nothing is more important than telling them to chase down that almighty dollar.

My message goes a little something like this:

“When compared to the disabled, ‘walkers’ (the term I use to describe able-bodied people) get to live life on the cheap.  It’s extremely unfair (but so is having to live life with a disability).  Accept your reality or it’ll run you over.”

It sounds bitter.  It’s not.   It’s more of a scared straight thing.

Consider the following:

My walker neighbors take the bus and metro to their respective jobs downtown.  They pay $10.00 round trip.  Travel time is approximately one hour each way.  I have to use MetroAccess (the “accessible” public transportation service).  I pay $14.00 round trip.  Travel time can be two hours each way, the drivers are often rude and the service is very unreliable.

What about personal transportation?  A walker will pay $30,900 for a 2012 Toyota Sienna.  I bought mine for $60,000.  The difference?  Mine has a small ramp and is missing the middle seat (incidentally, the ramp broke last week and it cost me $1,000 to repair).

Medication?  Walkers pay $5 for a bottle of Tylenol to reduce pain and fever.  I pay over $150 out-of-pocket each month on prescription medicines to stay alive.

Attendant care?  Walkers dress themselves.  The disabled pay attendants $18 per/hour to pull their pants up (in addition to being expensive, finding someone good takes a miracle.  Casey does it out of the goodness of her heart, not for a paycheck – though she’d take one if I could afford it).

Let’s not forget about the $45,000 hospital bed (not a joke), my $23,000 wheelchair, the two different breathing machines and my slew of durable medical supplies I have to order on a monthly basis.

So, yes, I tell those kids to get rich – because my life, and their lives, costs significantly more to live than yours.

You’ve heard of “Get rich or die trying.”  Well, for the disabled, the options are fewer, so, for us, it’s really more about getting rich or accepting having to live off the government for the rest of our lives.  It ain’t pretty, but it is what it is.  And they need to know that.  Because for the disabled, there’s really no such thing as in-between.

So I tell them to aim for the dollar sign and then explain that in order to hit their mark, they’re going to have to push beyond their limits, get an education and tackle work with ferocity, fervor and passion.

And that is what I call getting it done.

Then I remind them that even though the financial scales are tipped ridiculously high against them, they can smile because at least they still get the benefit of good parking spaces.

See, it's not all bad.



Friday, February 27, 2015

Fast and furious

As a child, the worst part of going to church was having to wait for what felt like an eternity for my mom to finish talking to her friends so we could finally go home.  Despite my pleadings with her to wrap it up, we were almost always among the last congregants to leave. 

These days, services are in the afternoon and they go for three hours, which means that just like when I was a kid, I try to bounce out shortly after the last “amen.”  However, just like when I was a kid, the lady of the house sometimes thwarts my plans for a quick exit.

Though such situations are not dire, they leave me vulnerable to succumbing to the dangerous combination of being hungry, bored and tired (the Holy Trinity of impatience).  Such was the case last week.

With Casey engulfed in deep conversation, the girls and I decided to wait for her in the van.  After sitting tight for a while, I fell victim to my own impatience and found myself asking the strangest and most irresponsible question I have ever posed a child:  “Isabelle,” I said, “Do you want to drive?”

Hungry, bored and tired.  The Holy Trinity of impatience had struck again.

Before I knew it, Isabelle had fired up the van and was eagerly seated and ready to go with her hands on the wheel at ten and two (the kid is a natural!).

My plan, if you can call it that (stupor of thought would be more accurate), was to have her back the van across the nearly empty parking lot.  We checked behind to be sure we were clear.  We were.

“OK sweetie, pull down on the gear shift and move it from ‘P’ to ‘R’.”
“It’s stuck.”
“Pull harder.”
“It’s still stuck!”

That’s when it occurred to me...

“Put your foot on the brake THEN pull the gear shift down, then take your foot off.”

She did as instructed.  And it worked.

“DADDY!!!”

The car flew backwards, jarring Sammy (who had come upfront to get a close-up view of my driver’s ed lesson) and freaking out Isabelle and me at the same time.  Because we backed up so quickly, I thought Isabelle had depressed the accelerator on accident.  Why else would be moving?

Maybe it was because I’ve never driven a car before or maybe I was simply confounded by my vulnerable state of mind, but whatever the reason, I had completely overlooked the fact that we were parked on an incline.  As it turns out, gravity works.

Wanting to stop, but worried she’d hit the gas, I said: “Put it back in park, PUT IT BACK IN PARK!!!”

As she had before, Isabelle did as instructed.  And, in what can be described as an eternal couple of seconds, three things happened:
  1. The van made a horrible sound
  2. We came to a very abrupt stop
  3. Both kids lost it

Tears flew, words were spoken and hugs were given.  Everyone was safe.

And that’s when Casey decided it was a good time to stop talking and came over to check on us.  We got to go home, but on the way there she made it abundantly clear that my days as a driving instructor were over.

Probably a win/win for everyone.


Wednesday, February 18, 2015

Man Book Club – It’s real and it’s awesome



I’ve been hearing my wife talk about “book club” for years.  To hear her tell the tale, book club is a magical time when she and her friends come together to indulge themselves in good food and quality discussion revolving around all things literary whilst leaving their husbands at home to toil for themselves.  It sounds amazing, unless of course you’re a dude and are therefore not invited to participate.

As a survivor of book club discrimination, I’ve had to endure seemingly countless evenings of lonely hardship while my wife is off living the high life with her intellectually minded gal pals.  As if the abandonment wasn’t bad enough, I’m then forced (by threat of landing myself in the dog house if I don’t) to listen to her regale me with the fabulous stories of her book club extravaganza.

Sure.  I can take it.  But what about the sad little reader inside me who desperately longs for inclusion, an edible delectable and the opportunity to share his inner thoughts on the central meaning of a given passage?  What’s to come of him?  I’ll tell you; he’s doomed to wither away like the plight of some worthless side character long forgotten and largely unmentioned in elitist book clubs by wives everywhere.

Some of you may be thinking that this is a non-issue – that if husbands want to join their wife’s book clubs they should simply ask to be included.  Well, you’re wrong.  I’ve tried and it doesn’t work.  I asked Casey if I could attend her next book club meeting and she said, “Sure, but we only meet at places with lots of stairs.” 

Yeah, I think I see what’s going on here...

Then she said, “OK, you can come, but you have to read The Rosie Project.”  Can you believe the kind of discrimination I’m up against on this!  She’s saying I can join, but first I have to read a charming tale about a delightful man with asperger syndrome on a quest for love.  No way.  She may as well demand a million bucks.  The price of admission is too high.

Out of options and desperate to save the inner reader inside me, I reached out to my friend Trent.  I was heartened, though saddened, to learn that he shared my pain.  He too wanted to read.  And so it is that, together, Trent and I have joined forces to liberate the inner reader of husbands everywhere by forming an all-male book club.

Here's how it's going to work, the first rule of Man Book Club is: You do not talk about Man Book Club.  Wait, that’s a different club.  Our rules are as follows:

1. The books won't suck and they can't be girly (Jane Austin is not allowed)
2. We'll read one book per month
3. Meetings will have AWESOME food and will mostly include hanging out
4. Listening to audio books or watching the movie counts as having read the book
5. Bros only

So, if you’re a dude and you’re dying to free your inner reader (or you just want to hang out), consider yourself liberated.  Your time has come.  Take my hand and follow me to intellectual freedom!

Just don’t forget to ask your wife first.