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Good morning.
When I was 10 years old,
I fell so hard out of the tree-house I was building, onto my back,
that it knocked the wind out of me.
One minute, I was the wise guy 5th grader,
and the next minute,
I'm like a big fish flailing about on the bottom of a boat gasping for air.
As I lay on the ground trying to catch my breath,
my friends were around me asking me if I was OK.
Clearly, I was not.
But eventually, I did catch my breath, I got up, and went back to work.
Nothing unusual about this - I was a kid, that's what kids do.
As an adult, I've also had those moments,
where I have fallen on my back and wasn't able to catch my breath.
And while in more of a figurative sense,
the fear and the pain that I felt,
and the worry of not being able to continue are very real.
When my daughter Rachael was 5 years old, she became very ill with fever.
She had to be hospitalized, lost a bunch of weight,
and we found out that she had type 1 diabetes,
which meant that she had to have regular injections of insulin,
and have her fingers stuck with a device to test her blood sugar.
As a dad, having to jab my daughter's arm with a syringe,
and regularly poke her fingers to draw blood, gave me a quick dose of reality.
We both survived, and it's amazing to me today what becomes normal.
A short time later,
my sons Matthew and Patrick were diagnosed with Duchenne muscular dystrophy.
Duchenne muscular dystrophy is an inherited disorder,
which involves rapidly worsening muscle weakness
which affects all body systems, as well as all muscles, including the heart.
Imagine being five or six years old,
and everyday someone is adding a heavy book to your backpack,
and you're wearing these heavy boots like a fireman,
and another person is pouring sand into them.
You fall unexpectedly because you're weak, and you don't have any balance,
while your friends are still able to walk, climb, and run circles around you.
This is what my sons experienced.
The 'diagnostic odyssey' is how professionals describe
the journey that parents face,
when they're looking for the reason why their child is otherwise unwell.
I remember going to the University of New England,
and going through their medical library,
and looking up the term 'muscle weakness, '
and going through their neuromuscular textbooks.
The descriptions of the disorders were just as frightening,
as the outdated, black and white medical photos
of poorly deformed children.
I also turned to the Internet, and searched the term 'muscle disease, '
until I happened upon a video of a young boy,
using his arm to stand up straight because of weakness,
just as my son Matthew had been doing.
I knew at that moment
that Matthew had something called Duchenne muscular dystrophy.
It took a long time for me to catch my breath.
At home, it was hard for me to get up in the morning,
as I grieved the losses that my sons would have,
and the losses that my wife and I experienced
in the dreams that we had for our sons.
I realized at that point that I could not be helpful to my family,
so I forced myself to catch my breath, and get up, become involved.
When families have young children,
they often joke that they wish they had an owner's manual.
When you get a television, it comes with a 50-page booklet, often in 10 languages,
telling you how to use it, and what to do when it doesn't work.
Well, when you have a child who has a rare disorder,
the need for some sort of a guide is very, very crucial.
"What doctors should you see?" At any point, my family employs 15.
"What medicines should you take?"
And, "What's going to make this better?"
I had no choice. I wrote our owner's manual.
When Matthew was about five years old,
when he was in kindergarten,
he was attending a local parochial school.
And the school was not accessible to people with mobility impairment,
and they had no obligation to become an accessible school.
I'm a dad. Dads fix things, and I wanted to fix this for Matthew.
So my plan was fairly simple.
I figured I'd put together a fundraising committee, raise some money,
we'll buy and we'll install a lift
so that Matthew could stay in school with his siblings and with his friends.
The school was supported by a church.
I figured, well, geez, everybody would be on board with this.
To me, the only challenge would be in raising the money.
Now, when I'm wrong, there's no depth to how wrong I can be.
We were granted permission to raise money,
although the permission was not granted warmly,
and within two months, we had raised 30,000 dollars.
And this project was supported
but was abruptly stopped,
both by the local community and the local media,
It was almost as if they were saying to us:
and Matthew was left on the outside, looking in.
"We don't like what you're doing. You don't fit, please go away."
My family was really challenged at that point,
but unfortunately, there was none to be had.
as I tried to mediate a solution,
And I stopped the fundraiser,
and the committee returned the money to all the people who had made donations.
My wife and I were interested only in putting this nightmare behind us,
but I'm thinking to myself, all along at this time was -
this is an organization that has turned their backs on a little boy
whose family wanted him to attend their school,
as well as the community, who financially and publicly supported this plan.
We filed a successful complaint with the main Human Rights Commission,
and to make this long story short,
the school now has a lift,
and the church has a policy of non-discrimination
for people with disabilities in all of their programs.
This was probably about the longest time that I was on my back,
trying to catch my breath like I was still ten years old.
So what keeps me focused while I'm doing all these things,
all the activities that I'm involved in?
It's running.
But before that, let me talk about Matthew and Patrick a little more.
So Matthew and Patrick, when they were little,
and they heard about muscular dystrophy,
my family was really concerned with their ability to continue to move forward,
and to be able to do the things they wanted to do.
So we told them about advocacy,
the importance of self-advocacy.
And I always told them to do it in an appropriate manner
because I said to them
if it was expected, and that people wouldn't want to do so.
that they would not be able to expect people to help them,
And even at a time when we thought,
that Matthew and Patrick wouldn't be able to survive beyond their high school years,
I always told them they would go to college.
And so Matthew and Patrick were always told that they would attend college,
and that sitting on the couch at home playing video games,
was not my idea of an appropriate vocation.
Matthew attended the University of New England,
and was studying political science.
Patrick, too, has been very involved in school.
The one thing that I admire most about him is his love of music,
Patrick's passion for playing piano.
I truly enjoy listening to him play it,
probably as much as he enjoys playing.
So again, going back to what keeps me on goal,
is the techniques I have learned in distance running.
This helps me to stay focused on my tasks.
I've run 17 marathons; I'm 52 years of age.
This is the Verrazano-Narrows Bridge in New York City,
leading from Staten Island to Brooklyn.
I ran this race four different times, twice when I was 50.
The first time was when I turned 50 years old, on my birthday,
and the second time was the day before I turned 51.
It was quite a privilege,
to be able to run with 48,000 of my closest friends on my birthday.
A marathon is 26.2 miles,
and I never really think about that distance, until I board the bus
that takes the runners from the finish line to the start.
Then I think to myself,
"Oh crap, what am I doing now?"
But the same principles apply.
I've got to be prepared.
I cannot go to the race start
and expect to do well unless I'm properly ready.
Unless I've run several 18 or 20 milers,
I'm not going to feel as though I am fully prepared,
and I apply the same principles to the activities in which I am involved.
And even then, I break those up into smaller components.
I don't get out the morning of a long run,
and think about the entire distance,
I break it up into five-mile components,
and don't worry about the next one, until I finish the previous.
And then at the end, I start counting backwards.
I've got eight miles left, I've got seven miles left.
I apply these same principles to all the activities that I'm involved with,
so that it doesn't become overwhelming.
15 years ago, my family learned my sons had Duchenne muscular dystrophy.
Just four weeks ago, we lost Matthew.
Matthew died from heart failure because of his muscular dystrophy.
I've loved my family more deeply than anything else,
and Matthew's loss has been very, very difficult for me.
A week later,
I was speaking in Massachusetts at a pharmaceutical company,
about clinical trials related to muscular dystrophy,
and the following week, I was in New York City, working on a website
for families developing resources for muscular dystrophy.
I love Matthew dearly, but I realize also
that the disorder that took his life doesn't take a holiday.
Neither will I.
I enjoy being an advocate, being involved, and volunteering.
I ask you to consider doing the same thing,
and a lot of people will claim that there's not enough time that day.
Well, I'm here to tell you
there are 24 hours in each and everyday for all of us,
and how you manage that time
is the difference between being successful in that or not.
So finally, let me say that please consider being involved,
set more aggressive goals,
come up with a plan that allows you to complete those goals.
Look to successful people.
When you're knocked down, get back up.
With a successful person, did they stop when they failed?
Or did they keep going in believing in themselves?
In my life I've made a few waves,
and I hope to be able to continue.
And I ask that you consider doing the same.
Thank you very much.
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【TEDx】Fostering a mindset of no excuses and no limits: Brian Denger at [email protected]

610 Folder Collection
Miracle Lee published on January 17, 2016
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