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Finding real answers to the hard questions

Ralphy is my good buddy. He’s also my 21-year-old nephew and arguably the biggest role model in my life.

Ralphy
You see, Ralphy was diagnosed with brain cancer when he was two years old. And while he is fortunate that his particular type of affliction is not as aggressive and deadly as others, the impact those rogue cells have had on his life is immense. He can’t really see and struggles with a variety of motor skills, so playing sports is out of the question. He also struggles with memory and other cognitive functions. And these are, unbelievably, just the tip of the iceberg in terms of what he has to overcome on a daily basis.

And yet despite all of this adversity, Ralphy is one of the happiest and most fun-loving people you will ever meet. He’s almost always smiling, laughing, dancing, telling jokes and generally putting smiles on the faces of people around him. Which is what made the question he asked me yesterday so devastatingly succinct.

“Uncle,why am I disabled?”

The question froze my mind in its tracks as we ambled down Flatbush Avenue, making me momentarily forget all of the sunshine and happiness we witnessed in Prospect Park.

I suppose the stock answer lies somewhere between a religious platitude and a children’s nursery rhyme. Neither of those will fly for me. Ralphy deserves better. He deserves the truth.

And so I told him a little bit about genetics. About DNA. About cellular biology. I explained that sometimes the natural yet astoundingly complex beauty of evolutionary biology requires just a hint of randomness. Dumb luck. And that he was unfortunately the unwilling recipient of a genetic mutation that led to his present condition.

I also reminded him that as tough of a break as this was, he was fortunate to have working limbs, and a sense of humor, and an amazing appetite, and well, consciousness in general.

And he agreed.

Then he amazed me for the umpteenth time by reminding me about how he loves to help the less fortunate kids at his school. Kids that can’t talk, or walk, or think. He seemed sincerely thankful and mentioned that he relished the opportunity to help “his friends” out when they needed it.

I finished this particular conversation by mentioning that if it weren’t for an army of anonymous scientists and medical researchers he and others like him wouldn’t even be here today and that had he been born a 100 years ago he’d of likely had no chance at life. I made sure to remind him how these true heroes never make the evening news, never have an entourage, never get a red carpet gala, and are rarely wealthy. Heck, they are often attacked when their discoveries don’t align with previously established dogma, superstition, etc.

But I digress.

He seemed to appreciate my answer and so we left it at that for now. Then we got back to clowning around and talking about the more mundane things in life. Like which types of girls he likes the most and how we could work on getting him a steady job around town.

I also got to thinking about my renewed resolve to encourage my fellow digital marketers and analysts to donate their skills and their time to non-profits and other charitable and socially-benevolent organizations, so that we can help kids like Ralphy – and other disadvantaged members of society – get their fair share of the good life.

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  • http://twitter.com/JulieJoyce JulieJoyce

    I love this piece…I got into programming after starting out as a social worker working with adults with cerebral palsy, and I got off track because I got a job writing code and assistive technology was just not in the cards for me there. That experience is always with me though, and any time I start to really feel whiny, I think about what one of the ladies I worked with said when we were talking about what we wished for. People were saying a millon dollars or a new car and she said “I wish I could walk for one day in my life.” She said it without bitterness too, which is the best thing about a lot of people who live with various disabilities: they truly appreciate life. They’re role models for the rest of us, and I’m glad that you have him in your life. I’m glad he has you too.

    • hugoguzman

      Glad you enjoyed it, Julie. Good to know that I’m not the only one that has experienced such a painfully beautiful thing. Thanks for sharing!

  • Chris Stocker

    Thanks for writing this and encouraging people to donate their skills to NP’s. I’ve been doing this myself over the last 2 years and have been trying to get others to do it as well. I hear from people all the time that they don’t have additional disposable income to donate money, while drinking their $6 Starbucks drink (but that’s a whole other story for another time), but one thing we all have is time.

    Will be using this as another example of why donating skills to a NP can be just as important as financial donations.

    • hugoguzman

      You’re very welcome, Chris, and I’m glad to hear that you’re on the same crusade. Good stuff, man. Keep on keeping on.

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