Like a Rock

I was eighteen
Didn’t have a care
Working for peanuts
Not a dime to spare
But I was lean and
Solid everywhere
Like a rock

Like A Rock, Bob Seger

I think readers of this blog will agree with me when I say that my life has been a roller coaster. Not the ups and the downs, everyone has those, but it has certainly been a wild ride. In and out of hospitals, making it through three heart operations, having a cyst taken out of my brain, Endocarditis, a stroke, getting (and replacing) a pacemaker…a lot more than the average guy. I’m also a part of medical history: I was only the fifth Glenn shunt successfully done at Johns Hopkins, and the first to be physically active.

I’ve been to Washington DC, Durham, North Carolina, and Boulder, Colorado to support Congenital Heart Defect (CHD) survivors; I’ll be in Florida in a few weeks and then back to DC. In late July I’m planning to be at Hearts Re-United 2010, a CHD conference in Houston, Texas sponsored by Hypoplastic Right Hearts. And hopefully I’ll be able to do more advocacy in the future.

Thankfully, I only have a few regrets, but I was reminded of a major error this past week. The Alumni magazine of my college interviewed me for a series of profiles that they are writing (they publish once a quarter, so I have no idea if/when it will be published) and they asked me when I got involved in advocating for other Survivors of Heart Defects. And I hate to say that I never did a thing for CHD while I was in college.

The problem was that I was too healthy. My second heart operation was in 1977, and from then until after I graduated college in 1988, I was like a rock. I only had one problem with my heart that I can recall (and I did that to myself). I went into the hospital overnight for a Catherization but that was after I decided to have Surgery Number Three, so that incident wasn’t a medical crisis. I took an average of one pill a day, not the bucket of medication that I take now. I rarely thought about my heart, and because of that, I never did anything to support others living with Congenital Heart Defects.

And that’s a crying shame. We only had about 2,000 resident students, so becoming a campus leader would not have been difficult. And even if I decided not to do anything on campus, there was a pretty large regional hospital located right across the street. I could have easily offered to assist them in some way.

I’d love a chance to go back and do something regarding CHD at my college. A lot of the students will be married in a few years, and expecting children not long after that – they’re just the group to you want to try to reach.

And if the opportunity comes again, I won’t let it slip by.

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5 Responses to “Like a Rock”

  1. Gina Dyke Says:

    Give yourself a break!!! Seriously 🙂 If you were healthy enough to live a fairly “normal” college life, good for you! Seriously, the fact that you had a major CHD in college, and it didn’t consume all your daily thoughts is a positive thing! You are a gift to the CHD world now, and that’s all that matters!

  2. Lisa@All That and a Box of Rocks Says:

    Steve,
    I know exactly what you mean. Before Clint was born, I knew ZERO about CHD. Back in 1992, most people thought of computers and the Internet as something the government used or the very rich. There was no support, no connection to others living with CHD. At least, not in my world.

    I have similar regrets, because after Clint’s death, I put CHD on the very back burner, trying my best to eliminate it totally. I never, ever expected to be facing it again 13 years later.

    I don’t really do much when it comes to advocacy; I try to offer support online on various message boards and support groups. I could do more….definitely.

  3. Jan Says:

    Before 2004 I never did anything to promote CHD either. But now I am trying to do what I can and work my way into doing more. Maybe someday I will get asked to speak and I will do it. Until then I will do what I have been and try to get the word out there the best way I can.

  4. Traci Lisa Says:

    Hi!
    I came across your blog today. It’s so hard to find blogs written by adults about CHD’s! I think it’s wonderful and I think you shouldn’t kick yourself for the past. You’re a huge advocate now and the whole community is benefiting from your work.
    I have a 2 year old daughter, Cassidy, who was born with Tetralogy of Fallot w/ PA & MAPCA’s.
    I think blogs are a great way to get the word about about CHD’s and I commend you for what you’re doing.
    My husband and I are also on a mission to spread the word about CHD’s. We just started a jewelry company called Lucky 10. All of our products are handmade and pertain to Heart Defects and the Heart Community in general.
    Please check out our site when you get a moment. If you could help us get the word out about our new business we would be very grateful. It’s a project that’s very dear to our hearts.
    http://www.lucky10.etsy.com
    Thanks so much and we look forward to reading more on your blog!
    Thanks,
    Vito Lisa

  5. Anonymous Says:

    You living like that in the moment is the best advocacy i can think of!

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