Not “How to” But “How Did I” Transcript

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This is a transcript of part one of my story in podcast form, click here to listen


Not a “How to” But a “How Did I”….
Technology Gave My Children Better Lives
Chapter 1

Hi, everyone. I’m Deborah Carney. I am the host of several podcasts that some of you may listen to, AffiliateABCs.com, BloggingABCs.com, and more. Today, I’m going to have a special edition. We’re going to call it the first of an ABCs Plus Special Edition.

I’m sitting here on a day that is a sad day for me every year. Nine years ago today, on Mother’s Day, May 13th, 2002, my youngest son was killed in a car crash. Every year on May 13th, I usually try to do something special that commemorates his life or helps other people. Today, what I decided to do is talk about how I got started on the Internet. Normally, I don’t do single podcasts by myself, so I hope this ends up being an okay podcast.

I think it’s important for a lot of moms and dads to hear my story so that they can understand that their story, even though it’s maybe in a different time and place, we all have some very similar experiences. I want to talk a little bit about it’s a bit of a history lesson in how the Internet has changed how we deal with certain things in our lives.

It all ties in with my starting a blog, DeborahCarney.com, which has taken me a long time to get to simply because it’s hard to talk about and write about certain things when you’ve had a lot of pain in your life. Again, I want people to understand, in my case, how technology has made a huge difference in a lot of aspects of my life.

To go back to the beginning, I married young, 19 years old, had a daughter in February of ’77, and had my son, Chris, in July of 1978. He got really, really sick when he was seven weeks old and had to be hospitalized. They thought that he had something called ECHO encephalitis. It made him it very weak. It acted as a temporary paralysis. They thought that that disease paralyzed him. He started on his path of recovery. In the meantime, life went on. He got to be about nine months old and he seemed to be getting stronger, and then all of a sudden, he stopped. He could pull himself up to kneeling, but he could never stand.

We started to take him in for some testing and getting some evaluations done. Again, they said it was the ECHO encephalitis. It acted like a paralysis, like a polio type thing. The thing that got to them was that even though he couldn’t stand, and it seemed that he was very, very weak, he could still wiggle his feet. I can’t tell you how hilarious it was to be sitting in a hospital room at a teaching hospital and having neuromuscular specialists and neurologists come in the room with groups of students and go, “Look, no weight bearing, can’t use his lower extremities, but look, he can wiggle his feet.”
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Filed Under: Disability Advocacy, My Children, On Being a Work At Home Mom

Why I Love the Affiliate Marketing Industry – Or How I got Started

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For the very beginning – go listen to this.

Today my son Chris would be 33 years old. To know how I got into affiliate marketing you need to hear some things that have gotten easier to type about and it is kismet that I am posting this in a thread where two people helped me stay in this industry and not just fade away into the woodwork. This isn’t a “be sorry for me” post, it is a how affiliate marketing and the people I met in this industry gave me support, courage and pushed me to move out of a funk I thought I would be in for the rest of my life.

My sons had a form of Muscular Dystrophy called Spinal Muscular Atrophy. That means their nervous system stopped telling new muscles what to do when they were 9 months old. So their upper body was stronger than their lower (that’s how babies develop, from the top down :) ) and they were never able to stand unaided or bear weight, so no pivot turns or lifting to their feet, they needed to be carried when going to bed or bathroom etc. When they were young I was a stay at home Mom and Wedding Photographer, so I only worked “weekends” while their dad could take care of them. For years our family was involved in public speaking and advocacy for the Muscular Dystrophy Assoc and disability rights. Those of you that have met my daughter Liz can attest to her composure in public, that stems from being on the news and in the public spotlight for several years starting very young.

They got older, I got divorced from their dad and I needed to work from home. One of the first websites I built was one for the local MDA office. Then I found Amazon and started to build sites with recommended reading on topics I was interested in, plus worked with several in-house affiliate programs that are no longer around.

Long story short, Dan (my youngest son) died in a car crash on Mother’s Day (May 13, 2002). My brain and heart shattered. He was not ill, he was healthy so it was unexpected. He was 20. Chris and I lived in NYC for a few years, I had a good job but had to quit. I couldn’t tolerate office politics, couldn’t justify being away from Chris 8 – 10 hours a day so I quit. I got a job at Club Mom for a short time and that’s where I met Shawn Collins.

Chris and I needed to move back to Rochester where we were from and the affiliate checks started getting bigger and bigger. I was also getting a decent amount of money selling on CafePress.com. In November 2005 CafePress lost their affiliate manager and she recommended me for the job, even though we were 3000 miles apart. In 2005 there weren’t as many OPMs as there are now. I was excited and made plans to possibly move to the west coast, Chris was very thin and always cold and I thought it would be great for him.

Back up a little to Affiliate Summit Las Vegas in June 2005. What I forgot to say is that after Dan’s death I was very agoraphobic (short version it means you like to stay home and especially not travel across the country). Shawn had invited me to come take photos at that Affiliate Summit, and that is where I first met Billy Kay in person – we knew each other from another online forum and from frequent yahoo chatting and phone calls.

This is a little more that just how I started, but since I got this far I might as well continue. Getting to that first (for me) Affiliate Summit probably saved my life. I realized finally that I could miss my son, but could be in public without crying or having a panic attack or break down when I saw other moms with their sons. So for that I owe Shawn (and Missy – although I hadn’t met her yet) forever a debt of gratitude.

So I had gone from being Affiliate to being Affiliate Manager. Life was good. Chris didn’t want to move to the west coast because he would miss Liz’s son Alec. I figured once I got him there for a visit he would be fine and want to stay. So I went and started the job planning to get him out there eventually.

That was not to be. I loved working for CafePress, I had been a long time shopkeeper, knew most of my affiliates personally. Then I got a phone call from Liz while driving with a friend from San Fran to LA “Mom, Chris is in the hospital”. She and I were on the phone almost constantly for the next week, I wanted to go back, but I also didn’t want to be away from a phone for 6 hours while I was on the plane. Liz had questions from the drs, Chris said “I’ll be ok, stay out there”. He went home to his girlfriend’s house that Saturday and Sunday I got the call from Liz that Chris stopped breathing and was on the way back to the hospital. We all knew he was already gone. So Sunday March 6th my life shattered again.

I tried to be able to work in a corporate environment and I couldn’t do it. Schedules and meetings and office politics to me were inconsequential. They were BS that I didn’t want to put up with. I was talked into going to the Orlando Affiliate Summit, where I was greeted by people that had never talked to be before and people I barely knew with hugs and support. I told certain people ahead of time that if I started to panic I needed them to give me a hug. I had lots of hugs that Affiliate Summit, and went back to San Fran and quit my job.

After a short stint at a network, I became an OPM. Because I can’t work for other people, For years I would refuse to meet deadlines. Deadlines were meaningless.

Without this industry, which lets you work where you feel comfortable whether you are at home or at a hotel or a casino in Vegas, I don’t know what would have happened to me. This industry gave me a way to work in the type of environment I need to work in, on my schedule, and earn a living.

Chris loved Stoli, Jim Morrison and the Lord of the Rings trilogy – so have a shot then go listen to some music and watch a movie with your kids today.

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Filed Under: My Children, My Work, On Being a Work At Home Mom

How Did I Get Started on the Internet?

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May 13th is a special date to me. It’s the day I got engaged (1976), it’s the day I got divorced (1990), it’s the day my youngest son died (2002). Each year on May 13th I try to do something he would be proud of. He was a big supporter of my photography skills and my writing ability (although he was the one with all the writing talent :) ) so every year for the past several years I would go somewhere and photograph something. Some years while I was in Rochester it was the lilacs at Highland Park and other years it was Red Rock Canyon, and still others NYC parks. This year I had a bad fall this week and can’t hold a camera or go for a walk. So I challenged myself to do something I don’t normally do. I recorded a solo podcast. It is meant to be an inspiration to other parents of children with disabilities and a peek into life before the World Wide Web, when the internet was just green letters on a black screen, but that still allowed you to do research you would ordinarily take months to do.

I kept it to 20 minutes and didn’t say all that I had to say, but will add more later. For this special edition I just wanted to tell part of the tale, the part that will hopefully inspire other parents to reach out, start a blog, use online resources to make their lives and their children’s lives the best they can be.

Podcast: Play in new window | Download

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Filed Under: Disability Advocacy, My Children

Need inspiration to follow your passion?

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Originally posted elsewhere on September 19, 2007:

Today is my son Daniel’s birthday. He would have been 27 today. Over the past 6 years I try every year to get through his birthday without anguish. For those that don’t know, he died in a car accident in 2002. On Mother’s Day.

Why post today? Why not just hide away like I planned? Because his story is one of passion and ambition and brilliance. And unlike so many other people, he *did* what he was passionate about. He didn’t talk about doing things, he did them. And he had obstacles, oh did he have obstacles. He didn’t finish high school because he had panic attacks. And he went on to attend Hofstra University and got into the highly competitive NYU Dramatic Writering program. I lived with him at NYU in the dorm for a year (well, it was almost a year) because he went there right before 9/11. When the buildings came down, they weren’t concerned with finding a health aide for a 20 year old in a wheelchair, they had bigger issues to deal with. But that’s another story for another day.

He wrote his first complete novel when he was 10. It blew me away. It is no longer around, the files got corrupted on the computers it was on, the hard copy is no where to be found. It wasn’t meant to be his legacy.

I want to share some of the things he wrote, they are movie scripts, so they are not easy to read if you aren’t used to the format. And he had a bizarre sense of reality, so if you dare to read them be prepared, they are definitely not mainstream material. No happy endings…

Passion… when you think about how hard it is to do what you love… think of Daniel and how he managed to do what he loved, and know that he was poised for greatness when the universe claimed him back. He followed his passion… to the day he died. He had a movie in independent pre-production, he had an internship with the Emmys, he was ready to fly.

If you dare, here are his scripts, both movies and plays:

The Movies

Slay the Demons – When a random act of violence forces Brent Fischer to relive the traumas of his past, he’s forced to finally face down his demons or let them destroy him forever.

Age of Experience - An exploration of the difference between age and maturity seen through the eyes of two male prostitutes and a disabled college student. It’ll suck the funny right out of the room. And then you’ll get to the climax.

kiuljuk - An online plea from an old college friend fills Greg Mitchell with confusion. Because what happens online isn’t real life. That is, until it is.

kilran – Death in a funny suit

These are Daniel’s short plays. He has one or two full length that I may post another time.

Ask Why
Erin
Nobody Dies Originally titled “Gotta Pee” this one won a writing competition at a junior college, and he wasn’t *in* the writing program there, and all the teachers and writers wondered W(who)TF this was.
Rational Irrational Produced by NYU, part of a short play competition.
Vator

Enjoy, or better yet, follow his lead and go do what *you* are passionate about and don’t make excuses why you can’t.

Page with more info on Daniel, in his own words

Daniel Fogg with Bob Guza and Wendy Rich
Dan with Wendy Rich and Bob Guza, executive producer and header writer respectively, of the TV show General Hospital.

A wise man told me in May, “just keep thinking of the future”. And today he said “go forward, go forward”. I am going forward and not dwelling on the past, but the past has some issues I need to deal with now and then. And Dan’s accomplishments going unnoticed are one of the things that bother me now and then.

Daniel was also a huge positive influence on people that knew him. He made a huge impact on a community of script writers, Project Greenlight. Most people only know that now because of the tv show, but it started as a community, a forum, where a young man named dfogg had a huge influence and following. He met his girlfriend there, he made friends that were his business partners, he inspired other people to write and attempt to market their writing, when they were too shy or lacked confidence to do so. Sound familiar?

He stirred controversy, went to live events – in LA, and believe me flying cross country was not easy on us. Especially the trip that all three of us went. Neither Dan or Chris could sit in an airplane seat comfortably, and airlines don’t really know what to do with 300 pound wheelchairs. I sat between them, taking turns letting them lean on me or holding them up. But I digress….

He started on a message board and made people do what they were afraid to do. He inspired people. So maybe that is why I am so pushy about inspiring people myself.

And he *is* the reason I repeat “life is too short”. His life was too short. He is the reason I pressure some people to get out of their comfort zones and do certain things.

Follow your passion, follow your heart.

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Filed Under: Grieving, My Children, Writing

Life’s To Short to Not Accept That Some Days You Will Still Grieve

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There are birthdays and there are the “anniversaries” and I know that even as time passes they don’t get easier… even if we want them to. So on “those days” (for me today is one for Chris) I try to do something that reminds the world about how special those we love are and how hard it is when they are gone.

It’s been easier to deal with adults that leave us, my dad, my sister – but even when your children are adults it tears your heart out and leaves a whole to big to fill. Even when your life finds a new path, and that path is a good one, there are still times when the memories and the pain resurface.

I write this because life it too short to not acknowledge the pain, take a day with the memories, do something that honors that child (brother, uncle) that you lost and understand that it is still ok to grieve even though it makes those around you feel sad that they can’t “fix it”.

Chris was my life, especially after his brother died. He was a quietly wonderful man, he drew (I don’t have his drawings), he played Gemstone IV online incessantly, he was an actor (which is why he loved the online roleplaying). So I don’t have anything “tangible” from him, but great memories of his love for animals, his love for his nephew, his passion for acting.

Some of you met him in person or virtually. He was part of your lives too. Today we can grieve again and tell people to listen to the Doors (he was a huge Jim Morrison fan) and have a shot of Stoli…. and remember that life is just too short.

(Chris left us this day in 2006 – he had been in the hospital for a few days, he went back home with his girlfriend, they got up in the morning and he had trouble breathing. She went to get him a drink and when she came back in the room he had stopped breathing. She did CPR, called 911, but it was done. He died quietly and quickly.)

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Filed Under: Grieving, My Children

For Chris

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There are birthdays and there are the “anniversaries” and I know that even as time passes they don’t get easier… even if we want them to. So on “those days” (for me today is one for Chris) I try to do something that reminds the world about how special those we love are and how hard it is when they are gone.

It’s been easier to deal with adults that leave us, my dad, my sister – but even when your children are adults it tears your heart out and leaves a whole to big to fill. Even when your life finds a new path, and that path is a good one, there are still times when the memories and the pain resurface.

I write this because life it too short to not acknowledge the pain, take a day with the memories, do something that honors that child (brother, uncle) that you lost and understand that it is still ok to grieve even though it makes those around you feel sad that they can’t “fix it”.

Chris was my life, especially after his brother died. He was a quietly wonderful man, he drew (I don’t have his drawings), he played Gemstone IV online incessantly, he was an actor (which is why he loved the online roleplaying). So I don’t have anything “tangible” from him, but great memories of his love for animals, his love for his nephew, his passion for acting.

Some of you met him in person or virtually. He was part of your lives too. Today we can grieve again and tell people to listen to the Doors (he was a huge Jim Morrison fan) and have a shot of Stoli…. and remember that life is just too short.

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Filed Under: Grieving, My Children
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