Loxly

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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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 5th, 2006 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.

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.

You tell yourself you are successful. You are a successful webmaster, successful visual artist, successful Doctor or teacher. But deep in your heart there is something you would love to do, that you do secretly or that you only dream about because doing “it” would expose a vulnerable side to yourself. You call it a “hobby” or you don’t even tell people about it for fear of failure or ridicule. Maybe you write music or you play a guitar, or you draw or sing.

It’s time. It’s time to reach into your heart and face that “thing” that you are afraid to do and just do it. Because you don’t want to run out of tomorrows before you show the world that specialness that is the real you. You will be surprised at the support you will get and how great you will feel. Just because the world “sees” you only one way doesn’t mean they can’t handle seeing another side of you. The people that reach into their hearts and pull out the real them are the people that inspire me the most.

I’m standing in a bar in Brooklyn, listening to a band I have traveled across the country more than once to see, near the 5th anniversary of one of my sons passing. The lead singer looks into the crowd and says “Don’t be afraid of the Happy Dancing, everyone can be Happy Dancing.”

She then went on to continue to sing the next song and the “happy dancers” were stomping and jumping and body slamming each other. They were inspired by the same woman that inspired me a few years ago.

In late June 2007 – a wonderful man sent me the link to a video of the opening act for Joan Jett, playing on the Hudson River in NYC – he left a message in IM before he left for the show because I had a bad day, I had fired someone – said “because your awesome” – linked to YouTube video of “Because I’m Awesome”.

People tell me I’m an inspiration to them, I’ve been told that for about 30 years. It was 30 years ago that I was told that my sons had a genetic condition that would mean they would never stand or walk and that their life span was teens to early 20s.

One, a writer that inspired everyone around him to be better than they were, encouraged me to write and follow my passion – photography and the dream to have a gallery someday – I have an online gallery, but it’s a gallery. I stopped writing because he was the brilliant writer, not me.

The older one that inspired everyone around him because no matter what he lived his life the best he could, rarely complaining about the constant pain he had to be in, his acceptance of people as they were and the drive he had to be an actor. He was an actor online, playing role playing games featuring medieval characters that he created, with animal roles that were incredibly detailed and making friends around the world.

I have a confession to make, I don’t inspire anything. It’s my children that inspired me. The boys for their living life the best they could, their sister for being there for me and for them. My children were my reason for living, my anchor, my inspiration. When the boys died, it took away my reason for being. Liz and my grandson are very important, but it wasn’t the same, they didn’t rely on me for their life to go on. They had their family. Dan and Chris relied on me for pretty much everything. To get up in the morning, to go to bed at night. There were other people around that helped, Liz, their Dad (we were divorced), their cousins, their girlfriends. But it was my perceived job to be sure they were always ok, there was someone there if I wasn’t. I lived with Dan in a dorm room at NYU on Washington Square for the 10 months after 9/11. When he died in a car accident, his brother immediately rejoined me in NYC (he had been with his dad for a couple of months) and we moved into a ground floor apartment in Astoria for a year.

I got credit from people for being a strong woman that raised them right, that allowed them to be as much as they could be. We were an active family in the community, raising funds for research, attending events and Liz talking about living with disabled siblings, about the boys being in school mainstreamed with the other kids. Both my sons dropped out of high school in 10th grade. Why force them to live their short lives dictated by the rules of a bureaucracy? They both went to college, by their choice, not dictated by society. They inspired by example.

Dan was online meeting people virtually around the world and didn’t tell them he was 16 or 17, didn’t tell them he was in a wheelchair, didn’t tell them anything, just showed him his personality and his work and his words. Chris was online meeting people, creating worlds to live in where there were no wheelchairs or restraints. He was in the college plays, they made sure the plays they choose had roles for him.

They both started going to live events and meeting the people they only knew online, they had to start admitting their ages and their restrictions. By then no one cared. Because they knew the people that they were. I was just the able bodied person that got them where they needed to be.

In a bar in Brooklyn on a cold March night, a beautiful blonde angel made me realize what was missing, why even though my life is good now, it still wasn’t “right”. Missing Chris and Dan so much, unable to do the things I wanted to do, something stopping me. When Kelly sings, she inspires people to react. To have fun. To Happy Dance. Good musicians do that, good writers do that, good actors do that. Kelly does it, Dan and Chris did it. Without them to inspire me I’ve been floating, working without purpose, just doing the jobs I was good at, helping people along the way. Kelly showed me that persistence pays off, you do what you really love to do and it will inspire people.

I needed to realize that in order to be able to fully realize that it’s time for me to go out there in my way and inspire people. Stop letting barriers be in the way. For 34 years my children were my life. I love the work that I do, but things are top-heavy or something. I need to keep doing what I do, for the people that rely on me, but I need to also reach into doing what I need to do for me. That sounds corny, but it’s true. I have tried several times to make myself write. People tell me they are inspired by my stories, but I just tell them, I don’t write them.

I have a thousand stories, I just have to figure out where to start. I think it might start on a cold March night, in a bar in Brooklyn, where 11 years ago I could have never imagined being, with a wonderful man by my side and an angel singing that touched my heart, and in that moment I understood.

Like many other people I get Google alerts for my name. One popped up in my email box today linking to an article that I hadn’t thought about in a long time! It was published by Corel back before I became involved with CafePress as their affiliate manager, it details how I used CafePress as a shopkeeper to sell my digital art and photography. I used mainly Paint Shop Pro back then and still do for a lot of my digital art creation, when I have time! There are a few inaccuracies, but it was written in early 2005, lots has changed since then!

Here is that article:

New York Photographer Combines Power of Paint Shop Pro with the Internet to Earn a Living

Deborah Carney has been a professional photographer for 30 years. The Rochester, New York, resident’s photos chronicle her passion for the special things in her life, most notably New York and Maine Coon cats.

In 1999, Carney set up a CafePress shop and began selling her photographs on products ranging from T-shirts and mugs to framed prints, greeting cards, and custom postage. CafePress.com is an online marketplace and e-commerce solution that allows anyone with digital photos or images to create and sell products online without the risk of overstock or financial outlay.

At the time, Carney was using L View to scan and crop her photos. Back in the day, she says, L View was “the bomb,” but it had limitations.

Having had some success making her life’s interest her business in the form of her CafePress shop, Debbie was on a constant quest to find a better solution to manage her photography. In 2002 she discovered Paint Shop Pro, and suddenly her business began to take off.

CafePress allows Debbie to offer an unlimited number of her photographs for sale on more than 80 different products. The limitless capabilities of the CafePress system combined with the timesaving features of Paint Shop Pro has allowed her to create an image catalogue of 3,000 images and an online offering of 9,000 products.

By using Paint Shop Pro’s dynamic features and a watercolor plug-in, Carney can scan and process a thousand digital photos overnight.

Recently Carney mastered the Paint Shop Pro Text Tool, and now she can venture into a whole new area of the CafePress Shops — customization.

“I’d recommend that new users get comfortable with the Text Tool early on because it provides you with a lot of personalization options, which is great for your CafePress customers,” she said. Carney recently designed a custom Framed Print Anniversary keepsake for one of her buyers: “Joe and Jean’s Wedding Day, Las Vegas Oct 20, 2000.”

Carney is still discovering all that Paint Shop Pro can do. “With all the text tools, tons of plug-ins, frames and borders options, there are millions of ways to apply them to the photos I’ll use on the CafePress products,” she said.

In fact, she enjoys using the Picture Frames to turn her images into different shapes like hearts and ovals for romantic gifts.

Her best tip for new users: “Learn how to crop right away and set those timesaving defaults.”

“I can’t even imagine running my CafePress shops without Paint Shop Pro,” she said.

CafePress is a quick, easy and free way for artists and photographers like you to start an online business, simply by sharing your creativity with the world. Knowing Paint Shop Pro gives you a competitive edge on creating well-designed product and a well-stocked shop.

Who said artists have to starve?

Start your own CafePress store, sign-up today!

Happy Holidays!

Happy Holidays


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  • maisoto56348: I really liked King Hereafter, where the sparse saga style suited the characters and the setting. It’s one of my favourite books. Click
  • Jan: Deborah; You already have your wings, now you just need to fly. I am humbled. You gave your boys life--and they continue to live through you. Just a
  • Peggy: Deb, you make me smile and cry at the same time. ((hugs))