My Thoughts on the ALS Project

Corey Perrine/Staff
Anita uses a motorized chair lift to transport Bob out of their modified van at Anita's work at Dr. Douglas Clepper's dentistry office May 12, 2010 in Augusta, Ga. Small visits like these are for Bob as he wants to see people as often as his condition will permit. When Dr. Clepper heard of Anita and Bob's situation, he told her to work at home as long as she needs to. Anita makes synthetic teeth at home now.
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Sleeping hand-in-hand, Anita Gordon, left, and husband Bob Gordon spend the night in observation t the ICU after Bob experienced a blood clot Sept. 4, 2010 at the Medical College of Georgia, in  Augusta, Ga. Since 2008 Bob has been diagnosed with amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig's disease, it attacks the motor neuron system. His wife Anita and daughters Lauren, 25, and Leah, 19, learn to adapt and transition as Bob deteriorates. However, despite challenges, they cope, adapt learn to adjust as time passes by.  Corey Perrine/Staff
Corey Perrine/Staff
Sleeping hand-in-hand, Anita Gordon, left, and husband Bob Gordon spend the night in observation t the ICU after Bob experienced a blood clot Sept. 4, 2010 at the Medical College of Georgia, in Augusta, Ga. Since 2008 Bob has been diagnosed with amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig's disease, it attacks the motor neuron system. His wife Anita and daughters Lauren, 25, and Leah, 19, learn to adapt and transition as Bob deteriorates. However, despite challenges, they cope, adapt learn to adjust as time passes by.

Last year at the 2010 Masters Tournament I found a man in a wheelchair collecting the coveted plastic cups seen dangling off the handles of his chair. His wife would "dumpster dive" into the trash cans, like so many do at Augusta National Golf Course, and he waited patiently as she came up with a treasure of plastic gold. Out of breath, seeing I was engaged with her husband, she came running up to me and said, "He can't talk, he can't talk, Bob has ALS."

 

I wasn't searching for this story.

 

However, I believe in following your human gut when an opportunity presents itself.

 

I introduced myself to and we began talking during the course of the conversation I told them about a report I wrote in the 8th grade. The knowledge learned from pouring hours over that six-page paper has stuck with me until this day. And I could empathize, the best I could with the little knowledge compared to theirs, that I had at the time.

 

Anita was kind and we hit it off instantly. I asked them if the following week I could contact them and if they would be interested in telling me more about their situation.

 

The tournament concluded. I didn't call. I don't know why. I suppose it was The Masters hangover. Yes, shame on me. I really was planning on it but I failed to follow up on my words. Again, shame on me.

 

Toward the end of the week, Anita called me and said, "Are you still interested in coming over?"

 

I did. And I'm so thankful that she did.

 

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For over a year now, I've been documenting the story of Bob & Anita Gordon.

 

In 2008 Bob was diagnosed amyotrophic lateral sclerosis, commonly called Lou Gehrig's Disease or ALS. It's a neurodegenerative disorder that causes the motor neurons to eventually fail. It it's deadly destruction, on average will take 2-3 years from the time of diagnosis, to cause respiratory compromise (total breathing failure), despite the aid of a tracheotomy and breathing machine.

 

It has no known cause.

 

It has no cure.

 

I've been very fortunate an privileged to be a voice for them and witness this horrible disease.

 

Editing the photos was the hardest part. I didn't look at them for over a year. In fact, for the first time, and I don't recommend it, I edited them two weeks ago. The reason was because I wanted to take each day to its full advantage and not compromise anything and say in my head, "I have that or I've seen that." A little superstitions, maybe. But it worked for me in the first year.

 

I'm honest enough to admit, I lost it when I opened up the first few folders. The secondary image, seen above, summed up a crazy night when she called me and said, "Corey, Bob's suffered a blood clot we are at the ICU in observation."

 

It was around 1 a.m.

 

Without hesitation, got dressed, grabbed my gear and went.

 

And I kept revisiting them over and over. Again and again. When time permitted and when it didn't.

 

It's hard not to fall in love with this family. It's hard not to care about people you've gotten to know and they know you. It's hard to tell them on Thanksgiving day why you can't eat dinner with them. But Anita understands. Few people do when you're trying to explain your unique role as a journalist.

 

I'm privileged. And because I know how privileged I am, I don't want to fail them, this disease or fail the voice they need and have asked for.

 

I hope what you see you learn, feel, grow and maybe one day will act.

 

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While commonly I've had an unsuccessful time with multimedia, with reasons I won't bore you with, one of my editors, John Gogick challenged me, "I want the video piece to be just as good, if not better, than the print piece."

 

I accepted the challenge (not that I am attempting to take away from Tracey's beautifully written piece or challenging it).

 

Seen below is a link of the multimedia piece I'm most proud of all.

 

Again, it's my hope that you feel something. My intentions aren't to show shock factor of a dying story. My intentions is to show the bond of Anita and Bob, their relationship with God, how they are coping and what they are thinking mentally, all while informing the public on such a disgusting disease that needs help finding a cause and cure.

 

It's my most meaningful journalistic experience to date and I've had a few. But none have taught me so much spiritually. I have grown much from them, this and plan to continue with this piece untill it is told.

 

The other night I texted Anita, as we often update our lives, "Why do put up with me?"

 

Her simple response: "Because you took the courage to talk to a man who could not speak."

 

 

Sincerely,

Corey Perrine

 

 

http://chronicle.augusta.com/als

 

 

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I'd just like to thank Tracey McManus for a beautifully written story, Amanda Holahan and Traci Westin for the meticulous efforts with the layout in print, Kim Luciani for the rockin' programming, retooling of the website and "sexy" layout online, John Curry for vehemently freeing up my sechedule having faith in my talents and John Gogick and Alan English for their continued rock-solid support when this was all laid out before them in a relitively slim amount of time. And last and MOST important the Gordon's, who I have grown very fond of during my journey with them and their continued faith in me to tell part of a story the world can now hear.

God bless.

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