4 posts tagged “photography”

The ALS battle forces changes

Posted September 25th, 2017 by

Jim Burton in Dalton, Ga., in January 2015 while on a freelance assignment for a statewide newspaper. Photograph by Gibbs Frazeur.

A guest blog by member Jim Burton, the ALS Warrior

 

A harsh reality of progressive diseases like ALS is that your body is constantly changing. After my ALS diagnosis in January 2013, I noticed that the progression seemed to happen in stages. After losing some degree of capacity, I’d settle on a new plateau, which became my norm for a while. The plateaus have become shorter, and the declines have become more pronounced.

Neurologists call ALS a progressive disease, but to my family and me it’s digressive as my health declines. In turn, the digression forces change as today I can’t do what I did yesterday.

The biggest changes happened early on as I lost the ability to walk and began using a motorized wheelchair. As dramatic as the change appeared when I became a de facto paraplegic, the new plateau felt manageable. With a handicap-equipped van and hand controls for driving, I maintained most of my independence.

For several years after the diagnosis, I worked as a freelance journalist not only writing stories, which I could do from my home, but also going on location for the photographs. In one week, I traveled alone about 900 miles throughout Georgia and stayed in several hotels. Two years later, I had digressed to yet another plateau, and that independence became history.

Transitioning to a motorized wheelchair represented a radical lifestyle change. Now the disease has reached my shoulders, arms, and hands, creating new and different challenges.

Jim Burton in Dalton, Ga., in January 2015 while on a freelance assignment for a statewide newspaper. Photograph by Gibbs Frazeur.

Recently, I’ve made another major adjustment. Practicing journalism and doing location photography has become impractical. Just this year, I’ve lost the capacity to type, which I’ve done since the ninth grade. I now produce copy like this blog with talk-to-type software, and I’ve written four novels. The capacity to continue writing has kept me “in the game.” Though fiction is a new genre for me, I’m growing as a writer and continuing to exercise my creative capacity as a communicator. This new discipline keeps my mind sharp and my motivation high to press on and live as fully as possible even with my digression. Still, new challenges arise daily.

Jim Burton speaks with M.B. Howard, a former colleague, during the twenty-year reunion July 29, 2017, of a former Memphis-based nonprofit where they both worked. The trip from Atlanta to Memphis would have been impractical for Burton, so the organizers recommended an adjustment that allowed him to participate via Skype. Photograph by Bill Bangham.

In my home office, I have a workstation with a desktop computer and printer. When first diagnosed, I worked daily on my final doctoral writing project and used the printer constantly. Normal functions included loading paper, changing ink cartridges, loading documents into the feeder, and of course retrieving the printed pages. Each of those seemingly simple tasks now exceeds my physical capacity. The most frustrating challenge has been the inability to retrieve a printed piece of paper that lays on a shelf about four inches off the table. Unable to raise my hand that high, I discovered a way to work around that challenge. By placing my stapler beneath the shelf, I can put my hand there and then reach the printed paper. Another problem solved. These incremental changes that allow me to solve new challenges, create hope. And with every accomplishment, ALS loses.

Several years ago, I determined that I would not see myself as an ALS patient or victim. I’ve chosen to be an ALS warrior because I fight this disease every day along with thirty thousand other Americans and their families. Whether large or small, each victory matters.

I encourage you to remain determined each day in your battle to defeat ALS.

Jim Burton is a writer based in Atlanta who frequently writes about his ALS journey at http://life-bluezone.com/blog.html.

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Worth a thousand words: A day in the life of Larry

Posted April 14th, 2017 by

As a child, Sarah Howell loved art. She got her first camera at 6 years old and realized, over time, that she had a way of connecting emotionally and expressing herself through photos. Now, she has her own studio. Her passion? Capturing genuine family moments. Sarah often stays overnight in the home of the family so she can spend the entire next day with them, from start to finish.

A day in the life of Larry Tyler

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

When Sarah’s friend, Teri, asked her to capture a day in the life of her father, Larry Tyler, she was both shocked and honored. Larry, living with ALS that required 24-hour care, wanted the photos released to raise awareness and funding for ALS.

Sarah was there with her camera, from Larry’s wake-up at 10:30am, until he went to bed that evening. What emerged was a series of 24 deeply moving photos that capture a day in the life of Larry and his family.

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

While she was prepared for sad moments with the family, she wasn’t prepared for the level of caregiver exhaustion she witnessed. For Sarah, the realization that ALS is a family disease was the hardest part of her visit.

 

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

Despite the hard moments of exhaustion, chaos and frustration, Sarah also witnessed how Larry and his family coped: with laughter and humor.

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

Reflections

After this time with Larry and his family, Sarah now wants to photograph a day in the life of one person living with ALS every year. Even though she doesn’t have a personal connection to ALS, she feels that this story could resonate with other caregivers. She shared her collection at a gallery and was moved by the reception.

Sarah hopes the collection will not only raise awareness for ALS, but also to increase awareness of the need for caregiver support and therapy. In the meantime, she hopes that her photos can do some good.

Check out the rest of Sarah’s 24 photo collection with Larry.

Find other ALS caregivers

Do any of Sarah’s photos resonate with you? Share in the comments.

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