The Story Behind Chick’s GBS Adventure

For much of this year I have published images every day on a blog Chick’s GBS Adventure (http://chickgbsadventure.wordpress.com) which documents a deeply personal and emotional time in my life, caring for my husband who has been ill since Jan 12th. He is now recovering at a very progressive rate (according to his doctors) even though it will still be 1-2 years before he is back to his pre-illness fitness level.

Over the next many posts, I will explore the best of these images, stepping back from the emotional story, and talk about these images from a photographic perspective.

A while back I took a workshop with photojournalist Gerd Ludwig. During that workshop I was challenged over the course of a 4 days to do a Day-in-the-Life documentary of my Parents. Gerd said to me something to the effect that I would need to take a lot of pictures to in order to capture the full story, then edit them down to a manageable 10 or 15, but that out of the whole series, one or two images would stand out on their own. It was true for that series, and certainly true for this one too.

Preface

On January 12th, my husband was admitted to the hospital with no more specific of a diagnosis than “profound weakness”. The true diagnosis came 10 days later: Guillain-Barré Syndrome – an autoimmune condition that attacks the myelin nerve sheaths and leaves them incapable of transmitting nerve impulses to the muscles. The first symptoms are tingling in the hands and feet leading ultimately to various degrees of paralysis. Recovery begins only after the autoimmune response is stopped. It then typically takes 1-2 years for the nerves to completely repair themselves down through the hands and feet, and the strength lost by muscle atrophy to be rebuilt. In my husband’s case, over the course of the 10 days leading to his diagnosis, he became paralyzed from the neck down with involvement of his bowel and bladder. His respiratory and GI systems were affected, but luckily not to the point of needing aid.

On Friday evening, January 22nd, he was finally diagnosed and transported to UCLA Medical Center to begin 5-rounds of plasmapheresis, a treatment to stop the autoimmune response, and set him up for his long recovery.

Before his diagnosis I was completely freaked out, but once we got to UCLA and had a course of direction, I finally had enough awareness to start a documentary series of images which served not only to keep me occupied but also to serve as a record which my husband could then use to see his own progress – something very difficult when you are slowly pulling out of paralysis one small movement at a time.

The Camera

My schedule was pretty unpredictable, as I spent all day and many nights at the hospital or rehabilitation facility providing a constant face of optimism and support. In addition, I never quite knew when a severe bout of pain or depression would hit. I wanted to capture this story, but it was the proverbial photojournalist’s riddle: If you see a man dying on the side of the road, which will you do first, help or take the picture.

My answer was certainly to “help first”. Managing cameras, batteries, memory cards, and lenses was secondary so I relied on what I had with me – a new iPhone 6s and its 12 MP / 31mm effective focal-length camera.

Ergonomics aside (the iPhone is a clumsy physical camera platform), my two biggest complaints with the iPhone are that the sensor has a very hard time with dynamic range and consistently blows out the highlights, and that there is a noticeable shutter lag. The former was just something that I had to work with, often fixing in my post processing. The shutter lag I tried to overcome by taking a lot of images in succession or using Apple’s “live photo” feature and picking the right frame in Lightroom, after the fact. Otherwise, the camera it is reasonably sharp and well performing especially for publishing in smaller sizes.

The process

About the time Chick moved to UCLA, he too became committed to telling his story through a daily blog post on a site we called Chick’s GBS Adventure. With GBS, Chick’s body was paralyzed but his mind remained lucid (except for some hallucinations as a side effects of the pain medications).  Chick and I quickly worked out a system where he would dictate his thoughts to me while I typed on my MacBook Air which I carried with me everywhere.

I would photograph throughout the day, being mindful to protect the privacy of the staff and other patients unless given permission, and we would use the best images of the last 24 hours to help tell the story. My process was to pick my favorites from the phone and email them to myself. Mac’s new AirDrop feature came in quite handy as well – and thankfully all the facilities where Chick was being cared for had good guest WiFi. I would import the images into Adobe Lightroom for light post-processing and export them in a size for publication on our WordPress blog, FaceBook, and email. We wrote each entry in Evernote, which is available on all my devices (MacBook, iPhone, and iPad) then cut and paste into the WordPress editor when ready. Later on we came to also use the voice dictation on the iPhone before doing the final edit on the MacBook.

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