RSD & Photography: Interview with Barbara Shapiro

Conducted and edited by Lydia Shaw

Barbara Shapiro is an amateur photographer from Ohio who has RSD (Reflex Sympathetic Dystrophy). Her photography has won second place from a local competition, and has been published online in the Facebook magazine The Naturalist’s Notebook. She posts her photography, usually of animals and nature, on her instagram account, @bgshap2.

Can you give an explanation of RSD and your experience with it?

RSD stands for Reflex Sympathetic Dystrophy. It is also known as Complex Regional Pain Syndrome (CRPS).

RSD is considered a rare disorder. According to the Mayo Clinic, there are fewer than 200,000 US cases per year.  It can develop after a major or minor injury, but its cause isn't clearly understood. Nobody knows why it happens or why it happens to the people it does. It is a reaction of the body in excess of what one would expect from the injury. It affects the nervous system and possibly the immune/autoimmune system, but again, there is not much that is known or understood about the disease. It is extremely painful, and symptoms can include atrophy, changes in temperature, sensitivity to temperature, skin color and texture changes, muscle spasms, and stiffness and swelling, among others. RSD can also migrate to other extremities. In my case, it began in my left hand and arm, but recently, it was confirmed to also be present in my right hand and arm.

There is no cure.

I had a minor injury at work that precipitated the RSD in my left hand, and I've now had it since 2015. My treatment includes opioid pain medications and a spinal cord stimulator, which was implanted in my back in 2016. These treatments help with the levels of pain but in no way eradicate it. I currently take two pain medications, again both of which are considered opioids. The first medication I take during the day and it helps me make it through the workday. The second medication is much stronger and helps with the pain when I get home from work. Needless to say, I cannot drive while I am on this medication.

I am still working, which a lot of people who have RSD are unable to do, so I am grateful. I do not know how long I can continue to do so and have accepted the fact that I will eventually end up on disability. Originally, I was off of work for four months but decided to try going back. My job has accommodated me in that I now have a speech–to–text program for my computer. It does not help with everything or all the time, but it has allowed me to keep working.


Why did you decide to start taking photographs?

I used to be a very passionate knitter and crocheter. Unfortunately, I can no longer knit or crochet, because my hands can no longer hold the needles and are not limber enough for the wrist movements. I had always been interested in photography and had taken a photography course in high school.  I had a Nikon EM camera and took it with me to France, where I was able to get some nice pictures, a few of which were quite good. I did enjoy taking pictures but nothing spectacular, using inexpensive digital cameras as they became available and my cell phone, downloading cell phone apps for editing purposes. I wanted to do more but did not know how to start and also thought the cost of the camera was prohibitive.

After my diagnosis and after the symptoms began to worsen, and after I was no longer able to knit, my husband surprised me with a Nikon D5100 camera. He had done the research, looking for a light-weight camera, and found this one for me. I used the software that came with it to learn the editing process and later bought a Photoshop Elements program. This worked well until my computer died. When I bought a new computer, I signed up for Adobe online, and I pay monthly for Photoshop and Lightroom software.


What does photography mean to you as an outlet for expressing yourself?

It is currently the only way I can express myself artistically. I cannot hold a pen, pencil, or paintbrush for long period of time; I cannot knit or crochet; I cannot make jewelry; I can no longer garden; I cannot do anything that requires intricate hand or finger movement or requires strength without the consequences of increased pain.


How does your disorder impact your photography and your life as a photographer?

I do have some problems with the photography. Sometimes, as my hands are too bad, I am not able to take pictures. Sometimes my spinal stimulator is so high that it precipitates a tremor and I have to lower the strength or shut it off completely in order to take pictures. I cannot take pictures for long periods of time. I do have a tripod and a monopod which help, but again, carrying them can be difficult as they add extra weight.


Where do you see yourself and your photography in the future?

I do not see photography as a full time occupation, and I do not think I would want it to be one. I enjoy it as a hobby, without the pressures of deadlines. It makes me feel good when people compliment my pictures and ask me for copies, which I give freely. I enjoy making calendars and notecards as presents. I sometimes think that I could make my photography a business, but I also worry that it would destroy the pleasure I get from it.

I feel that my crowning achievement is that my son asked me to take his senior picture.