SRNA Family Camp: Documentary Photography

I do lots of documentary photography for the Siegel Rare Neuroimmune Association.

There are few things Pauline and I were prouder of than our establishing the SRNA Family Camp. The first gathering of our community was in 1999 in Seattle. We held an education program for about 100 members and brought in specialists from all over the country. From our experiences, and through our many conversations with parents, we came to realize that families have a unique experience with the rare neuroimmune disorders. It’s one thing for an adult to be diagnosed with one of these rare disorders; it is quite another when it happens to a child. Children as young as a few months old can be diagnosed.

I decided that we needed to offer a more specialized education program for families. We also needed to provide social and emotional support to children and their families. It is almost always the case that when someone is diagnosed with a rare neuroimmune disorder, they are hearing those words for the first time, they have no idea what it is, and they don’t know another person who has it. It is an entirely isolating and frightening experience.

Thus began my odyssey into putting on a children’s and family extravaganza in Columbus. I spent a year putting together the education and recreation program and raising money to minimize the expenses for families. We held the event in 2002 in a hotel in Worthington. All the doctors who presented sessions came with their own families and covered all their own expenses. The spouses served as caregivers for the children’s recreation adventure. My own family and friends were involved, as well. I rented two Columbus School buses. The children were taken to the Columbus Zoo on one day and to the Center of Science and Industry on the other. The older children went on a recreation adventure that was managed by Pauline and our son, David. The adventure was put together by the Columbus Parks and Recreation Department, Children’s Hospital and a private not for profit involved with adaptive recreation. The logistics surrounding the event were incredibly complicated. At the opening dinner I began presenting to the parents how we were going to feed their children, care for them, get them their medications (I had a couple of nurses involved), have them transported … and mid-sentence, I stopped and said, “how in the hell are we going to do all of this?” It was not a rhetorical question. But we did, in fact, do all of it. I was a physical and emotional wreck, but the experience was unforgettable for all involved.

For all these families, it was the first time they were meeting another family with a child with TM. At that time, we only knew about transverse myelitis. These families have remained in touch with each other, and the children have, as well. I love that we catalyzed all these amazing relationships. I also learned from this experience that I could be the worst fundraiser in the universe. I spent an entire year raising money and ended up with $70,000. Not good.

When the weekend was completed, Pauline told me that she was so proud of me for what I had accomplished, and she was never going to allow me to do anything like this ever again. I heard her loud and clear. I then asked a few of our parents to begin a search for a camp where we could hold our program. We knew what we needed to do; we just needed to find the right place to do it.

Incredibly, one of the parents found Victory Junction in North Carolina. We developed a wonderful relationship with the camp’s medical director and camp director. We discussed our vision for a family camp. They were totally open to our approach, and we began our camp adventure with one of Paul Newman’s Hole in the Wall Gang Camps. Victory Junction had never had a relationship with a medical organization before us, and we became a model for how a camp like this could be done. It is a spectacular camp that is totally accessible with an entirely accessible recreation program. We brought our medical specialists into the camp for a three-day education program and participated in the existing recreation program offered by camp. We were at Victory Junction for just over five years. In addition to the family camp, we also held a weekend retreat for our older teens and young adults.

In 2011, we moved our family camp to the Center for Courageous Kids in southern Kentucky. Again, we quickly established a great relationship with their medical director and their CEO. CCK also hadn’t created relationships with advocacy organizations in the past, and they were more than willing to adopt our program. We brought our medical specialists into camp for an education program, and we participated in their wonderful recreation program.

This past July, we held our first camp since a two-year hiatus during the covid pandemic. As the children in our community have such complicated medical issues, and some of them are either immune compromised or immune suppressed, we’ve had to adopt some stringent protocols for participation. We usually have between 30 and 35 families attend camp. This year, we only had 13 families. The covid has sucked so monumentally in so many different directions.

I was supposed to be at camp with two staff people from SRNA. My intention was to show up at camp with my camera, and let Rebecca and Lydia run the show. Not to be. One of them tested positive while still in their car outside the medical building. She was sent home. As the other was in the car with her, she was also sent home. Yikes. I felt horribly for both of them. I was at camp in 2017 just before Pauline died. I skipped 2018 because I couldn’t get my head or heart around being at camp without Pauline and Kazu. I returned to camp in 2019. It was good to be back at camp with the families, and it was so difficult and sad. After the two-year break with the covid nightmare, it was nice to be with the families. It remains difficult and sad. I see Pauline on her scooter all over camp with Kazu by her side. It will be hard for me for the duration.

Our community doesn’t get together often. As a rare disorder community that is spread across the globe, these gatherings are special, and just how special they are is palpable. It is this way for the children and their siblings and for the parents. It is also special for our medical community. Our doctors see these children in their clinics. They are performing examinations, answering questions, and doing all sorts of doctor stuff. At camp, they are sharing meals, dancing with the children, going boating, doing archery, watching them at the talent show, and doing messy games. They form relationships with these children and families in a more personal way. It is great for the families, and it is great for the docs. The education program is more a conversation than a lecture. The docs learn from the families as much as the families learn from the docs. There have been camps where we’ve brought in more than ten medical people. As the disorders are rare and there are so few specialists, it is often the case that many children from our community are treated by a doctor who lacks significant understanding or experience. Our education programs are focused on helping parents be the best possible advocates for their child’s care. I know that we've made a difference in these children's and families' lives.

What goes on at camp is remarkable. Most of these children come from an environment where they are the only one in a chair and they know no one else with either their diagnosis or their symptoms. The symptoms from these disorders can be so complicated and so difficult. Paralysis really sucks so much more than the general population realizes. It’s horrible for adults who deal with this stuff … it is so beyond horrible for children.

At camp, these kids can just be kids. They don’t look any different from anyone else, they don’t have to explain anything to anybody, and they are warmly embraced by everyone around them. The entire dynamic is pure magic. I’ve said more than once that we could put our families into a large field in tents and create this special dynamic out of thin air. And I believe that. I saw it in Columbus in a Holiday Inn Hotel.

I shoot hundreds of photographs at camp. When we get together for anything, I’m shooting the crap out of it, because we use these images for everything we publish or produce electronically. A picture is worth a thousand words … a picture of a child is worth so much more than that. These images are so powerful for our awareness campaigns. It helps to be a cultural anthropologist and neurotic when doing documentary photography. I don’t miss much. I try to capture the events as best I can, trying to be in ten different places at once. And I do as much portraiture as I can, because the most compelling images are those of these beautiful children.

I’ve heard from more than one family over the years that they count on my photographs from camp to have photographs of their children. I also make a point of taking family photographs during camp. In addition to having the photographs available for the SRNA, I also upload all the images for the families and make it possible for them to download and keep whatever they want.

I don’t consider myself a documentary photographer, but I am most definitely a documentary photographer. I also don’t consider myself a portrait photographer, but I am also one of those.

The camp is a beautiful place. While I focus my attention on telling the story about the SRNA family camp, I can't help but be drawn to the beauty around me. And it's not like I'm getting paid for any of this, so I feel free to do whatever I want.

Gabby and her family were regulars at our camp. She was a beautiful, fun and intelligent child who was so severely impacted by transverse myelitis. After Gabby died her parents came to camp and planted this tree. It had really grown since the seedling had been planted. I have a photograph of Gabby in my office and look at her and think about her every day. Her memory should be for a blessing.

These are the medical professionals who delivered our education program during camp. Our medical people are the most dedicated and brilliant people I know. They are also the busiest people I know. They are clinicians, researchers and academicians. That they donate a week of their time to us and to these families never ceases to blow my mind. Their generosity is overwhelming. We are blessed to have such wonderful people in our community.

One of these physicians received the James T. Lubin Fellowship. She was trained in the rare neuroimmune disorders in the SRNA fellowship program. We developed this program to accelerate the training of clinicians and researchers. It is another one of those programs that Pauline and I were most proud of. The fellowship is named to honor one of the original officers of our Association. Jim remains on our executive committee and on our board of directors.

Throughout the week, the children and families are involved in many different activities. The camp staff and volunteers are wonderful and they bring so much positive energy to everything that is going on.

One of the most popular activities at camp is swimming. It is an indoor pool that is surrounded by floor to ceiling windows. The light is spectacular for my photographs of the children.

I spend the week taking portraits. I never want to interrupt their activities, so I take photographs of the children with the light available and with whatever backgrounds they land in. The children are incredibly patient with me. Most of these children have known me for years. For those that don't, they catch on quickly. When they see me approach with my camera, they are generous with their poses and I always get great smiles. I will say this, these children know that they are loved by the photographer. And they sure knew that they were loved by Pauline.

I love stage night. The children work with the camp volunteers to pick out a song and their costumes. To see and hear these children get on stage and belt out their songs is wonderful. I absolutely love that they feel comfortable and confident enough to get up in front of a relatively large audience and display their amazing talents. It isn't all that unusual for me to cry through half of these performances. On the other hand, it isn't all that unusual for me to cry during a beer commercial.

Messy games. This is one of camp's most spectacular activities. One summer I shot enough video to create a fifteen minute documentary on messy games at the SRNA family camp. I wish I could show it to you, but google pulled it because it contained copyrighted music. My stills will just have to do. Hopefully, the images speak for themselves.

The children had completed their turns under the hook and ladder truck and headed to their cabins to get further cleaned up and changed for dinner.

As the wild and wet activity under the firetruck was winding down, this powerhouse of a beautiful child stepped out alone under the falling water. I had no idea what was going to take place in front of me, but as a good anthropologist might do, I focused my camera in her direction and began to shoot. What a wondrous performance. I wanted so badly to hear the soundtrack, but alas, it was only audible inside of her head. It was obviously inspiring. The choreography was absolutely spectacular.

And as I've been known to say, what a life.