This was my fourth year at Camp Mak-A-Dream with The Children’s Brain Tumor Foundation, and my second as a volunteer. After attending as a camper for two years and finding my community, I knew that coming back and volunteering during that same session, the teenage brain tumor week known as the Heads Up Conference, was what I needed to do in order to help other, younger survivors do the same. Every year when I go back, I see a little bit of myself in younger campers. In the first-time campers, I usually see a hesitancy to talk about how their diagnosis has affected them on a deeper level. Whether they realize it yet or not, telling the same diagnosis and treatment story over and over again is so much easier than actually talking about how the diagnosis has affected them as a person. It’s common for people to ask what happened in terms of how/when you were diagnosed, but not what happened after that. Camp is the place where you can start to explore the “after that” part.
I arrived last Friday in the evening on a flight with two campers, while the rest of the campers and volunteers arrived earlier that afternoon. I opened the door to the upper lodge where we eat all of our meals, and was blasted with hugs for a full ten minutes. It was like being wrapped up in blankets of love over, and over, and over again. Pure bliss. I had met many of the campers during my first year at camp four years ago, and it was so incredible to see them and hear about their accomplishments since then. One wrote a cookbook, another volunteers at recreation therapy center every week, two have full rides for their first year of college, and another was voted prom queen this past year!
This year I volunteered as part of program staff and helped out wherever needed. If the sessions were our usual camp activities like the high ropes course, zip line, art barn, etc. then I helped make sure than they ran smoothly. If we had expert members come in from the community to run activities such as a poetry workshop or meditation session, I got to sit in on them and observe. Those moments were special because I had a chance to truly take a step back and analyze what campers were communicating with their behavior and language. Every word that comes out of our mouths is an indicator of our state of mind and self-perception, and confidence is always a big focus and something that we want to boost for everyone at camp. During the poetry workshop, some campers chose to write about their medical experiences, and others did not. I really appreciated those who did, and thought that those poems were extremely powerful. To build off of that workshop, another program volunteer had the fantastic idea to create the opportunity for a music therapy workshop where campers could set the poems that they wrote to music. We brought out the drums, shakers, and pulled up an online music library to give campers a variety of options to work with. Providing creative outlets like this is so important, because de-stressors can be so easily forgotten about in the midst of a storm.
Friendship bracelets are a big part of camp. Whenever we’re riding a bus for a camp fieldtrip, or just sitting around waiting for an activity to start, you can guarantee that there’s string and bracelet making going on nearby. One afternoon I spotted of the bubbliest campers just sitting there looking a bit defeated, when there was plenty of string on the table right in front of her. I asked her why she wasn’t making a bracelet, and she replied that she had never made one before because she only had one “good hand.” A lot of our campers have some sort of right or left sided weakness, but unlike me, theirs doesn’t just go away after a seizure ends because theirs is permanent or semi-permanent from their surgeries. So, we made a bracelet together. She held the main string, and I weaved the second one around hers. And afterwards, she had officially made her first camp bracelet. We worked together again as a team when we volunteered at a food bank and labeled packaging bags and had to remove stickers from a sheet of paper as well. I get to resume all of the activities that I usually do at most up to three days after a seizure, but at camp, I’m reminded that some survivors have to adapt to their new normal full time, and don’t have the privilege that I do to regain bilateral function.
I noticed more of a focus on mental health this year than ever before, and I was glad to see it. Brain tumor patients often exhibit depression and anxiety, and mental health is so stigmatized that it only exacerbates the problem. Older campers really stepped up in the group discussions and made sure that younger campers knew that what they were feeling, whether they wanted to talk about it or not, was normal, and that they were there for them. One camper even put his phone number in each and every camper’s warm fuzzy bag (a name-labeled bag where you put nice notes for someone that leave them feeling “warm and fuzzy” after reading them) to call if they ever need to talk.
From caring about fashion to now valuing family, having to give up sports for medical scans, going from caring about popularity to caring about the well being of others, and thinking about a career as a fashion designer to switching over to one in the medical field because of their therapist and treatments, campers really identified a shift in their priorities post-diagnosis this week. Their self-awareness and sense of self at a young age is something stronger than their peers. I am proud to have reunited with and have had the opportunity to interact with so many new, incredible individuals. This week they were told that they are worthy, that they are unique, and that they are good enough regardless of their disabilities. And they are.
Camp is where my before and after surgery worlds collide. It was at camp three years ago that I had my conference call with Dr. B in San Francisco and with my parents in Michigan while I was in Montana to plan my surgery. That’s just how the timing worked out. Whenever I visit, talk about, or even think about camp, I find it hard to believe that that call was made there. How could I possibly have scheduled my brain surgery, something so stressful, so absolutely terrifying, at a place so peaceful and so calming to me? But it happened. And now, three years later, it seems like a far off dream and hardly even a reality. I had a meeting in the same room that I made the call in at camp this week. It didn’t feel that strange at the time, but thinking back on it now, I wish that I had asked for it to be moved to another room so as to avoid bringing up those old memories.
Camp is a space for collective healing because of our collective trauma. Visual and hearing impairments, physical weakness, processing delays, and difficulties with impulse control are primary side effects from our brain tumors. And because of those, we are automatically othered. Bullying, depression, anxiety, and social isolation are secondary side effects that may have an even stronger impact than the initial disability. At camp, the narrative changes. For one week, we’re all on the same page.