Collective Healing

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.



Camp Make Your Heart Swell

I’ve spent the past three-ish weeks at Camp Mak-A-Dream, a medically supervised, cost-free camp in Montana for children, young adults, and families affected by brain tumors and cancer. My experience at Camp Mak-A-Dream (pronounced camp make a dream) was much different this year than last because I attended the brain tumor specific week for those ages 18-35 instead of 18 and under. I had anticipated the majority of attendees to be like me, attending college, starting to adapt to “the real world” post-treatment, and looking ahead into the future about long-term careers and goals. Some attendees were, but others were still developing social skills and hitting marks that they had missed along the way while going through treatment at younger ages. I was surprised to find that there were so many more widespread cognitive delays and intellectual differences between this group of participants than the teen group that I had previously attended. Regardless of where each of us was in our lives, we all expanded our camp families. I spent much of my time during the week as a camper documenting other participant experiences by creating “Humans of CMAD” modeled after Humans of New York which was a blast.

I spent part of the weekend between camp sessions out in the woods camping with the full-time staff, and had a blast. This was my first time camping at all, much less in Montana, and it was incredible. The hikes that we went on and views that we had were incredible. The rest of my time between my weeks as a camper and volunteer was spent helping out at RATPOD (Ride Around the Pioneers In One Day), which is camp’s biggest fundraiser of the year. The event raised over $400,000!!! 650 cyclers rode a 130-mile route to benefit campers even though it was freezing cold outside and it rained for most of the morning. Many of the cyclers stuck around afterwards to listen to four campers talk about what camp means to them. I was one of the campers to speak, and this is what I said:

“This camp changed my life. It was the first place where I met other people my age with my exact same obstacles, fears, and experiences. When I’m at camp I get to meet other people my age who too have experienced seizures and memory loss. There, relearning how to walk, talk, and rest from fatigue is the norm. We’re all on the same page. There are some things that you just can’t talk about with most people because they just don’t get it. Most people don’t know what it feels like to have awake brain surgery, or to sign an advanced directive like my friends from camp and I do. It’s hard to describe what camp is like because it’s so magical, and words can’t do the experience justice, but I’ll try.

Camp Mak-A-Dream is a place that reminds us that it’s never too late to become who we thought that we might have been before we got sick. Outside of camp we’re told that we’re different, and asked why we can’t just go back to the way things were before our treatment. We’re still struggling to find our new normal whether that’s five months or five+ years later. We aren’t the same people as we were before, which is very difficult for many people to understand. Our illnesses aren’t just a dot on our lives’ timelines because they continue to affect us psychosocially and cognitively even after treatment ends. The friends that we make at camp know what that feels like. Camp brings people together from across the country, and allows the noise of school, work, and families to be put on hold for a week. We are provided with the opportunity to open up about how treatment has affected our every day lives without judgment. We don’t have to explain why we take the medication that we do, because chances are that half of the rest of camp is taking it too! Campers don’t have to explain their leg braces, prosthetics, visual, or hearing impairments, because we all have a bit of at least one of them going on.

A side effect of camp is friendship. We find ways to meet up during the year all over the country. We text and Skype with each other reminiscing about our time spent at camp. As unbelievable as it sounds, some campers don’t have any other friends outside of the ones they camp. Camp Mak-A-Dream transcends all differences amongst people. It’s sometimes even joked about as camp make a baby because of the couples that it produces. Campers are able to find friends and partners who understand their same medical histories, something that is so incredibly difficult to do elsewhere. The amount of support that camp make a dream provides for its campers is absolutely unparalleled. Hearing about, and attending this camp is one of the best things that ever happened for me.”

Once the Teen Week session commenced I helped out in the kitchen on the Dream Team for most of the day, and elsewhere in between meals. I had a fantastic time bonding with the chef and our other volunteer. We spent just as much time joking and telling stories as we did preparing meals, and I was happily surprised at the amount of food that is actually made fresh given the mass quantity demanded. Most of the volunteers were former campers, child life specialists, or radiation therapists. One had been reading my blog before we had met, which I thought was pretty cool! The child life specialists and radiation therapists expressed throughout the week how this camp was the first time that they had ever interacted with patients outside of a hospital setting and had gotten to know their personalities, not just their patients’ cases. Many of these volunteers were from Michigan, and all arrived in one massive group in matching t-shirts. Dozens of teens from the same hospital center in Michigan had never met until this week. It’s shocking to think that so many people could be treated in the same small hospital, live in the same city, team up with the same care providers, under the same circumstances, and not get to meet each other until flying across the country.

Seizures made two unfortunate appearances while I was in Montana. The second could have been avoided, but the first was out of my control. The first, and worse of the two happened during my week as a camper when we went to a bowling alley. All of the loud noise, bright lights, and flashing games threw me for a loop, and I ended up going in and out of seizures for the remainder of the day. I spent that night in the health center just to be safe because an extra dose of Keppra didn’t help ease any of the events up. I eventually ended up taking Ativan, which seemed to relax my clenching hand, and help me to sleep everything else off. The second seizure instance at camp happened during my week volunteering. I had spent the night before staying up and talking with friends instead of going to sleep early, even though I knew that I had to be up the next morning.

Up until this week I had not interacted with kids who have lost limbs due to their cancer treatments, and it was a really humbling experience. These kids hopped their way up rock walls, navigated high ropes courses, swam, and made their way around campus without a problem. Their confidence to wear prosthesis or opt not to was incredible. My life challenges of living with an invisible illness are nothing compared to theirs of living with a visible one. They were stared at as we moved through the airport to board our planes, given pity looks, and sometimes even purposefully ignored. I never experienced any bullying for having short hair or a brain tumor, so I just assumed that bullying wasn’t a problem for kids with serious health conditions. I was wrong. I heard multiple stories about kids getting harassed for being bald and having cancer that made me sick to my stomach. When I think about how people act towards kids with cancer I think about compassion and kindness, but apparently that’s not the case with middle-schoolers and high-schoolers, which is a huge shame. These phenomenal kids are spirited, gritty and bold. I’m used to internally rolling my eyes as people tell me that I’m an inspiration. As a volunteer, I was able to be the person on the outside and looking in at such incredible, inspiring kids. They’re all going to change the world, whether they know it yet or not.

We all have to grow up a little bit extra to qualify for cancer camp, but once we get there, we get to be a kid again. I mean, where else can you spend the day making friendship bracelets?