“Some people come into our lives and quickly go. Some stay for a while, leave footprints on our hearts, and we are never, ever the same.” – A poem read every summer by John Bell, founder of Camp Okizu – A camp providing support to families with childhood cancer.
On September 9th, 2020 I received the news that Camp Okizu was partially destroyed by the wildfires becoming tragically endemic to Northern California.
As I knock on the door of my 37th birthday, 20 years after my last week as a camper and 11 years after my last week as a Camp Okizu Counselor, I can say without a shred of doubt that Camp Okizu is one of the most important gifts I’ve ever received. For the past year or so, I’ve tried to put into the words why this is the case, but the words never felt like they were enough.
Fueled by the hopes that my story can help Okizu in their time of need like they helped me, my family, and so many others in ours, the story that I’ve been trying to write for some time finally wrote itself. It’s complete with an ending that blew my mind, even though I’m the one living this story.
Thank you in advance for coming with me through a 25 year journey that explains all the ways Camp Okizu left footprints on my heart so deep, I have never, ever been the same.
Like all SIBS campers, my story begins with a sibling diagnosed with cancer.
My Camp Okizu story begins with my sister, Emily. At 6 months old, my mom found a lump in Emily’s uterus. She took my sister to our local hospital where our lifelong childhood pediatrician Dr. Ribeiro referred Emily to the Oncology department at UCSF – a prestigious research hospital. When my mom called my dad to share the news, neither of my parents knew what oncology meant, nor had they any inkling how this word would come to define the next year of our lives. All they knew was that they had to get Emily to this mid-week appointment by 3:30, and they had to figure out what to do with me, my sister, and my brother. My mom rushed to pull my siblings and I out of school and get us to our grandparent’s house as quickly as possible.
While we were hanging with Grandpa and Grandma, Emily was admitted into the ICU. We’d find out she had Acute Lymphoblastic Leukemia (ALL) – a rare blood cancer. We now fully understood what the word Oncology meant.
Our doctors at UCSF introduced my family and I to a free camp called Okizu.
Over the course of Emily’s illness, my parents did a really good job of involving us in everything that was going on. During one of our many family field trips to UCSF, while sitting in a conference room, a doctor passed my parents a thin tri fold brochure. Inside was information about a camp that offered weeklong summer camp programming for cancer patients, separate programming for their siblings, and weekend programming throughout the year for the whole family. And because this place understood the financial burden cancer can have on families, the camp was 100 percent free. With no real barrier to entry and after asking us if we wanted to go, my parents signed my sister, brother and I up for our first week of SIBS camp at Camp Okizu. In the summer of 1995, we packed our bags, hopped in our blue minivan, and drove up to Nevada City, California – Camp Okizu’s rented location before they moved to their forever home in Berry Creek.
Okizu turned out to be a magical place.
The moment I stepped out of our van, a camp counselor who I’m sure had a crazy camp name asked if I wanted to learn how to make a friendship bracelet. Already a fan of arts and crafts through my mom’s tutelage in crocheting and cross stitch, I got to work, weaving the strings looped around my fingers into a herringbone pattern that, unbeknownst to me at the time, would come to symbolize the next 15 summers of my life. My brother and sister had already faded into their own age groups, and my parents were already forgotten.
In the next week, I’d swim in the lake, run on the old PJ’s flat, eat s’mores, paddle around in bright yellow Funyaks, spit watermelon seeds during the carnival, and sing and dance to silly songs about Tajar and Rags and Princess Pat and the Wishy Washy Washerwoman around the campfire. I’d marvel at the fact that there were grown people with crazy names who threw hotdogs at me this one time during lunch. I sang Alanis Morrisette songs with my cabin group being careful to censor out all the swear words, much to the praise of our counselors. I connected with other kids who would become some of the most important people in my young life for the next 7 summers.
Amidst the fun and games and joy I also remember a more somber time when my cabin group and I sat down to talk about our feelings regarding our siblings having cancer. I listened to the stories of unwitting neglect and loneliness and sadness and confusion. I shared my own story and cried with all these others girls whose lives had been forever impacted by the destructive force that is cancer. It was the first time I remember ever sharing my feelings about anything.
When this blissful first week ended, I didn’t want to go home. There was something magic about Okizu. More magic than TV, more magic than Disneyland, and way more magic than that one girl scout camp I had been to. But home we went. I returned to the cycles of hospital visits and middle school dramas and uncertainty about Emily’s future. The only difference between this round and the round that came before Camp was that this time, I had cool penpals who had experienced the magic of camp and understood what I was going through in the real world.
My sister’s cancer was a rollercoaster ride for me and my family.
After a few rounds of chemotherapy, Emily’s cancer went into remission. Her doctors proposed a bone marrow transplant as a way to create long-term health for her. We found out I had matching bone marrow, and all we needed was for her to stay in remission long enough for her tiny body to be able to handle the stress of the procedure. Unfortunately, the ALL was too strong and Emily’s cancer relapsed. One last round of chemo to try push her into remission failed. Emily only had one option left. Experimental treatment that the doctors warned may be really harsh for a patient her age, and could result in pretty severe health complications down the road. My parents made the terrible choice that they felt was the right one for Emily. They chose not to move forward with treatment.
As we entered into the palliative care stage, Emily spent her last months at home sometimes hooked up to a cassette player looking machine that pumped meds into her body with an octopus-like profusion of tubes. A bright light in her short time here on earth, when Gloria Estefan would come on the radio, she still moved to the music with the tiny bit of energy she could muster. We watched, helpless as her small form began to waste away. As she got thinner and dark circles started to become permanent under her eyes, my parents told her she could let go. That she didn’t need to hold on for us anymore. The very next morning, 11 months after this had all started, and cradled in my mother’s arms, she did.
Summer camp and family camp helped me to move beyond death and live in the energy of life.
After Emily died, it wasn’t sure we were going to return to Camp Okizu. In his understandable grief, my father didn’t feel it was right to keep receiving Okizu’s gift now that Emily was gone. But we told him that there were lots of bereaved kids there and were persistent in telling him how much fun it had been and how many friends we had made and how much we loved it there. Eventually, he agreed that we should go back. As my parents navigated their own grief, we signed up for summer camp and we signed up for a family camp weekend specifically for bereaved families. What my Mom learned and shared with me after that weekend changed me and still helps me in times of loss.
During Family Camps, there are breakout sessions for parents to process what it’s like to experience the impact of childhood cancer. In her session during this bereavement weekend, my mom was exposed to all the different ways that bereaved parents grieve. A style that was painful for her to witness was when parents focused on death and ignored all that was alive around them – especially when the experience of death was up to ten years in the past. While she recognized that everyone is entitled to grieve in their own way, she told me that she didn’t think focusing on death is what Emily would want for us. My mom made it clear to me that the way to honor our sister’s short life was to let go of her and to live fully. At some point after that, at 12 years old, I made a secret vow to myself to live my life twice as hard because Emily never got her shot.
Camp Okizu was the best part of each year for many years.
Once it was clear camp was going to be a regular tradition in our summers, I looked forward to those weeks of play and fun and respite and connection all year long. Long before the era of cell phones, I wrote letters and, later emails, to my camp friends to stay in touch. My siblings and I started traveling to camp on the bus so that we could start our camp experience earlier and so that we could stave off the inevitable post-camp sadness just a few more hours when the week ended. As I transitioned into adolescence, many of the usual pains of teenhood still happened but didn’t seem to divide people at camp like they did in the real world There was simply too much ice cream to be made, too many friendship bracelets to be woven, too much laughter to be had, too many campfires to attend, and too much solidarity between us because of our reason for being there.
Becoming a Camp Okizu Counselor gave me a platform to experience the joy of living in service to others.
As a camper, Camp Okizu counselors were the conduit for all the fun we had and they were the absolute coolest people in the world to me. As they led songs at campfires, led special interest classes, and guided my cabin groups through the week, they all seemed so strong and fun and grown up. I definitely knew that I wanted to be one. At the age of 17, most Camp Okizu campers have the choice to either stay campers or to begin the transition to counseling. Without much hesitation, my tightly knit camp clique and I decided to enroll in Camp Okizu’s Junior Staff program. I shapeshifted from camper Rebecca to counselor Mystique, and the method behind the Okizu Magic was revealed to me.
Through the Junior Staff program, and then each subsequent year during staff training, I was exposed to the crystal clear and unyieldingly high behavioral expectations for Camp Okizu Counselors. Honed over years of experience and funyak tested with decades worth of campers, Okizu Magic is simple in theory but complex in execution. I learned that the role of every counselor was to put the kids first, give them unconditional love no matter how difficult they could be, and engineer inclusion at every possible moment. SIBS camp counselors had the extra task of making siblings of cancer patients the center of attention in a way they often weren’t in their lives outside of camp. Having been the beneficiary of the energy and the love that the Rizzos and Syscos and Mars and Veins and Nurse Cathys and Dr. Mikes and Susies and Bassmasters and Betas and Gonzos and Craftys had put out into the camp world, I took my role as a counselor seriously.
Over my 8 summers as Mystique I did everything I could to make Camp Okizu feel better than school, better than any other summer camps, and better than life out in the real world. I sang as loud as I could at campfires, put my full body into becoming that penguin going to tea, and invited every kid standing on the sidelines to dance like a crazy person with me at camp dances. I really did my best to live the message of being one’s special and important self that SIBS camp is all about. And while my actions were definitely for the kids, I would be lying if I said that I also wasn’t doing it because it made me feel amazing and powerful. There was nothing more satisfying than when at the end of the week of being the hype I wanted to see, campers would give me a huge hug, tell me they didn’t want to go home, and share that this had been the best week of their year. To give what I had received for so long was deeply meaningful and incredibly satisfying.
Camp Okizu’s gifts reached beyond camp and into my personal and professional life.
Being a camper was a beautiful gift, but spending my summers as a counselor was where Okizu became an inseparable part of how I move through the world. Spending my summers working side by side with my siblings Jungle and Hurricane, – who, real talk, were much better counselors than I ever was – somehow leveled up our relationship from being that of cordial blood relatives to the echelon of lifelong friendship. Being a counselor at Okizu was my first exposure to the reality that when you live any part of your life in service to empowering others, you can’t help but empower yourself in the process. By giving me a platform to live in service, camp helped me to blossom into adulthood with brightly colored petals open as wide as they possibly could be as I experienced the positive cycles of enriching life. And if the gifts of Okizu had stopped there, I would already consider myself one of the luckiest humans on earth. But the gifts definitely didn’t stop there.
The love-forward practices and philosophies of Camp Okizu reached far wider than PJs flat and far higher than the tallest obstacle at ropes course. What I learned about organizational leadership, team building, and creating safe spaces influenced the work that I began doing out in the real world as a budding sexuality educator. Okizu was there when I altered my favorite camp game “boppity bop bop” to teach sexual and reproductive anatomy terminology to several years worth of high school aged peer educators. Not only did forming uteruses and testes while shouting the terminology out loud bring my Sex Ed Squads together over serious giggles, but this altered camp game helped them to cultivate the confidence and comfort they needed to stand up in front of classrooms of kids their age and spit wisdom about sexual health.
Okizu was there when I made conscious choices to structure my classrooms to intentionally foster love, inclusion, and the emotional safety needed to be vulnerable based on crystal clear behavioral expectations with unyieldingly high standards. And while I’m stoked about how much knowledge I was able to impart on my students over the course of my time with them, what I’m really proud of in this work was the transformation I saw in their interpersonal skills and the way they came to value themselves more and more each week. In classrooms that smashed together kids of all colors, sexualities, backgrounds, and social statuses, I constantly got feedback at the end of year where my students were like, “This was the one place where I felt safe to share my hardships and be my full self.” Camp Okizu gives this gift to thousands of participants each year, and I still take satisfaction knowing that I passed that gift forward to an additional few hundred over the course of my career.
Camp Okizu stayed with me well beyond my direct participation in programming.
Although I didn’t know it at the time, my last year at Camp Okizu would be at age 25 in the year of the Swine Flu pandemic. I would spend my final week of SIBS camp as a counselor to the oldest boys on Harmony Ridge, paired with one of my best camp buddies, Fordoc. Counseling my favorite age group with a strong co-counselor who was also my homie was a literal dream come true. It’s a gift that I still can’t believe Susie gave to us, and as a result of this unbelievable match, my career as a Camp Okizu counselor ended on the highest possible note! Despite not stepping foot on the hallowed grounds of Camp Okizu since 2009, camp stayed with me. As I deepened my practice as an educator, facilitator, and coach, I kept altering camp games and kept creating spaces where young people and adults could be openly vulnerable and learn how to live outwardly in a way that aligned with what was inside.
In 2017, I came to see that, unlike Okizu, our system of school is not really based on love, acceptance, or fostering authenticity. Year after year of watching students wilt instead of blossom no matter how much love I personally threw at them, gave me a deep sense of knowing that I wasn’t in the right place anymore. Following my inner voice, I left my 12 year teaching career behind. I traveled to a permaculture farm and spiritual healing center in the middle of an ancient forest next to a lake in Chilean Patagonia, and Okizu was with me. I brought sexual and reproductive anatomy boppity-bop-bop to a group of 40 adults from all over our planet, and it was as hilarious as you might imagine. Amidst the laughter and joy of this place, my old life died and I began to focus on bringing new life to an existence dedicated to environmental repair.
Camp Okizu is with me now as I work to build a better future.
As I sit here today telling this story, I’m currently on an adventure to figure out what I can do within the power I have to build a better future on a thriving earth. A big part of my journey has been exploring what peacemakers, philosophers, scientists, spiritual leaders, social entrepreneurs, and everyday people working locally think we will need as a human species to transform our world to one where life is meaningful, just, and ecologically regenerative.
Through my years-long journey through books and conversations and reconnection to nature I’ve come to a beginner’s knowledge that each of us has a powerful and unique way we are meant to build a better future. In my journey to find my own unique answers, I’ve made mistakes, tried to be someone who I’m not, thought I needed to rebuild myself completely, and also happened to ride a fully loaded bamboo touring bike that weighed 130 pounds up and over the Pyrenees, (which was pretty dope).
The entire experience showed me that the most powerful thing I can do now to contribute to a better future is to heal myself into wholeness, and to stop defining myself and my happiness by external standards. I’ve come to discover that what makes me feel whole is giving away my life-enriching skills of storytelling, facilitation and coaching without charging people or expecting anything in return for my services. I feel whole when I listen to myself and follow my deep inner voice in whatever direction it takes me. I feel whole when I live by my values and shine my authentic light as brightly as I can, no matter hard this may be sometimes.
As I get better at dancing my unique and sometimes whacky dance of healing and wholeness and giving without expectation, I’m starting to help people on the sidelines join me on this eclectic dance floor to a better future. Kinda like I did all those summers at Camp Okizu.
I am because Okizu is.
Now. Here is the point in writing of this story where I began to struggle. You see, when I sat down to write this, I had an idea for the deeply profound ending that I would write. I would thank Okizu for helping me understand that Emily’s death brought an enormity of gifts to my life. I would thank all the people who make Camp Okizu possible for inspiring me and giving me the skills to become an agent of service and helping me help young people for 12 years. I would thank Camp Okizu for teaching me the power of gift economy and for showing me that love is always the way forward.
And while all of this is true, I should’ve known better – especially as I’m in a journey to let go of controlling outcomes. As I sat there, trying to control the ending, my deep inner voice was like, “Nah girl that ain’t it. You haven’t quite cracked the depth of what being a part of Camp Okizu meant to you!” So, following an instinct, I went to Okizu’s website and looked up the meaning of the word Okizu.
Okizu (oak-eye-zoo) comes from the Sioux language and means unity, to come together, to heal from a hurt, to make whole.
When I read this, chills ran through me and unexpected dirty tears of joy fell from my eyes. While I have known for some time that Okizu is a profound part of me, it wasn’t until writing this that Okizu’s impact on my life made itself known with such clarity.
The seeds planted in me by Camp Okizu as a child and nourished throughout my young adulthood are now in full bloom. Okizu is the way I build a better future.
Thank You Camp Okizu!
To Suzie, John Bell, Dr. Mike, Tajar, and all the counselors and administrators who touched my life: While I know that I owe you nothing for what you’ve given me, I wish for you to know that. I wouldn’t exist in the way that I do without the footprints you’ve left on my heart.
To all the people who are the heartbeat of Okizu right now, I wish for you the gift that camp gave to my life. I wish for you the eyes to see the gifts that can come from loss, and the capacity to transform death into fuel for a brighter future.
How You Can Help Camp Okizu
Go to www.Okizu.Org/Match and make a donation.
Donations are being matched up to $100,000 until the end of September, so your donation is twice as powerful.
Become a volunteer.
Subscribe to the Okizu email newsletter for real-time updates in terms of need, or check out the Volunteer section of Okizu.Org for more information on how to get involved.
Share Your Okizu Story.
If you’re a member of the Okizu family, share the way that Okizu has impacted you.
If you want to share your story, but you’re struggling to put it into words, get in touch with me. I will help you for free. All you need is time and the willingness to share your story. You can contact me here.