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Communitas

In Memoriam: Clara Jackson

February 3, 2000 – July 4, 2019

Clara was a young beautiful girl, with a smile that lit up every room she entered. Her thick dark lushes hair and eyelashes that went on for days, was the envy of all the nurses at UCSF.

Music made Clara happy! She wrote songs, sang beautifully, and even at her lowest times could be found dancing. Her favorite nurse Kelli always had time for a dance with Clara. Even with IV’s hooked to her arms, feeling the terrible side effects from her Chemo, dancing was the one thing that helped Clara the most when she was struggling.

Clara was asked to participate with 3 fellow cancer patients in a musical video. It is a moment in time we will always have in her remembrance.


Clara had many talents. She loved to paint, draw and write poems. She also had a love for all animals and was involved with her twin brother Keith in FFA throughout high school. She had a pig named Johnny and a lamb named Navy.

Throughout her medical journey, Clara always wanted to become a nurse. Halfway through her treatments, she decided a nurse practitioner might be the better route to take. She had a huge heart and loved everyone, and she wanted to help those that might endure their own medical challenges.

Clara had a special love for her dad. He would come in early in the morning to her hospital room, she would say “shush mom is sleeping” and they would have the most wonderful quiet conversations. They both share a love for pizza, and she would always tell her dad to leave early and go eat his favorite pizza at Sparks because they closed at 9pm.

Clara wanted to work at a young age. She had her first job at 16. She had a great value for money and always was very appreciative of gifts she was given throughout her life. When her Godparents gifted her a car, it quickly became her most prized possession.

The doctors and nurses at UCSF were nothing less than amazing. We are all so very grateful for their dedication, knowledgeable expertise, and for the wonderful care she always received.

Clara is no longer in the physical world, but her smile, her beauty, and her love for her family will forever live on through her spirit in many ways, especially through her music.

We love you Mami, we miss you more than words will ever be able to express. You are our angel in heaven Clarita!

-By Martha Jackson, Clara’s Mother

November 12th, 2019//By //

Reflections from a Teen Retreat Participant

When I left the Communitas retreat, I went straight to work. I felt weird during the two hours that I worked that day, like a part of me was missing, and managed to stick it through another half hour before leaving early and not completing the remaining two hours of the shift. To date, it is the only time I have had to use my sick hours. I got in the car and sat there, didn’t even turn on the AC, for more than a half-hour. I felt like a part of me was missing, and that something in me had fundamentally changed since the last time I had been here, just five days previously. 

Five days before, my Mom and I had arrived at a red house with our wagon almost overflowing with stuff that we probably didn’t need to bring. I was nervous, I was stuck with this group of nearly all strangers for the next five days. It felt impossibly long. But before I went to sleep that night, only hours later, I already knew those five days would be way too short. I wanted to stay there forever.

I had done one of the Communitas support groups the spring before the retreat last June. I knew what the mind-body groups were like. I anticipated the skills we would learn, whether it was art therapy or the check-ins that usually lasted most of the two hours set aside for group. What I didn’t anticipate was everything else, the amazing meals cooked by Commonweal staff, the walks to the ocean, the way it was so easy to talk to this group of people, even though less than a week earlier, they had all been strangers. For the first time in my life, I could be myself around people my age. I didn’t have to pretend to be way less sick than I am and then deal with people around me telling me that I must be faking it. I didn’t have to think about all of the little things that make life more difficult in the real world. For the first time since I have gotten sick, I felt okay with the way I was. 

Anyone who’s had a chronic illness knows it means fighting two very different fights. One against your body, and one against everyone else who thinks they understand your body. Brittany’s goal was to, for at least that time that we spent there, make the second fight disappear. All of us came to that retreat for different reasons, but one thing I think we all have in common is the want to be understood. In my almost three years as a medical mystery, what the retreat gave us in those five days was the best thing I could have ever gotten.

It’s strange to look back on the retreat now, so many months later. It feels like a lifetime ago, and also like it was just yesterday that I left. There are so many things I feel like I can’t even talk about because those moments are so special to me that I doubt I could even find the words to express how much they meant to me. 

Natalie Comerford

November 7th, 2019//By //

In Memoriam: Bianca Valdivia

May 13, 1998 – October 30, 2018

I met Bianca when she was 15 years old, at the start of our first Communitas group in 2014. Bianca endeared herself to our Communitas group and staff from the beginning, with her kind and gracious presence. She became our most dedicated community member and participated in every Communitas group we had from 2014-2018, evolving from participant to program volunteer, leader, and advisor. She helped us launch the first Communitas Health retreat in June 2018, and served as our teen program volunteer and counselor. Bianca became the heart and soul of our program, the glue of our community, and touched so many lives in the process of her involvement.

When Bianca was 10 years old, she was diagnosed with a rare lung condition “idiopathic pulmonary fibrosis”, which forced her to rely on an oxygen tank to breathe and be hospitalized frequently. Her condition progressed to her requiring a double lung transplant for her survival, which she received in August of 2015. For 3 years, she was able to live a more normal life, finishing high school and attending college to pursue her dream of becoming a child life specialist. She was able to spend the night away from home for the first time and travel on an airplane. She got to dream of her future again.

Unfortunately, in August 2018, her lungs began to fail rapidly, and she was placed on life support, as she awaited a second lung transplant. She was able to receive a new set of lungs in September but faced many complications after the procedure. On Oct 30th, 2018, we lost our dear Bianca after a 2-month struggle in the ICU and a wave of grief hit our Communitas community, her many friends, and loving family.

It’s hard to describe Bianca because when you say the words, they sound too good to be true: radiant, compassionate, positive, endlessly grateful, always caring about others even when she was suffering, beautiful inside and out, full of joy and love. She was a sweetheart, but she was also a determined fighter and one of the strongest people I have ever met. She was wise well beyond her years and knew what truly mattered in life—a naturally old soul made even more knowing by her struggles.

As she told one of her nurses in the ICU on one of her final days, Bianca was put on this planet to inspire others and she felt that she had gotten to do that. I absolutely know she accomplished that and so much more, as I have witnessed the impact she had on those around her in the Communitas community. She made everyone in our groups feel so at ease and on their hardest days, inspired them not to give up. When I went to say goodbye to her at the hospital, I whispered in her ear that I was going to make sure her inspiration carried on into the future through the Communitas Health organization and that as many people as possible knew her name and story.

I set up a scholarship fund in her honor, so that as many families as possible can experience the Communitas Health Retreat—a program that meant so much to her and that she helped shape and guide. By enabling others to attend this program in her name, I know that we will carry forward her life mission of helping other kids experiencing chronic illness and create a lasting legacy for her.

Knowing Bianca and being in her presence has been one of the greatest honors and blessings of my life. Thank you for teaching us how to smile through our struggles and be grateful for each other and the little things in life. We love you and miss you every day.

You can donate to the Bianca Valdivia scholarship fund here or by mailing a donation to: Commonweal/Communitas, Commonweal, PO Box 316, Bolinas, CA, 94924 (please note that the donation is in honor of Bianca Valdivia).

With love and gratitude,
Brittany Blockman 
Communitas Health, Founder/Director

November 7th, 2019//By //

Invisible Illnesses

My name is Lily, and I have had Juvenile Arthritis since I was a toddler.

For the past 18 years, I have watched the power of medicine– from rheumatology appointments to x-rays and MRIs, drug infusions to surgical procedures, or physical therapy to nonprofit philanthropies. I’ve watched it all happen around me, and it became my “normal”.

I joined the Communitas family a year ago, and have learned that healing stems not only from drugs and science, but also mindfulness and meditation. This program is incredibly impactful, and I am excited to see how it affects this current group of young adults and parents.

Many of us who participate in the Communitas program can relate to the feeling of hidden suffering. While we may be young and seemingly carefree, we are battling numerous chronic illnesses, and have learned to mask the pain.

For my first blog post, I have decided to focus on the topic of our daily lives, and how much we are impacted by our disabilities. Hopefully, this will not only help you feel less alone in your struggles, but it will also help others gain insight into the world of invisible illnesses.

Attached is a short poem I wrote to reflect my feelings of frustration. I encourage all of you to keep a journal and write down everything that is going on in your life…It can be incredibly healing.

♢♢♢

03/17/2016.

Today, I woke up in a flare.

            I lift my arms up over my head, slowly, anticipating even the smallest movement to cause a chain reaction of pain. Swinging my legs out from my cocoon of warmth, I feel my knees swell from the pressure of motion.

            Today, I am in a flare.

            Act normal. Say hello, walk in a straight line. Keep your gaze straightforward; the neck stiffness is making it difficult to look around. I feel my right hip joint buckle unnaturally, a dull ache that demands attention. Now limping, a young athlete hollers to move out of his path. I grant forgiveness for his rude attitude—my illness is invisible. He didn’t know better. He is entitled.

            During work, I am in a flare.

            Standing on my feet for hours. My back begins to heat up—I know it’s not happy with me. It begs me for a ten-minute break, which is an hour away. Act normal, smile at customers. Massage your shoulders at every opportunity. An elderly woman comments that rain is aggravating her rheumatism. I wink and strongly empathize. She gives me a cold look and proceeds to lecture me on the trials and tribulations of aging. Her advice: live while you’re young. I provide her with jasmine green tea and she exits. The day stretches on.

            At the party, I am in a flare.

            Social occasions. I promised my friend that I would be there; it would break her heart if I had to cancel…again. I look around for an escape route. As always, I am surrounded by happy, healthy people who have little to worry about. By now, all 360 joints in my body are swollen, tired, and ready to give up. Act normal, be friendly.

            Tonight, I am in a flare.

            I waddle home, carrying a ten-pound backpack. Gently, I untie my shoes and run a bath. I soak for hours, waiting for some relief that I know is far away, unattainable. I crawl back into bed, knowing I have to wake in six hours to repeat it all over again.

            Tomorrow, I will wake up in a flare.

♢♢♢

I wish you all well in the next coming weeks. It is the season for sneezing and head colds, so take care of yourselves.

-Lil

April 25th, 2016//By //

Welcome to the Communitas website and blog!  I hope this site serves as a resource for young people facing chronic illness and their families.

Through my personal and professional experiences, I have come to see serious and chronic illness as a turning point for patients and families. With that in mind, I have had a long-standing vision to establish Communitas, a program for young people with serious chronic illness and their families to come together to heal and explore what really matters.

I have been on a path to create Communitas ever since I lost my mother to cancer during high school. My journey with my mother through her 3-year experience with cancer taught me about what is at stake for patients and their families and what it is like to live with the ups and downs of chronic illness. It inspired me to become a doctor who puts the patient’s and family’s values and experiences first and to strive for a kind of medicine that helps people not only heal, but thrive. As I journeyed with my mother through her battle with cancer, I saw first-hand the healing powers of a holistic approach to health that involves engaging with self-care and mind-body techniques, nourishing the body through healthy nutrition, reducing stress, spending time in the natural environment, and connecting with a supportive illness community.

My mother’s life ended far too soon, but I have made it my mission to carry the torch my mother lit for me and bring communities together around serious illness, expand their conceptions of healing, and help lift people up in the face of adversity. I believe that given the right environment, community, and tools, adversity can be the thing that transforms a life and family in a positive way. With this in mind, I envision a new healing model in Communitas that brings people together and helps families re-orient their lives in a positive way moving forward from illness.

My long-term vision is that Communitas would evolve over the next 1-2 years to become both an outpatient day-program and a long-weekend retreat program hosted in a natural environment for young people with chronic and life-threatening illness and their families. I look forward to partnering with others to make this dream a reality.

 

 

March 9th, 2016//By //