If you are a regular reader of my blog, you know I was diagnosed with brain cancer at age 24. I felt like I was no longer my parents’ child because I had an adult life of my own. But when health crisis hit, hardly anything was left of my adult life—suddenly I was my parents’ child again. This was not the best feeling—especially as my career was taking off and I was in love. My brain tumor interfered with my life as I knew it.I had an identity crisis at age 24. I wasn’t expecting something like that until I was at least in my 40’s. Everything that had defined me—my career, my looks, my sports activities, my independence—was abruptly taken away. How could losing all this not affect me emotionally? After a period of total disillusionment, I realized what I was left with was who I was on the inside—my values, my character, my dreams. I learned an important lesson—what I had on the inside was in fact my identity. Self-reflection and writing down my thoughts helped me be introspective, and draw meaning from what I was experiencing.
From my perspective, here are some ways I feel you can help young adult patients:Encourage them to explore who they—before, during, and after illness. Don’t forget the importance of missed milestones, and the significance that may have on the individual. A huge part of a young person’s identity is defined by their relationships, so try and honor the importance of his or her friendships by encouraging normal opportunities for socialization. Help young adult patients discover how to strengthen their bonds with their friends by being open and honest with them.When I was diagnosed as a young adult, having my autonomy taken away was a big issue for me. Too many people were making decisions for me or talking about me, without including me in the conversation or the decision-making process. Even though the outcome likely would have been the same, the process of feeling included would have made a difficult situation feel totally different. Today, it is well-known that patient voice and feeling in control are important components of feeling capable—a huge component of emotional health.
Even though I did not have a good prognosis, the patient empowerment program I attended taught me I could set goals—from short-term six-week goals to much longer-term goals—in all areas of my life. “Pure Pleasure Goals” were the goals that the program encouraged us to set to bring me joy, to bring the type of people I wanted into my life, and to honor my spirit, values, and skills. Allowing young adults to dream and encouraging them to set goals in various areas of their life and for different lengths of time, can be very healing.
Sheri Sobrato Brisson is a brain tumor survivor who discovered the importance of self-reflection during her recovery. From her personal illness experience and a dozen years supporting families and children with serious illness, her life’s philanthropic mission is to empower families and children facing serious illness. She has started and facilitated support groups for children with illness and their families for over twenty years with organizations such as the American Cancer Society, National Brain Tumor Foundation, Ronald McDonald House, and Packard Children’s Hospital. She has served as Board Member for many children’s health nonprofit organizations including American Cancer Society San Jose, UCSF/Mt. Zion Auxiliary, Creighton Health Institute, and Okizu Foundation. Brisson received her master’s degree in counseling from Santa Clara University and her undergraduate degree in human biology from Stanford University.
Read more about Sheri at https://diggingdeep.org
Dear Sheri
– I LOVE your post, and your courage to be open about it! This is the greatest gift of all, to be known and loved for yourself, which you truly are. – I too suffered from a traumatic brain injury, only from childhood, and with major amnesia. But, mine is a little more complicated because I didn’t even know I had it. However, now that I do know myself, I learned that I have loved and been loved by many people – who I had no memory of before now! Also, I can now connect with people at a much deeper level, and I can feel supported in a way I never have before. These are only a few of the gifts of what I call “Total Recovery”. **THANK YOU SO MUCH for always being there, especially for the children. Pots of Leia Love (PLL) to you, and to all the families out there. You’re the best.