Welcome to my Substack—Because I Kare—This space is for anyone who cares and/or provides care to others. It’s an acknowledgement that caring is hard…it’s isolating…and it can have major detrimental health effects on the giver of care. It is a place to learn, to vent, to share and most of all, to lift up and support the givers of care—which current statistics show to be approximately 1 in 4 adults in the US alone.
A little about what brings me here.
In April of 2014, my adult son Cheyne suffered a severe traumatic brain injury (TBI) while out riding recreationally on the motocross track. He was married with two young children ages almost 4 and 6 at the time. Life changed in an instant—not only for him—but for all of us who love him and are a part of his life. I hope to use this space to share some of the many challenges, victories and insights gained.
My therapist said I am the most hopelessly optimistic person she knows. Is that an oxymoron? It drives me—as does my son’s will to live—he could have given up many times over this journey, yet here he is. I honor that.
An accident like this could happen to anyone at any time. It has taken me on a journey through our complex medical system, legal system, social welfare system, long term care system, and ultimately, my saving grace, our higher education system. I have had a crash course (literally) in disability and becoming the voice and advocate for my now cognitively challenged, non-verbal, quadriplegic son.
Like my son, I have survived. At times I have thrived. At times I’ve gone down some very dark holes. Brain injury is a beast. It divides families and is socially challenging. Because the injury to the brain is hidden—it is not always obvious. Our acute care system performs miracles but once a life like my son’s is saved, the rest of our health care system is more dedicated to objective management—often warehousing people like my son who have no utilitarian purpose in society. Ins and Outs are documented and charted, medications distributed, a pre-ordained set of therapies applied universally—nothing considers the whole person, the human being who is very much still here. No one considers their autonomy or what they might want—it is all decided for them when they are voiceless.
I have fought against that for my son. I know my son. He loves family and community and activity. For me, he has always deserved to be cared for in a loving, nurturing environment and has a human right to therapies and treatments that benefit him—even if the progress is minimal.
So what I want to be here is REAL. I want to acknowledge how f’d up our systems of care are. I want to shine a light on the burden families in this situation carry. I’ll spend time not only sharing funny stories (because laughter and joy are lifesaving) but also creative and innovative ways we have approached finding ways to help someone like my son. I’ll also address the caregiver—so often equally marginalized and forgotten in the system—how this is an equity issue as women primarily carry this burden.
My hope is that you will find me and connect with me—share your stories with me. I’m a huge believer in synergy and how creating community is powerful and can change lives. I believe in reverse syndemics (if there is such a thing—that maybe our coming together can create healing rather than disease). I want your stories—to build an empathic community and lift each other up. To give us all hope…Afterall that is what was left in Pandora’s box.
I’ve had more than 12 years on this journey….and have been meaning to write for years now—so I have a lot of stories saved up and will definitely not have any sort of chronology to my storytelling…just whatever strikes me to post about.
Thank you for being here.