Dear Donor,

Building Heal The Brain began in an ICU on August 17, 2017. I had been to many bedsides in the ICU, talking to family about ranging a patient’s arms or helping with positioning. Speaking quietly out of ear shot with neurosurgeons about the likelihood that so and so would “pull through” and mentally gauging what their next year inside a rehab hospital would look like was not a new experience. However, nothing prepares you for seeing your Dad, looking small and fragile, connected to a machine that is raising his chest up and down in a sickeningly slow rhythm. Your brain acknowledges that this is the waking terror before suffocating grief. I had seen this grief in many family members' faces as their loved one moved forward in a new, unforgiving, often painful life or ceased to be all together. Either way, the person who entered this hospital is no longer and the grief of this loss is an unrelenting series of deaths, so private and profound that many survivors and families never find resolution or peace.

I had a lot of time to think in that ICU room during my vigil with Dad. Planning seemed to feed the tiny embers of hope that were banked somewhere in the back of my mind. I received text messages from my patients with promises of prayers and support that made me think about what life might be like, and the thought overwhelmed me. My brain began to catalog the people who did well during this process and the people who, despite everything, succumbed to mind numbing depression. No amount of schooling can prepare you for the helpless feeling that comes from losing a person to hopelessness. In OT school, we are taught to adapt, to educate, to help, but nothing prepares us for the realities of life post brain injury. Many rehab professionals actively avoid working with this population, because of the slow progression and the many factors that can derail progress. Within the medical model, there is a quiet acquiescence that we did enough by saving a life. It does not matter if a survivor cannot care for themselves, speak, pay their bills, navigate through their community, or be left alone without harming themselves. Quality of life is not a medical necessity. We have a breathing tube to keep people breathing, but nothing in place when people do not want to breathe anymore.

People often ask me what is the resource that people post-brain injury need the most and my answer is always: TIME. Brains need time to repeat concepts and grow new neural pathways. Three months in rehab and several outpatient visits will help a bone heal properly and assuage some painful muscles. It is not enough for a brain. Like-Minded gives survivors time. We use this time to reinforce concepts learned in occupational therapy, physical therapy, and speech therapy. We also allow our members to explore what it feels like to speak and feel in their new body with their healing brain. We treat survivors with respect while nurturing their newborn brains in a manner that ensures their success and builds agency. In the three years, we have been 90% member-funded. We have proved that we are a necessary “lifeline” and “safe space” to grow. Many of our members have been impacted by this pandemic or are having a difficult time adjusting to living off of disability.

The universal truth of life post-brain injury is that, if not wealthy prior to your injury, poverty is a new unrelenting part of life and a huge barrier to recovery. Many of our members describe being ten dollars away from not being able to pay their bills or not being able to continue with therapy due to lack of funds. We are bridging the gap, but we need your help. Your donation contributes to keeping our virtual lights on, but more importantly to provide more services to our community. Your money gives our members a chance to breathe, and the time they need to heal and foster hope in their new life.

With the utmost gratitude,

Jane

Founder, Heal The Brain

Dear Donor | Founder's Letter