A hat that never leaves my head, but I don’t acknowledge often (enough) is the one of patient advocacy for people with traumatic brain injury (TBI). This week was unfortunately taxing in a number of ways that some of my supports are aware of, but one of the positives was proactively learning more about the John P Mayhugh Foundation in its mission to improve the mental health of veterans and I think it is very deserving of advocacy and this somewhat LinkedIn professional diary (lol).
I adore veterans, not because I myself was in the military, but because of the legacy many of them hold in my healing; in making me who I am today. In my early years of healing from severe TBI, I found that military people more often than what I would learn would be civilian people could “see” and “understand” me because there were more people with TBI and post traumatic stress (PTS) in this population.
The thing about TBI disability, is that if you are the patient, you don’t know what is wrong with you until 1) you wake up; 2) you start living and realize where you are “deficient” in comparatively to other people…and from first-hand experience I can tell you it is incredibly difficult to figure out what is wrong with you from the “inside” without support from the “outside”. And because I was a patient who fell through the cracks of the fragmented US system, I was just kind of rehabbing in the real-world and interestingly, military people helped me identify some of what was happening with me – tinnitus, vertigo, trauma, mental health problems. I still remember Rick, a marine, being the first person to acknowledge what it felt like to go into a bar and even though there was so much noise, I couldn’t hear anything – it was like my brain couldn’t process so many inputs at the same time – he could acknowledge me, he could see my suffering in a way others couldn’t, he was understanding me – empathy.
And I actually tear up writing this post because I’m humbled by how hard it was and how incredible these people are, military and veterans, who decide to risk their lives defending the place and the communities I live in, and sometimes getting super horrible conditions like TBI, PTS, or other ailments.
At this symposium, topics were covered from improving mental well-being four military children, families, and caregivers; innovation in mental health treatment; healing arts and the art of healing, and supporting wounds to wellness by connecting community.
From these sessions here are some notes I took (of which hopefully I captured correctly):
- 1/3 of students experience mental health challenges, of those 9% attempt suicide. Adverse Childhood Events (ACES0 increases suicidal ideation); 20% of children between the ages of 3-17 struggle with mental health.
- It’s important to think of places, systems, contexts (preaccchhh) and how they interact with each other in a concept call mesosystems. Strong systems are mutually reinforcing. Meaning that what is being taught in school is congruent with what is being taught at home and in other community settings. When this is not the case, this leads to weak systems and disrupts sound development. It’s not so much what is inside as much as it is what is in-between – connections.
- Research is currently fire-walled so it’s difficult for some actors to access best practices.
- Intersectionality might be best for greatest impact.
- It’s important to bring parents back to balance. Parents who are experiencing PTS often times pass this along to their children.
- It’s important to consider the transitions of environment for veterans; to think of the natural habitats of the populations you are trying to reach.
- Timing of care is key!
- Sometimes caregivers struggle to self-identify, the term caregiver does not always resonate with people. To reach caregivers better, ask about the experience they are having; it’s not so much about the label as it is about connecting people with the right services. Now the term is evolving to care partners.
- Benevolent experiences can counter adverse experiences and help people move from coping and surviving to living. Tools can be prescribed to help people maximize internal resources that can be augmented by external resources.
- There is a shortage of providers and reimbursement rates need to be accounted for contributing to these shortages alongside not having sufficient sites to train practitioners.
- Tehre is technology like Nightware, that is a non-invasive wearable that disrupts nightmares during the night.
- 7/10 people have trauma, the remaining 3/10 are living with someone who has it. Trauma is not what is happening to us, it is what remains inside us when there isn’t a sympathetic witness. Having someone to listen allows one to release trauma and that has a bio and psychosocial impact.
- What is the risk of doing nothing?
- It’s important to be your own advocate.
- talk to the end-user, don’t assume the patient or provider journey.
- When you bite your tongue, how do you know it hurts, because of the brain – pain is a reality.
- Our words count – Communication is what changes the world; the biggest mistake is assuming that communication is happening.
- And believe it or not…I had so many other tidbits too…
My mind is reeling with reflection and affirmations, but for this brief I am grateful for organizations like the John P Mayhugh Foundation to give a voice to the sometimes voiceless and bringing attention to those in need of better care. I did ask a question to the keynote speaker, Peter Chiarelli, about how we can ensure a better safety net for those who feel like the healthcare system is not meeting their needs and he said “family and friends”. And Mary Lowe emphasized, “peer support”.
I am just one use case of a rare and complex version of TBI, but my journey validates these answers too. I am so grateful to have experienced benevolence at volume (a protective factor against adversity) and to be surrounded by so much positive, healthy, and caring energy most of the time. It is an interesting human feedback loop to be part of, that at times it is tenuous and perhaps time-bound, but I still think one of the greatest successes of my network is making me truly believe that I am never alone; that any problem I seek to solve, there will be those to help me along the way, and for that I brim with gratitude.
One of my favorite closing remarks that the master of ceremonies said her mother said to her, which mimics something very similar my mother said to me: potential for improvement is infinite.
