Now Where Do I Belong?
I think one if there was one thing that I wished someone had told me right after my traumatic brain injury it would have been this, find a support group or community of other survivors that understand what you are dealing with.
This simple thing was my greatest asset in my healing journey. One that I cannot even express enough in words. Right after the hospital I was all out of it. Being released too early with no support team it was like being alive but only being half aware of what was happening to me. It was both scary and in some ways peaceful. I know it doesn’t seem like those two things could exist but when your brain is only barely functioning, they can. You are not fully aware of what is going on around you or even within you, and while yes that is scary, there is a certain amount of peace that comes with that.
I found myself though not knowing who I was and then getting super frustrated with myself. Almost like a toddler. Why can't I determine distance between my coffee cup and the table? Why am I leaning to the left when I walk? Why can't I remember words or even simple tasks?! Everything inside me was screaming what the hell is going on, but my brain was too damaged to engage with those emotions. I had no idea who the hell I was or even who I was before this happened. It is a weird place to be in. Its like being lost without anyone else noticing your lost. Your navigating on some kind of auto pilot but have no idea who is the pilot and where the hell you are going.
My self worth plummeted and with that my self confidence. How could I be confident when I didn’t even know what I could do anymore versus what I cannot do? Is this what toddlers feel like when they are first trying to walk? Not sure why they are doing it but just going by instinct. When they fall thinking, “Well that stinks and didn’t feel good but let's get up and go again?” My friends couldn’t help me, my family wasn’t even around to help, no one knew what to do with me except to remind me that they missed the person I used to be. I would hear that and think, I don’t even know what you mean, who was that person? It just pushed me further down into this abyss of blackness, nothingness, of just space where I am floating around screaming for help, but no one hears me. All I knew was that I cannot stay here in this space. I cannot just be like this. I have do move forward somehow. I didn’t survive to live like this.
I immediately grabbed my computer, which by the way I was not supposed to even use, due to it could cause more damage. Not having the capacity to really even understand that I did what I instinctively knew to do. Find someone, anyone that knew about TBI’s. I tried to google TBI and the first thing that popped up was this non profit called Love Your Brain. They offered yoga and while I didn’t care about the yoga I at least they understood my injury. I emailed them and someone from there called me right away. As she talked to me she explained that they offer a free 7 day retreat in Vermont. If I could get there I could go if they accepted me. She said I would need to fill out an application and do a phone interview with the guy who ran it. She explained that I needed to fill out the application asap because they were no longer taking them after that evening.
Knowing I needed this, I did it right away. She personally set up the interview with Adam the guy who started and ran the program. We chatted and they explained this would not heal me but their hope was to create community, support and expose us to new ways to help us along our healing journey. Sounded great to me. I didn't care what they offered if there were people there like me. I felt like I was drowning, treading water but I was starting to lose that battle and if I didn't do something, I would end up in a very bad place emotionally.
The interview ended and I waited for the call to see if I was accepted. I remember that night just crying my eyes out thinking if this doesn’t work, what will I do? How does an injury make you such an outcast like this? How do the people you love, leave you when you need them most? Why me?! I took a few deep breaths and realized this self talk isn't helping me but I couldn't stop it. It was like my brain was operating on a different frequency then the rest of me. The worst part of all of this was I had NO ONE to talk to about it. The doctors all but told me they would learn more from me then I would them. They had no idea what to do with me and with no healthcare coverage they sure as hell weren’t going to try and figure it out.
I got the call the next day, I was accepted and they would love to have me at their retreat. I remember crying and thanking God for helping me. Now I had no idea how I would get there. I was living in Charlotte, NC and I had to get to Burlington, VT. I wasn’t supposed to drive yet long distances and I couldn’t afford a flight. My wife didn’t drive so it was all on me. My mom had booked a hotel mid way from NC to NY and I would come to their house, in Buffalo, rest for a couple days, then head out again to VT. Looking back I should have done that trip, hell no but nothing was going to keep me from getting the help I needed. The alternative was, well to be honest I wasn’t even allowing myself to consider that. If no one was going to help me, I was going to have to help me.
I made the trip and I have to say it was one of the toughest road trips I ever made but I did it. When I pulled into the farm on top of the hill in Vermont, I was so nervous. I could barely engage with people without having to be in bed for days to recover. I didn’t like who I was but my brain wasn’t allowing me to be any different. I started to cry again, (which happened a lot) in my car thinking how everyone here would judge me or not get me. Wondering would it be like it has been everywhere else? I got out of the car and went to check in, immediately when I walked through the door, Adam walked up to me with arms opened wide, giving me a big hug, saying, “Welcome, we are so happy to see you and have you here!!” Immediately I felt a huge weight lifted off my shoulders. No judgement, no hesitation just nothing but acceptance and love.
As they showed me to my room, I got to meet the other survivors. My roomies were also two other survivors who only had their injuries a year ago like me. They also had major headaches, and struggled with energy, noise levels, and everything I was struggling with. To say I finally felt seen was an understatement. That first night we all gathered in this nice big refinished barn and went around the circle sharing our personal stories of how our injuries happened. I cried my eyes out but we all did. As I listened to everyone talk, I could relate so much to everything they were saying. I wasn’t alone anymore. These strangers, that now felt like family in just a few hours, get me. They see me and love me anyway.
Sharing our stories to a bunch of strangers was such a vulnerable moment for us all, but it sets the tone for the rest of the week. We had nothing to hide now. We shared our souls, pain and grief. We embraced each other as we cried and held each other as we processed what had happened to us. This was just the first night!!! The momentum continued the rest of the week. While we did workshops, yoga, meditation and different modalities to help us, we would all look out for each other. If someone looked drained we would gently remind them to go rest and take a nap. They encouraged us to put our own self care first here regardless of what was planned. This was not a camp like you had to do everything, this was a space of allowing us to be exactly who we needed to be no matter where we were on our healing journey.
Some of us were 11 years out of their injury, others of us were only 1 year and everything in between. We would all eat together, and all sit on the side of the mountain to watch the sunset together. It created such loving bond that really helped me in such profound ways. I now had friends to talk to when I felt like I was struggling. People who would hold space of support and love and lift me up when I needed it. They helped raise my self confidence and empowered me in new ways I never knew I could be empowered.
We showed up everyday as our vulnerable broken selves, knowing that no matter what no one there cared what had happened to us. What they cared about was how we could help each other move along on our healing journeys to get back to thriving. No one made me fun of each other for not remembering things, or when one of us got over tired and acted out, the other would simply put a soft hand on their shoulder and suggest they go rest. The interesting thing is, when that happened no one got made that someone was suggesting it, in fact we appreciated it because we knew that person knew exactly what was really going on. I felt like I found my island of misfit toys but it was filled with love and support. When the week ended and we all had to say goodbye, we cried. I never expected total strangers to feel like family in just seven days. Once you were accepted to the retreat you were automatically allowed to come back next year, so we knew we would see each other again but it was so hard to leave that space.
That week changed my life but more importantly those people changed my healing journey. Without them I don’t know if I would have done as well. They were my phone call when I felt so alone, they were there when my marriage fell apart, and they were the ones always to remind me how loved I was. They were my family and they were the essential component I needed to allow me to heal in other ways. Asking for help was never easy for me but I had no choice and what I learned in this process was that asking for help is the greatest strength you can have in life.
To learn more about where you can find connection and community I recommend the following resources.
www.Loveyourbrain.com - This is the group I went to and am now an ambassador for. They have lots of resources on their websites as well as retreats you can attend for free and yoga programs for free. You do have to pay for your way there but the rest is all free for tbi survivors and their caregiver.
Brain Injury Alliances of America - Each state has one and they can be a fantastic resource to everything from support to doctors. Personal note: Not all of them treat you the same. I have had great experiences with some and some very poor experiences with some but they are still worth reaching out to. This link will get you started. (https://www.biausa.org/find-bia?gclid=CjwKCAiApOvwBRBUEiwAcZGdGHALDL-SKIOAKaFgD25JnxjSzyHY-_pq72gZatgZk1m-hOcZu__KRhoCGHkQAvD_BwE)
These are the two biggest resources but I encourage you to really check out your local area. Here in Phoenix we have a local dragon boat racing team that I joined made up of TBI survivors and veterans. The team is sponsored by a local one of a kind gym called Ability 360 that is for TBI survivors and people with disabilities. My greatest advice is to never stop searching. Something will always show up to help you get to where you need to be. #TBIsurvivor #TraumaticBrainInjury #healing #Resilience #lifecoach