I spent Monday through Thursday this week in Provo, Utah at a place called CognitiveFx. I felt the need to blog about my experience for two reasons: first, it was a really neat and helpful experience, and secondly, because this blog is the reason I found CognitiveFx (well, they found me via this blog) in the first place. CognitiveFx. It's rad. Check it out. www.cognitivefxusa.com/
My internal monologue during treatment went something like this:
Day 1. “Okay, this seems doable and like it might help a bit.”
Day 2. “Apart from the headaches and the fact that this is an exhausting treatment schedule, it at least won’t be detrimental to my brain health. Lots of good mental exercises.”
Day 3. “HOLY CRAP, WHAT ARE THEY DOING TO ME? THIS BETTER BE WORTH IT. EVERYTHING HURTS AND MY HEAD FEELS LIKES IT'S GOING TO EXPLODE. Maybe this means the treatment is working? Clearly something is going on with my brain because OUCH!!!”
Day 4. “WOAH. I never thought that pain would end and now I’m reacting and processing faster and more accurately on all the brain games and cognitive exercises. Could this wizardry have worked? I think they might have rebooted my brain.”
And 24 Hours after the end of my CognitiveFx treatment, I feel the difference big time...
I woke up without a groan. I’ve been composing poetry in my sleep. I did three face masks this morning because #selfcare. I forgot to finish my coffee because I was already alert and on to the next thing. I started doing crafts after breakfast. I made a to-do list. My hands are not shaky. I'm not dizzy for the first time in ages. I have 85 tabs open on my computer (summer job hunting is not a streamlined process for We the Humanities Majors) and I’m not even frazzled by it in the slightest. I am finding my words faster. The world looks brighter and clearer (literally, although probably metaphorically, too). I completed my to-do list.
Leaving CognitiveFx yesterday afternoon was like leaving camp. The staff and other patients had become sort of like family in the span of just four days. For the first time in two years I left a doctor without feeling like I’d had to prove to them that 1) yes, you could get a concussion in volleyball, and 2) that I was not okay. For the first time in two years I met with a psychologist who GOT IT, who looked at me and didn’t try to define me as a psychological basket case and prescribe hundreds of hours (and thousands of dollars) of psychotherapy, but instead offered her support, counsel, and advice to help me through the remainder of my battle with TBI-induced depression and anxiety (TBI=Traumatic Brain Injury). She did not undermine my PTSD, she did not tell me that all my problems were due to some genetic emotional instability, and she articulated that the root of my psychological issues was the neurological disturbance that resulted from blunt-force trauma to the brain, a truth that few psychologists understand. During dynamic vision exercises my brain went a little wild and when I giggled uncontrollably with tears streaming down my face I was not looked at like a crazy person or given the loathsome gentle shoulder pat. Instead, I was seen, I was heard, and when I told the cognitive therapist that my weird emotional reactions to benign stimuli used to scare me a lot but now I’m used to it, he smiled and we both decided just to laugh through the bizarre brain moment. I spent four days in a world of people like me, and by like me, I mean those who understand and have experienced traumatic brain injuries. We all came from different walks of life, got our concussions in a variety of ways, but had all somehow found CognitiveFx. There’s an incredible short-hand between people who have lost their worlds and have found the means and strength to journey on regardless. It’s beautiful to see determination and love be the products of seasons of adversity. Don't underestimate the healing power that empathy and camaraderie can have.
It’s essential to have a support system and recognise someone’s pain even if it manifests differently than what you had ever imagined possible. Our culture is improving in recognising and supporting those struggling with mental health. There are incredible cancer support groups, Alzheimer’s research fundraisers, etc, etc. But we are way behind in supporting people with traumatic brain injuries, regardless of degree of injury. Just because you can’t see it, doesn’t mean it’s not there. The brain controls the whole body and when even a little thing is off up there, the chain reaction of repercussions can and do wreak havoc on sufferers’ lives. The science is progressing quickly. The evidence is becoming more clear-cut. But, we have got to insert TBI into our vocabulary. We have to understand that the word concussion is a term with connotations that do concussion-victims a major disservice. There's no such thing as a 'minor’ concussion. Concussions are cumulative. EVERY. HIT. COUNTS. You cannot undue brain damage; it happens at a cellular level. And, no one ever even uses the word brain in sports when we get concussions (at least, that hasn’t been my experience). We’re asked about symptoms, our heads, our vision, balance, and are told we are concussed (sometimes they even fail to tell us that much), but no one calls it brain damage or brain injury. I think we’d all be a hell of a lot more careful if we got pulled off of a court or a field and were told, “Hey, you just got hit pretty hard. We’re going to pull you out now because you just damaged your brain.” Sub-concussive blows to the head cause injury, too. I’ve been hit hundreds of times. I’ve been diagnosed officially with three concussions. I can guarantee I've had two more and have had many other hits that may have come close.
At CognitiveFx, for the first time, I was treated by a doctor who understood all of this, offered a non-invasive and non-medicated treatment plan to help me and my brain get functionality back. It’s not a magic wand that makes it all go away. Once that damage is done, it’s there, but thanks to neuroplasticity and cutting-edge research and resources, there are now ways that make it possible for those of us who suffer from TBIs to find new brain pathways to perform the tasks we once did effortlessly.
“But, Hayley,” you might say, “You seem fine.” Well, today, for the first time in two years, I would probably respond, “You know what, today I am fine.” But that has not been the case. “Seeming fine” took every ounce of energy I had and a strong reliance on my childhood theatre training to pull off. And I'm still working towards feeling not just fine, but good. When you have an invisible injury, you don’t get pity. Often, you are accused--oddly enough--of doing something wrong or failing to excel or of being weak. Brain injury is an internal battle. It’s your brain gone haywire, it’s pain that can’t be seen, it’s frustration you can’t even articulate because your ability to articulate has been reduced. It’s being exhausted and drained, but not being able to sleep. It’s trying to exercise because everyone in the world loves telling you that exercise is good for the brain, but every time you do, you end up with a debilitating migraine or tension headache or are so tired you can’t move for the rest of the day and it’s not because you’re out of shape. I’m rambling now (mainly because my brain is working so much more sharply after four days in brain boot camp that I’m too excited and can’t stop writing), but the point is that we need to change the way we think about, talk about, and treat Traumatic Brain Injuries. And no, I’m not exaggerating or trying to scare you (although if I do, that might be good). This is science, and although I’m not a scientist, I am a Humanist, and since I am much better at writing than neurology, this is my take on what living with and recovering from a TBI has been like. CognitiveFx treatment has rebooted my brain and laid a foundation for an upward spiral (shout out to Brené Brown for that term) towards better cognition, reduced pain, and a fuller life.
Bottom line, this is my HUGE thank you to the team at CognitiveFx. Thank you to Anna at CFX for tracking me down and Porter for making me smile even when I was nauseous and having a moment and to Aimee for ‘getting me’ and to all the neuromuscular therapists who eradicated my neck pain, and to the cognitive and occupational therapists who forced my brain to re-wire itself even when both it and I didn’t want to do the work, and to the MRI technicians and Dr. Fong for presenting me with images and charts that helped me understand where my brain was at, where and how it could improve, and celebrating with me when it did. You guys rock!
Love thy noggin.
P.S.This blog has led three people to CognitiveFx treatment…you could be next.
**Disclaimer: This is not an ad, just the musings of an excited girl in the process of healing from a traumatic brain injury.