Janine Kirby

In a nutshell, in December of 2012 (12/12/12 to be exact) I had an accident at a job where I hit my head; was hit on the head; by a steel beam. It was my second major head injury in two years (my first being in 2010 after falling and hitting my head on concrete which left me with a TBI as well). I immediately knew I was in some trouble when I couldn’t move my right side and began vomiting. While pleading with co-workers to please help me and get me out from under this scaffolding I grew agitated as they just stared at me… I later learned I was not speaking at all – I thought I was, but I could not talk.

I was fortunate; I was flown immediately to the University of Pennsylvania hospital via helicopter and began my journey there and then. I had no major bleeds nor fractures, other than my speaking challenges and right side weakness, overall I was expected to be ok. My doctors would say had I not been so healthy and fit already, it may have been a lot worse. I started a lot of therapy which was pretty challenging, but I was determined and had an amazing team of caretakers and an incredible support system. Being on this journey is tough – you don’t know how long until you begin to recognize some part of your old self and no one can really tell you when this could happen. That’s the thing about TBI – you can’t “fight” your way through this type of injury. It actually makes you worse and only ends up frustrating you. I had to have a LOT of acceptance and patience with where I was at. I really had to trust my doctors and therapists – and hold onto hope. Your brain is not a muscle, you can’t work it over and over to make it stronger. You have to listen to it and re-train it to work WITH you. I started to feel better though, and began catching on.

Good things began happening – I was a candidate for surgery! I would be able to have the scar tissue removed with minimal effects on my overall recovery. So, before I knew it I was undergoing a craniotomy to remove the majority of my right temporal lobe which was damaged in order to stop my seizures and be able to continue on trying to get some of my independence back. It was a long procedure and even longer recovery. Apparently, your temporal lobe is pretty important (go figure). I felt like I was back at square one – I felt defeated and hopeless – but I didn’t give up. I’m not going to pretend every day was sunshine and puppy dogs, but I knew others had overcome worse. I decided to fight… which eventually led me to that fateful day.

What if they won’t work with me? What if they don’t have time? What if I’m too much work? What if I can’t afford it? What if they lay that all too familiar “but you look fine to me” line?

What if I fail…?

Will this have been worth it – trying something new (at least to my damaged brain it would be new again) and failing? I don’t know if I would recover from another reminder of what I can no longer do. And what if I actually damage myself?? I got the ok to work out again, but I also know how stubborn I am and will push and push until I actually harm myself. Will I ever trust someone enough to let them help me help myself?

Regardless of my inhibitions, my recreational therapist said we will cross these bridges when we get to it – that my personality, honesty and the coping mechanisms I’ve learned over the years will help me find the right person to walk this path with me (if they exist). And boy – did it ever!!! I had met one other trainer in person, and had emailed with a few others.But meeting Howard was a fateful moment too powerful to ignore.

His smile grew!!! Much to my surprise, he was intrigued – he started telling me about his medical background and thanhis age. Being that I am a true science geek at heart, I loved that we could talk medicine to each other. And of course, as anyone who meets Howard is, I was blown away by his age. He must have overcome a lot to get to where he is – my kind of person!!! It’s an unspoken sort of respect – two beings who know they earned their place in this world. Each scar proof that we showed up for life, and fought! And it wasn’t long until Howard earned my trust as well.

I was told that when my accident initially happened my recovery was quicker than most due to how fit and healthy I was – how fortunate I was to have a “leg up” so to speak. Most days I don’t feel fortunate, but I know I have come a long way from where I was in 2012. I have also shared that at times I feel as though I’ve “plateaued”. I’ve gone as far as my damaged brain can take me. I mean, your brain doesn’t grow back. I’ll never be the same person I was, nor be able to perform the same tasks – I’ve had to practice a lot of acceptance.

it’s a hard line to walk. Do I push myself on the possibility that something new will connect in my brain? Or do I spare myself the nausea, vomiting, headaches, insomnia, and heartbreak when it doesn’t work, or when I push myself too hard? TBI is not just a battle with your physical self, it’s with your will and heart as well. Imagine my surprise and comfort that Howard somehow seemed to get all this – he understood. He asked me questions that were so amazingly deep and to the core of my injury that I enjoyed talking to him as much as lifting with him. He was so curious and eager to learn – and I have been eager to teach anyone who will listen about this silent epidemic. I cannot express how important it is to have the validation that you are indeed struggling and yet fighting… Howard was so amazing at winning my trust and friendship that he did it without me knowing it! I could explain to him what I was feeling and wasn’t ashamed or embarrassed – only curious at what he thought about it!! He’s so very smart and so observant. It’s so nice to have someone (other than my fellow survivors) who truly listens to you and wants to help you figure it out and try something new. Help you learn a “new normal”.

I attended my first Mind Your Brain conference in 2013 – a year after my accident. My doctors at Penn told me about it and even suggested I share some of my experience on the thesurvivors panel that is part of the day. Mind Your Brain is an amazing free program and opportunity to immerse myself with fellow survivors, researchers, caretakers, and therapists! I was honored, and yet so very frightened. And fear is not something I’m used to- at least not without having my fists up to help fight it. Needless to say I made it through (without vomiting, mind you!) and found myself so inspired by the sheer number of survivors and their stories. I had met not just another “black sheep” – but I had found an entire herd of them!!! I was inspired that I was not alone on this journey and that there is hope just waiting to be held onto through the stories, doctors, and caretakers I had met that day. For the first time in a long time – I was comforted. So much so that I couldn’t wait to go the following year! I kept in touch with friends I had met there, and with Candace Gantt, who is the founder and matriarch of this amazing program.

The real change I finally saw in myself came after working with Howard two years post-op and gaining confidence, I requested to be a presenter at the 2017 MYB conference!!! To make a presentation (along with my fellow survivor and friend, Matt VanKirk whom I had met four years earlier) and have a display table where I would stand and talk ALL DAY LONG to fellow attendees!!! A year before I would never even begin to think this possible, let alone have the courage to try. I would question my ability to stand for any length of time (without wobbling and tipping over), let alone to talk to numerous people while trying to maintain balance and poise. Multi-tasking is something “normal” people take for granted. I can’t even walk and turn my head without tipping over – let alone be in an enormous area of over-stimulation while trying to sound knowledgeable. But – here I was, giving it a go. I couldn’t articulate to Howard then how integral he was in my ability to even attempt this, let alone go ahead and succeed at it! I could only invite him, and hope he would want to stop by. Howard did more than stop by – he entrenched himself in it!! He was so enthusiastic about learning and expanding his understanding of TBI – I was so flattered and proud to have him there! And I couldn’t wait to introduce him to everyone – to tell all of my friends and my treatment team that THIS was the man that helped me feel and look so much better! All day, everyone was telling me how improved I was from the year before – it is no coincidence that working with Howard was the biggest addition to my therapeutic regiment. He not only made me stronger in body – but in mind as well. Howard is now another part of my team – he will be for years to come I suspect. This is a long journey – perseverance over power. And Howard indeed embodies this tenet. Mind Your Brain – you only get one.