At least a few times a week, I get an email or message from a caregiver or survivor, who are all seeking the same answer to the same question:
How is it, that Patrick has recovered so well from his TBI?
It’s a fair question to ask. After all, Patrick had catastrophic damage to his brain. He had a DAI (diffuse-axonal injury), which leaves 90% of its victims vegetative. He had a depressed basilar skull fracture, meaning he cracked the entire melon, which is the worst type of skull fracture you can have. He had a subdural acute hematoma(bleed), that suffocated neurons of vital oxygen. He had multiple contusions (bruises) to the brain. He had a mid-line shift, a.k.a his brain was so swollen on the right, that it pushed the left side out of place. And as if all of this wasn’t horrible enough, he suffered a massive post-traumatic, subarachnoid hemorrhage (stroke) over the same damaged area of his right-brain.
Yea. It was bad.
So… by all means, Patrick should be dead. Or at best, he should be vegetative. He was only given a 5% chance of survival, and even less than that of being a functional human being. Yet yesterday he rode a horse, did yoga and had acupuncture.
How is that possible? How is he NOT in a vegetative state?
I never know exactly what to say, because I’m still honestly figuring it out.
What I do know is this: You have to do an insane amount of homework. Living with TBI is like being enrolled into a university, to study a major you never had any interest in. You are absolutely going to fail if you don’t do the homework, and if you don’t school yourself. The more you study, the more KNOWLEDGE you possess, the easier it is to navigate your TBI world and your new relationship. All of the wealth of information collected by science about TBI is out there, and available at the click of button.
Studying can come in many forms. You can read up on articles about cutting edge TBI treatments. There are numerous TBI support groups online, with thousands of members who live this every day. There are blogs like ours, health magazines, You-Tube channels, etc.
Remember that even neurosurgeons, neurologists, therapists and neuro-pyscholgoists, don’t LIVE, BREATHE, EAT AND SLEEP TBI. They work in TBI. YOU LIVE IN IT, AND WILL ALWAYS LIVE IN IT. For all the schooling these experts have had, you need to have more. Too often in the past, I caused myself an unnecessary amount of emotional pain from my interactions with Patrick, which were the result of my lack of wisdom regarding his TBI. If I had known more, I could’ve engaged him differently. I was however, studying my butt off, and can’t imagine how badly things would’ve gone for us if I knew nothing! So, it cannot be stressed enough: if you want to pass the TBI final, and graduate, you have to do the homework.
Easy right? Now all we (the caregivers) have to do is “go to school full time” to study TBI, while also managing our kids, jobs, financial stress, insurance issues, and be ever-sunny cheerleaders for our loved ones. And all the survivors (who don’t have help) have to do, is try to use a part of their body that is injured to understand a part of their body that is injured. READY EVERYONE??? And Go….! LOL.
Come on. Who are we kidding? This life is insanely hard. For some, doing the homework is just not possible. I get that. For us though, it was a key component to recovery, and I also know it was essential for us both to survive.
So, no. There are no secrets to recovery. There IS a recipe though, (to our recovery anyway), that I feel when followed, provides your best chance for the best outcome.
The main ingredients are as follows:
- Do your TBI homework. (see above)
- A survivor needs therapy, as soon as humanly possible after their accident.
- A survivor needs a team of amazing doctors.
- Therapy isn’t something you do 3x a week for a few hours – that is your tune up. Therapy begins at home, and the more of it the better.
- A survivor needs a truckload of love, patience, understanding, and support.
- A survivor needs an ADVOCATE; especially if their injury is severe.
- A survivor needs a reason to live. (I have found the best reason, to be love.)
- The more determined and resilient the survivor, the stronger chance they have of recovery.
- Recovery cannot be placed in the hands of any doctor or therapist; nor can it be limited to conventional therapies of PT, ST, and OT.
- A holistic approach to health (one that approaches mind/body/spirit balance and wellness) is in our opinion the best one.
These ingredients have been the staples to our TBI life. Some we’ve put into practice better than others, but all of them have played a vital role in Patrick’s recovery.
Lastly, and this is so important, it needs to be said that even with all of these ingredients in place, you still need a way to metaphorically bake your TBI cake. The heat which makes the batter rise is Grace. Grace is an outpouring of the divine, and it is not something that I earned or worked for in any way. It was purely a gift.
Please understand, that this entire post, with all of its valuable information, is not intended to suggest that we have ultimate control over recovery. I’ve seen far too many loved ones in vegetative states or minimally conscious, to make such a bold statement. Make no mistake: Patrick and I were extremely blessed, fortunate, lucky….whatever you want to call it. I felt grace around me, like a blanket, this entire two year, 8 month journey. It has rescued me every single day.
So my best answer to the question of recovery is this: It takes homework, teamwork and a whole lot of grace to come back from the brink of death. Oh, and humor! We mustn’t forget humor! If the 10 steps above are the ingredients, and grace is the oven, humor is the icing that keeps everything sweet.
Man, I’m hungry now! Happy baking! Peace out.
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Thank you. All our love, Anj & Patrick)