Miami is truly an amazing city; beautiful bridges, tall buildings reflecting the sun; cars buzzing past you, restaurants with amazing food, and languages filling the air like music. It is truly a modern marvel to behold, but at one point, Miami was not what it is today. It was a sparsely populated land with dirt roads and beaches, and very little industry. Modern cities like Miami, are the result of the unbreakable human spirit.
As I sit here in the waiting area of the Brucker Biofeedback Center, listening to Patrick’s coach training him in the next room, her voice sounds like that of a builder.
“Come on Patrick, higher… HIGHER… HIGHHEERR! LET’S GO!!! YOU CAN DO IT!! Up, UP, UPP!!! WOOOO!!!! she exclaims. “Good job! You did it, Patrick!”
It is the sound of construction and an enormous effort. In this way, TBI recovery is not unlike the building of a city. Yet at the onset of injury, no doctor can properly convey to you that recovery is without a doubt, a re-building. It is not enough to passively heal (although rest is very important); we must rebuild the brain and body from the ground up. If a broken arm or leg is akin to a clumsy kid knocking a baseball through a bedroom window, a severe TBI is an absolute demolition. It is a devastating wrecking ball to the life of those who sustain it.
In the instant it strikes the human body with its long and powerful black arm, it destroys everything. Doors are crushed, windows are shattered, and rooms which held one’s memory and identity are leveled to rubble. All that is left behind is the foundation with which the house once stood. It is there, that survivors of Traumatic Brain Injury and their loved ones are forced to rebuild, knowing that the house they will raise will never be the same as the one they lost.
This has been our journey for the past two years, as we’ve slowly and surely rebuilt Patrick from the ground up. I could have never imagined how tedious it would be, and I’m almost grateful for that, because I am not sure I would have found the strength to persevere if I hadn’t been a little naive in the beginning. The reality is that when people look at Patrick today, they see his progress, which of course is astounding. But when I look at him, I see the construction; the countless hours of both inpatient and outpatient therapy, the trial and error alternative therapies, and the thousands of hours of practice at home that it took to get here. I see the architecture of who he has become.
I can so vividly remember when Patrick was first hurt. I was standing in the rubble of his life by his hospital bed, totally unaware of what lay ahead. He first relearned how to reconnect with the world as he emerged from the coma. Then, he learned how to breathe, to swallow on his own, and how to hold his head and torso up. A few months later, he learned how to speak. In those early days, I was a fireball of despair, shock, fear and desperation, but I somehow managed to channel all of it into an enormous strength. That awakened energy began my journey into becoming a psuedo-therapist to my boyfriend. We got the walls up in Patrick’s new “house” in about 6 months, and it was only then that I began to realize how long the journey would be to completion.
The changes were slow. Patrick’s left arm dangled from his body like a wet, heavy blanket. I can remember watching his brain send signals to his hand with an agonizing delay, and then it would move ever so slightly. I remember him learning to open and close it; to extend his wrist and fingers, how to lift his arm, rotate his shoulder, control his gross motor function, and then his fingers.
The same can be said for his cognitive healing, which was a rebuilding as well. Imagine at 31 years old, trying to relearn basic math, proper judgment, social skills, or how to reason properly. Imagine the emotional toll it would take going through that, or watching your lover go through it. Imagine trying to teach him/her like you would a child, while executing it without insulting the dignity that comes with being an adult who has already lived several decades.
It felt a lot like being at war; war with ourselves, our fear, and even with each other. We took turns keeping the faith. Slowly but surely, we raised the walls, installed the windows, put in the insulation. We even laid down the roof of the new Patrick. But the miracle of it all was a very, very slow process.
Now at 28 months, I like to think of our working on recovery details, as something akin to installing carpet and putting in lighting fixtures: maybe it’s not necessary for survival but it sure as hell makes the difference between feeling like you are in a “house” or at “home” in your own body. After all, this is the body/brain that Patrick has to live in for the rest of his life. I want him to be comfortable there!
In conventional therapy, the goals of a patient like Patrick are very different from that of Brucker Biofeedback, which we are currently attending. A TBI patient two years post, who walks independently with a walker is often considered “healed sufficiently” and is no longer eligible for therapy. It doesnt matter to insurance companies that Patrick, who ran 15 miles a day before his accident, could not walk without a walker. It didn’t matter to them that when he did walk, he “hip-hiked” his left leg, hiked his right shoulder, and threw his left arm into a “high guard” to protect himself, which caused a very abnormal gait-pattern. It didn’t matter to them that he would never be able to run, or that he would suffer from abnormalities in his bones and joints from improper walking. Nope. He was “functional” and “independent” and that was good enough for them.
All we have to say to that is: It sure ain’t good enough for us.
For the past 2 1/2 weeks Patrick has been receiving two hours of Brucker Biofeedback therapy a day. Thank God the therapists at Brucker don’t believe in “good enough”: they strive for absolute perfection. That kind of mindset is contagious and exactly what people like Patrick and I need. From the first day, the goal for Patrick was to walk CORRECTLY and INDEPENDENTLY without assistance. They push Patrick very hard, and it blasts open the doors of what we were told was impossible.
As I’ve watched them break down his walking into micro-movements in order to correct them, I have once again been blown away by the marvel of the human body; the intricacy, subtly and complex system of movements that must work in harmony, in order for something as simple as taking a step to be possible. These amazing therapists are the “lighting and carpet” kind of folks that every TBI caregiver is looking for, and I absolutely love them for it.
As for me, my life as usual is just as changed as Patrick’s by this new therapy. Now, when I take my afternoon walk in the sun each day, I feel my body moving or watch my feet stepping with an indescribable appreciation. After watching Patrick struggle so much, I can’t imagine ever taking for granted that I walk without the slightest amount of effort.
TBI survivors may feel like a leveled city after TBI, but in truth they are beautiful works of art; crafted by sweat and tears and an incredible effort that few can see. So, if you are a caregiver or a survivor dealing with the medical status-quo… if you’re being told that you’ve “healed enough”, and left to live in a body that you are no longer at home in, I encourage you to find a way to continue the work of rebuilding. Don’t let anyone define what “healing is”, nor tell you that the construction is finished on the TBI brain and body, that you now call home.