Sometimes I wonder, if as a so-called advocate of Traumatic Brain Injury, I do it a terrible injustice by showcasing the triumphant moments of recovery, while hiding away the constant struggle I/we face every day. I do this mostly to protect my boyfriend, who is already prone to feeling like a burden, failure, loser and a broken man. I know any mention of struggle makes him feel inadequate, so I don’t want to expose it. Yet, the struggle, even if brushed aside, is very much real, and shining a light on it doesn’t make him the burden he fears he is, but rather illuminates even further how strong he is for continuing to fight.
I try to keep as strong a face possible for him, because he draws his strength from me. And I draw mine from God, and from the support I get, which is mostly online. It’s the feeling that I make a difference. It’s the messages I get from terrified wives who are just starting on this journey, and are looking for reassurance. It’s giving people hope. Ironically, doing all of that, bolsters my own hope as well.
I hear over and over again these words of praise. People tell me that they “don’t know how I do it.” I never know what to say in response. I do it because it has to be done. You’d do it to, if your loved one was hurt. We do impossibly hard things when love is on the line. It doesn’t make me a hero to love. It just means that I meant it when I said “I love you” to Patrick.
People tell me that I’m brave. They say I’m an inspiration. But honestly, I don’t know if I’m either of those things. I don’t know if I even want to be any of those things. What I want is to go back to a time and place, where I had the luxury of taking for granted my boring life. I don’t want to be superwoman. I just want to be Anj. I want to have enough clarity of thought to write a song again. I want to care about how I look when I go out the door. I want to remember Anj. I see photographs of myself from years ago and feel no connection to that girl, who she was, what she felt or wanted out of life.
What I have presented through our blog, has been mostly a streamline soaring of miraculous recovery, from the brink of death to a walking, talking, beautiful resurrection of life. And if you take out the word “streamline”, that is exactly what it has been. But what I don’t show is the beast that TBI is; chronic, unrelenting, unpredictable, wild, and ugly. It’s always there, getting in between us, trying to take down our love for each other, trying to give our story an unhappy ending.
Make no mistake, there has been ugliness. There’s been rage. On both our parts. We fight. And they’re not normal fights that a boyfriend and girlfriend would have; we fight because TBI instigates us to fight. It is egging us on, ringing the damn bell for another round, revving up the crowd and forcing us into the ring. In my worst moments, when exhaustion has embodied me like a demon possession, I’ve said things I can never take back. Patrick has had rage, violence and sadness that has been incredibly difficult to watch. Things are much, much better now, but make no mistake, we are still the walking wounded.
Patrick struggles with his TBI every day. His physical issues are obvious, but the others not so much. He has extreme anxiety, which some days cripples him. He worries about everything. I spend so much of my energy trying to reason with him that our kitten is safe, that we will be on time for an appointment, that I am where I say I am when I’m out of the house, that the person he talked to didn’t mean it the way he processed it, that he needn’t fear the next step of recovery, that it will be ok. Patrick, darling, I tell him, it will be ok. Sometimes, I have to say it 100x a day, if he’s having a really bad day. I draw another breath and say it again. My patience often fails me.
There are rules. Rules about Prana. Rules about the house. Rules that I’ve learned to live by, so that Patrick can be calm enough to get through his day. His brain is more rigid than it used to be. And I honor his injury with as much grace as I can muster. But sometimes the rules are suffocating. TBI doesn’t care if you can’t breathe. It does what it wants, when it wants. And all the doctors have to offer us for anxiety are drugs. We’ve had our fill of drugs, and are done with them as solutions. We do use alternative therapies for healing as best we can, though, and have had some real success with them.
Sometimes I feel full of hope and pride for all we’ve accomplished. We have really awesome days! Other times my throat hurts from talking. My ears hurt from listening. My brain hurts from a fatigue that I can’t even explain unless you live it. Sometimes I cry in the shower when no one can hear me.
If your loved ones loses a leg or an arm, or hell, even all four limbs, your life is going to change dramatically. Your hardships will be epic. But the person you love is only physically altered. Brain injury, or any neurological disorder for that matter, changes the person you love; mentally, emotionally, physically. Their personality. Their behavior. The way they sound. The way they feel things or don’t feel things. What interests them and doesn’t interest them. They lose themselves.
So imagine if you will, losing your lover in a car accident. They die. You live in a tar pit of black, suffocating sadness. You go through the stages of grief. But one day, the light returns. You move on. You close that chapter and you eventually heal.
Brain Injury doesn’t allow this. The person you love is alive, but as a new person. For some, the change is mild and barely noticeable. For others, the change is drastic. In the case of a severe TBI, changes are drastic indeed. At the onset of injury, you are thrust immediately into the overwhelming experience of caregiving, trying to learn all you can about brain injury; advocating, fighting insurance companies, all while your loved one lays in a coma or minimally conscious. And when they “awake” (and some do not) you are thrust into teaching them to live all over again. You’re trying to lead them back to themselves. There is no time for you to process any of it internally.
The person you loved never fully comes back. A new person is born. My Patrick 2.0 has a lot of traits that my Patrick 1.0 had, but he is not exactly the same. (Of course, neither am I). And while he recognizes that he is different, it is more the physical changes he sees more than anything. His memory has been effected, his self-awareness too. But I have the linear, unaffected memory of our 16 year history.
You’ve sort of lost someone, and so there is grief. But they are alive and yet horrifically suffering, and so there is more grief. There is someone new that you are learning, and there is struggle in that too. It takes years and years and years to get back to living, and it’s a different life then the one you knew. Sometimes, it takes that long before you can breathe enough to realize, that you’ve not had time to grieve at all. And then, it comes, delayed, and bursting out from within your heart, like a torrent of unstoppable loss.
Interwoven with all the grief, there are moments of immense joy. The kind of joy that only comes from watching someone you love come back to life: resurrect, albeit different, but back to living. Nobody can know a joy like that unless you live it. But it’s all so damn emotional. There is never a day where emotions are just running at a normal, even baseline.
I don’t share any of this because I want pity for us. It’s actually the last thing I want. The face of our love that we show is not a facade, it is real. It is fierce. It is passionate. It is full of hope. I am damn proud of it. And I am completely in love with my Patrick 2.0. He is a wonderful man. Our relationship is more true, more real, more authentic and deeper than what we ever had prior. Had he not had a TBI, I would never have known this side of him. TBI has been a great teacher, even when I’ve been a poor student.
No, I am only sharing this because TBI in a word; is fucking hard. It’s a zig-zag, two steps forward-eight steps back, unholy mess of a road to travel, which picks up 1.7 million new backpackers every year.
I just thought it was about time I said it.