I was standing in the trash room, holding an empty, black duffle bag. I had the trash chute open, and the door to the tiny room was closed, with only me in it. All I had to do was throw the bag into the chute, and walk out. It should’ve been easy. But for some reason, I stood there… completely paralyzed.
I’d been purging the house of things we didn’t need, when I came across a few boxes of memories, which prompted me to write this post. These were little tokens, slips of crumbled paper, cards, photos and even a print out of an EEG, which all took me back to the beginning of our TBI journey. But deeper in our closet, pushed way into the back of it, lay relics from our previous life that I didn’t expect to find. One of those items, was a large black duffel bag.
Brain injury creates a radically different life for those it impacts, which almost always results in a grieving process over what is lost. Additionally, because brain injury can radically alter the survivor, there is also often a grieving process over who is lost. It is nearly impossible for outsiders to understand the ambiguous loss of something that never died, and yet goes missing. Some of our loved ones look, talk, and walk the same way. But they may like or dislike new things, have new quirks, use different vocabulary, touch or kiss differently etc, have behavioral and/or cognitive changes, become more or less affectionate, and so on, which when taken as a composite presents a person that feels very “new.”
A person who was once the outgoing, life of the party might now be an introverted, anti-social type. A person who once averted eye contact, might now be incredibly social, if not overly so. As a result, what brought two people together romantically, may no longer exist. Or a relationship between father and son may now be challenged, because they no longer share the same interests.
This is why our community speaks about the “death” of an old way of living and the “birth” of another, and about our loved ones being “reborn,” “twice born” or “born again.” As the brain heals, a new person “emerges” slowly, and this happens over many years.
I remember the first time I learned about this. I was holding Patrick’s lifeless hand in that trauma ICU a few days after his accident. A male nurse named Paul, who was always “Mr. Straight Talk” with me, was trying not to give me false hope.“People must recover. He could wake up, right? I saw him move his arm yesterday. I know they said it’s not purposeful, but I swear he moves more when I’m near him. Don’t you think?” I asked.
I was looking for him to give me anything at all that I could hold onto.
“I think….” he said with a drawn out pause, “that the person you knew and loved is gone.”
I was stunned and had no idea what to say.
“And if he wakes up… and that’s a big IF…. he’ll be a new person, whom you’ll have to get to know all over again.”
My head was spinning. How could the person I love be gone, when he was right in front of me? How could the person I had known for 16 years be someone new, when aside from his injuries, he looked exactly the same? I could touch his freckled skin, and hold his hand warm in mine. He was RIGHT THERE. He was the same. It just didn’t make sense.
Well, it makes sense now.
Two years and 8 months later, I understand what Paul was trying to say. He was trying to open my eyes to the fact that brain injury changes a person, and nothing afterwards is ever the same. Patrick and I live with this reality. We have our good days and bad days. When the bad days come, we let our frustrations isolate us, and we tear into each other until their are tears or horrible words exchanged. On those days, we both grieve.
On the good days, however, which are more frequent than the bad, we celebrate our new life and our second chance at love. Paul was right when he said that Patrick would be a new man, but he forgot to mention that I would be a new woman too. We both died that night, and we were both reborn. I love my new Patrick with all my heart, and I’m very proud of the people and couple that we’ve become.
We’ve been enormously blessed with Patrick’s recovery, because although he is different, he is also very much the same. We still share the exact same sense of humor, which has been our saving grace. He is still charming, funny and smart as hell. He is still creative, curious and passionate about whatever currently interests him.
However, it is true that Brain Injury has made certain qualities of who he is more pronounced. For instance, his anxiety has shape-shifted and taken form in OCD. His love of animals is deeper and more profound. He is more rigid about things. He is more vocal about things that bother him. He still coyly averts his eyes when in conversation, but far less. He was once extremely introverted, but now is much more open. He used to hate to have his picture taken, but now not so much. He wrote in a journal ever since he was a kid, but doesn’t feel the need to do so anymore. And then there are the TBI related issues he struggles with, which change the way he interacts with the world. There are so many nuanced differences that can be hard to precisely pinpoint. Yet, he still feels like my Patrick to me.
….Which brings me back to the black duffle bag….When it comes to clothes, shoes, and belongings that Patrick had before his accident, it really does feel like they belonged to someone else, someone we both had to lose, in order for the new Patrick to be born. For years, I held onto his black skinny jeans, Starbucks aprons, and the converse he wore the night of his accident, which were stained with blood. Hand-written letters from him possess an intangible energy that just feels “different.”
So when I reached into the back of our closet, and pulled out a black duffle bag, my chest tightened. It was the bag that I’d bought him the night before he moved to Florida; the one he slung over his shoulder as he stood in line at the airport, and kissed me goodbye with tears in his eyes, before disappearing through the gate. It was the last time we were together, until reunited again in the hospital by TBI. It was the last time I ever saw “him.”
Standing there, it was as if feeling the material in my hands was a connection to another world; letting memories flood into my mind with a vibrancy they hadn’t had since they were made. It was a portal to another world. I felt like a clairvoyant.
But, we didn’t need a black duffle bag, nor half the things I had held onto. Like the skinny jeans and converse shoes, I knew I needed to let it go. So I walked down to the trash room, and opened the chute. But just as I should’ve thrown it out, I stood there, beginning to shake.
And just then….for one irrational, unreasonable moment, which so beautifully demonstrates all that I’ve tried to describe above…I thought to myself:
“His hands were on this every day. He touched this all the time. The oils of his hands are on this. His hands… his gorgeous hands.”
And then..I thought this:
“If I let this go, I let him go.”
It was a powerful moment. Suddenly, I shook my head like an etch-a-sketch, realizing that I was being crazy. After all, Patrick was right down the hall. He had the same hands. He touched me every day. He hadn’t died. And yet, there I was, struggling to throw out a duffle bag. Which I think illustrates the extremely unique paradigm in which caregivers and survivors live. The loss we feel has no clarity. It’s not sharp and hot. It’s a dull cold ache; a murky water, or a foggy street with a dimly lit lantern. And it’s as confusing to us emotionally, as that duffle bag was black.
I knew what I had to do.
So, I took a deep breath, opened the chute, shoved it in as fast as I could, and let the door snap shut. I exhaled as loud as I could, feeling my eyes wet but no tears on my face, and I instantly felt better.
The cold ache was still there, with its monotone sting. But it was less. And for the moment, I felt free.
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Thank you. All our love, Anj & Patrick)