It’s been a long time since I’ve shared my thoughts. Let me tell you that it was not for a lack of trying. In fact, I tried almost every single day for the past 6 months. I would sit down at my computer, bursting with emotions and thoughts that I wanted to share, only to be received over and over by a blinking cursor on a blank page.
I’ve received so many messages these many months, that I did not know how to answer. I’m sorry if my silence ever let any of you down, especially if you were looking to me for support.
In the journey of TBI, I believe that Patrick and I have written quite a story. When I think back to that 3% chance that the doctors gave us that he would even survive, let alone live, I realize that there wasn’t much time to consider what we might write or how we would write it. The beginning narrative, was written for us. After that, it was up to us to write the rest.
It’s been 3 1/2 years since that day that his brain collided with a car, causing our worlds to collide with Traumatic Brain Injury. Yet, every single morning, we’ve gotten up, and continued writing the story of Patrick’s recovery. Of his healing. Of his rebirth. Of his awakening.
Somewhere along the way though, it became impossible for me to keep the focus entirely on Patrick. The rollercoaster of TBI horrors stripped me of everything I thought I was, and eventually I let go of every preconceived notion of identity. I was left standing in my pain, my grief, my abuse, my loss, and my isolation. And suddenly, the story wasn’t just about Patrick anymore. It couldn’t be. It was my story too. My recovery, my healing, my rebirth, and my awakening.
There’s never an easy way to tell a community as tight-knit as the one we’ve built together, that our romantic relationship did not survive this process. Perhaps I’ve stalled in announcing it, because even in the public acknowledgment of our break-up, there is another loss for me to experience. I know that so many of you have looked to us for hope, and have clung to our story, whenever you felt that you were drowning in the tar-pit of grief or despair. I so wanted us to be that forever for you. I know Patrick did as well. But if TBI has taught us all anything, it’s that we can’t always get what we want.
I’ve been pretty transparent about our journey with TBI. I’ve tried my best to show the good, the bad and the ugly to the world. I wanted to reach beyond our little apartment in Atlantic City, ripple outwards into a world that is completely blind to TBI, and ultimately illuminate this often invisible epidemic. I was NOT however, transparent about everything.
I drew a soft line in the sand regarding which of the chronic, daily TBI struggles I would share and not share.
And I drew a HARD line in the sand about our personal relationship, both past and present.
Now, however, barring a violation of his or my own privacy, there is something I want to share.
Over the years, I’ve gotten many comments and messages about the “light” in my eyes, despite the difficulty of our circumstances. Well, that light stemmed from my deep-seated belief, that TBI… ready for this?… was our savior. I know that’s difficult to process, but the reality is, that prior to TBI, Patrick and I had an extremely volatile, tumultuous relationship that was not sustainable, despite my undying love for him.
When he got injured, all of that was stripped away. The two of us, became pure spirit. No ego, no past, no control, none of our childhood bullshit colliding in a fiery explosion, and no games. Not even our own personal baggage could interfere with the love we felt for each other. That’s what tragedy gives you: the gift of pure spirit dwelling together. For the first two years of his recovery, all of our past struggles seemed to be eradicated. Patrick was a different person, one I grew to very much love, and though I grieved the man I knew, I did not grieve our unhealthy relationship that existed before he was hurt.
So you see, that light in my eyes, was my pure belief in the miracle of his accident. I never talked about it really, but I believed it in 100%, and I believed that if I put 1,000% into his recovery, we would have our fairy-tale ending. So I worked and slaved, sweat and cried. I did everything in my power to see him recover so we could have our second chance at love, and recover he did.
However…that growth took us both from pure spirit, back down to earth. Back down to our egos, to control, to games, to our childhood issues colliding, and back to fear. We were in our bodies again, no longer riding on the coattails of pure spirit.
The irony is, that I had made it my MISSION to show people that love could endure after TBI. I worked as hard as I could to get Patrick to recover, not realizing that the more I brought him back, the more of our original issues we would face all over again. And that’s exactly what happened. We were the most in love, the best we’d ever been, when he was very, very, hurt. Despite the intense physical labor of caring for him, and his inability to do much for himself, our relationship worked.
But in the past year, as he recovered to the point where he could live independently without almost any help from me at all, the sequela that lead up to his TBI, resurfaced. And as it did, my own issues in response to his, intensified. We began to dance to that old familiar music of our past. No matter how much I tried, we could not break the steps we had practiced for 16 years (for which our blog is named). And in the end, THAT was what what made it impossible for us to be in a romantic relationship, not TBI itself.
Patrick and I no longer live together, but I have never for one day stopped fighting for him, advocating for him, or taking care of him. The amazing thing about such a terrible pain we’ve both endured in our break-up, is that it has showed us that Patrick can live on his own with minimal support. I doubt we would’ve ever found out, if not for our split. I visit him a few times a week, shop for him, bring him vegan dishes, do some cleaning, take him to appointments, and help find him new activities for volunteering. He has a nice apartment in the same building we lived in for two years. I live 5 minutes up the street. We are doing our best to navigate the terms of our friendship. We are both utilizing a therapist. We still talk daily. And we will be forever intertwined in spirit.
I want everyone who has believed in us to know, that it IS POSSIBLE for love to endure in the face of TBI. Patrick and I did not break up because of his TBI. We broke up because of who we have always been as a couple, and the hard reality of our inability to escape that, prior to or post TBI.
I want people to know that if you work long and hard enough, and are given an enormous amount of grace, it is possible for you to come so far with recovery, that TBI can actually fall into the background, and your original romantic relationship, (with all its positives and negatives) can move to the forefront! How unbelievable is it, that we have come so far as to get to focus on the interworking, and clockwork dynamic of us as a duo? It still astounds me.
It probably goes without saying, but I adore Patrick with a love so huge, that it is hard to describe with words, even to him. But I have learned in all of this that I have to love myself, too. It sounds like a LifeTime movie cliche, but it was a lesson I sorely needed learning, and am still learning with every day that goes by. It was a lesson that was only made possible by my experience with TBI, and that is the secondary miracle of his recovery. The original story of two kids who met at 16, with two very different sets of personal issues, is still our narrative. I now recognize, (and I believe Patrick is beginning to also), that the only path to health is for us to finally work on ourselves…. as individuals.
I believe that a “soulmate” is the person who best serves to hold a mirror up to you, and show you who you are. Patrick has always been that for me. And I have always been that for him. Throwing myself so wildly, and with pure abandon into the rescue of an ex-boyfriend that I adored, has taught me how deep the love within me goes. (If I’m being honest, the depth of it actually unnerves me). It frightens me but also astounds me, that I had no reservation within me to do what I did. But it has also taught me how deep my struggle has always been to love myself, to accept myself, to practice self-care, or to even have proper self-respect.
So yes, I saved Patrick from a life in a nursing home. I saved him from living in a prison of his own undeveloped recovery and potential. But, truly Patrick has saved me too. The light that was in my eyes throughout so much of Patrick’s recovery has returned, because I once again believe that TBI has been our savior. It saved us both from ourselves. It saved us both from a life without self-awareness. It redeemed our relationship and formed a bond that will last forever.
My hope (if there is still an audience for it) is to continue this blog, albeit with a bit of a face-lift, as primarily my own journey towards health and towards helping other caregivers, with Patrick still guest blogging about his journey along the way. I’d like to still share pictures of his recovery if he will allow it. I want to continue writing with the same transparency about this part of our story, even as it goes off in two different directions. I want to continue making lemonade, from what on the outside may appear to many as only sour lemons. I want to begin speaking publicly about my journey, to write books about the knowledge I’ve acquired, and to write a memoir. I want to get back to my spoken-word poetry, and to writing music. I want to travel. I want to see Patrick thrive. I want to continue raising awareness. I want to provide hope. And I want you all along on the journey with me.
But above all else, I want to learn what it means to be in love… with myself. That is my new life’s work.
Thank you for being our comfort, our solace, our support, our cheerleaders, and our tribe. Thank you for coming along on this journey with us, and for keeping us grounded these past 1000+ days. We could not have endured without you. We love you. Always.
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