I was in a coma for three years. Knocked out. Unconscious. In a dream-nightmare-sequence existence.
Oddly, I didn’t even recognize it, until the day that I finally woke up. I can’t help but wonder if my coma was really that different from the one that Patrick suffered three years ago, due to TBI. Was he aware that his body had shut down all non-essential operating systems, to conserve energy, so he could heal? Did he know that he was unconscious, and that life was happening all around him, while he remained cocooned inside himself? I still don’t know, because Patrick doesn’t remember. What I do know, is that my knowledge of my own coma was limited, until I finally awoke to find myself alive, changed and consequently… completely lost.
My caregiver coma lasted almost a thousand days. I’m awake now, and I’m here to tell you: my life is like being in a Salvador Dali painting. Absolutely nothing makes sense.
I think I had been in crisis mode for so long, that it had become my normal default mode of existence. I was so used to walking around with my shoulders up around my ears, my heart in my throat, and my lungs tight and closed off, that I couldn’t remember how it felt to be any other way. The reality was, that when Patrick got hurt, and I found him laying in a coma, I went into a coma of my own. My consciousness, overwhelmed with the shock of such horror, my eyes unable to really process the image of him shattered and broken in a hospital bed, and my heart literally bursting at the seams with emotion.. just went haywire. I shut down. I shut off. And then with the off-button engaged, I become this magnificent, fierce, beautiful, robot.
It’s not that I didn’t feel my emotions all this time, it was only that I didn’t process anything. It was the only way to survive. Do you understand? It was the only way to wake up every day and not drown before I took my first breath. It was the only way to accomplish the enormous task of Patrick’s recovery. I had to shut down. I had to go to sleep. I had to deny my own existence. I had to become numb to desires and hungers and wants. I shut down all nonessential operating systems, and went into auto-pilot mode.
I filled my days with research and phone calls, appointments and therapies. I created a tunnel vision so precise, narrow and focused that I couldn’t see anything else except TBI recovery. There was a rhythm to it after a while, but it was a dance that never made sense. We were in a world, that existed on the fringe of a universe that everyone else seemed to live in, while blissfully unaware that our separate world existed.
It was chaotic. It was isolating. Everyone I loved fell away, except for a few kindreds. Nonsensical conversations ran ramped over us, as we practiced almost sacred routines of OCD, paranoia and instability. There was such daily upheaval; outbursts I could never predict. Life seemed to oscillate between moving very slowly, with a murky film covering its lens, and then almost in a time-lapse of events, which were too fast for me to handle. I became obliterated by exhaustion; a fatigue so all encompassing that I no longer even felt alive.
But because of that focus, and such a tremendous effort on both our parts, magic transpired. And the love, concentrated and pure, made TBI tremble in its boots. A man went from being vegetative to minimally conscious to awake, from diapers and urinals to walking into a store and using the bathroom alone, from wheelchairs and walkers to canes to freedom, from paralyzation to playing drums, from non-verbal communication to talking, from a mental vapidity to one of clarity, from a disconnected mind/body to a reconnected one. Yes it was magic; magic that existed like roses in winter. Beauty gracing horror.
And then one day, out of the blue, somewhere between the hot sweat of this Summer and the first day of Fall, all at once, I just woke up. I came out of my coma. And it was uncomfortable as hell. I peeked out of my gopher hole, looked around and didn’t know what to make of what I saw. The world had changed, people had moved forward and on, and everything had advanced, except for me.
I looked in the mirror and didn’t know what I saw. Was that me? Who was this haggard, tired, bleary-eyed woman with bags under her eyes, and a gaze as deep and dry as a desert? What was her story? Who had she been? Where had the years gone? She didn’t feel like she owned them. How does she pick up where she left off three years ago, and reclaim her life, when she cant remember that girl? When she cant connect to her, touch her, feel what she felt, or love what she once loved?
Indeed, it was as if a bridge that connected my pre-TBI self to my current self had been burned. I was a stranger, who like Patrick, had lost my identity.
And that is where I am at today. Standing at the edge of a canyon, looking back at my old life, with no way to cross it and go back, and unsure how to go forward.
I stopped blogging because I didn’t know how to share this part of my journey. Patrick has achieved so much, and gotten so far. As his independence increases, so does mine. Ironically, it was this new chapter of our story, that allowed me to awaken from my deep sleep. I was totally unprepared for the onset of delayed grief, that has literally almost drowned me with its massive tidal waves. Somehow, I am just now, at three years, beginning to let out a breath that I’ve held in, ever since I got the call that Patrick had been hit by a car. And it is in that expression of relief, that the grief is finally taking over.
Yes. I am grieving. I am in the beginning of coming to terms with what happened three years ago, and all that has happened since.
Yes.. I am seeking help. I am in good hands, thank God.
Yes... I will find my way.
I just wanted other caregivers to know and understand, that it’s ok to be asleep, and it’s ok to wake up, whenever and however you do. It is easy for me to feel as if my story, autonomy, and my life itself has been on hold, because to a large extent.. that is true. And yet if I hadn’t done what I did, Patrick would not have recovered to the point he has today. It required that type of sharp focus, solidarity and herculean effort, in order to accomplish what we did.
But now, I’m awake. And it hurts to be awake. I have been accosted and taken hostage by my own emotions, and they won’t let go. Not this time, they tell me. Not now. You must be with us. Stay.
Now it’s my turn to feel. It’s my turn to heal. It’s my turn to meet myself again. It’s my turn to rebuild.
It’s my turn… to recover.
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Thank you. All our love, Anj & Patrick)