Yesterday, I had just about all the personality of a pissed off porcupine. Today, I feel raw and exposed and grateful. It would seem that I’m a caregiver pendulum; oscillating back and forth between two very different extremes.
I think it’s in our human nature to be unsatisfied. We constantly want more. We are perpetually hungry for something, never satiated by what is in front of us. We confuse satisfaction and wanting what we have, for complacency and not striving for more. It’s an easy balance to lose, and a complicated mystery to understand. Dreams are after all, however lofty, what keep us moving forward. They are the fuel that drives us to work for what we ultimately want and do not yet have. However, if we don’t want what we already have, we become porcupines that perpetually engage the world with spiky, angry, bitter, and resentful energy.
Let me clear one thing up. There is no way that I WANT to have ringworm (see my original post). However, if I were the highly evolved being I strive to be, I think I would find a way to find the good in it, to even be grateful for it, because in it lies like all unpleasant experiences, a lesson and even, an opportunity? I don’t know. I may be reaching here, but I think I’m on to something.
TBI for instance, one of the most unpleasant experiences a couple can encounter, is a dance between dreams and reality. We are grounded in the reality of what is in front of us all along the recovery road. At one point for me, that was that the love of my life shattered, broken, unconscious and on life-support. It was a crushing grief, a suffocating drowning in tar-thick blackness. It was my reality. Yet, when I would go to sleep at night, I would escape to my dreams where Patrick, whole, vibrant and wild would meet me. Eventually, the world of reality would rouse me with its icy arm and I’d awake, my face red and aching with tears. Back to his hospital room I would go, carrying the dreams of seeing that person I danced with in my sleep again.
I wanted him to wake up.
I wanted him to be whole again.
I wanted it to be undone – ALL OF IT.
I wanted more than this tragedy for us.
My entire self was hungry for his recovery.
Yet at the same time, I realized almost right away, that I could not deny what was in front of me. He was massively, severely hurt and might not survive. And if he did, it was going to be an arduous crawl. I realized that if I was going to survive it, I had to find a way to want it. By wanting… I mean…
Did I want to fight for him?
Did I want to invest years of myself into something, forsaking everything else?
Did I want to become an advocate?
Did I want to do the research?
Did I want to embrace the suffering, hardship, struggle, and be open to wisdom, knowledge, and the blessings that were inevitably seeded within it?
Wanting means embracing, accepting and going with the flow, however ugly, raging and violent the waters may be. I knew I loved him, and that love, which wanted him to live more than just about anything, became a resounding yes to all of the questions above.
And this is where the dance began, because in the TBI world, what you have and what you still want is always changing, morphing, and evolving. Anyone who lives this life knows that recovery is for a lifetime, and healing is measured not in days, weeks or even months, but in years. It’s a series of cocooning and then breaking out into changed butterfly. (See post about that). Some cocoons (plateaus) take weeks, months or years. Every time my Patrick emerges from another cocoon, I am enormously grateful for his evolution and healing. But soon enough, my humanness becomes hungry for the next.
So how do we want what we have, while simultaneously working towards a future dream? Well, I’m still learning, but I think it requires a certain zen and a paradox that doesn’t come natural to us. We have to strive to be constantly grateful, accepting our reality as already enough. At the same time, we MUST work as hard as we can to achieve the dreams we still desire, grateful for the struggle and surprises, and every metamorphosis, however small, that comes our way.
Now, make no mistake, I’m not trying to be some Polyana here. I know this shit is hard. It’s INSANELY hard. And not everyone is as fortunate as we have been. I know that many of you are living with tremendous emotional pain, and without resources. Finding gratitude when your loved one remains permanently vegetative or severely disabled is extremely challenging at best, if at all possible.
But this morning, watching Patrick sleep, his breath so perfectly moving in and out on its own, I was taken back to those first few breaths he took independently. And my heart was so overwhelmed, that there left very little room for dissatisfaction. I realized, that anyone who survives this process and manages to hold onto happiness, is already wanting what they have. It’s impossible to have one, without the other.
I realized that every time Patrick changed; learning to follow commands, talk again, hold his head up, breathe on his own, eat on his own, take a few steps, move his left arm, wiggle his fingers, transfer to his wheelchair, transfer to the shower, cook an egg, read a book, feed the cat, take his meds on his own, make a phone call, buy me a birthday present, move to a rolling walker, play the drums, regain vocabulary, tell old jokes, walk unassisted, and SO MANY OTHERS, I have subconsciously asked myself, who had no way of predicting the future…
“If this was it, would it be enough?”
And every time I’ve heard my heart quietly answer a resounding “Yes.”
We kept working, because we wanted more. But we’ve tried, as best we can, to be happy all along for what already exists.
It’s an important lesson for me to remember and assimilate, especially now when recovery is measured in much smaller gains than it used to be. It is very easy for me to get caught up in battles that I want to conquer ( like Ataxia, balance or gait), and lose sight of the entire picture. It is so easy to miss out on the beautiful forest we’ve cultivated, when I’m constantly, focused intently on one leaf.
So maybe I can find the good in Ringworm. Or heck, at least try to! I may not want it, but it is my reality. So I need to accept it. And now, it”s time to clean my apartment from top to bottom, because while I accept it, I ALSO DREAM OF KILLING it by whatever means possible!
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Thank you. All our love, Anj & Patrick)