I am sitting in Starbucks. The people chattering around me look so strangely unaware. I wonder to myself: do they know how beautiful it is to be able to order a cup of coffee, and savor it? To be able to get up and down out of a chair? To be able to walk to the bathroom and use it without assistance? To be able to hold your attention while conversing with a friend? Looking around the room, all I can see is what I once took for granted. And it’s moments like these, when I feel truly aware, that make me wonder if TBI was indeed a curse or a blessing.
Here I sit, in Starbucks alone…. and Patrick is at the grocery store, food shopping.
He’s buying our food for the week.
He is pushing a grocery cart.
He has a list.
He has his bank card in his pocket to pay for the food.
He is alone, in a store, in society, figuring it out as he goes along. And I’m sitting here, drinking the best freaking cup of joe I have ever tasted in my life. Ever. This might as well be the elixir of the gods, because this coffee, and this moment, taste that good.
Awe and wonder abound in my heart today. Yet, I am also experiencing that all too familiar feeling that comes with having to let go of the desire to shield Patrick: Fear. Traumatic Brain Injury really is a chameleon; a shape-shifting world that is always changing on you. You are always hoping for the best, while fearing the worst. You put your head down, working as hard as you can, and often forgetting to stop and look at how far you’ve come. Until one morning, your boyfriend asks if he can do the food shopping, and your heart flutters with pride and gratitude, while PTSD floods your body with adrenaline and fear. Letting go: it’s one crazy mixed bag.
When your lover is reduced to an infant-like-state from a brain injury, your love for him inevitably shifts from romantic to maternal. Patrick was a robust, brilliant, animated, passionate, sexy-as-hell man that I had ferociously loved since childhood, and in an instant he became like a baby again; dependent on others for everything. He had to wear diapers, he had a feeding tube and a trache. Though painfully difficult, the moments in which I cared for him as a mother would a child, were some of the greatest moments of intimacy I have ever known. I felt a fiercely protective kind of love, pour from a place within me that I didn’t know existed. I just wanted to wrap myself around him, and shield him from any more pain or danger.
And shield him I did, as best as I could, with all that I had inside me. However, just as a baby does at the beginning of its life, he began to grow past the shields that I had put in place. At first it was things like chewing and swallowing food unattended. Then came standing from bed, and transferring to his wheelchair alone. Soon I could leave him in the shower to bathe himself. Then, he began to transfer in and out of the shower alone too. Every time he tried something new, my breath caught in my throat, as panic coursed through my veins like hot blood.
The day came when he could be left alone for an hour. Then two. Then an afternoon. I would watch him from the DropCam, text or call him to check in on him, and every time that he didn’t answer right away, my PTSD would rage inside me. I would picture him seizing on the floor, or imagine myself coming home to the smell of blood. Horrific images would flood my mind, as I’d try to vigorously shake the images, like an etch-a-sketch out of my head. But that never stopped me from pushing him further and further from the nest.
One day we made the decision to ditch the wheelchair in our home. For the first time, he moved around with the walker unguarded. I remember laying in bed listening, hoping to God he didn’t fall. And when the day came that he walked to the convenience store alone, I made him call me on speaker, and talk to me the entire way. Not every experiment with independence has been flawless, but every single one has propelled us forward.
Oddly enough, there was never a moment when doctors told us that it was time for any of these things to happen. I learned early on to not wait for them to give permission, because they would never know him better than I would, having spent so little time with him. So the question begs to be asked.. how do you know when its time for your survivor to move forward? I wish I had the answer. Sometimes, I just knew that Patrick was ready. Other times, I knew he was not ready, and had to be the brakes on the operation. Still other times, it was Patrick who let me know he was ready, and I had to get out of the way. It’s all a process. There is no manual to this TBI life.
There are undoubtedly some who will question my methods, because there is always risk involved every time I let Patrick explore. If only they knew, just how hard it is for me to let go. I have had the rare experience of loving my mate, with a complex love that only comes from being a caregiver. I once only loved Patrick, as a woman loves a man. Then, I loved him as a mother loves a child. I’ve taught him like a teacher would a student. And all along, glimmers of the man that I loved have peaked through, and become part of him again. It’s been 27 months of trying to find our way back to boyfriend and girlfriend, even though I’ve never known what that will look like or mean for me. You cannot imagine how difficult or how much wisdom it takes, to figure out at each stage of recovery, how much of a caregiver I need to be, and how much of a girlfriend. It’s a ratio that is always changing.
When I dropped Patrick at the store today, I felt like a mom taking her kid to their first day of school.
“Should we go over the list again?” I asked.
“No. I got this,” he replied.
“Not all the items are in the places you’d expect. Like goat cheese isn’t in dairy, it’s by the deli. Give me the list. I should make a note of that.”
He gave me the list with a sigh. “This is gonna be easy! Relax!”
“You know that I need the store brand instead of the name brands, right?”
“Yes. I can read you know!” he exclaimed.
Walking out of the store, I nearly turned back three times. I had to laugh. “Why is this so difficult?” I thought. At Starbucks, the images flooded my brain; all the what-ifs and possible horrific scenarios that could occur. I picked up my phone to text him, but put the phone back down. I’ve finally gotten wise to PTSD, acknowledging it rather than letting it control me.
Two and a half of the longest hours I’d known later, Patrick called me. His foot was bothering him, and he needed to rest. He’d gotten 15 items off the food list ( there were 27 items total ). I was so proud! I cant begin to explain the cognitive and physical work it takes to navigate a grocery store, follow a list, and find the food items. But for comparison, I found the remained 12 items in 20 minutes. It took Patrick 2 1/2 hours to find 15. This is what it’s like to recover from a brain injury!
Caregiving is extremely difficult. We have to be strong as a rock for our loved ones, and as flexible as a willow tree to the process of recovery. As much as we feel the intense instinct to protect, we must realize that if we are blessed to be in the minority of people, whose loved ones keep gaining independence, then we must accept the immensely difficult process of letting go.
Life, after all, is about exploration. With exploration comes risks, but with it also comes all the best things that life has to offer.
And so it goes: Patrick embraces life. I let go. Patrick grows. I let go. Patrick explores. I let go.
Over and over and over again, I find myself in this free fall without wings but somehow still supported. We continue the journey back to boyfriend and girlfriend, but always with the other aspects of love we’ve cultivated layered beneath. Truly, it’s a unique and special love that we share, which few will ever experience in their lifetime.