Being a caregiver takes an almost super-human ability to balance out ones desire to provide and advocate for a vulnerable person, with ones need to preserve, nurture and care for their own well-being at the same time. Everyone knows that you “cannot pour from an empty cup”, yet when a person is relying on you for everything, it is extremely difficult to take time to “refill your own cup,” while leaving your loved one’s empty, especially when it comes to TBI.
When Patrick was acutely hurt, it felt like nails down a chalk-board hearing the words “make sure you take care of yourself,” from concerned people standing on the outer rim of our world, sort of peering in the window. Naturally, the advice was sensible, and I knew it was coming from a place of love, but it irritated me because it always seemed to suggest that the concept was otherwise alluding me. In reality, I was so tired that the most mundane tasks felt herculean to complete. I just didn’t know how to get relief.
Caregiving often felt like drowning: my body, brain, and soul were sending me messages of fatigue as loud as a fog horn; my limbs ached, my stomach hurt, my neck was stiff, my heart was always racing, my fuse super short, my memory foggy, my attention shitty, and my emotions all over the place. It felt like I was at war with a nervous breakdown, and was under a torrent of never-ending, rapid gun-fire, that made me want to wave the white flag of surrender and admit defeat. Taking care of myself just felt impossible, because I could barely take care of Patrick, and he couldn’t take care of himself. And this is where so many people misunderstand the TBI life: often the caregivers who seem to be dominating life, are barely keeping it together behind the scenes.
When Patrick was wheel-chair bound and unable to be left alone, my only breaks were when we had “aides”, who in our case could never be trusted to keep him safe, in our home. But it wasn’t like I could just leave the house and go see a movie, meet up with a girlfriend for a drink, go shopping or get a massage, and just leave our TBI life behind. I had no idea how to be normal. As soon as I walked out the door, a list of 100 items that needed to be checked off my list flooded my mind.
In those early days, there was always an urgency to everything; a panicked hurried-ness, yet a feeling like I was never getting anywhere. When I got time alone, I mostly spent it researching, making phone calls, and trying to advocate for Patrick. It just felt impossible to “take care of me,” let alone rest my heart and body, when I knew that Patrick wasn’t getting the care he needed. I knew that his recovery would impact not only his future but ours as well! It was only as time passed, and he got over huge mountains, that I began to feel relief. Each hurdle he climbed, and every finish line he crossed, paved the way for me to begin to acknowledge myself as a human-being again.
And by the way, that is not as easy a transition as you would think. In fact, it’s difficult as hell.
Coming to Miami, Florida for a month of Brucker Biofeedback was primarily about getting Patrick the therapy he needs to climb yet another mountain; strengthening his left leg, eradicating poor gait-patterns, learning proper form and posture, and ideally, leaving the walker in the dust. When we came 18 months ago, every single moment of the day and night was about Patrick. He needed me for just about everything. This trip however, things look quite different. And in the past few months, there’s been an awakening about just how much my spirit has endured, and how much I’ve driven my own body into the dirt. It was never a sustainable way to live, and I recognize now that with Patrick becoming more independent it is time for me to begin to find balance again. I must, MUST, take care of myself, if I am going to be the fierce advocate of Traumatic Brain Injury that I dream of becoming. There is no other way to go on.
So, I came to Florida with a plan in mind to make new and better choices in honoring myself. I bought Patrick and I both a FitBit, and we began tracking our food. I began setting sleeping goals, water goals, and calorie goals. In the past 12 days, I’ve greatly reduced our sugar and grain intake, and my chronic muscle pain has been subsiding. I’ve been swimming, and taking walks, despite the fact that a nagging voice tries to stop me from leaving Patrick alone out of irrational fear. I get up in the morning and look at my face, which appears aged 10 years to me, and I try to reconnect with the woman I see. She is strong. She is powerful. She has endured. She’s a survivor.
It is only today, at about 28 months post, that I am beginning to have enough clarity of thought and mind-space to feel myself and my emotions in my own body again. This “emotional thawing” is not uncommon for caregivers, and it is also possible for caregivers to experience a delayed onset of grief, sadness, mourning, etc. long after their loved ones are injured. (This did happen to me, but a while ago). But before any of that is possible, the person who has lived their lives in a frenzied blur, must take a step back and away, to sit in the quiet, and breathe. Because it is in only joined to our breath that we are able to feel our humanity again.
Connecting to breath is different for everyone. For me,it means practicing yoga. And that is perhaps the best thing that I’ve done for myself since we arrived in Miami.
I’ve begun practicing yoga at sunrise on the beach. Our alarm goes off at 6:00 a.m., and Patrick, God bless him, encourages us to get up. He makes us each a breakfast shake, we dress in the dark, and drive to the beach, where they offer a free class. As I step out onto the sand, the sun is just cresting on the horizon, which is a dazzling sight of cerulean and lavender, orange and pink. We begin our practice lying down, and the clouds are tipped with gold light all around them. The air is cold on my skin. The sand is soft. A few gulls pass effortlessly above me. I breath the air into my lungs. My heart beats strong in my chest. It feels like a gong; like a breaking damn holding two years of emotion back. I am scared to feel any of it. I am scared of what’s on the other side.
But then, we flow. And the sun rises over the water, and light pours onto my face, bathing my limbs in warmth. And surprisingly, what pours out of me is not pain, but gratitude.
I am feeling. I am thawing. I am here. And I matter.