This morning I woke up in my apartment alone, to a silence so loud and colorful that I could almost see it. I opened my eyes and forgot where I was; a casualty of spending 10 weary days sleeping in a hospital, hotel and at my sisters apartment. I turned my head and was greeted by a pale blue sky, with gulls floating effortlessly through it. Immediately, and for the first time since we left for the hospital, I could feel my body, now drained of adrenaline, sending me streams of data. My hip, injured in 2007 was screaming at me. The herniated discs in my back and neck were throbbing. My stomach was upset. My head was pounding as if I had drank a fifth of vodka. My thoughts were slow. My feet hurt, and I realized I had blisters that I hadn’t even felt, from wearing the same shoes. My skin felt puffy. All of this was my body’s way of saying..“Anj, enough. That is quite enough.”
Today is my first day in 270 days that I have had off from my role as caregiver. And when I say off, I mean that I have not had a break for more than 3 hours in 9 months since we moved in together. Anyone who has ever cared for someone full-time, knows in a unique way what it requires of your own health to do this job well. Only when silence becomes your greatest gift, and a space in your head begins to open again, where it had been incessantly cluttered, can you truly understand. When that release comes, it’s size is within direct proportion to how intense the stress was all along. And this morning, the release feels…. quite frankly, epic.
I have never known how honest to be in my writing regarding our life. Patrick, like so many TBI survivors, already feels like a terrible burden, and struggles with feelings of self-worth. He questions why I stay with him and expresses all these doubts to me regulalry. I empower him to know that he is my everything, and that as my boyfriend (as opposed to my son, brother or even husband), he can take solace in the fact that I choose this every day of my own free will. But it does not stop his constant turmoil. And so, I have kept to myself the realities of caregiving, out of fear for how he would receive my words. But after writing so candidly about our grueling experience these past 10 days, and seeing the way in which it has effected so many people, I have realized that our journey is bigger than just the two of us. We have a chance to speak for millions of voiceless people in the world, and by doing so we can turn our experience with TBI into a vehicle to do more good. I want to create transparency and visibility for the TBI world. I want to start now.
I love my boyfriend. I love my life with him. It is an incredibly difficult life that requires of us incredible physical, emotional, mental and spiritual demands. Some survivors have whole families caring for them. Some have two parents. Some have just one person. In our case, Patrick and I fly solo.
Some survivors have caregivers who devote their lives to them; understanding their roles as fierce protectors, defenders and advocates. Some have caregivers who keep food on the table, a roof over their heads and shower them every other day, and to them that is enough. Some have no one at all.
When a caregiver wants to be exceptional, and also does it alone, that is where burnout becomes very real very quickly.
Our medical system is an abomination. There is far too little therapy provided for those recovering from TBI; the worst injury imaginable. The cut-off for therapy is far too soon, and many can’t get any at all due to arbitrary yardsticks to measure “response” and “awareness.” We learn very quickly words like “plateau,” “gains,” “threshold for growth” and “regression” and we learn to hate them all. We are stamped with dates like cartons of milk; “best if healed by ____,” as if our brains mold over and are useless past the 2 year mark. We are misinformed about Neuroplasticity. We are left to do the homework ourselves. And we learn what we always knew to be true: that we are human beings; living, breathing, healing, changing, adaptable lifeforms. So why are we treated like algorithms; reduced to filing systems, and categorical placement by men and women at insurance companies, who sit behind a desk, deciding our fate without knowing anything about the reality of our injuries or our capabilities?
Caregivers are thrown head first into TBI, and support dwindles within the first 6 months. In a state of tremendous shock, experiencing our own immense trauma in what has happened, we are forced to postpone what becomes an ambiguous, unending grief and step up to the plate. We naively think our loved ones will be cared for through the system, until the first time we walk into a hospital and find them laying in their own feces, suffering from bed sores, or having contracted an infection. Those like Patrick, (who once was vegetative/minimally conscious) are the most defenseless. Many of us move into the hospital to watch over things. (It should be noted that there are exceptional doctors and nurses out there -but they are the exception, not the rule). Then, when our loved ones come home, we are handed worthless, untrained aides that often abuse our loved ones, keeping us from ever feeling at ease away from them. Some of us, like myself, will send these people away for the betterment of all.
We spend hours on the phone with insurance companies every week, trying to navigate a system less elegant than “Here Comes Honey Boo Boo.” We sit up at night like medical students learning everything about brain injury. We lose track of the days. We forget what month it is, or what season we are in. We engage and converse with support groups; exchanging ideas, and continuing to learn. We push ferociously for ongoing treatment. We go to therapy sessions, where we are given exercises and stretches to do 3x a day. It is up to us, after the exhaustion of the day has left us spent, to find the energy to motivate and inspire our survivors and also complete these tasks. Meanwhile we are transferring them to the shower, in and out of bed, preparing meals, prepping medications, researching the side effects of those meds, fighting doctors who won’t return phone calls, dealing with seizures, blood clots, vision problems, sensory issues and so on. Many caregivers have children, or aged parents they are caring for besides their injured loved ones. It is immensely difficult.
Our survivors have difficulties with attention, memory, reasoning, processing, sequencing, social skills, sexual appropriateness, organizing, decision-making, judgement and self-awareness. Some are tremendously violent, and others like Patrick, have occasional outbursts of rage. (That last sentence would be enough to wear a caregiver out, without the added stresses mentioned above). In the case of a severe TBI, our loved ones are reduced to infancy after their injuries. They have to relearn every single task a newborn baby would, and move through the stages of growth all over again, all while being aware somewhere inside that they are already adults. The battle towards cognitive self-awareness, self-acceptance of their injury and a gradual move towards independence is the goal. But that means the caregiver, and in my case, the girlfriend, has to become a mother, a lover, a fighter, a therapist, a nurse, a bread-winner, a teacher, a warden, and an advocate.
I want Patrick, and so many other survivors out there to understand, that when fatigued, caregivers don’t seek a break FROM THEM but rather, FOR THEMSELVES. Any decent caregiver will battle guilt in taking time away, because there is ALWAYS more to do, and you are ALWAYS afraid that if you are not there, you are “wasting time” that you could spend helping your loved ones recover. But the reality is that we are not made of steel, no matter how much we wish we were. We MUST recharge, reset and heal. We need to give permission to ourselves to do absolutely nothing. We are not escaping you. We adore you. We are recharging our batteries for ourselves, but also.. for you.
Patrick will be inpatient for a few days, and while I plan to be there for therapy to learn all I can, I also am going to force myself to sit on the beach without my phone, to read a book for no good reason at all, to get a massage with money we don’t have, to meet a girlfriend for a drink — and to do all the things I never do and that somehow in my caregiver mind feel terribly indulgent and selfish. “Normal life” feels like a dress that doesn’t fit these days, but I’m going to squeeze myself into it anyway, because its necessary.
To all the survivors out there who have a loved one that supports you: please know you are loved immeasurably. Please understand that we all know that you NEVER get a break from TBI. You live with it and cannot escape it. But as the non-injured person in the relationship, we must take breaks so we can keep fighting for you. Thank you for pushing so hard and never giving up.
And especially to my Patrick, I want you to know, here and publicly for all the world to see, that you are the most incredibly strong, courageous, handsome, charismatic, funny, intelligent and down-right beautiful person I have ever had the blessing of knowing.
Time for me is not a break from you. I love you. And I always will.