Accepting My Disenfranchised Grief
By: Rachel D.
I am a family caregiver. It’s a role I didn’t immediately accept, and one that has brought grief, joy and an appreciation for the life that I have now. I have a complicated relationship with my caregiver title, after all, I am also a wife to the person I care for. I wanted to be normal, average, financially and physically stable. I had a partner who was willing to split everything with me in terms of chores and household labor, who was willing to pick up a chainsaw or cook me a meal.
I didn’t want or expect what was about to happen to us and I was not ready for the hardship, the disenfranchised grief and the new reality that was to follow.
I haven’t experienced many birthdays quite like my “Dirty Thirty.” That year, my boyfriend, Jay and I went out celebrating like I hadn’t done since I turned 2 1. We had plenty to celebrate that year. We were settling nicely into our first house. It was small, but big enough for us, big yard and a huge garage not typical in suburbia. At the time, Jay had just been promoted and was about to start a new position within his company. He fulfilled a lifelong dream of purchasing an old airplane. He was a very experienced pilot who had been flying as long as he had been driving. I had gone back to school and finally finished my bachelor’s in social science, I was within weeks of graduating. I had already given notice at my work and was planning on switching career paths to something more aligned with my degree and my values. I was already training my replacement.
And then, the ground came out from under us.
I got the call no one wants to get. In the middle of a normal Friday workday, I found myself on the phone with the emergency department at a nearby hospital. The hospital staff told me Jay had been involved in an accident, not a motor vehicle crash, but a plane crash. They didn’t tell me much, but urged me to come quickly and “drive safely.” From this phone call I was able toinfer two things. First, he was alive, and second, he was conscious, I knew this because the hospital had found me at work, which means he was able to tell them my name and where I worked. I held onto that thought as I drove. I was panicked .My mouth turned dry and grainy. But I held onto the last words said to me, “drive safely.”
I didn’t know what I was preparing myself for, but I knew it couldn’t be good news. They brought me straight back to see Jay as soon as I arrived. It seemed the entire hospital knew what had happened. The tech who led me to his trauma room warned me before I entered that he had a “pretty serious neck injury,” but I wasn’t prepared for what that meant. When I entered, the ground flowed and billowed. They had cut off his clothing with trauma sheers and the feathers from his down jacket had spilled out into the room, moving with any faint breath or movement.
They had him on a gurney, totally immobilized. He had two black eyes, blood coming from his forehead and he was wearing a neck brace, but I could see the fear in his eyes, and the slight relief when I came into his view.
It wasn’t long before the neurosurgeon returned and delivered the news we weren’t prepared for.
“I can fix the bones, but I can’t repair a spinal cord,” he said. The reason he wasn’t moving in the hospital wasn’t because the staff had immobilized him. He was paralyzed. I appreciated the directness of the doctor, but now I had a new reality to fixate on. From this point on, our life would be different. We were now living in the “after.” The adjustment to living with a spinal cord injury as a low-level quadriplegic was going to take its toll on both of us.
They took him back immediately for surgery, the doctor did not leave anything up for discussion.
This surgery was happening and it was going to happen that minute. Multiple procedures were performed. It took hours. Jay’s crash had broken and dislocated his neck in multiple locations.
The staff handed me a hospital bag with all his possessions, and I was left holding a sack full of cut and ripped fabric, feathers and a cell phone and wallet covered in dried blood. While the surgery was happening, friends started tagging me online in pictures and news articles about the crash. That was the first time I had seen the scene of the accident and it was traumatic. I panicked every time my phone pinged. In the ICU waiting room, I made a mad dash to turn off the TV when the 10 o’clock news came on. While people were sending all their “thoughts and prayers my way” and thanking God he survived, I was praying he wouldn’t. I know that sounds morbid, but in my bargaining stage of grief, I was begging for some deity to end all of this, or to undo it, praying that some magic might be able to rewind our lives to yesterday.
And while people were praising God for his survival, I felt this disenfranchised grief. I felt that I shouldn’t be sad, that I wasn’t allowed to grieve our old life because, as so many people have told
us over the years, “you’re so lucky he’s alive.” It’s as if that reality makes living with a spinal cord injury as a quadriplegic better, or being a family caregiver at 30, easy. There are people who specifically judge my grief of the life I envisioned for us, simply because I am not the person who was physically injured. I am not the one living in a wheelchair. I am not the one who needs help with activities of daily living or needs assistance using the bathroom. My partner survived his crash. We’re blessed for that. These are all things I am acutely aware of. I am not the person living with an unrecoverable injury.
This is why I emphasize “disenfranchised grief,” rather than using just the word “grief.” Because sometimes others or even myself don’t feel that I should have those feelings.
I am not ungrateful to still have my partner. But I am still grieving.
I wasn’t prepared for the sleepless nights on the ICU bench, battling Jay’s hospital delirium and night terrors. I wasn’t financially equipped to pay tens of thousands of dollars to immediately remodel our home to make it wheelchair accessible, so that he could even come home. I wasn’t ready to have our faces plastered on the local news, or have strangers gossiping online about what he might have done wrong to cause this crash. I didn’t know that I would have to answer questions for the NTSB and the FAA investigations or that I would be responsible for handling the plane wreckage with the insurance company. I barely knew what a rehabilitation hospital was, and I certainly didn’t know how to select one, or how we would pay for it.
A few years after Jay’s accident, I was diagnosed with post traumatic stress disorder, and generalized anxiety disorder. I have now been through different therapies, treatments and medications. Sometimes I still catch myself feeling ashamed of my grief, as though I shouldn’t have those feelings because I am not the one in a chair.
I still struggle with what to do with all of that pain, sorrow and anger I feel, because the vision of the life that I have, doesn’t match the trajectory of the life that I was building with my partner.
That grief of “this isn’t what I thought my life would look like,” is very real and it’s okay for people to acknowledge that grief. One of the oddly most comforting things anyone said to my after Jay’s accident, is “the only way out is through.” It’s a slight misquote of Robert Frost, “the best way out is always through,” but the sentiment is the same. You can’t change what already happened, but if you keep going, you will likely come out the other side.
In recent years, I have used that sentiment to lean into and acknowledge my grief a bit more.
Surprisingly, this helped me to achieve clarity on some of the things that I don’t want in my life and the people that I want to surround myself with. I have found purpose in guiding and leading other family caregivers along their path with the Brutally Beautiful Foundation. I have discovered through that work, that caregivers often share that disenfranchised grief. Sometimes other people don’t feel that we have the right to our sadness or our struggle and that occasionally, caregivers don’t believe it themselves. Grief can simultaneously tear us apart and yet help us understand and connect with the people around us.
