2020 has been a year of grief for nearly all of us. Those of us grieving the lives we once had, those of us grieving the loss of loved ones from COVID-19 and those of us grieving or tending to those who are seriously sick, although not from COVID-19, in a year that makes everything more difficult. Today I’m welcoming Shae Carys to Shattering Stigmas with a beautiful post about grief and loss, disability and learning to fight for yourself in a year that has taken so much. Shae is a writer whose debut piece of fiction came out this year in the young adult anthology Rural Voices:15 Authors Challenge Assumptions About Small-Town America. You can find her online on Twitter.
Twenty-twenty took my mother.
I’m a thirty-nine-year-old disabled author whose debut in published fiction came this year, a semi-autobiographical short story about disability and the anger that comes with it, the frustration and the desire to lash out in order to protect yourself from the judgments of others (“Black Nail Polish,” Rural Voices, 2020). In late 2019, I was officially diagnosed with hypermobile Ehlers Danlos (the same as Maddie in the story). Disability comes with stages of grief, just like any other loss. I grieved losing the person who I was. I had already lost so much physicality, so much mobility and independence. The experts told me that it would only worsen with age.
In 2020, I added a different kind of loss. I grieved losing the fierce, whiplash smart woman who had taken me through the turbulent and contentious relationship between mother and daughter, between two people who could not have been more different for all of our similarities. She was earth. I was rain. She was stoic and solid and deeply wounded. I was naturally soothing, unmistakable, and drowning. My mother wasn’t my heart – she was my brain. She was every bit of pride and intellect I held, everything that stamped my emotions down and told it to stop being so silly. Every relationship I had in my life was tied intrinsically to my relationship with her – damaged, but filled with hope and yearning and love.
I wanted nothing more than to make her proud of me, and I repeated that pattern with so many people over so many years. I scaled a mountain made of misunderstandings and desperate yearnings and damages and laughter and love. I climbed until my hands was raw and bloody and then tumbled down again. I found myself living with her after my divorce, and a new type of relationship struggled to be forged. Above all things, though, I knew she needed me, and I had always thrived on being needed.
In February, I realized that the climb doesn’t last forever – there always comes the dénouement, when Freitag’s pyramid introduces the falling action, and the end to a story is in sight. I cried, I screamed, I punched my bed. I didn’t want to lose my mother, not now. Not from something so stupid and cliched as the habit-induced cancer I had predicted as a child when I saw the horrible videos during assembly of shrunken, tar-blacked lungs.
The pandemic had just begun, and my own mental health wasn’t at its best. Having always struggled with depression and anxiety (as far as I can remember, since they just deemed me as “sensitive” and prone to being moody), I was to be her official caretaker when I could barely care for myself due to my chronic pain. There was no one else, though – she had long since divorced my father and my sister lived across the country. It would be up to me. I would have to forgive her for the hard journey forward if I was to help her make this final trek with grace and love. She needed me.
I knew my limits, immediately reaching out to a therapist I had met at my last job, though there was a long wait to be seen. I kept working on the drafts of my short story for Rural Voices that were coming in, since it was to be published soon, in October 2020. I kept working on my articles for the horror magazine I’d worked at for years. I couldn’t stop. Appointments came, radiation, and my mother grew weaker and thinner. She had no appetite. She had lapses where she couldn’t remember where or even when she was. I called 911 many times and she was hospitalized twice more. The third would be the last.
When she passed in early May, I was inconsolable. We were mid-pandemic, so no funeral could happen and the spreading of my mother’s ashes in her homeland of Germany would have to wait. My ability to get medical help was restricted. Then, my application for disability was denied due to the rarity of my condition and how misunderstood it is – three years into the process, after two hearings. At so many times, I felt hopeless. Her house, now mine, seems quiet, almost to echo the mental space that I occupied. Instead of her haunting my house, I haunted hers. Our relationship, until the end, was symbiotic. She needed; I gave. I was lost without her. In many ways, I still am.
I want to say that 2020 took my mother but gave me myself back, but I can’t. I can’t say that yet. I want to say it. I want to scream it out. I want that to be my truth for this horrible year. I want to come out on the other side of all of this, like a hero who’s fought their way into hell and back, but I don’t know what the future holds.
What I do know is that the list of things I can control, any of us can control, is so terribly short. Our actions, our reactions, our words, our deeds.
My mother got to see the ARC of Rural Voices three days before she passed away. She got to see my name in print. The last thing I remember her saying to me on the day she died was “thank you,” and I got to hold her for an hour that day, stroking her hair and soothing her, just as she’d held me so many times when I was a child. I didn’t get to say goodbye to her because of COVID – the one last regret I have, though it was out of my control.
Every so often, I hear her say, “Take care of yourself, bug.” I remind myself to take my medicine, to take a shower, to eat something, to drink some water, even when it’s hard. Even when I don’t want to do anything but get out of bed. Sometimes, when you’re a person who thrives on being needed, don’t forget the one person who needs you the most is you.
About Shae Carys: I’m a rural author, born in Kentucky and raised in Indiana. However, I’ve got a bit of European flair thanks to my German mama. Add in the fact that I’m more than a little weird, am a horror fanatic, and deal with several chronic illnesses (where my Zebras at!), I’m definitely all over the board. I like it that way, though.
I write for young adults and adults, fantasy, contemporary, horror, and science fiction. I love genres and am a champion for them. I write poetry, mostly for one person, and love animals more than anything else in the world. My favorite fairy tales are Bluebeard and The White Road and my biggest influences in writing are Neil Gaiman, Margaret Atwood, and Angela Carter.