Afraid not to die

Each time we put our feet out of bed, each time we create something, each time we defend our rights, each time we remain silent when we know we should speak up, each time we ask for help, we are all battling our fears. Sometimes, even each breath we take is a battle, but society demands that we hide our fears and pretend our lives are perfect, or we risk being unworthy of love.

One day, I got tired of playing that game, so here is the bare naked truth: I am afraid but I refuse to let my fears defeat me. So, with each post like the one you’re about to read, I recognize those fears, and then I move on.

Amidst the beginning of the COVID 19 quarantine, I sat next to my grandmother lying in a bed, and watched her take breath after laboured breath. She would gasp and stay still, breathless. I would breathe as well in empathy, waiting, mandatory face mask and latex gloves making me uncomfortable and heated in the hospital room. I had a twisted hope that with that last breath, grandma had finally been released from prison, but every time she would inhale again. Each time I felt both monster and relieved granddaughter. Each time I would speak, not in prayer but in encouragement, reminding grandma of all the people waiting for her in the afterlife. Grandpa, her parents, her brother, even the freaking Duchess of Alba, Grandee of Spain, a woman she admired and considered her friend. You see, my grandmother was lying in that hospital bed, dying, but her soul had left us six years prior, only her body refused to get the memo.

The woman who had stayed in bed for a whole month in protest to her father not letting her study circa 1946, succumbed to Alzheimer’s disease on the 21st of March 2019. However, she was gone from this family on Christmas day 2013. Years earlier, a birthday cake filled with whipped cream and lettuce had introduced us to the beginning of the disease. Despite a family disagreement, we followed the doctor’s suggestion that grandma should move to a nursing home. It remains to date one of the most challenging decisions I watched my father take. However, that Christmas Eve, after a night of laughter, family, and remembrance, our hearts rejoiced by having grandma stay over for the night. It wasn’t until early morning that the heartbreak began.

I was asleep in my room, sleeping with the ease of having my whole family together in one house after more than five years when the house alarm went off. The sound of the siren pierced my ears, and my heartbeat jumped around my chest with the same rhythm of a five-year-old playing drums for the first time. Had thieves come into the house? Were we in danger? I got up, fast and uncertain at the same time, afraid to face the threat but unable to hide under the covers. I crossed my mom in the hallway, her eyes wide with fear, and we both moved silently down the stairs towards the study door where the alarm panel sits.

Lights were flashing red and yellow in the panel, the siren still working hard to turn me deaf. We ignored the noise and tried to focus on what the lights were trying to say. There had been no perimeter breach, and that made my heart steady. The infrared sensors had gone off, so I didn’t hesitate to turn the alarm off, gifting us with a moment of peace. The phone rang, and my mom went to pick it up. The security company was inquiring about our status.

“Yes. We’re looking into it. It’s the living room’s infrared,” my mom said into the phone, as we both headed into the room.

A lost soul is what we found, a frightened eighty-seven-year-old, eyes like a deers’ facing a headlight. She was shaking from head to toe, despite the soft twenty-six degrees Celsius outside the window. My mom finished with the security company while I approached grandma with slow, measured movements. I was confused. Why would grandma go into a room she knows is protected by the alarm at night? She had stayed home so many nights before. She knows the kitchen and real living room is on the other side of the house, safely accessible and even warmer than the formal living room. I didn’t ask any of the questions running astray in my mind. I could only grab my grandma’s hands and ask her if she was all right.

Her breath was laboured. Her voice trembled as she mumbled her answer. She looked through me, through mom, through the house she had visited uncountable times but now was as unfamiliar to her as any stranger’s home. I put my arm around her shoulders, trying to give her comfort. My eyes clashed with my mom’s, and in unspoken communication, we both remembered the words the doctor had said, the same words that had convinced us that moving her into a home was not selfish as some family members had told us it was, but a favour that pays in the long term. Mom and I knew what to do.

We sent my dad to get the car ready while we gave grandma a glass of water and gathered her belongings. I draped her coat over her shoulders, and as soon dad let us now the car was ready, we guided grandma into the car. The trip to the nursing home at about 7 am on Christmas day was quick. On the way, we crossed the party stragglers moving through the streets who willed the night to stay young forever. The sun had already come out, and the day promised to be beautiful on the outside. On the inside, my organs shivered as if I were trapped in the depths of an Arctic winter. I remember we talked with my mom as she drove the car, the words a blur now, our only concern to offer comfort to my grandma. I don’t think we ever succeeded.

I rang the bell to the nursing home, while mom coached grandma out of the car the same way she must have coached me when I was a little kid. I stared at them while I waited for the night shift nurses to open the door. Then we were inside and rushed through the long hallway, past the other sleeping ladies, past the empty dining room until we reached my grandma’s room. I sat grandma on her bed, while mom talked to the nurses right outside the door, explaining what was going on. The other bed in the room was empty, her friend and roommate also gone to her family’s for Christmas Eve.

Sitting next to my distraught grandmother, I flailed like a drowning woman, searching for a way of being useful while holding my insides together. I heard the nurses say that it was better if we helped grandma to bed, and I closed my eyes in gratitude. Something to do other than watch my grandma tremble with a fear I couldn’t calm. So, I pulled back the covers and grabbed her nightgown. I kneeled next to her and started helping her out of her clothes. I remember talking nonsense to her to make her feel comfortable while my eyes burned at the sight of her shaking feet. I trembled myself during the five minutes spent trying to take off each of her black nylon socks because she couldn’t stop shaking long enough for us to help her without hurting her. Next came her top and her skirt, and then time sped up, and we found ourselves with my grandma clothed in her nightgown, lying on her bed, mom pulling the covers over her until all I could see of her was her head. The nurses shepherd mom and me out of the room, promising that they would give her something to quiet her nerves and that grandma would be all right after she had a bit of a rest. I don’t think she was ever all right again.

It was as if that night had been the tipping point of that insidious sickness that only takes and steals until there is nothing left behind. After that Christmas day, my grandma was never the same, and we watched her fade away in front of our eyes. She was no longer the storyteller, no longer the fancy aristocrat who knew every rule of engagement and would never be found breaking them. She was no longer the woman who lived her life talking on the phone with her loved ones, no longer the one who woke her roommate in the middle of the night to share a bar of forbidden chocolate. Instead, she became aggressive, a Houdini who managed to take off her adult underwear before becoming the Jackson Pollock of feces, a vegetable dressed in the skin of my grandmother.

Over the next two years, there was nothing left of my grandmother save for her prayers. We could no longer communicate with the woman who in her life had talked people into deafness. The only way we could reach her was through prayer. During our visits, either of us would start to pray, and grandma would pick up on it until, at some point, not even those words were recognizable anymore.

Seeing her like that, how a woman who made an entrance everywhere she went had turned into the raising of a shell, was the worse. We would go visit her and catch her having a quiet moment, looking at nothing. We would approach, heart twisting inside, a smile that felt set in stone on the outside. My parents and I would sit with her and talk to her, asking about her day, telling her about our news. I would tell her about my brother, how he was so successful at his new job abroad. Every time, she would start mumbling words we couldn’t understand, but that we would pretend to for her sake and ours. There came a time, however, where the only word we could understand was “bye”. She would go from peaceful before our arrival to anxious, repeating the word “bye” over and over again as her hands, tense, would wave us away. I would leave the nursing home feeling worse than when I arrived. I was sad and frustrated not only to see as a living corpse but because we were responsible for her anxiety. We were strangers telling her that we were her family, a family she did not recognize.

I felt more like a problem for her by visiting her than a joy. I was imposing myself on her when she looked better off without me. Yet, I felt a monster for considering not going to see her and even worse when I followed through with those thoughts. I felt as trapped as my grandmother in her body. I wanted her to be the same person she had been before the disease, but some dreams don’t ever come true. I couldn’t understand (and I still can’t) why our own bodies can attack us with such cruelty. Don’t get me wrong, I am fully aware of the biochemical pathways that break down in the brain, but still, why? Why does the body not give up before we lose who we are?

Three years before the Christmas day nightmare, Mimosa, my beloved cat of seventeen years of age, became blind. After several studies and treatments, the vet sat us down and told us he couldn’t treat Mimosa anymore. We had exhausted every single treatment option and prolonging her life, he said, would only make her suffer. He made it very clear that we were in our right to do what we wanted, but he wouldn’t inject Mimosa with no other dose as it would only make things worse for her. He gave us our options, take Mimo home and watch her suffer as her body gave up on her or be merciful and end her suffering right then. My cat had had a good life. Seventeen years with love and care and a large garden to roam and a sister to play. Mimosa had had a good life, and we had loved her with all of our hearts. We couldn’t let her suffer anymore. Amidst a sea of tears, we made the choice that, although more painful to us, was the best choice for my Mimosa. We said our goodbyes, and she was gone. She fell asleep and didn’t suffer from the breakdowns her body was putting her through. She had the best death we could give her.

I couldn’t help myself thinking of Mimosa each time I went to see my grandma. Only this time, it wasn’t my grandma’s body the one breaking down, but her mind. Her body was healthy, never having had any issues with high blood pressure, cholesterol, diabetes, or any of the diseases that come with old age. Yet, her mind was gone, locked inside a body that wouldn’t respond. Even behind that prison, her personality, her preferences were gone. They were too deep inside that cage where none of us could reach her. We had had more mercy on my cat than on a woman who had been the life of any party, the beautiful soul I never truly understood.

It would take six more years before my grandma’s body decided to give up. Six more years of watching my dad’s heart break each time his mother told him to go away in what broken words she could muster. Six more years of frustration and shame, trapped by what I knew was the right action and what would protect my heart the best.

Then, amidst a global pandemic, we had to rush grandma to the hospital and stay by her side as much as the quarantine would let us. She didn’t get the COVID 19 infection. It was her body who had decided it was time to go. As I watched her, she would struggle to take one more breath, an oxygen mask covering her face, sedatives lining her veins so that she didn’t suffer while suffocating. Sitting next to her, tears burning in my eyes, I spoke in the silence of the room, reminding grandma over and over of all the loved ones waiting for her, that we were grateful for all the time we had had, and of how much we loved her. And I told her the truth as well, that we couldn’t stand to see her suffer anymore.

After each breath, she would be quiet. I would think this is the one, the moment she is free to be herself again, but each time she would take another mouthful of air, a woman drowning in a sea of oxygen. Each time my heart would jump with guilt, shame, relief. Each time her breaths came harder, longer in between, and I felt helpless, frustrated, my only consolation that the drugs prevented her from feeling, wishing I could numb the pain as well.

For almost three days, she struggled until her body had its final say. After a little more than six years, my grandma was free, her jail had rusted, and we, who felt like her helpless jailers, were free as well. We could now move on to recovery. Let ourselves dive fully into old photos trying to recapture the great woman she once was. We could remind ourselves that the body we had said goodbye to wasn’t my grandma. Grandma had been the vibrant woman who would go to the beach in her high heels and not a hair out of place, and who had helped my grandfather build a construction empire in the old days.

It’s been a little over three weeks since she’s gone, and I can only hope she is back at her stories, back at her games at the beach with her friends, back at her daily ice cream with a dash of whisky. In the meantime, we keep trying to recover the woman who was stolen from us by a merciless, unstoppable murderer.

Published by Vanesa L. Perillo

Finding the balance between fear and courage* *Inspired by Cara E. Yar Khan

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