Another nightmare I had repeatedly, was of having the virus and not being able to breathe. In reality not being able to breathe was not something new to me. I was a pro at contracting respiratory infections. Most of the time, if not all the time, I had to be put on oxygen unable to breathe on my own. There were countless times in my life, when doctors had to extract fluid from my lungs with a large needle. However, in the dream I needed to be intubated and I was begging them not to do it. I didn’t want to be unable to talk. I had that dream time and time again.
When you’re in a chair most of the time that’s all people see. Especially doctors. People and doctors alike tend to think that you don’t understand or know what’s going on. They tend to think you can’t advocate for yourself. But my mental faculties work just fine. Not able to communicate to them on what I did and did not need was not an option.
Even in real life, it was hard to get the doctors and nurses to listen to me. About a year ago, I was hospitalized for having pneumonia (surprise, surprise). The fluid had traveled behind my heart. I had paged the nurse because I had to pee. The lady wanted to stick a catheter in my lady business. Here’s the thing, when you’re in a chair most people, doctors and nurses included, assume that the diagnosis is paralysis. I had to explain to the nice lady I have CP, I’m not paralyzed.
“I have full function of my bladder,” I told the nurse. “I just need help getting to the toilet.”
“You’re very fortunate,” she told me. Silently I agreed. “A bed pan might be quicker,” she suggested.
“No thank you,” I said. “I can use the toilet,”
“I’m already behind on my rounds tonight,” the nurse held up the light pink bed pan.
“No,” I said firmly. She sighed and set the bed pan down. “Can you bring in a Sara Stedy?” I asked.
“How do you know what a Sara Stedy is?” she asked.
“It makes my toilet transfers a lot easier,” I told her.
A few moments later she returned wheeling in a Sara Stedy. A Sara Stedy was a manual standing aid with wheels. It was designed to help patients to pull themselves up into a standing position. In addition, it can be used for transferring from one surface to another. It featured an innovative pivoting seat, that provided the user with stability once they were standing. The standing device had a cross-bar handle so that the user can pull themselves up onto the rolling platform and support themselves.
The nurse reluctantly brought the device in front of me. I stepped onto the light blue platform and pulled myself into a standing position. She sighed as she pushed me into the bathroom and positioned me directly in front of the toilet. I pulled the hospital gown up to my knees and sat on the cold toilet seat. After I was seated, I released the urine from my bladder.
“I guess you do have control of your bladder,” the nurse answered.
“Yeah,” I said dryly. I prayed every night that I wouldn’t be hospitalized during this pandemic. If that happened, I knew that I would be condemned to death.
If I wasn’t being antagonized by my nightmares the loneliness and the silence was starting to get to me. I felt like my room was the eye of a hurricane. I was in the center of it, with the chaos falling around me. Then I remembered in the eye of the hurricane there was only deafening silence and solitude. I learned too much of that could also be dangerous. Sometimes I would go into my mind and have conversations with the people I longed to see. I would have long conversations with my grandparents inside my head. I missed them so much. They were my two-favorite people in the entire world. And I hated myself for not being able to travel to see them.
Some mornings I would imagine my grandma and grandpa at my kitchen table as I ate my bowl of cereal. I would imagine my grandma sipping her Bustelo coffee and my grandpa reading the paper. Unlike me my mother was a late sleeper and she also battled with depression. She wasn’t much of a talker either and slept almost too much. As a result, my only companion aside from the tv and my cat was the silence.
Thus, I created imaginary grandma and grandpa to keep me company. My grandma was a beautiful woman with high cheek bones. She did not look like a grandma. She had ivory silk skin and long jet-black hair that fell to her shoulders. She had blunt bangs and chocolate almond shaped eyes. She would not approve of the cold cereal. Instead, she would make Avena de maíz. Spanish for hot porridge made from cornmeal sprinkled with cinnamon.
“What are your plans for today, Mamita?” Grandma asked. I would tell her about the latest piece of writing I was working on or what book I was currently reading. She never really approved of the kissing vampire ones.
“What about you, abuelita?” I wondered. She would tell me about all her friends at church and the latest gossip she had heard about certain celebrities.
“What are your ambitions for the future?” my grandpa interjected. My grandpa was a short and stocky man. His dark hair had turned to gray and he was completely bald at the top of his head. His eyes had turned completely light blue from the cataracts. Like me, he used a wheelchair now to get around. Because of the wheelchairs we had to coordinate our hugs. We had to align the wheelchairs just right in order to reach one another.
My grandpa was, and still is, my knight in shining armor. He taught me everything I know. In reality he’s really more like my father. I never knew my biological father. But having Grandpa as my dad, not knowing my biological father didn’t matter. Grandpa was more than enough. He taught me how to balance a checkbook, and the importance of knowing English and Spanish. Grandpa emphasized the importance of education, dedication, and hard work. He instilled in me that family was everything. He taught me the value of working hard and what it meant to put money away for the future. When he was officially diagnosed with dementia, I started to resent the world. He didn’t deserve such a cruel fate. Subsequently, even though he was still with me I felt like I was losing pieces of him. Some days he didn’t even know who I was. But in my mind, I didn’t have to include the dementia, the horrible sickness that was taking him away from me. There was only him and I and how we used to be.
“When do you plan to refocus on school and possibly getting your master’s degree?” imaginary Grandpa asked.
“When I have the money and the proper writing portfolio,” I replied.
“Don’t get too serious with some boy,” imaginary grandpa chided as he looked over the newspaper.
“I won’t,” I promised. The way my luck went if I even kissed a guy, I could contract enough germs to catch pneumonia.
“You need to focus on your education and your future career first,” imaginary grandpa insisted.
“Si, yo se,” I told him. In my head, I would tell him not to worry that eventually things might go back to normal. But I knew I was lying to myself. Even if these were fake conversations living inside my head.
In my heart I knew that I was letting him down. I had become complacent. He would want me to conquer the world – not hide from it. Thus, my main focus became staying alive and my writing. Consequently, in order to do that I had to remain alone in my dominion of isolation. As I read and wrote I was haunted by the echoes of people I wanted to be with along with my memories of the people I loved.
There wasn’t much that I could control in my life. Not even having the ability to walk or run. Yet, I wasn’t standing still I was lying in wake, fighting to survive. What I could control was my fortitude and attitude. I was a fighter. My whole life could attest to that. Death would not be my central narrative. I was given a gift of having more opportunities by my grandpa and I was given the chance to live again and again by a higher power. I did not want to waste it.
Although living my life was massively different right now, I didn’t want to limit myself. I didn’t want to throw away my shot. My grandpa came over from Puerto Rico to New York when he was just eighteen years old. He didn’t even have a high school diploma or speak English. But he didn’t let that stop him. He had a dream of becoming a police officer. He knew in order to do that he would have to obtain a high school diploma. English was not his first language but he did not let that be an obstacle that affected his ambitions. As a result, he took classes that taught him how to speak the English language. In addition, he built lamps in a factory and at night he took courses to acquire his high school diploma. Alas, he graduated and then completed his training at the police academy. His next dream was that he would eventually build and own his own home. Later, he met my Mima and they had four children. This included my three uncles and my mother. After thirty years on the police force my grandpa retired and returned to Puerto Rico. He wanted to help his other family members who were struggling to rebuild their homes because of natural disasters that had hit the island.
When my grandparents arrived back to Puerto Rico my grandpa had another life mission that he wanted to fulfill. As a result, my abuelito made an investment for his entire family. He brought thirty acers of land and distributed it between his brothers and sisters. Meanwhile, my grandpa began to design and build a two-story house for his wife and children from the ground up. Eventually, that house became a reality. Brick by brick and cent by cent and sacrifice he hand built his dream home for himself and my grandmother to grow old in together.
Thus, I figured if he could overcome all that, I could learn how to adapt and survive through this pandemic. I would not throw away my shot at living or thriving. I would not squander on all the values that he had instilled in me. As a result, I would make something of my life despite my compromised immune system and disability. So, I read every book that I could get my hands on, and I wrote every day. I wanted to achieve my dream of becoming a writer. I’m still working on that ambition to this day. Even when obstacles and disadvantages kept my grandpa from his goals, he found a way to overcome those barriers. I could do the same.
I realized, while writing this, that it was time for me to stop moping and make the best of my circumstances. It was time for me to rise up. If I couldn’t make a difference in the outside world with my presence, I would continue to persevere with my words. I could make a difference with my words and stories. Maybe my writing could inspire people. Maybe it could touch them in ways I can’t even fathom. Or maybe just give them a spark of hope, like tiny embers bursting into flame. Its in dark times like these that we look for anything to tether us to hope and sometimes that’s half of the battle.