COVID & SCI: Fear, Guilt, Gratitude and Letting Go

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At the beginning of March 2020, I was sent home to work remotely with the rest of the care management team of the federally qualified health center where I work at. Since then, I have been staying home most of the time and avoiding crowded places; wearing my mask if I have to go to the store or for hospital visits. Fast forward to January 6th 2021, I got my first C19 vaccination dose from Moderna at my workplace since I work in the healthcare field and was fortunate enough to be among the first ones to receive the vaccine. I was due for my second dose of C19 vaccine on February 2, 2021, however, I unexpectedly got exposed and then contracted C-19. My dad was the first one to contract the virus, then my mom, and eventually me. I need to clarify that since the beginning of the pandemic two of my Personal Assistants (PA’s) stopped working for me because they were also afraid to contract the virus and decided to stay home as well. As a result, my mom and dad became my main PA’s. I have a Spinal Cord Injury (SCI) and use a motorized wheelchair for independence and mobility. My injury is at the C3/C4/C5 in-complete level, as a result, I am quadriplegic and need high levels of care to survive.  I also need to clarify that I work full-time as a social worker and have been able to sustain myself with the assistance of my PA’s and due to the lack of community based programs to pay for my 24/7 need of care, I share a house with the best roommates I could have ever wished for (my parents).

We are still trying to figure out where my dad could have possibly contracted the virus as he is the one that does the grocery shopping for the household and that could be a possible way of exposure.  To provide you with a better idea, he went grocery shopping on the week of January 18-22 twice. We went to have dinner on January 22nd on a freezing day at a patio with outdoor heating. He started showing symptoms of what we initially thought was allergies on Sunday February 24th.  As a healthcare professional during pandemic times, I suggested he should go get tested for Covid-19 on Monday, February 25th and so he did and got the call that he was positive on Wednesday January 27th.  January 27th was also the first day that I started experiencing neck pain and random headaches.

January 27th was the first day we stayed home and we saw no one. We had fear, we did not know how my dad would react to the virus. I also thought me and my mom had it for sure. When my sisters and brother learned that my dad was positive for Covid-19, some suggested that my dad should stay at my sister’s basement so he could isolate better. Due to reality and the assistance I need to survive, one person could not assist me by themselves. As selfish or wrong as this may sound, I needed my dad’s assistance to be able to do the daily tasks needed as it was just my mom and I. I did not have more options, getting a new PA does not happen in hours or days, it actually takes months for a new PA to be enrolled in the system from the state so PA’s could get paid. My dad agreed that it was best for the three of us to isolate as we tried to take care of each other as much as we could. We wore our masks when we were close to each other, and tried to be away from each other as much as we could to avoid getting infected.

I requested Thursday the 28th off from work and made an appointment for me and my mom to go get tested and see if we had the virus.

On Friday 29th I received the news: I was negative and my mom was positive for Covid-19.  I was shocked to hear that news because I was trying to stay away from my dad as much as I could to avoid getting the virus, but not from my mom. My mom was actually the main person that would take care of me for the most part. From that day on, I started wearing my mask when I was around both of my parents, and they would wear theirs as well.

During that weekend, I decided to take the week off from work so that my parents could rest well and recover from the virus. I was nervous for them because my dad is almost 71 years old and my mom 66. Even though I have been working from home since March 2020, I knew the people with Covid-19 needed to be well rested since one of the symptoms could be fatigue. Although my schedule is from 9:00 AM to 5:00 PM, guilt started kicking in. I felt guilty for requesting the week off from work since we had a lot of work. I felt guilty for having my parents take care of me while they were sick and trying to fight off the virus. A lot of people may not understand this feeling or what I am trying to convey, but there is a lot of guilt that comes with having someone help you all the time.

A few days passed and my symptoms increased- headaches, dry cough, some congestion in my nose, and neck and now body aches. I felt tired all the time.  On Wednesday, February 3rd, I tested again to see if I was still negative or perhaps there could be was a false positive the first time around, I thought.  On Thursday, February 4th, I received an email and a call stating that I was positive for Covid-19. I had mixed emotions. In a way, I was relieved thinking that all the symptoms that I was experiencing were correct because those were the symptoms of Covid-19. I was also relieved that we were experiencing the same thing, at the same time and hopefully we would make it out of it together.  On the other hand, I was afraid that I might get complications due to my SCI as I would not respond to the virus or bacteria as I should since messages to the brain are not transmitted correctly.  My injury also affects my lungs and my breathing capacity. I am not even able to cough normally. I tried to do an anti-inflammatory diet for us to help fight off the virus. That being said, we were avoiding lactose, sugar, alcohol, soy, legumes, and grains. I was actually following the Whole30 way of eating with my mom a month before. Whole30 consists of avoiding the foods that I mentioned, so I felt we were on the right track as this virus tends to cause inflammation.

On Friday February 5th my sense of smell and taste went away. During the weekend and after a lot of back-and-forth, I decided to take another week off from work so that we could all rest and recover from the virus.  The feelings of guilt came back as I needed to take time off from work again to take care of myself and of my parents. After the feeling of guilt, gratitude followed. I was feeling so grateful to have stable employment and grateful to my employers that approved my request and were supportive of our recovery. I was grateful that we got to stay home and rest and did not need to get hospitalized like so many loved ones have. I began to reflect about everything that the pandemic has caused.  The pandemic caused a lot of anxiety as it prompted us to do things we were not expecting. I learned to embrace my reality and learned to let go of what I could not control. There is a lot of things I cannot control with my disability, from how my body reacts and responds to certain stimuli, as to when my PA’s will decide to come back to work. I learned to trust the process of life and trust that my body will be resilient.

 

Written by Stefany Campos
Chicago, IL

 

3 Comments

  1. Jazmin Sanchez Campos
    February 26, 2021

    Thanks Stefany, you are a truly inspiration and the way you express your feelings and emotions makes me feel your pain, doubts but also the faith you have on your own process and system.

  2. Erika Orozco Campos
    February 27, 2021

    Stef , eres un súper ser humano , gracias por compartir tu experiencia ya que es cierto que tú más que nadie está comprometida a cuidarte por tu situación, pero saliste avante con diciplina y cuidados para tu cuerpo, estoy muy orgullosa de ti y de tenerte como familia , te amo y eres una inspiración viviente para todos nosotros, gracias por compartir tus miedos y tus logros.

  3. Edith Valenzuela
    February 27, 2021

    Stefany thank you for sharing your experiences. Yes, it is very distressing to know that your loved ones are going through this terrible disease. Also the feeling for taking a few days off for your recovery shows how responsible you are in your work. I am happy to know that you and your parents are well and healthy. We know the strong woman you are.

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