Overwhelmed…

I lost my dad after a battle with COVID-19 on November 10. Twenty-two days later, my Uncle also passed after being diagnosed with COVID a day earlier. Both were senior citizens. Both had pre-existing conditions. Neither one of them deserved to die the way that they did. Alone without the comfort of loved ones by their side. I always knew that if my dad fell and broke his hip, it would be something that would be hard for him to bounce back from. When COVID became an issue, I avoided my parents out of caution and would only visit if I had a good 10-14 days to quarantine. I genuinely wasn’t afraid for my life, even with my wonky immune system. I was afraid to pass the virus on to my parents. My cousins also stayed away from their dad. It was out of caution and love because we knew our parents would not do well with the virus. Odds were not in their favor. There are those who claim we wasted precious time. In our eyes, we gave them more time…..even if it was socially distanced because we stayed in constant contact.

Since losing two family members, I have been very sensitive to all things COVID-19. I’m not an expert, and I am completely blown away by the misinformation I see spread across social media. How did a virus issue become such a political dividing line? How is it okay that over 300,000+ fellow citizens have died and it’s not universally thought of as a tragedy? It’s also ironic how many people with no education in the areas are “experts” in all things COVID, vaccines, mental health, and science. I recently saw a post on a People.com’s facebook post where the CDC is encouraging people to stay home. I posted that I wished more people followed this advice because I had just loss two family members due to this horrible virus. Most people commented and shared sympathy, but there were others who felt the need to insult me with comments such as: “Stop playing the victim”, “There was probably something else going on here”, and my favorite (I’m summarizing), “That is why I would never put my family member into a nursing home”. (For the record, my dad was not in a nursing home, he was in a rehabilitation hospital. My uncle had to receive physical therapy in a nursing home because the rehab hospitals were all under quarantine and he couldn’t get in to one.) Now I am very used to getting public comment on my posts. You can’t have thin skin and be a patient advocate. These comments; however, rubbed me the wrong way. Not that people don’t have the right to express their opinions, but attacking someone mourning a loss? What is wrong with people? As my dad always said, “Opinions are like a-holes, everyone has one.” In my experience, some opinions simply make people a-holes.

Then I started to think about it. Why are people so nasty? Why are people raging against recommendations from scientists and doctors? Since the pandemic began, I’ve been walking a fine line with depression. I’m far from alone. People have been impacted by COVID in many ways. Job loss, decreased income, loss of insurance, change in lifestyle, etc., etc. It’s not an easy time for anyone. So many people turned to ranting on social media. People are clinging to what makes sense to them to keep themselves calm. Things they find preventing them form being normal are the enemy, like masks, vaccines, and social distancing.

Stress, anxiety, and depression have wrapped themselves around me during this pandemic. After my dad and uncle died, I had to leave my mom, who really needs support right now because I had to return to work. I don’t qualify for remote work accommodations under the ADA, and I can’t afford a leave that would decrease or eliminate my pay. I had to go back to work full-time and move back to my home two hours away from my mom. I work with pre-teens and teenagers. When I am working with my students, I feel a sense of normal. I can be funny and silly with them. As soon as I log off or they leave my room, I feel the dread blanket drop down again, and it is hard to catch my breath. I have extreme anxiety going to work. I’m petrified of getting infected with COVID and not being able to be there for my mom. Petrified not for my own health, but the stress it will cause my loved one. According to my doctors, I am extremely high risk and should be home, but I can’t do that, so I stress. To cope, I see a therapist, and I immerse myself in books, movies, and TV shows. Anything to keep my mind off of my reality….because reality sucks right now. What I am not doing is clinging to misinformation or spreading lies to make myself feel better.

It’s safe to say that no one got what we needed this year. No one. Patients, students, business owners, employees, employers…..none of us got what we needed to feel “normal”. None of us have lived through a pandemic before. We’ve allowed politicians to politicize a public health issue. People are all struggling and dying. In my mind, a rant about anti masks is a cry for help. A rant about everyone wearing masks is also a cry for help. People are attacking things that cause us stress, anxiety, and depression. What better way to fight back and gain control in our own lives than to attack others whose views don’t make sense to us. It’s sad and it does absolutely nothing to make our reality better. Sure having a small group of friends validate our feelings is nice, but it solves nothing and just causes rifts in families and friendships…..all the while, people continue to die. People cling to “there were preexisting conditions” as if that makes the loss any easier to bear.

As much as I want to rail against people with opposing views on social media, I will not. I will continue to follow suggestions from my personal doctors and researchers/scientists. I will avoid friends/family who are anti maskers, who ignore public health guidelines, and deny the seriousness of this virus. I will continue to take care of me and my family. I’ve experienced unthinkable loss due to COVID and I have learned a lot as a result of speaking to COVID medical professionals. What I know for certain is a pandemic will not go away by ignoring it, no matter how much we wish it were true. I fear we are in for a longer haul than expected even with a vaccine. The whole world is overwhelmed. The ride will continue to be bumpy. I’m going to buckle up and try to remember, even with a huge hole in my heart, that kindness matters…..and I will continue to mourn my losses while trying to heal my broken heart.

Dad’s empty chair.

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

8 thoughts on “Overwhelmed…

  1. We in the autoimmune community have many reasons to be be happy for lives these days. Yet we know how close we and our loved ones are to disaster, or at least that is what it feels like to me. I am so sorry for the loss of your dear father and uncle. we have not lost any family members and so far we have only lost time. Time with our grandchildren, time with our sons, time at church, time.

    Yet at 63, time seems like a lot. I find my self asking how much time. time no matter how we lose it, is difficult to lose.

    Liked by 1 person

  2. Hugs. I am so sorry for your losses. You write an eloquent and sensitive piece, and you try to take the perspective of people who don’t do the same for others. I wish more people were thoughtful and kind like you – especially when it would be so easy and understandable not to be. I doubt I could be so kind in your shoes. Hugs.

    Liked by 1 person

  3. I can’t imagine the pain from losing your dad and uncle to COVID. While I lost a man I considered my dad this fall, we knew it was coming. We had seen his deterioration the past year from Alzheimer’s. We had spent time together while he was still somewhat present, before the pandemic hit. That’s been hard even so. Loosing your loved ones so quickly must be such a shock and then the unfathomable pain.

    Your dad sounds like he had a great sense of humor “Opinions are just like…” and as evident in you, a kind heart. I agree, I don’t understand the stance of refuting science. I do believe these comments and actions come out of fear and surviving the best they see fit. For your own healing, not turning to vengeance and keeping kind is needed. Praying for your safety as you go back to school.

    Like

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