In March 2020, on the advice from my pulmonologist, I started to self-isolate with my husband due to the COVID-19 pandemic. Since I worked in a large hospital, my doctor wanted me off the premises. He also wanted me to take extra precautions since I had advanced lung disease and cystic fibrosis-related diabetes. From March 2020 to November 2021, I didn’t see any family at all in person; “seeing” family meant calling them on FaceTime, I missed the birth and baptism of my sister’s first child, I didn’t go to the grocery store, and I had virtual clinic visits. I wanted to protect my health the best way I knew how — by being cautious. I didn’t spend the last 32 years taking care of my health to get severe illness or die from a virus.
I spent the next 14 months fighting with my workplace to allow me to work from home. My boss tried to guilt and shame me into not listening to my doctor’s advice and to continue working in person. After being furloughed and put on sick leave, I finally had to choose to come back on campus (with more than 20,000 employees, not including patients and families) or I would be let go. I decided not to go back to protect my health and keep isolating at home, especially with the disregard my boss had for my well-being.
While we have been careful and have spent limited time with others, my husband Justin and I have found ways to really embrace and enjoy our time together. Almost every day we would ride our bikes until the weather was too cold. We started a garden and grew a plethora of vegetables and canned them, made sourdough bread, tried new recipes, joined a volunteer organization that ships cookies to deployed armed forces, reorganized our house, and gained two more hours of sleep each day. I can do more treatments during the day; my exercise routine has increased because I have more time and I’m less tired. While I always look at things from “the glass half full” perspective, I’m super grateful for the time I’ve gotten to spend with my husband and my family as well as having a better work-life balance.
Eventually, I found the perfect fully remote job with an awesome boss who greatly values work-life balance. I’m able to work my own hours and have much needed independence to ensure I’m keeping up my CF care and getting my job done. We’ve taken our RV north to our family’s property, working right by the lake — swimming, fishing, and biking after work. It’s been an amazing shift in quality of life, having all this freedom!
I also missed my family greatly, and while seeing my nephew on FaceTime was a good alternative, it couldn’t replace toddler snuggles!!! In November 2021, my husband and I surprised my family by driving our RV from our home in Michigan to see them in Arizona. We isolated the entire way down, only stopping to get gas. We surprised everyone — my parents, sister, brother-in-law, and my nephew. Since we both have remote roles, we’re still in Arizona squeezing in all the cuddles and play time we can! Luckily, they isolated as well so we felt safe visiting them in person.
Our circumstances still look about the same. We’re still not going grocery shopping, haven’t been to a restaurant or movie theater, or seen people outside of our family in person. Despite the pushback from family and friends, my husband and I decided to see only people who are vaccinated, mostly outside and while still maintaining physical distance. Some people have totally understood why we’ve been so careful others have critiqued us for “not living life and being scared.” While I understand their position, I’ve done a lot of work my entire life to SURVIVE so while COVID-19 may be “mild” for most people, having advanced lung disease and other health issues mean I need to be extra careful.
While I cannot estimate when life will go back to pre-pandemic “normal” — I absolutely LOVE the normal that we’ve created!
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