Trevor O’Sullivan, who lives in Ireland, has cystic fibrosis (CF). He has undergone two liver transplants. He was the 42nd person in the country to have this surgery. Unfortunately, the first transplant failed and in a few months he had to have another. He’s been on a ventilator multiple times. He’s felt what COVID-19 patients all over the world are feeling.
As soon as the news of COVID-19 spread, he put himself in self-isolation. This was long before anyone told him he had to. He knew he had to for his own well being.
“Right now a respiratory illness is the world’s biggest fear. Welcome to my world – the life of a CF patient.”
During this time he has kept a diary of his thoughts, feelings, and emotions. You can read some of the full entries here.
Below are some of the big takeaways from his writings. They are emotions that all in the cystic fibrosis community, and most who have any rare disease, are bound to relate to.
“This is a threat to my very existence.”
Living with CF, Trevor has to be always aware of the threat of infection. This is because he has to take immunosuppressive drugs in order for his body to not reject his liver transplant. These drugs have already harmed kidneys. With this side effect and the fact that his lungs are already weak, he knows he’s at a high risk for a severe case of the coronavirus should he contract it.
Trevor describes the panic he has seen envelope his nation, with people panic buying at the grocery stores and stocking up on toilet paper as if having extra bathroom products will make them less susceptible for illness. He says the whole thing feels surreal.
He sees people who are more worried about the economic ruin the pandemic could create than the virus itself.
He says it feels as if it’s a time of war. The fear is palpable, and the enemy is invisible.
Trevor writes that he feels that people aren’t acting as they should. There’s teenagers running around as if the virus doesn’t exist.
He’s heard people in the UK talk about just letting the virus run its course, spread, and create herd immunity. He doesn’t understand how people don’t realize how many lives could be lost that way. Nature’s vaccine would not save the immunocompromised.
Trevor, like all of us, hates being in isolation. He writes about how difficult it is to not see his nieces, nephews, or his sister.
But this will pass, and we will see our loved ones again.
Trevor writes about how he sees people trying to calm the anxieties of not only themselves but of their children. He speaks of laughter as the strongest of coping mechanisms.
He tries to distract himself with memes, watching TikToks, posting videos to his Facebook page, watching movies which he loves, and keeping up with sports.
Trevor also talks about the process of acceptance. He knows that this isn’t going away soon. Nor is isolation. He is slowly seeing people who doubted the realities of this virus become believers. For those who still don’t believe, he says stupidity is a lethal weapon.
Trevor looks forward to a return to normalcy, although he knows it won’t be coming soon. He dreams of vacationing in New York City, one of his favorite places.
He’s working on spending less time watching the news and instead focusing on hope.
You can read more about Trevor’s thoughts on this experience here.