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Dublin: 7°C Sunday 29 November 2020

Opinion: 'Covid-19 is the world's biggest fear. Welcome to my world.' Diary of a man with Cystic Fibrosis

Trevor O’Sullivan documents his challenges as a person with CF during the Covid-19 crisis.

Trevor O'Sullivan

Physical distancing and isolation are difficult for everyone, bringing major challenges as well as fear over the Covid-19 virus. Some in isolation, the ones with ‘underlying health issues’ are more susceptible to the effects of the coronavirus and face a battle if they come into contact with Covid-19.

Today, we hear from a young man who lives with Cystic Fibrosis. Trevor O’Sullivan imposed his own ‘self-isolation’ well ahead of the rest of the country, to make sure he was safe and well. In those early days, he wrote a diary outlining the daily challenges for someone with CF during this crisis:

Self-isolation: Day 1. Pandemic

THE FIRST DAY I woke up to the news that Ireland was essentially going into lockdown. As a two-time liver transplant recipient with CF this was the moment I dreaded.

The World Health Organization declared Covid-19, the coronavirus a pandemic. This is a threat to my very existence. My fear is palpable. I am constantly aware of viruses and infection due to my anti-rejection drugs.

They suppress my immune system so I won’t reject the transplant. My kidneys are damaged due to the toxicity of that medication and my lungs are ravaged by CF. I am the perfect host for a novel virus which preys on the weak. This pathogen has no cure and no vaccine. 

Day 2. ‘Nature’s Vaccine’

As I write another number of cases of coronavirus have been announced in Ireland. In the UK there is a lot of talk about letting the virus run rampant to create herd immunity.

They’re calling what would be the death of thousands of elderly and sick people nature’s vaccine. Boris Johnson is telling people their loved ones will die. Darwin would be proud.

After the announcement of schools closing the Irish left their brains at home and indulged in mass panic buying. Older people are posting on Twitter that shelves are empty of essentials. Those who can’t go out are being told it will be days before certain items are replenished.

Day 3. The grim reality 

In Ireland, we have had the biggest daily rise in Covid-19 cases and another death. I was quite calm until I decided to listen to the phone-in with doctors on BBC radio in the UK. They spoke of a ratio of 300 people needing one intensive care bed.

The doctors spoke in grim tones of animal ventilators being adapted to use on humans. If the spike in cases is not brought under control their only treatment plan would be to make the dying as comfortable as possible.

Back home in Ireland, our latest health briefing had to warn younger adults as they are still blissfully ignorant and are filling pubs and restaurants. School playgrounds, it seems, have been closed to halt the spread of transmission, but not the playgrounds for the toddlers in their ’20s. 

Day 4. Growing isolation 

I won’t be able to see any of my nephews and nieces. I have one sister Denise but we have to remain apart. My young nephew Kian is watching too much Paw Patrol and is complaining to his Mum that his hands are sore from hand washing.

It must be an anxious time for parents everywhere. What are the appropriate words to explain this pandemic to a child? Laughter is a strong coping mechanism for me now. It’s a tonic of sorts in a crisis like this, and online memes and TikTok dances are a welcome distraction.

I’ve suffered all my life from worry. It was a totally natural reaction to an abnormal situation because as a child I vomited blood. This was the sign I had cirrhosis of the liver. The first liver transplant surgeon Thomas Starzl described this symptom in his autobiography by saying “there is no more terrifying sight in medicine than an ashen and panic-stricken patient, bleeding internally into the oesophagus and stomach and then vomiting his life’s blood onto the floor before anything can be done to help. Many patients do not survive the first such incident”. 

My teenage years were ravaged by liver disease and lung problems and in 1994 at the age of 20, I was assessed for a liver transplant. In May 1995 I became the 42nd person to undergo the operation in Ireland. It failed within months and I had a second transplant when I was mere hours from death. It took 17 hours and 5 operations to stem internal bleeding. Being close to death changes you forever and I find myself revisiting those emotions at this time. 

Day 5. The Invisible Enemy 

Does anyone feel like this is a movie and that all of a sudden Dustin Hoffman is going to find a cure? It’s surreal. It feels like we were more worried about the economy and that’s tanking anyway. Maybe if we had shut down earlier it wouldn’t feel so scary.

It feels like we humans have let the virus run rampant. What’s the old phrase? We shut the door after the horse had bolted. The New York Times wrote a powerful piece today about the situation in Italy. Newspapers are full of obituaries and people mourn alone due to the lockdown.

Military tanks stroll down the street carrying coffins like it’s a time of war. It is. But the enemy is invisible. And the fear of the unknown is the worst kind of fear. How can we fight something we cannot see? The transmission of a virus is insidious and the scientists are currently trying to play catch up to its stealth. 

Day 6. Only The Strong Survive 

I usually write this diary later in the day when all the news is in. But we know today will bring more cases and more deaths. One of my quirks is that I fall asleep listening to Talk Radio so any time I woke it was a constant discussion of Covid 19.

There’s no sport so my usual football phone-ins have been rendered obsolete. The bleak reality kicked in yesterday when Britain spoke about 12-week isolation for the vulnerable.

I think slowly society is beginning to wake up to the realisation that this is not going away anytime soon. The doubters are becoming believers. Of course, human nature will continue to reign and it can be flawed with stupidity, which right now is a lethal weapon. 

I was looking through my old pictures of holidays in America and wondering if one day I will be back in that New York State Of Mind. The one place where I truly feel alive. But normality seems so far away.

I’ve always believed a pandemic would be inevitable. This is the biggest health crisis since The Spanish Flu in 1918. Google it. It’s frightening. I’ve seen a lot of sensible talk about the effect this is going to have on mental health.

The psychological impact of this will be severe. Tactile has become a dirty word. We are all afraid of each other. Everyone is a threat. In terrorism, the fear factor is as important as the bomb. And right now worry can be just as toxic as the virus. The worry is that rather than bring us together this virus could divide us.

Day 7. A heightened sense of panic 

I’m struggling today and I’ve become more and more anxious. Honesty is the best policy and right now I’m not sugarcoating my fears. I’m spending too much time watching the news and on social media.

My attitude toward life has always been the ‘knowledge is power’ approach. But right now knowing so much engenders fear. I’m taking the pandemic seriously as this pathogen is a killer. But a lot of people are still in denial. I see the videos from Italy of people struggling to breathe in Italian intensive care units. I know their struggle. I’m constantly gasping for air and short of breath. I’ve been on a ventilator a few times and it was traumatic. Right now a respiratory illness is the world’s biggest fear. Welcome to my world – the life of a CF patient.

The rise in cases yesterday and the anxiety on George Lee’s face delivering the figures will hopefully wake up those still in denial. This is a defining moment for us a nation. The measure of a generation is how we cope in times like this and hopefully, history will document we dealt with this threat with that unique sense of Irish solidarity.

Day 8. The fear of a simple cough 

Last night the strong asthmatic component in my CF began to cause me some trouble. And today I have woken up not feeling too good and with a slight cough. This is usual and if it’s an infection it means two weeks in isolation in St Vincent’s Hospital. But my subconscious is thinking of something else. What if that visit to the shop by my Dad brought it into the house? I turn off the inner voice and start to post Elvis videos to my Facebook group. I’ve been to Graceland twice and Elvis music is quite important to me. As the only admin of 67,000 members, it’s a busy endeavour. 

A good form of escapism is my love of movies. Apart from the night, I decided to see Contagion. If this virus doesn’t scare you watching Kate Winslet talk about how many times on average we touch our faces and other objects will, it’s staggering. It’s become a trending movie online, naturally.

One good piece of news that has given me solace is that my beloved Liverpool are still on course to win the league when the season resumes. After thirty years of hurt, it would have been a bad dream if the season had been declared null and void. Bill Shankly once said football was a matter of life and death. It’s not. But it’s still a big part of life and normality seems so far away now. 

Day 9. How society reacts 

Just like the Clint Eastwood film The Good, The Bad and The Ugly this pandemic is showing up society in all its various forms. In Ireland, thousands of volunteers are signing up to help those who are isolated and vulnerable.

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Meanwhile, in America, spring breakers are breaking all the social distancing rules and in the UK everyone seems to be in denial. A pub owner of a popular pub chain has said there is no sign of virus transmission in his pubs. His miracle virus shield has not been used by the outside world but rumours have it President Trump has already been on the phone. In Italy, obituaries are filling the papers. Isn’t it ironic doncha think. They have closed 40 tube stations in London but the people who can’t work from home are now crowded together even closer.

Day 10. Reality strikes 

I think everyone is aware now how real this is so I’m not going to linger on the virus. These are anxious times. I’m so worried I’m wondering if I’m long enough post-transplant to stop taking immunosuppressant drugs to stop rejection. Having no immune system leaves me extraordinarily vulnerable.

I’m comfort-eating and my dog Lady is clever enough to sense the mood. She is great company in what feels like a wartime bunker. The picture of an empty Times Square today really awakened me as to how the world has changed. I was there many times and it feels like the centre of humanity. Today it feels like some grim epicentre of an apocalypse. I watched the film Mad Max Fury Road last night and their future looks less worrisome right now. 

Day 11. Letting Go 

Today has been the first day I’ve actually shut myself down. I didn’t spend my night and day on Twitter checking the latest updates. I wasn’t plugged in like a news junkie to the various news channels. Instead, I slept. But even in my dreams, the subconscious worry was present. I dreamt I ended up in a hospital and started screaming at the doctors to get me home as it was far too dangerous to be there as there was virus everywhere. When awake, I know for a fact that being inside is safer for me. 

I won’t repeat the advice everyone has been given, we know it by now. But I will say this. A cough or a sneeze right now can kill someone like me. I hope I have a lot more living to do on this second chance at life I have been given. And like my cinematic hero Rocky Balboa once said: “I don’t hear no bell”.

Trevor O’Sullivan has a degree in journalism from DCU, and tweets at @elvisrockysly. 

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