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Surviving a pandemic with a rare chronic illness.

by Daniel Toth 12 days ago in humanity

Enrique Iglesias, Catherine O'Hara, Donny Osmond and me. We have one thing in common.

Surviving a pandemic with a rare chronic illness.
Photo by Hush Naidoo on Unsplash

COVID-19 shaped the whole world in the past year. Disregarding social class, age, gender, and ethnicity, it affected everyone. However, the pandemic life has been even more challenging for those of us who have severe health conditions. I have never been more grateful for my family and friends who have supported me through these challenging times.

Probably most people don’t know what either Situs Inversus Totalis or Kartagener's syndrome means, so let me tell you my story, shed some light to this rare condition and see how the pandemic affected my life.

A bright, sunny July afternoon, 1995.

I was born in a normal hospital to normal parents. My mum and dad are like any other parents; kind, loving and caring. Little did they know how much their everyday life will change very soon…

When I was three-days-old, I developed a severe case of pneumonia which left me bound to a hospital bed for more than two weeks. Three months after I was released, our GP (General Practitioner) told my parents to get my lungs checked to see if the pneumonia has completely gone so we know for sure whether it caused any long-term consequences or not. Taking her advice, we went back to the hospital where the nurses took my 50-centimeter-long toddler body to the X-Ray machine to check my chest. As my parents waited for the results with me in their arms, one of the nurses came up to them. Although my mum didn’t notice, she was very frightened. She ended up telling my mother that she’d need to do another x-ray, trying to cover up that something was wrong by saying that the previous one was “unsuccessful”.

They took me to the medical sonographer after the second x-ray while my parents were waiting for me outside. Both my mum and dad watched more and more doctors walk into the sonographer room with excitement on their faces.

When the doctors were done, I was handed back to my parents with my medical records and they left without saying a single word. You can imagine how confused my parents were. They looked through my record and all they saw was “Situs Inversus Totalis”. All medical terms, nothing in Hungarian. My mum called our GP immediately to get answers, but all she got as a response is to go see her as soon as possible.

My GP lived next door to us, so when we arrived, she came over with her husband - who is also a doctor -. They both scanned my chest with a stethoscope for a couple minutes. I’m an only child and unfortunately my mum had lost one before me, so I cannot imagine what went through my parents’ minds while waiting for the verdict from my GP.

When my GP finally finished, she turned to my parents and started smiling.

“What is it? What is happening to him?” My mum desperately asked her.

After she hummed a couple times, she finally told them that my heart was on my other side. Yes, you read it right, I am literally right-hearted. But on top of that, it’s not just my heart that is on the other side of my body, all my major organs are mirrored from their normal position.

Situs Inversus Totalis is a very rare condition, and in the past, it was mostly undiagnosed due to the lack of medical equipment. It’s so rare that only 1 in every 10,000 people have it. Most people experience no related health issues, so they can live a normal life. In some cases, a person can live most of their life without realising they have situs inversus.

However, in my case, Situs Inversus does affect my overall health. Of those born with this condition, 25% have Kartagener Syndrome (also known as Primary Ciliary Dyskinesia). It is a quite serious medical condition, as this means that the cilia in the respiratory tract are not functioning, making my lungs more exposed to smoke and disease. Hence, I cannot smoke and I have to be very careful in areas where the air pollution is very high.

Throughout the years, I had my ups and down with this special condition. When I was younger, I always marked this as a curse due to the medication I have to take. Now, I think this is one of the coolest “disorders” – if not the coolest – that someone can have.

Sometimes it feels like having some kind of a superpower. When I hug someone, I can say our hearts are exactly on top of each other. I like going to an x-ray, CT, MRI or an ECG scan, because when I tell the doctors and nurses that my organs are mirrored, they start screaming like those girls who are in the premier of Magic Mike XXL. It makes me feel special that I can bring this out of them without getting half naked.

After all these years, I made peace with my condition and I felt confident about it, but then COVID came and changed the game.

By engin akyurt on Unsplash

I lived in London, far away from my parents when the pandemic first hit. My mum – for obvious reasons – was extremely worried. I live abroad, far away from them, in a metropolis with a population as high as the total population of my home country, and where the cases were rising rapidly day by day. I was also working a receptionist job, meeting hundreds of people every day. So, working from home was not an option. Therefore, I ended up asking my workplace if I could go home on unpaid leave until the situation improves. Luckily, they agreed to it and put me on unpaid leave for 4 months so in a matter of a couple days I could move back home.

I had to terminate my tenancy agreement, pack everything I had and stored my stuff away with a storage company. It was a quite hectic 4 days, but I made it home successfully, knowing that I had 4 months of home-based quarantining ahead of me with my parents.

First, I was quite fine with it, as I could spend more time on things, I never really had the time for before. I started designing clothes, writing scripts, finished those games I set aside a long time ago etc.

I consider myself a very active person, I always try to make plans, go out with my friends, meet new people, so after the second month I started struggling and counting the days when my “home prison” will end.

4 months later, I finally went back to work. Filled with joy and energy, I started working again. It was strange at first, I think we all felt a little pressure not just from each other and the restrictions, but from our customers as well.

When the second wave hit London and the government announced their second lockdown, I was living with 5 flatmates, so I had to go home. Again. I felt a lot of frustration at first. “How many times will I have to do this?” I asked myself. I had no choice but to go along with it no matter how much I wanted to do the opposite.

I went home yet again, but this time around I didn’t terminate my contract and started working from home for a couple weeks, then I got furloughed until I got my vaccination. I was more prepared than the first time it happened. I came up with plans on how I wanted to spend my time at home, so I tried to be more prepared, so it’s woul not be as hard as it was for the first time. Writing stories and scripts takes most of my time now. This helps me regulate my emotions, clear up the negative thoughts and pushes me to always keep going.

You might be asking why I didn’t stay in London and why I risked getting infected on my way back home to Hungary. In London, I live with 5 flatmates who cannot work from home and have varying levels of how much they believe that COVID-19 is real. Whereas in Hungary both my parents are above the age of 65, with my dad having a chronic illness making him vulnerable to COVID as well, and they are both working from home, so the only time they go out is if they have to buy food or have to go to see the doctor.

It has been a tough ride to say the least, and I’m so grateful for both my friends and family who help me in so many ways. They help me stay on track and not lose my patience. My parents support me in every possible way. My grandmother and I go out for walks in the nearby woods every week where she tells me stories about her childhood and secrets I would have never imagined she would share with me.

As the pandemic became more severe, most of my friends reached out to me telling me that they were there for me if I needed anything. In the past year or so, they help me by regularly checking up on me via phone and video calls which makes me feel more connected to them. As I'm in my hometown, we even have the chance to meet and go for dog walks, even though some of them lived on the other side of the city! My best friend also decided to go old school and started writing hand-written letters to me about her daily life. We’ve been doing this for months now, and I’m enjoying it so much.

By Chang Duong on Unsplash

What keeps me going now is that the vaccine is so close, within reach. I can finally sense the end of the virus’ long-lasting reign and I am extremely hopeful that I shall be free from its grasp soon. Regardless how scary this pandemic is and how it affected all of our lives, I’m positive that we can start to live our normal lives soon.

Even though it is hard and we are all tired of it by now, I urge you to hold onto the hope you have left and hold onto it hard. It is the one thing we should all hold onto for a brighter future, a better tomorrow, and so we can share our love for everyone. If we stand together and hope, regardless of our beliefs we can survive everything no matter how long this will last.

humanity
Daniel Toth
Daniel Toth
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Daniel Toth

𝙰𝚖𝚊𝚝𝚎𝚞𝚛 𝚆𝚛𝚒𝚝𝚎𝚛 | 𝚆𝚘𝚛𝚕𝚍 𝚝𝚛𝚊𝚟𝚎𝚕𝚎𝚛 | 𝙵𝚘𝚘𝚍𝚒𝚎 | 𝙰𝚗𝚒𝚖𝚊𝚕 𝙻𝚘𝚟𝚎𝚛

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