Cystic Fubrosis is not an illness not often portrayed in television and film, or spoken about in the mainstream media.
Lorena Levi is an artist who has cystic fibrosis however she is not defined by her disease, rather seeks to correct the misconceptions on the disease and address the reality of living with it.
What is cystic fibrosis?
There is exciting news in the pharmaceutical industry surrounding a new drug for cystic fibrosis sufferers. Can you tell us about this and what it means for you?
Lorena: The new drug is called Trikafta (Kaftrio in Europe) and in scientific terms, in its cellular level it’s correcting the defective proteins.
So for patients it means lung functions improve as well as gastrointestinal issues and enabling more salt to circulate. So reaching a better lung capacity therefore not coughing as much, having less of a tight chest and less sticky mucus. There isn’t as much salt transport in the body which means everything is drier inside. Stickiness and dryness also effects the gut. There isn’t a viscosity which can cause abdominal pain or blockages. Basically this medicine is improving quality of life more than any drug they’ve used and 90% of patients benefit. The cf community are saying it’s the biggest game changer for cystic fibrosis treatment.
How does your art explore your relationship with your condition?
My work looks at relationships with others around me or relationships with myself. I try to express the inward experiences I have with an illness and the duality of not necessarily seeing what is going on on the outside and the struggle inside (it’s often referred to as an invisible illness).
I’m also interested in the domestic and as I’ve had to be close to family through my life starting with treatment but obviously following in other ways, I’ve been looking at how our relationships develop with things going on at both larger perspectives as well as an intimate ones. Further into my work I’ve looked at other families and their relationships after knowing them or speaking to them about their own dynamics.
Lorena exclusively shares a short story titled ‘A lifesaver and a split’ documenting her reaction, emotion and sentiment over finding out the news about Trikafta.
Two consecutive pieces of news emerged where with both I felt almost nothing. England announced that a deal between Vertex and the NHS has been made for the drug Trikafta (Kaftrio in Europe) and that it would be available for patients within a month or so. The day after my parents, or rather my mother, announced their separation during a takeout Thai meal that I was gluttonous for but then swiftly put back in its Tupperware boxes to eat the next day. I guess that’s the extent my emotion got to, lack of appetite. Ironically it seemed that the illness Cystic Fibrosis was a large source of tension for my parents; a chronically ill child who needs almost constant care, growing up and doing things teenagers, young adults want to get up to that are far from ‘kosher’. Now that the news came that this medicine was a game changer, it appeared that other aspects of my life would be as well, quicker than I could have imagined.
My sister and I looked at each other as if to say ‘yeah not too surprised but at the same time, what the fuck?’ this wasn’t a new occurrence for my family and divorce has always been thrown around like a basketball, sometimes hitting one in the head to wake them up to this possible reality. I remember even laughing at the randomness of the conversation, we were talking about our intelligent friends and how we don’t think of any of them as stupid. My mother made the comment that some people are so smart but lose their direction in life, go down a path that didn’t suit them to turn into what they have become now; a bit of a professional failure. Later that night I couldn’t help thinking this was a direct reference to my father.
When I heard about Kaftrio I had just completed another level of ‘Property brothers’ the game, feeling mind numbingly dead but exhilarated by the win. Having to take a break from my accomplishment I checked Instagram – this lockdown has helped me lead a life completely off screens! A CF blogger posted a photo of herself smiling with her arms up in the air, a clear whoopee look at this piece of good news that’s going to make you obliged to like and comment. There was a spiel about her new life now that the NHS signed the deal, plethora’s of how she was now going to live forever, get married and have children with her boyfriend, for me those seem like big certainties for a twenty- year-old, but I digress. With all of her words came pieces of emotional moments woven in ‘I’ve cried all day, my life is officially starting, I’ll be crying for the rest of the day so excuse my puffiness’. For me the crux of the information seemed too good to be true, especially as I couldn’t see any other posts from the CF trust UK or even google mentions. After a ten to twenty minute wait it all started showing its face, alerts in yellow. I smiled and yes, that was the range of my emotion.
My father was the only one home then and he was more excited than me, I feel this is natural, but I truly had nothing else to say or think. How could I? Because this was something so inconceivable, something constantly addressed as one day it will come. Maybe I have a very limited scale of emotions, even though I’ve regarded myself and others in turn as sensitive. I feel that realisation and acknowledgment of change, indeed newness can come once it’s started happening. Personally, like the announcement of the separation, I would only be able to invite my true emotions when I start seeing its impact on me and the people closest to me. That goes with talking with friends, I can talk matter of fact ‘this new drug is here, it’s so crazy that its happened this fast’ but I can’t go into my actual thoughts on the matter; ‘am I going to have a different relationship with my parents now, is my body going to be unrecognisable, are my new friends and fantastically hot, clever, funny, romantic, nice hands boyfriend going to get the difference between my past and now?’
New directions are often scary, be it good or bad. I mean with the Thai takeout conversation one of the first thoughts I had was about them finding new significant others and how happy it could make them. The next was my dad always wanted to downsize soooo. Our initial emotions aren’t the ones that carry through the whole of the event. These feelings will change I’m sure, pain will enter, joy will peak in and stay a while longer but there doesn’t need to be a set rule book for how we feel about certain things. The guarantee of a new life is not necessarily a miraculous jubilation culminating in tears of pure hope and exultation, because firstly how much of life can be a guarantee and secondly, when all I’ve known in my time is one thing, the realisation and acceptance of it’s happening can’t start until its happened. Finally, an expectation of an emotion should fain to exist, and getting confused by our own reactions to events is natural, whether it be a life saver or a split.
