\n<\/p>\n
Y<\/span>vonne Hughes was 19, and attending the funeral of a friend with cystic fibrosis, when she realised: \u201cOh shit, I\u2019m going to die of this.\u201d She had met him during shared hospital stays in childhood, and although Hughes had always known she had CF, she had never understood her illness as terminal until that day in 1992, when she stood at the back of the crowded chapel <\/strong>in Glasgow. For three days afterwards, she couldn\u2019t stop crying. \u201cI had a kind of meltdown. That\u2019s probably the first time I thought that this thing I had was going to kill me.\u201d<\/p>\n Over the next few months, Hughes, who was studying at the University of Glasgow, listened to her mum, dad and older sister chatting during family meals as if she was a ghost at the table. \u201cI pulled back from them. I deliberately didn\u2019t talk or include myself,\u201d she says. \u201cI wanted them to get used to sitting and chatting without me, so that when I died, they wouldn\u2019t notice I wasn\u2019t there.\u201d<\/p>\n It\u2019s a harrowing responsibility for a teenager to take, but self-erasure must have felt like a way to pre-empt death, perhaps to resist it. When she was growing up, cystic fibrosis was considered \u201ca childhood disease\u201d \u2013 because about half of those diagnosed did not survive their teens. A genetic condition in which the body creates thick, sticky mucus, it makes digestion difficult, damages lung function and can lead to respiratory failure. It affects about 160,000 people globally.<\/p>\n Now 52, and enjoying what she calls a \u201csecond chance\u201d at life more than 30 years later, Hughes has emerged as a comedian. We are speaking on a video call before her one-hour show, Absolutely Riddled, which she is performing at the Edinburgh fringe, based on her experiences of living with the condition. \u201cI want to be true to myself and my story,\u201d she says. Why does she think she survived when so many didn\u2019t?<\/p>\n <\/span>\u2018My mum said: \u201cWe thought you were going to die, every day\u201d\u2019 \u2026 Hughes, far right, with her hospital friends on a day trip in 1984. <\/span> Photograph: Jeremy Sutton-Hibbert\/The Guardian<\/p>\n For most of her childhood, Hughes, who works as a community development worker in Renfrewshire, didn\u2019t regard herself as struggling for survival. Her parents didn\u2019t sit her down in childhood to explain her illness; she had been diagnosed at six weeks old. But there were hospital visits and tablets and eating often made her vomit. Gradually, she says, she \u201cput together those two words, cystic and fibrosis, with something that I had\u201d.<\/p>\n At school, she kept her illness hidden, taking her medication at home. She was popular; joined the Brownies, then Guides. \u201cI\u2019m a very level-headed person, but I keep a lot in my mind. I remember when I was younger thinking: \u2018There\u2019s no point telling people about this because everyone is dealing with something. I\u2019m nothing special.\u2019 I just got on with it.\u201d<\/p>\n Roughly one in every 2,500 people are born with cystic fibrosis in the UK, Australia and the US. Hughes\u2019s older sister does not have the illness and the family had no idea what it meant for their lives, or for Hughes herself.<\/p>\n Only as she grew older did Hughes build a sense of the precariousness of her life. \u201cMy mum said to me: \u2018We thought you were going to die, every day. We just didn\u2019t know.\u2019 It became their new normal to keep me alive.\u201d<\/p>\n If she got a chest infection, pleurisy or pneumonia, she would go into hospital, and over the years made friends on the CF ward, a fragile community. When the curtains were closed around a bed for a long time, Hughes and the other children knew not to go past. She reasoned with herself, to allay her fears: \u201cPeople were dying around me but I put it down to: \u2018Maybe they had a really bad infection, maybe they were worse than me.\u2019\u201d In childhood, she developed \u201ca lot of level-headed thought processes around why those people died\u201d.<\/p>\n <\/span>\u2018I thought there was no point telling people because everyone was dealing with something. I was nothing special.\u2019<\/span> Photograph: Jeremy Sutton-Hibbert\/The Guardian<\/p>\n She found solace in the Cystic Fibrosis Trust magazine, and dreamed of attending one of the advertised camps. \u201cLuckily, I didn\u2019t,\u201d she says, because in the early 1990s, scientists discovered that the camps were a hotbed for the spread of bacteria, present in the lungs and phlegm of children with CF. Many cross-infected each other, some with fatal consequences.<\/p>\n Did Hughes struggle to accept that sense of herself, as both vulnerable and a threat? \u201cAbsolutely,\u201d she says. Hospitals implemented a policy of segregation, according to bacteria carried. Hughes has the pseudomonas bacteria, and after her friend\u2019s funeral in 1992, she stopped seeing people with cystic fibrosis in case they had different bacteria or bugs that might lead to cross-infection.<\/p>\n She has stayed in touch by phone with one old friend. \u201cWe shared growing up in the hospital ward and I do love speaking to him.\u201d But after that funeral, \u201cI became reckless,\u201d she says. \u201cI thought: \u2018Well, life\u2019s for living. I\u2019m just going to do what I want.\u2019 I didn\u2019t care very much for myself. I thought: \u2018What\u2019s the point?\u2019 I spiralled.\u201d<\/p>\n Her 20s and 30s passed in a blur of \u201cfestivals, partying, travelling when I could, flying by the seat of my pants \u2026 \u201d She had hoped to meet someone, and to have children. \u201cI thought it would happen. And it never did.\u201d In her 30s, her lung function got so low \u2013 45%, then 36% \u2013 that she wouldn\u2019t have been able to sustain a pregnancy anyway. \u201cThat was something I tried to grieve. But over the course of a year, I thought: \u2018I\u2019d rather be alive.\u2019 My mantra became: \u2018I\u2019d rather have a full and short life than a long and unhappy one.\u2019 These kinds of philosophical things got me through.\u201d<\/p>\n Hughes doesn\u2019t have a mantra now \u2013 \u201cother than trying to be funny\u201d. The frequency of her performances range from three times a week to every few weeks, depending on her health needs. But even in her reckless phase, she embodied a stoicism, too. She worked throughout \u2013 at a call centre, a radio station, the CF Trust. \u201cI just had to keep going, pay my bills and mortgage.\u201d<\/p>\n Did she ever wonder: \u201cWhy me?\u201d She has had years of spitting out and swallowing mucus \u2013 \u201cconstant, constant\u201d \u2013 hankies everywhere, non-stop sterilising of stuff, endless medication and pain, unable to take the next breath for granted. As a child, when she went into hospital, there was a faint sense of privilege at being given Lucozade and new slippers, things her sister didn\u2019t get. But no one else in her family has the illness. Didn\u2019t she feel aggrieved?<\/p>\n \u201cIt\u2019s a difficult question,\u201d she says. \u201cI\u2019ve thought about \u2018Why me?\u2019 in a positive sense \u2013 that it was me because I could handle it. Or, I\u2019m glad \u2026 because this has made me the way I am.\u201d She has also thought, \u201cWhy at all? Why did cystic fibrosis come into being? Why have this weird disease that just kind of ruins lives?\u201d<\/p>\n <\/span>\u2018I just got on with it.\u2019<\/span> Photograph: Yvonne Hughes\/PA<\/p>\n While Hughes survived childhood by reminding herself that she wasn\u2019t special, the differences between her life and others\u2019 sharpened as she entered her 40s. She became an aunt, and bore close witness to her peers\u2019 life transitions while she kept on being \u201cjust Yvonne \u2013 the one that never reached any potential\u201d.<\/p>\n \u201cI couldn\u2019t have a career because I would always get ill. I never moved social class. I always remained working class.\u201d Her dad was a welder, her mother a GP receptionist. \u201cEverything I did, I did myself. But it was day by day, week by week. There was never a plan. I always felt I could never get ahead of myself.\u201d<\/p>\n In 2018, aged 45, with deteriorating health, Hughes took redundancy from her job as public affairs officer at the CF Trust. <\/strong>Eating was difficult. Her weight hovered around 7 stone. She braced herself for the possibility of a lung transplant, but as her lung capacity dropped to 30%, she was deemed too ill for the waiting list. \u201cI was like: \u2018OK, that door\u2019s closed. At this point, there isn\u2019t anything else on the horizon to keep me alive.\u2019\u201d She completed an end-of-life form, and met the palliative care team. She thought: \u201cI\u2019ll see my days out with my parents, make memories and know I did well to get to 48.\u201d<\/p>\n Then, in 2020, the UK government granted access to a new drug, Kaftrio. Hughes had read about its worldwide trials. When the delivery driver knocked on the door, she told him: \u201cYou\u2019re going to save my life.\u201d At that point, her lung function was down to 26%.<\/p>\n Within an hour or two of the first tablet, she started coughing. \u201cThey call it the purge,\u201d she says. There was so much mucus \u2013 dark, watery and horribly fascinating \u2013 she captured it in a cup, put a lid on it, and stowed it in a drawer in her bedroom. \u201cI kept that cup for a long time,\u201d she says. Maybe she already knew it was a relic.<\/p>\n The Kaftrio turned Hughes\u2019s life \u201ca whole 180, literally overnight\u201d. There are side-effects \u2013 insomnia, weight gain, which have brought other challenges \u2013 but before long, she says, \u201cI could breathe again without coughing. I went back to work within the year. I could run, I could dance, I could speak, I could stand up straight and cook. I used to always be bent over, catching my breath. And then all of a sudden that was gone. It was a miracle.\u201d<\/p>\n Energised, she decided to enrol in an evening course. Acrylic painting, maybe, or playing the keyboard? But at the University of Strathclyde\u2019s Centre for Lifelong Learning, it was the flyer for comedy that caught her eye. \u201cI had always loved going to gigs. Something clicked and I enrolled.\u201d<\/p>\n She performed a five-minute set for the course finale \u2013 and immediately wanted to do it again. \u201cI started applying for clubs, Monkey Barrel and the Stand Comedy Club [both in Edinburgh]. I got Red Raw [the Stand\u2019s beginners\u2019 slot] and went from there. I want to change my life,\u201d she says, \u201cand I am doing comedy to see if I can<\/em> change my life.\u201d<\/p>\n <\/span>\u2018Comedy was the one thing that was for me\u2019 \u2026 Hughes performing at Monkey Barrel, Edinburgh.<\/span> Photograph: Yvonne Hughes\/PA<\/p>\n Nearly four years ago, Hughes met her partner, Alan, online. Having spent a lifetime feeling unable \u201cto rely on a future\u201d, she has had to learn to picture one \u2013 and to override her old instinct to absent herself to mitigate later losses. Sometimes, this means catching herself in the act of \u201cpulling back\u201d from Alan, and letting the pleasure she takes in his company teach her to quiet her mind.<\/p>\n Life now is so different, it requires a conscious effort to remember how hard it was from one moment to the next. \u201cI used to breathe so shallowly that I had to take a \u2013 haa!<\/em> \u2013 sharp intake of breath \u2013 to feel I was breathing,\u201d she says. The sound punctuated even the simplest actions \u2013 after getting into a car, for instance, after reaching for her seatbelt, after pulling it across her, after fastening it.<\/p>\n \u201cNow I can get in the car, pull the seatbelt over and go. I can walk and talk. I can laugh without wetting myself or going into a convulsion of coughing, pulling a muscle or breaking a rib,\u201d she says. \u201cIt is a horrible, horrible disease. It suffocates you. It takes every inch of your breath away. And now it is something I can live with and not die from. I\u2019ll probably live to get my pension.\u201d<\/p>\n Comedy has brought \u201cfun, joy and laughter\u201d back into Hughes\u2019s life. But it has also given her something that nothing else has. \u201cI had never found anything for me in my life. I\u2019d never married. I had no children. So I had no community. Nothing,\u201d she says. \u201cThere were people getting their careers and their lives sorted. Comedy was the one thing that was for me. And it still is. Just for me.\u201d<\/p>\n Yvonne Hughes: Absolutely Riddled is at Snug at Gilded Balloon Patter House, Edinburgh, until 15 August<\/p>\n","protected":false},"excerpt":{"rendered":" Yvonne Hughes was 19, and attending the funeral of a friend with cystic fibrosis, when she realised: \u201cOh shit, I\u2019m going to die of this.\u201d She had met him during shared hospital stays in childhood, and although Hughes had always known she had CF, she had never understood her illness as terminal until that day<\/p>\n","protected":false},"author":1,"featured_media":13071,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[51],"tags":[6768,4391,5432,578,337,4243,3837,891,6769],"class_list":{"0":"post-13070","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-childhood","9":"tag-disease","10":"tag-finally","11":"tag-hospital","12":"tag-life","13":"tag-realised","14":"tag-spent","15":"tag-style","16":"tag-terminal"},"_links":{"self":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/13070","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=13070"}],"version-history":[{"count":0,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/13070\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/media\/13071"}],"wp:attachment":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=13070"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=13070"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=13070"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}