Singing in Beckett Choir has provided a vital support group for Cultural Studies and Humanities doctoral student, Fern Pullan, who has spent the past seven years battling the potentially fatal (if left untreated or misdiagnosed) and rare auto-immune illness, achalasia. To coincide with UK Disability History Month, Fern explains how music helped her through some dark times.
It was music that originally attracted Fern to the University to join Beckett Choir (then Leeds Met Sings). Music has helped her deal with the emotional and mental effects of achalasia, which causes a backup of food and drink to occur in the oesophagus when eating, resulting in chronic reflux and unexplained weight loss, and affects about one in 100,000 people.
Fern said: “Choir and music has been a constant through my whole illness.
“I have achalasia, which started with my hiccupping constantly in August 2011, then progressing through to continuous heartburn and eventually sudden reflux at every meal. By that Christmas, I could not even swallow water without reflux. It was impossible to take on board any nutrition at all. In that short space of time, I lost over three stone. I was hospitalised quite quickly with malnutrition and dehydration and diagnosed with achalasia.
“Music has always been a bit like a comfort blanket for me. I have loved music for as long as I can remember, but when I was younger it was the type of music most people my age didn’t know about or didn’t like. It made me quite unpopular!”
Fern’s particular love of classical music brought her into contact with the university when she was still at secondary school.
“I remember when I was about 14 and the university put a message out to all the local schools that they were putting on a really large scale performance of Handel’s Messiah with the Black Dyke Band and they wanted singers. No one else really knew about classical music at my school and my music teacher encouraged me to go.
“I loved it! I had been in a singing group at school, but it was my first experience of being in a proper choir and I then stayed in it all the way through to when I applied to the university to study BA English Literature. I did three or four events with that group.
“Because I like music so much, it’s nice to be in a space where you know what you’re doing and you know the people, and you can just have fun. There is a core group of staff singers who have been there since the beginning too. They have gone through the journey of achalasia with me, they have seen how ill I got and seen the trials. They have been a really supportive group.
“It was during the first semester of my MA that I became too ill for choir but because I’d done it for a while by then, I really missed having a space where it was alright to enjoy classical music, which I’d not really had before, and just forget about the stresses of academia and my health.
“I had life-saving surgery in February 2012 – it literally saved me from starving to death, as I could finally swallow liquids and then solids again. I returned to the choir after a recuperation period, and I loved it. It was so nice to have a place where you could forget all the rubbish about being ill and just go back to what you liked doing.
“Since diagnosis, it has been so up and down in terms of depression and anxiety about my illness. The regulations on my medication changed and without it, many of the symptoms increased in severity again. I developed agoraphobia and was scared to leave the house. I would get halfway to university and then turn round. Once I was in university, I was fine and I could cope, it was the getting here, because I was so convinced, I would be ill on the way here and have nothing to help.
“Achalasia is a really unpredictable condition. Sudden reflux is a major symptom, but one of the biggest for me is oesophageal spasms, which are just excruciating – they have been described as being on a par with a heart attack in terms of pain levels, and I have several every month. Sometimes I can have two or three a day, even, so it is hard to manage sometimes.
“I started seeing the wellbeing team here, and they were brilliant. We worked together for a year to 18 months, and they got me back to doing taxis - because buses by then were impossible for me. They advised me to return to choir. I knew I could do it because I’ve always done it. That really carried me through this period when there was no medication, no medical support.”
Fern speaks positively about the impact of the Choir and music as a support structure.
“Music has definitely got a therapeutic value.
“I’d recommend people in the university community to join Beckett Choir; different groups don’t always get the chance to mingle or integrate on a level where their status difference doesn’t matter.
“I love the Christmas concert, it is such a nice event. We’ve done it for around ten years and always have the support of the Phoenix Choir Band, who are an amazing group of people. The Christmas term is always our busiest term in the numbers of people who join, and everyone loves Christmas songs.
“We usually get several international students in this semester. They initially come to us because they want to make friends in a new city, and they bring different experiences to the Choir because of their countries’ different musical heritages, which are great additions for us.
“The Choir really caters for a broad range of musical tastes – we do a lot of classical music, but we also do show tunes, folk songs, traditional rounds, we’ve even done Adele, Beyoncé and John Legend before now.”
UK Disability History Month (UKDHM) runs from 22 November through to 22 December and this year the theme is Disability and Music. The awareness month aims to bring to life how people can express themselves through this creative medium, whatever their disability.