The pain barrier: Aoife Moggan's hospital art
Aoife Moggan has spent most of her life in hospital; since she was diagnosed with a tumour at the age of 12 she has had 10 operations on her spine, and lives in constant pain. She talks to Donal Lynch about her life in the health system - and the extraordinary collection of photographs it inspired
Aoife Moggan feels uneasy when people tell her she looks great -it makes her wonder if they think she's in pain. But she does look great, younger than her 30 years - when she's wearing a hospital gown people have mistaken her for a child. And she is in constant pain, even if she bears it gracefully. As she sits smiling in front of me, her spine, she tells me, feels "like a pepper grinder". An extra cushion provides only slight relief.
Aoife has had an unusual life. Beginning when she was 12, she has undergone 10 spinal operations. The first few were an attempt to remove a rare and malignant tumour, which had wrapped itself around her spine. The subsequent operations dealt with complications that resulted from the original surgeries. It all had a profound effect on her life.
There were long stints in hospital and it all meant that she missed years of secondary school, never had a job and remained dependent on her parents - she still lives at home with them in Meath.
Throughout it all she kept a journal about the difficult situations that she found herself in.
Recently she also began taking some quite remarkable photographs that document her life in hospital and transmute the physical pain she feels into arresting pieces of art. The pieces combine clever visual puns, gallows humour and a distinctively feminine aesthetic.
So, for instance, we see her Marc Jacobs watch juxtaposed with her radiation armband, her make-up compact lurking incongruously inside a tray of drugs and medical paraphernalia, and her pain medication wrapped inside a sweet wrapper.
The images are Aoife's way of showing her spirit, even through the apparent sterility of her surroundings. She wore the bangles for the bone scan, for instance, to "try to feel like myself as much as I can when I am in hospital."
Recently the pictures caught the eye of Riverdance director John McColgan, who has become something of a mentor to her, and she has hopes of mounting an exhibition.
"I don't want pity," Aoife tells me. "People also throw around the word 'inspiring.' I really don't like that word, either. I am a normal person trying to do my best. That's what these pictures are about. I tried to combine my sense of humour and my sense of style with my own observations on what was happening. In a broader sense I also wanted to show that I am more than my illness. You learn so much in a hospital. Every day is a study in humanity."
She's had a great reaction to the pictures: "One girl, a film-maker who was in hospital, told me they inspire her to remain creative while she was being treated, which made me feel good."
Aoife's parents were both PE teachers and she was very physically active as a child, growing up in a household with two younger sisters. She was 12 when she began suffering from back pain. It seemed innocuous at first. Her GP thought it might be a pulled muscle but a family friend, a physiotherapist, suspected that the problem might be more sinister. Eventually Aoife was referred to a consultant.
"I was back in that building recently and it all came back to me," she tells me. "I remember being in the waiting room. For me, at that point, it was all going on in my head, and at times I doubted myself.
"The first thing the consultant said to me when I walked in was 'you don't look like you're in pain' and that really got my back up. Even now, if people say you look well I think, "do they think I'm faking it." ." I had the impression he was very much asking me, "are you a bit of a moan?"
Following a scan Aoife was sent forward for surgery but, at that tender age, she hardly grasped the enormity of what was about to happen to her, that her life as she and her family had envisaged it was about to be taken away.
"I can remember being in the hospital the night before my surgery and I don't remember being nervous. I was mainly happy that I had a discman; that had taken over my thoughts," she recalls, smiling. "That first surgery was 13 hours. We knew that whether the tumour was fast or slow-growing would mean the difference between life and death. The risk was that the tumour can change its DNA structure, so by cutting it out, it can actually make it fast growing. It was an astrocytoma, which is extremely rare."
Afterwards she could barely sleep or move.
"When I woke up, the thing that was the worst was not the pain but the thirst. They would dab a sponge on my tongue. I glossed over it in my head but only now, looking back on journals I kept, did I realise the amount of pain I was in. I think it made me stronger."
Two months later she was back in hospital. There were more surgeries on the spine. Each time the risk of paralysis was huge.
Emotionally, she didn't feel numb exactly, even though that was the word she used, having picked up the term from self-help books. "I actually used to feel more guilty for not feeling more grateful for surviving cancer," she tells me.
"It's a pressure that anyone who has a near-death experience goes through. You feel you should be living every day to the fullest but at the same time you're just a teenager, trying to have a normal life."
That proved to be quite a challenge. Aoife didn't do second or third year in school at all. She missed her Junior Cert entirely. "More than the academic work, or the feeling of getting on, I used to really miss the craic with friends. I'd ask them for anything that happened during the day. I actually wanted to do homework."
Throughout her times in hospital she would write journals, which chronicled her struggle and helped her retain a sense of self.
One her most heart-rending bids for normality was a trip to the Gaeltacht in Galway, where the big differences between herself and her friends became more apparent. "While I was there I was the hunchbacked ugly girl," she recalls.
"I had this horrible brace that I was supposed to wear and I'd leave the house in it and then take it off. In the Gaeltacht none of the boys would let me sit on their knee and I would just sit on the floor. In sport I just used to sit there and be the referee for basketball. I thought it didn't bother me as much as it did."
While in fifth year she had to have a big fusion on her spine - essentially the bones in the back are bonded together using metal. The pain following the procedure was blinding and over the last five years she has suffered serious withdrawal symptoms from the painkillers she was put on. "The methadone was the worst", she recalls.
"The physiological side [of the aftermath] was really horrible. It was like the fear you might get after a night of drinking, but multiplied by a million. I wouldn't be an anxious person by nature, but I'd just wake up in the morning with a sense of terrible foreboding that something bad was going to happen."
Other drugs were scary in their own ways too. "They gave me ketamine once and I started imagining things. I was convinced, for instance, that the pregnant nurse wanted me in her belly."
Unbelievably, Aoife still managed to get north of 500 points in her Leaving Cert and won a place in Maynooth, where she studied psychology.
"I think the bond with my friends really helped. We've had laughs in hospitals all over Dublin. They would have helped build my confidence a lot," she says.
"My time in 'the Shoebox', which was what we called our college house, was a time where I think I probably felt most healthy since my diagnosis", she adds.
"I was doing pretty well and I had so much fun with the girls I was with in the house. Even though we had many brilliant nights out, it was the hours spent drinking tea around the kitchen table that moulded those years and created such strong bonds."
She had to leave Maynooth after two and a half years, as her health deteriorated. "My boyfriend at the time even surprised me the night before my surgery with a tape. He had given the girls a dictaphone that they left in the middle of the table when they sat drinking tea and chatting, so I didn't miss everything."
It was another few years before she could resume her degree and by that time many of her friends had graduated. Nevertheless she looks back fondly on the whole experience. Aoife has a tattoo of a high heel in homage to her time in Maynooth.
She tells me that one of the most difficult aspects of her illness has been the guilt she felt at the amount of time her parents had to devote to caring for her.
"I mean, something like this affects the whole family, and it would have had a profound effect on my sisters growing up too. My parents just wanted more than anything to take the pain away. They'd take it themselves in a second if they could. Both of them have been phenomenal."
She shows me a document her father drew up when she was in her teens, reminding himself to accentuate the positive, not to gloss over the truth and to put what he understood of the ordeal she was going through into language that a young teenager could understand.
Re-reading his words she gets a little emotional.
Aoife has been in long-term relationships but she is single at the moment and she says that inevitably her ailments do come into her dating life. "I feel like I have to explain everything up front because my health has really shaped the course of my life - it's meant that I haven't worked, that I currently live at home, for instance. And of course it has a huge bearing on my day-to-day life, it affects how and when I can travel, for instance, so not everyone would be prepared to deal with that. But I would like to meet someone."
What about having children? "I had an ideal childhood myself, I was so grateful for what my parents gave me, and if I was to have kids, that's what I'd want to give them", she responds. "But I feel like things are difficult enough as it is. I imagine it would be difficult physically to carry a child around with my back the way it is. I've always felt I was a few steps behind my friends but that I got there in the end. But now everyone is starting to take big steps like getting engaged or settling down and I'm like 'oh sh*t, I need to get a move on.' I feel myself slipping further away from them." More than anything Aoife's odyssey feels like a triumph of the spirit; on the day we meet she is about to embark on a long-postponed trip to New York City, from whence she sends me little updates on her celeb-spotting and people-watching ("saw Baz Luhrmann at an adjoining table!"). She is now studying psychotherapy and hopes to bring her own unique life experience to bear in her new career. She also has high hopes for her photographs, which are expressions of her sense of self through all the pain and apparent bleakness of her youth.
"They're just a little piece of the world I've lived in," she says. "I don't show my scars off, but I am proud of them. And that too was partly the point of the photos. To show that, in the end, I'm more than the illness."