To Endure is to Conquer: Saying Goodbye to Aileen

On March 18th, 2015, a close friend of mine passed away after 25 years of illness and pain. Her sense of humour remained, to the end, incorruptible. This is my recollection of her in some of the best and worst moments of the time we spent together.

—–

“The sun rises in spite of everything
and the far cities are beautiful and bright.
I lie here in a riot of sunlight
watching the day break and the clouds flying.
Everything is going to be all right.”

— from Everything Is Going to be All Right, by Derek Mahon

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It’s uncommon to remember exactly how you met someone. Sometimes, we remember specific meetings because they’re unusual or because we come to love the person we’ve met.

Meeting people for the first time often falls into the background; irrelevant in many ways, once the moment has passed. The ones you remember are rare and they are special.


I met Aileen at a screening of Harry Potter on a school trip in Winter 2002.

Taking my seat in a row near the back, I somehow got talking to the girl sitting directly in front of me. She said I seemed familiar to her, and I said I had the same feeling. We spent a few minutes going back and forth, trying to work out if we had mutual friends, acquaintances or experience. We never worked it out. I’m not a big believer in fate- but maybe there’s something to it. Maybe she was just destined to end up in my life and I in hers. Who knows?

From that day on, Aileen would migrate from her classroom to mine for lunch. She was, first and foremost, a shock to the system. At times it was awkward to talk with her because she was so upfront and honest about her experiences. Her life was a pottered history of discomfort and pain- I had nothing to compare it to.

Aileen was diagnosed with a brain tumour at eight months and wasn’t expected to survive- but she did. There was a reoccurrence before she turned 10 and, suffering the chemotherapy to defy the odds, she made it. These huge truths were among she first things she told me, a naïve and innocent child of 12.

The idea of a young person being so ill startled me. I could never work out how she was pretty much always in a good mood when it seemed to me she was dealt a hard hand. It would take me years to work out what she and Churchill already knew: to endure is to conquer.


Once Aileen decided you were her friend, you didn’t really have a whole lot of choice in the matter. She was polite and friendly to everyone- but her genuine friendship and loyalty was a gift to the few and not the many.

Aileen was quick to laugh, easy to wind up and loud as hell. It took us a while to build a group of friends, but we managed it, all of us different and trying to claw our way into being teenagers without dying of embarrassment along the way.

Through the first three years of school, Aileen and I were separated in different classes, rarely sharing lesson time. But early in the morning, she would be among the first to school for gossip and was ever present at lunch times.

Perhaps the funniest and most frustrating thing about Aileen was her devilish love of the fabled purple snack. Early in the morning, Aileen would cajole other students to go to the shop and purchase a small number of purple snacks for her. Not the pink ones, not the yellow ones- just the purple. She had a group of people essentially lined up to do her bidding and she knew exactly where to find them at 8.30am. From what I remember, nobody ever turned her down.

It was frustrating because Aileen had significant health concerns- we pointed out to her that it probably wasn’t good for her. She didn’t care: her love affair with purple snacks was simply all-consuming.

Needless to say, given her history with a brain tumour, Aileen’s head was a constant risk: accidental whacks to the head simply weren’t an option. To her delight, this meant she couldn’t participate in PE. I think now that Aileen would have been great craic on a sports field, given her sense of humour, but at the time I was busy trying to skive off PE myself and didn’t think about it. I firmly believe her ferocity would have led her to great success in women’s rugby.

In one particularly memorable incident when she was about 14, Aileen was sitting quietly in her classroom during a short break, when a blackboard duster flew through the window without warning and clocked her on the head. Enraged, she roared about it at length but no culprit could be identified. It seemed unlikely to be deliberate- but I think it scared her a little. It scared us all a little. Years later, when it came up in conversation, she remained grudging about it. “I’d kill whoever did that if I knew who it was!” she’d rage, only half joking.

During the summer, Aileen would spend time with her family in Annascaul (which she claimed doggedly to hate, but all her grouching seemed to be in the spirit of affection), or at Barretstown, a summer camp for children who had experienced illness. She would come back laden down with photographs and stories. Each Halloween we would dress up and party. I’ll always remember the day Katie showed up to my house wearing a green rain jacket: Aileen was the only person to realise she was a Teenage Mutant Ninja Turtle. Aileen was also the only person to value this shoddy costume effort, reassuring Katie that at the very least, it had given everyone a good laugh.


In Transition Year, Aileen and I were placed in the same class. She came into school one day and broke bad news: the tumour was back. She would have to undergo chemotherapy and radiotherapy this time. She must have been scared, but she never said that. She preferred to own her problems with sassy attitude- annoyed, not that she was sick, but that she would be temporarily separated from her friends.

Bravery was written, in indelible ink in every strand of her DNA. She positively vibrated with courage. But still, we were a little too young to comprehend the scope of her illness. We didn’t really talk about the tumour. Had I known then what I know now, I would have asked her so many questions- but perhaps it was for the best that we never did. We didn’t know enough to treat her differently. She was just another one of us.

She refused to give up school for medical necessity; absent for a few months, she made it through the chemo and radiotherapy. During that absence, we barely saw her. I’m pretty sure Aileen’s parents didn’t want us to experience too much of the difficult parts. Aileen came back smiling. We didn’t know enough to be relieved.


Aileen had a heart of gold. When we were 17, in fifth year, she was recounting the story of the flying blackboard duster to our now bigger, broader range of friends. Sarah pulled me aside and explained, haltingly, that she was the one who had thrown the duster through the window, some three years previously. She had never known it had hit Aileen.

She had been smoking with others down the back of the school building, she explained. The duster was a dupe- if a teacher came to investigate the smoke, the duster was an explanation of sorts. When a teacher did approach, they all legged it and Sarah, seeking plausible deniability, threw the duster through a window. Sarah decided to tell Aileen and face the fury.

Aileen heard the story, took one look at Sarah’s humiliated face and broke into a laugh, telling her there was no harm done. Forgiveness is pure and sweet: Sarah watched out for Aileen from that point to the end of secondary school.


After the Leaving Cert, a small group of us volunteered at Lourdes. I preface this story by saying that I’m not religious now, nor was I then. But Lucy, Danielle, Katie and I decided to volunteer instead of going to Ibiza or wherever the cool kids were going (we were and arguably remain, desperately uncool). We went because of Aileen. She had been there, she was faithful, she said it helped her and we wanted to help people like her. Done deal.

Sarah led the fundraising effort and that summer, we endured ten days of rosaries, heat rash, endless dish washing, wheelchair pushing and, needless to say, mass. There was always mass, never a day without it. I even knew the prayers by the end of the thing. When we got back, after I told Aileen some of the highlights, she said she was surprised we hadn’t been arrested for disturbing the peace.


Our group split and headed in different directions for college, for work, to take on life. I stayed in Cork and attended UCC while Aileen went to CIT where she made a small group of friends who took care of her and watched out for her and helped her. Wherever they are, I hope they know how much they added to her life. I regret that I never got to know them properly.

Aileen’s eyesight began to fail. In her time at CIT, a mutual friend would tell me Aileen would often pass her in the corridors and ignore her. Aileen effectively had tunnel vision at that point.

“Does she not like me?” I was asked.

“She can’t see you unless you’re right in front of her. It’s not that she doesn’t want to see you. She just can’t.”

Against all the odds, as her eyesight faded still more, Aileen completed her degree programme and graduated.

She got a cane, which she roundly hated. In true Aileen spirit though, she sometimes put it to very effective use. Not long after she had started using it, I took her on a trip to Dublin to see Coldplay in Phoenix Park. By that time, Aileen, despite her huge sense of independence, needed care. I’m sure her parents were nervous of her friends taking her on trips, but I’m glad they trusted us.

At the concert, she used the cane to shove people out of her way. “Comin’ through!” she said loudly, butting past people, as I followed, giggling. She was never one to do things on someone else’s terms- I loved that about her. The crowd parted for her like the Red Sea.

Among her other great musical loves was U2. I mocked her endlessly about this but she wasn’t to be swayed. During one of her stints in hospital as a teenager, she had met The Edge, who gifted the entire ward VIP tickets to a U2 concert in Dublin. I believe it was one of Aileen’s favourite memories and she talked about it for years afterwards. If ever I meet The Edge, I’ll throw my arms around him, thank him, and tell him that his act of kindness brought her joy that extended into years.

There were other moments too, when her life was made richer by the generosity of others. Aileen was a fan of rugby, possibly the only sport she ever took an interest in (I’m sure it had nothing to do with the burly men). During a birthday dinner for her in Luigi Malone’s in Cork, she became aggravated that her mother kept phoning to know where in the restaurant she was sitting. “Why does it matter?” she asked crossly. I will never forget the way her mouth fell open when Peter Stringer walked across the restaurant to surprise her with a hug and a photo. He probably wouldn’t remember it- but I do, and she did, to the end.


Aileen liked to collect memories. The concert, the trips Sonja took her on, the outings with Aoife and the intensely silly things Katie would do. I knew she kept scrapbooks, but I never saw them. I didn’t know that she kept, cut and filed endless photos, writing memories down, decorating those memories with stickers.

As we all pushed through the first few years out of school, I would receive calls and texts to tell me that Aileen was in hospital. Somehow, many of that school group were still in touch and a small group remained loyal and invested in Aileen. We would show up to see her, chatting to her in hospital beds, keeping her mood up, making her laugh.

I can’t put my finger on when, but I recall one particular message saying Aileen was sick- very sick.

And when I went to see her with friends, it was clear that she wasn’t doing well. The protective atmosphere of Aileen’s parents started to fade: we saw Aileen in her sickest and worst moments from that point on.

When things seemed bad, approaching terminal, I remember sitting with Katie in a 24 hour café in Cork. We attempted to come to terms with the fact that Aileen was potentially not going to be around much longer. It was a cold, turgid, dank few hours- though the hours she passed were infinitely worse. We finally started to realise what bravery really meant- and we knew we didn’t have it like Aileen did. On that occasion, she somehow rallied and recovered, but I have never gone back to that café.


During another one of those hospital stays, Aileen’s sight went entirely.

Her greatest love was art and it must have torn her soul apart to be separated from it so totally. When I first got to know her, her bedroom was at the top floor of her parents’ house in Ballinlough. The walls were painted with bubbles. She made cards by hand for her friends on birthdays and at Christmas. ‘APCards’ would be inscribed at the back. She poured her heart into them.

Losing her sight was a huge blow to her independence as well as her perspective on life. Her mother told me privately one night in the hospital that Aileen had descended into tears that day, screaming and roaring about the situation. Aileen never mentioned that to her friends: she was too stubbornly courageous to let us see her in that kind of agony.

During those early days when she was rendered effectively entirely blind, we saw a lot of her and would ask if there was any improvement- but there never was. She told me she couldn’t even see shadows, or light. It was all gone. Those were the only times her face would fall. It was an impossible burden- but even then she didn’t let it defeat her. In later times, she would make me describe my tattoos to her, forever interested in art even though she couldn’t see it.

After University, I worked in Cork for a time and then made the move to Dublin in 2013. A symptom of the economic collapse in Ireland, most of our friends left the city and spread out across the world. As it happened, I was one of the last to leave Cork.

Every three weeks or so, I would return to meet Aileen and bring her to town, to lunch, or hang out with her in her parent’s house. I can remember many of those trips, helping her pick out jewellery and socks, taking her to lunch and guiding her through the meal. Her parents would always thank me at the end of those days, but I have no idea what they were thankful for. We were good to her, they said. Well, she was good to us.

Texting her was tricky because of her sight struggle, so it was hard to keep up with her on a daily basis. The face-to-face interactions were the best. She would talk about old tv shows, old games, old films. The Button Factory was one of her favourite books and a mention of Bosco would have her nostalgic for hours.

Her stints in hospital became more frequent. It seemed that she was always most severely ill in winter. We never were able to have a big Christmas celebration when all our friends were home- because inevitably, Aileen would be sick. I know there were times when she wouldn’t remember Christmas at all.

It was evident that her health was failing permanently. Her memory became increasingly poor and she would often give out to me for not visiting- though I always did. It broke my heart when she thought I wasn’t there but I never corrected her. It was better to have her think I hadn’t been there, than to have her think there was something wrong with her.

Every now and then we wouldn’t hear from her for a longer period of days and her parents would get in touch to say she was hospitalised, again. No longer a child and clearly very frail, Aileen was roomed with elderly patients. Again, her attitude prevailed; instead of complaining about the devastating hand she was dealt, she gave out that the chap next to her would snore too loudly. Often, that chap would be awake and quite alert when she was giving out about him. Those moments made me laugh and cry all at once.


In January 2015, Aileen was taken severely ill. I was in work in Dublin and had to settle for phone calls with her and texts from her Mom keeping me updated. When she was released from hospital, I visited her at home in Cork. Her heart and lungs weren’t great and her skin was bluish. Keeping her warm was difficult and leaving the house was no longer really an option. Her memory too, had started to fade drastically. I spent 2 hours with her in February and when I had to leave, she gave out to me for staying only ten minutes.

Around that time, Louise was trying to get me to do Toughathlon with a group of friends from college. The idea terrified me, a 10k obstacle course through all types of mud. It had occurred to me that in all the years I’d known Aileen, I had never tried to raise money for her or for a cause she loved.

I explained it to her and asked her what charity she might like us to raise money for in her name. True to form, Aileen was unselfish. She had us raise the money for Barretstown, a charity which provides summer camp experiences for sick young people. She loved Barretstown as a child. In her mid 20s, she couldn’t benefit from the fundraising we did, but she wanted other kids to have it.

Louise’s college friends also raised money for Barretstown, though they didn’t know Aileen. I’m so grateful for that. Katie was a late joiner- and having never attended a gym in her life, Toughathlon must have been really hard on her but she laughed her way through it.

We completed Toughathlon on a grey, coldish Sunday, March 15th. From about 30 minutes in, I was dreaming about the wonderful bath I’d have afterwards. The bruises, red marks and raw skin were worth it. Every time some of us would find it hard, I found myself pointing out that it was for Aileen and that she’d never get a chance to do it so we had to suck it up.

I hasten to point out that Aileen would never, even had she been in tip top health, attempted something like Toughathlon. She would have happily sat on the sidelines, eating chocolate and laughing her ass off at us crawling through mud.

 

 

I couldn’t wait to tell her about it. How we swam through literal shit, hurt our ass bones on walls we then fell over, got lost in mud and shivered over tyres, under nets and into baths afterwards. I know she would have laughed her huge, loud enjoyment when she heard about it.

But we never got the chance to tell her.


On Monday, the 16th, I was on the way back to Dublin when Aileen’s Mom text to say she was, yet again, in hospital, and heading to ICU. I told her to call me if I could talk to Aileen and that I’d be back in Cork at the weekend to see her. Optimism knows no bounds- but as it turned out, I’d be back long before that.

March 17th’s message said that Aileen wasn’t good- that there was hope of a miracle. And finally, on March 18th- “Aileen not good and will probably not last the night.” I burst into tears sitting at my desk in work; something in my heart told me this time was for real. I fled the building, hopped a bus and hoped I would make it to say goodbye.

I contacted our other friends to tell them that this was it, that there were no more odds to defy, that there would be no more miraculous recoveries. Katie, Aoife and Lucy made plans to come home from England, but time wasn’t on their side. Sonia had been to the hospital and left before I got there. Those three hours on the bus were the longest I’ve spent on any form of transport. I’d swear in a court of law that the journey went on for days.

I got to the hospital at 9pm. I made it.

Despite accumulated years of preparation, conversations and attempts to come to terms with that moment’s imminence, I was unprepared. It was unjustifiable that a light so bright should be put out.


There’s nothing worse than waiting when you know there’s nothing you can do.

Sitting in the tiny room in ICU at Cork University Hospital, I told her parents about her sneaky chocolate obsession and we all laughed at examples of her tenacity and loyalty, her grumpy grudges and no-nonsense attitudes.

We said goodbye, telling her it was okay to go, that we loved her. She came around once, shortly after I arrived- and that was the last acknowledgement from her. I have never seen strength like I saw in that hospital room; a family, surrounding a warrior breathing her last. A mother and father, telling their daughter that it was okay to leave. I swear, I have never seen love like that.

Aileen passed away at 10.50. I hugged her parents, kissed her goodbye, and left. I didn’t cry until I picked up the phone to ring Katie and tell her. I gather that my voicemail to her wasn’t understandable and she rang me back at 6am to hear the bad news.

Being awake at 6am when the rest of the world is asleep gives a person time to think. It hit me like lightning and thunder: I cried for hours, raspy sobs rumbling around in my body, a hopeless anger roaring in my head.

A friend in England calmed me. He said that I was there to help her go, supporting her on a last journey: she wasn’t alone. She wasn’t alone and in the end, isn’t that what everyone hopes for?


I have perfect memory of the rosary, removal and funeral; picture perfect. I remember the glasses of wine we raised to her in Mayne’s and I remember the people who showed up the removal and funeral- old teachers, old classmates, old friends, parents of friends.

Aileen was decked out in a bright turquoise suit, nails painted her favourite colour purple, finally peacefully asleep. We bought her flowers- Birds of Paradise, a symbol of total freedom. Her dad popped a purple snack into her coffin. They played Coldplay’s Sky Full of Stars when she was lowered into the earth.

I remember the raw ache in my chest. I remember that those four days seemed to last a lifetime.

I remember the Sunday she was buried was also the end of the Six Nations. Lucy and I watched the first half of the Ireland match in the bar at the Maryborough House Hotel. The odds were against Ireland- but later at home, I watched the England match in almost perfect disbelief as the stars aligned. She’d have loved it. Peter Stringer came to mind.

After the removal, her parents showed us her scrapbooks- filled with pictures of us and pictures of Aileen on trips, in Milan and in Camden Town, her favourite place. She had longed to go back and see Camden again. Aileen was a rebel soul and Camden clearly lit a fire in her head with its costumes, markets and proud independence. It will always remind me of her.

The dead are often put on a pedestal, removed from criticism by a sense of respect- but everyone has flaws and Aileen was not perfect. She was a great woman for being cross about nothing. God help you if you were so much as 60 seconds late to meet her. She didn’t suffer fools easily and she was stubborn to the nth. Rolling her eyes was a frequent pastime. All of those things gave her a sparky, edgy personality, full of dry wit and no small measure of sass.

She was vastly unaware of her own outstanding qualities. Aileen had, some years past, written a post on Facebook and in it, said she wished she was a braver person. If she had been any braver, there wouldn’t be any brave left to go around. We all knew that, but she apparently didn’t. I wish we’d told her every day.

Aileen’s family told us that her friends kept her going, that we gave her life, that she loved us. They talked about us in the eulogy and said that without us, her life would have been shorter, would have been less.

Maybe they don’t know it, but without her, our lives would have been less too. Her generosity of character was immense: she gave much more to us than she ever sought.


Aileen spent 25 years fighting a war she didn’t start. She taught me about courage and hope and agony. She taught me to seek a life full of love, not limits. She taught me to be generous, to have no regrets, to laugh as often as possible, as loudly as possible, and damn to hell anyone who judged.

People have told me that it was a mercy- that she suffered enough. She was an unstoppable force fighting an immovable object. She didn’t suffer enough: she suffered too much.

She was 25 years young, not 25 years old.

Seeing a cross that bears her name in a field of others is crucifying; she doesn’t belong there; it’s not right. There’s no justification, no assuaging, no anecdote to make this sense of theft go away.

A little chunk of my heart is gone; I felt it go. It was a tiny cost for the privilege of knowing her.


For Aileen’s family and friends.

http://www.barretstown.org/