The Momentos I Kept to Remind Me of Life Before Chronic Illness


I’ve always been a stickler for keeping mementos. Not even from important events – it can be a receipt for a dress I’ve bought, a cinema ticket for a movie I’ve seen, a wristband from a gig…You name it. I have diaries from my years in college where I would staple all these things to the pages and date them. This made them inconveniently fat and heavy to carry around, but I loved flicking through them and seeing everything I had gotten up to; all the nights out, cinema trips, concerts, even drinks receipts from the pubs would find their place amongst essay submission deadlines and tutorial dates. I had a great social life. I got up at 6 a.m.  every morning and headed to college, returning late in the evenings, always with plans for the weekend. I was spontaneous, carefree, and happy. I was planning all sorts of things for the future. And I liked keeping little trinkets to remind me of it.

I was diagnosed with neurofibromatosis type 2 (NF2) at the age of 23. I had an MRI scan, as I had been losing some hearing in one ear, and the doctors just wanted to rule things out, but weren’t expecting to find anything. They called me an hour later and told me to come back in, immediately, as they had found a “worryingly large mass” on my brain. I was in a shopping center at the time, with my mum and my aunts, and stood rooted to the spot.

I had to spend the night in hospital, and in the days before smartphones, my only source of entertainment that I’d had in my bag was my Discman, containing a Damien Rice CD. I sat up all night listening to it. To this day, I can’t hear it without being right back in that hospital bed, waiting for the results from the neurosurgeon. For example, I met up with a friend in a pub a few weeks back, and one of the songs suddenly came on. I hadn’t heard it in years. I was gripped by the strangest sensation, a mixture of nostalgia, fear, and depression, and also by the irresistible and confusing urge to proclaim how much I loved that song.

It made me realize that I was keeping a lot of things in my life that would constantly be reminders of that horrific time. When I came home, I pulled down all the storage boxes in my room and emptied them out on the floor. I moved back to Norway from Ireland six years ago, after 12 years in Dublin, and because I went from a two story house to a Lilliputian apartment, a lot of my stuff hasn’t even been unpacked properly. I was overwhelmed at what I found. Each box was literally filled with receipts, tickets, letters, programs, everything you could think of. I then remembered that I had actually gone through these boxes at some point, and had obviously made up my mind to keep everything. I had decided it was all far too important to throw away.

I opened my wardrobe and pulled out all my clothes. They were full to the brim. Eighty percent of the clothes I hadn’t worn in at least 10 years, probably more. I recognized outfits I had worn in college (14 years ago), either on nights out or just on campus – back when I was a happy, outgoing student. Some of the clothes were worn through, others way too small or no longer my taste, but there they were. I had unpacked them, folded them, and shoved them into my wardrobe, unable to bear the thought of throwing them out, as to me, they were reminders of happier times.

I sat in the pile of receipts, ticket stubs, and too-tight dresses for a long time, crying over the life I had lost. Recalling that I had cried the last time I had looked at this stuff too, and had eventually packed it all carefully away again, the thought of getting rid of it too horrific to even consider. The piles stayed on my floor for a few days. I would shuffle through it occasionally, smiling sadly at a ticket for a Bob Dylan gig whose date revealed it had been used 10 days before my first of so very many MRIs, or a worn-thin piece of paper letting me know I had bought a vodka and Coke in my favorite club on a night out with the girls in 2002. Clothes I had worn to rehearsals whilst I was still able to do theatre, whilst I still thought I’d recover enough to make it as an actress. A jacket I wore in several photos from college, smiling broadly at the camera, brimming with confidence and happiness…Full of hope for the future, in the days before my face got broken following brain surgery, before most of my hearing was lost, before I had to start rubbing eye ointment into my eye 24 hours a day. Before two brain tumors were discovered, along with 37 tiny tumors along my spine in addition to a four centimeter large one at the base, which often keeps me awake at night, crying with pain. Happier times, when I was young and invincible, and I made silly mistakes. When I cried it was melodramatically at unimportant things, and I still thought I was able to do anything I wanted with my life.

So I had kept all these things, as reminders that my life used to be different – that it wasn’t always like this. That I had been able to attend drama school less than a year after brain surgery. That I believed I was strong enough and brave enough to enter the acting business, that any physical issues I had would eventually pass, and I could go for it. That there had been a time when I had rehearsed for plays, attended singing lessons, musical theater workshops, and dance classes, trying hard to become a well-rounded performer. Before I became aware that my health was getting worse, not better, and I realized that the play I did in April 2011 would be my last. And it broke my heart. I felt the need to keep anything that reminded me that these things had actually happened, that they weren’t figments of my imagination. I felt like if they disappeared, then so would I.

But this time, I decided not to put them back. Seeing them didn’t make me feel better, the way I had convinced myself they would, serving as reminders that I, too, had been someone at one point. That I had done fun, exciting, worthwhile things with my life. Seeing them made me sad, for days on end, pulling me down into such a funk. I found it hard to claw my way back up again. They did nothing except call to mind what I had lost, and not in a pleasantly-reminiscing kind of way. It was as though I had tried to pretend that nothing had changed for the past almost decade-and-a-half, that if I kept all the same stuff, then I was, ipso facto, the same person.

I fetched three bin bags and got rid of it all. Any clothes that were still in good nick, I gave to a friend with two daughters. The rest got thrown away. Every ticket, every receipt, every broken piece of jewelry, everything, everything. I heaved it out. It was hard. I know it may sound silly, but it was incredibly hard. I had mild anxiety attacks whilst doing it. I kept the photos. I kept play scripts. I kept programs with my name in them. I kept the important things. I wasn’t trying to erase my past, but I realized that on some level, I was trying to convince myself that I was still living the same life – and I was doing no such thing.

I tidied back all the stuff I was keeping, and marveled at the amount of space I had. Everything looked so neat and tidy, I bought new clothes and filled in gaps where there had never been gaps, and was feeling mightily feng shui-y. If only there were a way of doing a mental clean-up along the same lines. All your fears, worries, all your broken, frayed, ill-fitting thoughts tossed into trash bags. I’d make millions if I could figure that out.

I won’t pretend that I’ve been able to move on from all the bad stuff. I’ll always have to deal with NF2. It’ll never leave me in peace. It’ll probably get worse. I never know how my day is going to turn out when I get up in the mornings. But I like the thought that I can take back some control, however little, wherever I can. I don’t need to keep concrete reminders of how much better my life would be without my illness, of how much better it was before. That I can do something about.

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Gettyimage by: jakkapan21

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