Caitlin McMullan reflects on growing up with disability and the life-changing effect of having her right leg amputated after years of unsuccessful surgery.
In August 2015, Caitlin McMullan had her right leg amputated below the knee. She was born with a birth condition called fibular hemimelia, meaning that she was missing her fibular bone, with deformities in the knee, ankle and foot. One year ago, with advice from her consultant, she decided that amputation would be the best option. Caitlin’s friend and filmmaker Dorothy Allen Pickard shot ‘Old Pal’ with her the day before the operation. One year later, Caitlin reflects on how the operation affected her life and her long journey of recovery.
The phone rang. It was my friend Dorothy asking whether I’d be interested in writing a piece on the film we made together last year, the day before my amputation. So much has happened this past year, how would I know where to begin, and to be honest, did I really want to relive it?
I started looking back at diary entries I had written from before Old Pal was made. I wanted to put myself in those shoes, to try to understand the changes that had since happened to me. Reading through my notebook, I was taken aback. I had made so many plans for how my recovery would go, so many lists and rules that I had to stick to. They were entitled ‘Rules of Recovery’.
– Rule 1: Try not to feel sorry for myself
I would write the same list over and over again in the same little black book.
– Rule 2: Don’t be afraid to do things alone
It had become a sort of a ritual to get me through the pain, as if repeating these rules would somehow make it more bearable.
– Rule 3: Go for a swim as soon as I can
I was a completely different person last year. I was scared, obsessive and to some extent, a little selfish. I couldn’t process anything that was going on around me, only what was happening in my head. I was going through a period of mourning: mourning for my right leg. From March to August 2015 my world was crumbling around me and didn’t know how I could rebuild it. I was both dreading August 20th and waiting for it impatiently.
Old Pal was filmed the day before my amputation. I didn’t know how I was going to cope that day, but there was something hugely comforting in talking to an old friend in straightforward terms about what it is like to live with a physical disability. I’m sure you can imagine how hard it can be to get these conversations right. Sometimes I find myself envying my childhood friends for having learnt the A-Z of disability lexicon through my experience.
So, when the time came to film this conversation, Dorothy knew what an enormous step it was for me. Talking took me away from what was happening and brought me to a place where I could laugh and cry with someone who may not have understood what I was going through, but damn did she try. We reminisced about our teenage years, laughed at the ignorant things people have said to me, and spoke about my hope for the future. I felt no discomfort or distress until later that evening when the filming was over.
The night before my amputation was like no other and remains a bit of a blur. I still don’t know how to describe what I was feeling that evening. When all the distractions had vanished, what awaited me suddenly became very real, and yet it seemed to be outside of reality. I hardly slept the night before my operation, but I guess that’s to be expected. Then, on the morning of the 20th I was strangely calm, taking one step at a time and trying hard not to think about the next. I had to be strong around other people and couldn’t let my fear of the unknown change my decision.
My mum tried to give the odd word of encouragement as she held back her tears and squeezed my hand, both of us knowing that no words could change the situation. So we sat in silence and waited. I asked her to leave before I was taken to theatre. I needed time alone before it happened. We said our goodbyes and she held my foot and kissed it. That was the last time she saw it, and from what I remember, it was also the last time for me too. After that point, my only memory from that morning was realising that David Bowie’s ‘Changes’ was playing on the radio. Between sobs, I laughed to myself as the surgeons wheeled me into the operating theatre.
I was in hospital for roughly two weeks after the operation and a lot of that time was spent in a haze, high on morphine, feeling both physically and emotionally numb. At first, I couldn’t bear to look at my residual limb.
Step 1: Look down at your leg as they change the dressing
I felt like a monster that had been cut up and stapled back together. But seeing it was the beginning of me coming to terms with the loss of my leg. I often felt extremely lonely in hospital, but other times it became my safe haven, hidden away from the real world. I didn’t have to deal with seeing anyone’s reaction to the massive change that I had just undergone. All that mattered was the comfort I had from those four walls and there was a part of me that wanted to hide away there forever.
Step 2: Stand up
I didn’t move much from my bed in those two weeks. The first time I stood up, my residual limb throbbed and my entire body shook, terrified that I would fall. It was a big moment for me, getting out of that bed. It was the beginning of a long process of recovery. For the first time in a while I felt proud of myself. A weight had been lifted: it was done and there was no going back. All I could do was make the best of this new situation.
Don’t get me wrong, I definitely had low points, but something had shifted and I saw myself in a new light. With each day that passed, I achieved more than I had the day before. The support that I received from my friends and family pulled me out from that lonely world I was in. There are no words to describe how grateful I am to my sister, who became my carer and my rock.
Step 3: Leave the house
The next couple of months went by very quickly, with a lot of highs and lows. Whenever I left the house, I experienced extreme anxiety. I hadn’t yet come to terms with the way I looked, and couldn’t cope with other people’s reaction to me. I didn’t want to be treated differently as an amputee, but I also needed my friends to acknowledge what I had been through.
Step 4: Get out of the wheelchair and walk
Recovery has been a rollercoaster, with physiotherapy proving to be the best possible distraction. The first few steps I took wearing my prosthetic leg were both exciting and terrifying, but as soon as I started walking there was no stopping me. Now, I am in a race with myself, determined to get back onto my feet.
Step 5: Get on with it
In the space of a year I have learnt to walk, swim, run, dance and ride a bike. I can safely say that my confidence has grown and I’ve changed the direction that my future is taking. Although I am still in the recovery process, I can finally see that the hard work I have put over all these years is paying off.
Old Pal is directed by Dorothy Allen-Pickard.