#valantine's day tribute

[leechie]

When my lover became my carer

By ELLICE MOL (Originally published on SBS Life)

Most couples have difficulties balancing work, family and friends, making time for each other, making decisions and paying bills. But when one of you has a disability or serious illness things can get a lot tougher. 

Photo credit: Jessamine Chen

Like any couple falling in love, we were crazy about each other. We cuddled, stayed up late, made love. We wrote songs and connected over a mutual love of grammar and words. We laughed for hours. Nothing to worry about. We had finally found each other. We were lucky. Very lucky.

Rhys was at university when we got together. Planking had gone viral and Charlie Sheen was ‘bi-winning’. I had just returned from Afghanistan where I had been working as a journalist.

I was run down. My specialist, who had seen me as a patient for at least seven years, but could never remember my name, asked if I’d ever thought about having a lung transplant. I wasn’t worried. I’d been dangerously unwell before but I’d always pulled through. It was all part of the package of cystic fibrosis (CF), a genetic condition that affects the lungs and digestion. It’ll pass, I thought.

Meanwhile my relationship was moving fast. After five months Rhys and I decided to move in together. In our apartment, under the flight path, Rhys became familiar with the chaos that comes with CF.

My lung function had been stable at 30 per cent for the past 10 years and according to my specialists I was unusually ‘high functioning’. But by our six month anniversary my lung function had dropped to an alarming 19 per cent. I could no longer climb stairs, hang out washing or lift shopping bags. I started to depend on Rhys for help with all those domestic chores.

Rhys watched me deteriorate. I struggled to get out of bed most days. He would cook delicious feasts to entice me to eat but I had lost my appetite and was fading away.

Rhys started coming to my clinic appointments. The doctor ignored him – I suppose he thought it wasn’t worth the effort. But Rhys quietly observed and heard what I couldn’t bring myself to admit. I was dying.

When I was told I had a 50 per cent chance of surviving unless I received a transplant soon, Rhys, who had become my advocate and my carer, was left out of the discussion. He was upset when he found out. I was furious and felt like I was being forced to have a transplant. But my health was the worst it had ever been. My quality of life had slipped and now that I was with someone I cared about the decision wasn’t just about me anymore. I finally accepted that if I wanted a future with Rhys I would need a transplant.

Back at home we were becoming even more isolated. We didn’t see much of our friends. I couldn’t be out for more than a few hours before my body was swathed in pain. I was barely hanging on. I developed social anxiety. I could barely speak due to constant chest and throat infections. Rhys became fluent in my subtle cues that would signal when I needed him to speak on my behalf.

We were introduced to a new team of doctors at a new hospital that specialises in heart and lung transplants. To our relief we were warmly welcomed at the new clinic. The staff learned my name immediately. They made a special effort to invite Rhys to all the appointments. Rhys did a thorough job of asking the doctors all the questions I’d forgotten to ask. They offered him support. I saw a psychiatrist for my anxiety. The heavy load suddenly became a little bit lighter.

Once I had finished an all-consuming round of tests, known as the ‘work up’, spread out over eight months, Rhys and I had some space to work on our relationship. The trouble was I could hardly breathe. There were times when the only use for sharing a bed was so Rhys could hear that I was still alive. Every day I worried that he might find it too hard and walk away. Some days I even wished he would. The physical chemistry we had gave way to emotional dependence. We were both grieving for the relationship we once had.

My health worsened to the point where Rhys had to carry me up the two flights of stairs to our apartment. My reserves were empty and our relationship was fraught. I’m not sure whose life was more shit.

There were times when the only use for sharing a bed was so Rhys could hear that I was still alive.

By the middle of winter 2012 I was officially listed for a lung transplant. All we had to do was wait. We weren’t sure how long it would take. Maybe one day, maybe five years. The match would depend on blood type, tissue type and size. I was smaller than average so I might have to wait longer. We agreed to stop thinking about it and enjoy the days we had left together. We shared brief moments of joy and laughter. The relationship was still worth fighting for.

Seven weeks later I got the call we were expecting: a match. It was a huge surprise and even though I was so desperate for the transplant we weren’t really prepared for it. Rhys and I sat on the edge of our bed, holding hands waiting for the ambulance to arrive to take me to the hospital. Once we got there I was prepped for theatre and was suddenly faced with having to say goodbye to Rhys, perhaps for the last time. We said our goodbyes and he watched me as I was wheeled in my bed through the doors to the operating theatre.

I woke up a day and a half later with a breathing tube in my mouth. I knew everything was going to be ok the moment I saw Rhys’ smiling face. My mum was with him and she was smiling too.

It was a slow and critical path to recovery and Rhys was with me every step of the way. He witnessed the pain, the tears, the medication-induced rage, the hallucinations, the moment when I got my appetite back and shamefully scoffed a Mrs Macs pie at the hospital cafeteria, the moment when I took my first walk around the ward and the moment I was told I had a bleed near my heart and would have to go back to theatre for another risky operation. After two weeks he brought me home and the real healing began.

On the first anniversary of my transplant I ran in Sydney’s famous City to Surf. It’s now been four years since a generous donor saved my life.

Rhys’ kindness and strength endures. He is my best friend and my heart is full of love for him. We are back to where we were before I got sick and in celebration of our renewed life together we brought a puppy into our home. He reminds us every day that life is fun and worth living. There are still some health-related challenges but we know how to do it now. I’m not sure what the secret is to holding on to a relationship through an experience like ours but I do know that we never lost hope and we never stopped loving each other.

As seen on SBS Life

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© Ellice Mol 2016