Ursula Tyabji-Zawawi-Heffernan

Robert Tyabji

Ursula is my older sister and only sibling. When she was about 8 years old, she became sick (typhoid, I think) and my parents sent her off to Switzerland to live with my aunt Hedi (Mum’s eldest sister) and her husband Carlo, who managed her treatment and ultimate recovery. Because she was away in Switzerland for many years, while I grew up in Bombay, I barely got to know her until much later, when I was in my teens.

In 1957 Ursula married Zuhair Zawawi, one of the sons of an Omani businessman in Bombay. In 1958, she delivered a son, Tariq, and a year later they moved to Kuwait, where Zuhair had a job. Once in Kuwait, Zuhair became demanding and abusive and the relationship soured while Ursula found herself pregnant. Desperate to escape the abusive relationship, Ursula planned to move back to Bombay. Sensing this, Zuhair impounded her passport but one of his sisters helped her obtain travel papers from the British Embassy, and she was able to board a flight to Bombay with Tariq. By August, 1960, Ursula and Tariq had moved into our family's Somerset Place apartment. Her daughter Clara was born in 1961. Being fluent in German, Ursula was working with a German organization, the Max Mueller Foundation. A few years later, a cousin in Australia convinced her to move there for the childrens’ education and future development.

Ursula crowned Beauty Queen at inter-collegiate social, 1955

Bruce Ellison and Ursula's remarkable story of bravery, love and perseverance.

As told by Bruce to Justine Ford

It should have been easy to put one foot in front of the other, but I struggled. When I walked down the street, my legs gave way beneath me. ‘You’re just clumsy,' people would tell me.

But that wasn't it. When I was 10, the doctor diagnosed muscular dystrophy.

“It’s a muscle-weakening disease that we don’t know much about.” he said. “You’ll probably be in a wheelchair at 15. You’ll be lucky to be walking at all by 21.”

‘Over my dead body!' I exclaimed.

Mum and Dad were right behind me. I was the eldest of 10 kids, but my parents didn’t see me as a burden. They loved and supported me as much as the others.

As I got older, my legs grew weaker. I pushed myself to do things like regular kids. I joined the Sea Scouts and had to swim half a mile to get my swimmer’s badge.

“Come on, Bruce, keep trying,” the other scouts yelled.

It took me almost an hour and a half, but I did it.

When I was 17, I started going out with Diane, who was the same age. “You’re so brave,” she often said. “I'm not brave,' I replied. 'I’m just living.'

Like many teenage romances, it didn't last, but after that finding a girlfriend wasn't easy. 'When all the other guys get cars, they get girls. I haven't got a chance,' I complained to Mum. 'When you get a car, you'll do the same,' she assured me.

At 18, I got a job in the public service. I took the bus into the city and walked to the office with a stick. If people bumped me accidentally, I fell over. “He must be drunk,” I heard people say. I tried not to mind.

A year later I bought a car and modified the controls so I could have a handbrake instead of a footbrake.

I didn't turn into a Casanova, but when my 21'st birthday arrived, I was triumphant. I'd stayed out of a wheelchair!

I started working in the accounts department of a confectionery company. One day as I hobbled in, I slipped over and fell through a glass window. I was OK, but the accident prompted the manager to show me a wheelchair brochure.

“Pick one” he said,”if you're gonna work here, you're gonna be in a wheelchair.' Resigned to that, I picked out a chair. It certainly made it easier to move around the office. I accepted that I needed a wheelchair and got a sporty-looking wheelchair for home, too. Within a few months I couldn't walk at all. I'd always known it would happen one day.

Three years later I went on a cruise. At one point I was sitting on deck surrounded by a dozen single girls. My mates came over to chat them up. Pretty soon they'd all paired up and I was left alone. It was disappointing.

I had a couple of casual girlfriends over the years, but the relationships never worked out. I was sick of the line: “Can we just be friends?”

Tired of rejection, I gave up on girls and concentrated on making my life as fulfilling as possible. I traveled around Europe with my best mate, Chris. When we returned, he competed in cycling races and I was his crew manager. I scored local cricket matches every Saturday. I played electric-wheelchair sports like rugby league and took part in a charity swimathon. I edited a newsletter for the Muscular Dystrophy Association and joined its board of directors.

Eventually my illness got the better of me and I had to retire at 35. I lost my driver's license, too. That was pretty depressing, but I had to accept it. Then when Mum and Dad moved to Forster on the New South Wales north coast, I moved into community housing.

Even though I needed carers to get me in and out of bed and help with ablutions, I was excited to move out of home. In the beginning, I had three carers, but after a year one called Ursula took over. As time went by we became friendly.

“Do you want me to take you to cricket?” she asked me one day. “We can go in my car.” This was beyond the call of duty. She must like me, I thought. But as she had a boyfriend, I didn't think she had romance in mind. Neither did I. I didn't think it was an option.

Soon Ursula, 50, was coming over every Friday night to play Scrabble. Three months later I was invited to the National Electric Wheelchair Sports convention in Adelaide. ‘Would you like to come as my carer?' I asked Ursula. “I'd be delighted.'

“You two are an item,” my friends teased. ‘No, we’re not,' I replied. Ursula just laughed. I started seeing a lot more of her socially. We watched TV together and went out for dinner. Ursula even knitted me a jumper. She was a brilliant cook, too.

Then one night at a restaurant, Ursula told me she’d split up with her boyfriend. “I want to be with you,” she said.

I was staggered. ‘You want to be with me? No-one's ever ended a relationship with another man to be with me before.'

“I love you, Bruce.”'

I was stunned that this vibrant, caring woman wanted to have a relationship with me. I'd given up on love, but it had found me anyway.

The following year we went to the electric-wheelchair sports conference in Adelaide again. I picked up a chest infection and found it hard to breathe. I remember getting off the plane back in Sydney, but the next thing I knew I was in hospital on life support.

“You only have three days to live” the doctor told me.

I couldn't talk, but I did manage to scribble Ursula a note: I love you. When my family and friends came, I wrote another note: Please, it's Ursula\s birthday tomorrow. Can you buy some flowers for me?

Meanwhile, the doctor explained my condition. “Your lungs have collapsed and your carbon dioxide levels are toxic.” By the end of the week, I had the option of being taken off life support. “If you become distressed, we could give you morphine to treat that,” the doctor advised.

I felt that if I went down that path the morphine could depress my breathing and that might be the end of me. 'I don’t want to give up yet,' I said and opted to stay on life support. Ursula was furious. She believed the doctor had given up on me. “A week ago he was OK, and now you say he's going to die. Why can’t you do something?”

Thankfully, someone did do something. A sleep expert changed my recovery regime and stabilised me. After 99 days I left the intensive care unit but remained in hospital. I might not have been in the best shape, but my fighting spirit was alive and well.

Ursula came to see me every day. She read to me, took over some nursing duties and held my hand. Her smiling face worked wonders. “We’re going to get through this,” she said. 'We sure are. I'm gonna keep fighting.'

After nine months in hospital I could be released. But because I'd been laid up for so long I'd lost my community housing. “Why don't you come and live with me?” Ursula suggested. ‘You’re really kind, Ursula, but do you really want to have someone who’s chronically ill living with you? It’s a big commitment,' I said. “It’s you, Bruce,” she said hugging me. “I want to do it.”

Besides ongoing personal care I had to sleep with a ventilator or I'd stop breathing again. In January 1994, after some modifications to Ursula's home, I moved in. It wasn't easy, but it was wonderful. We took romantic holidays to wheelchair-friendly resorts in the New South Wales coast and bought a cute poodle puppy called Kermit.

Today, 12 years later, I'm 50 and living with Ursula, 65, in Willoughby, NSW. We've never married. There's no need,we’re soul mates. Even though life can be physically tough, our love and friendship gets us through. Kermit is still going strong and these days I'm friends with the doctor who offered to easy my pain. He's asked me speak to his medical students and has come to my birthday celebrations. He's so glad I defied the odds.

I set myself realistic goals and take each day as it comes. In my opinion, no matter how difficulty life may seem, the world is a lovely place. I'll keep fighting to be in it.