Achieving the impossible

Pursuing a master’s degree can be a challenging task for any student, but for Thomas Cullen, who has advanced Progressive Multiple Sclerosis, the idea seemed almost impossible.

Thomas Cullen was a new soul in Brisbane, taking a break from studying to be a priest, when he noticed something unusual about his legs.

“I started noticing that my foot wouldn’t go properly,” Tom said. “Even though I was saying to it ‘walk’, it wouldn’t do it.”

Tom’s usual mode of transportation – riding a bike – became increasingly difficult, and while playing his favourite sport, his body would literally give up.

“I remember I played squash with one of the men who was presenting to be a permanent Deacon. I would get through six points and my body would just not work,” Tom said.

It took more than two years for doctors to explain Tom’s mobility issues, and by that stage, there was little more they could do for him.

Multiple Sclerosis, or MS, is the most common acquired chronic neurological disease affecting young adults in Australia, and sadly, there is no cure. 

With MS, the body’s immune system attacks and damages the sheath around the nerves, which is typically meant to protect and insulate the nerve so the brain can send electrical messages to the body.

In 2012, partway through completing a Graduate Diploma in Theological Studies, Tom was diagnosed with progressive MS, a rare form of the disease that affects only 10 per cent of the MS population. It means Tom’s neurological functions will progressively worsen over time.

“Did you ever play the game Pac-Man? You know how the Pac-Man goes across and eats all the dots? That’s how I imagine MS,” Tom said.

“My neurologist said to me about three years ago, ‘The one thing that I can definitely say to you is that you’re going to get worse.’

“I can’t escape what’s happening to me. As much as I’ve tried, I can’t escape. Something is chasing you and if the running isn’t worth doing, you might as well accept that this is the reality.”

Not counting the losses

In the 10 years since doctors diagnosed Tom with progressive MS, he has lost the use of his legs, his lyric tenor voice that made him head chorister at multiple choirs is sounding “a bit dodgy”, and he is unable to hold a spoon to feed himself.

Thomas Cullen during his Thanksgiving Mass at ACU Holy Spirit Chapel, Banyo.

But amidst some incredibly difficult circumstances, Tom has also become a source of inspiration for his fellow ACU students and teachers. Through sheer determination, a supportive university community, and many, many prayers, Tom was awarded a Master of Theological Studies (Liturgy) on September 15, 2022. The presentation of the Award by ACU Chancellor the Hon. Martin Daubney AM KC coincided with a Thanksgiving Mass, hosted by ACU’s Campus Ministry in Brisbane, and attended by approximately 100 friends and family members.

“It was the first major public event that I’ve ever attended in a wheelchair, so it was huge for me,” Tom said.  

ACU Professor of Liturgical Studies, Professor Clare Johnson, encouraged Tom to pursue a master’s degree following the completion of his graduate diploma with a major in liturgy. Tom’s perseverance with his studies earned him a scholarship from the ACU Centre for Liturgy to support his postgraduate studies.

Tom speaks particularly highly of his research supervisor, Sr Ursula O’Rourke sgs, who also teaches liturgical formation to seminarians. 

“I really feel as though Sr Ursula was put in my path for a reason. She was my supervisor for an undergraduate unit that I did 10 years ago, and now suddenly she agreed to be my supervisor for my master’s,” Tom said.

“We’d meet each week, and I’d have to prepare work each week. Somebody drove me and helped me get into the wheelchair, and then I’d wheel myself in to see Sr Ursula and talk not only about what I was writing academically, but also what my topic meant for the Church today in building faith so that what I was writing might help people understand the connection between worship and mission. With her, it was as if the wheelchair wasn’t there – we were speaking about the research project, and in that we were asking, where is God in this?

“I have enormous respect for Sr Ursula. She is one of the unsung heroes of knowledge of liturgy in our country.”

Tom says if it weren’t for the support of his teachers and Kerry Hale in the Disability Unit, he would have quit long ago, because on a practical level, everything about completing postgraduate study was exponentially more difficult for him. For instance, writing a 16,500-word research project plus footnotes became excruciatingly painful.

Thomas Cullen with his research supervisor Sr Ursula O'Rourke.

“I know this sounds dramatic, but it’s like every time you press the keyboard, it’s like you’re pressing nails,” Tom said.

“It’s a mental challenge to face the fact that your body doesn’t work.  I would have given up in some ways, if it wasn’t for the support, kindness and encouragement of the academic staff I encountered, Mass on campus at least three days per week, the prayers of so many people as well as deepening my faith and trust in God to complete the thesis in a race against a progressive, neurological and chronic disease.”

Researching liturgical music in cathedrals

As a former cathedral cantor, it’s no surprise that Tom’s postgraduate research essay focused on music in cathedral settings. Tom said he was particularly interested in whether cathedral choirs were adhering to the liturgical instructions promulgated by the Second Vatican Council. 

“While altars got turned around and the priests faced the front, in a choral Sunday Mass situation, nothing was changed,” Tom said.

“I kind of liken it to a time warp – I’m 58, but the in between might as well not have happened because in terms of the music in the liturgy, it was the same as when I was nine. 

“It really concerns me because it means the Church is not following the liturgical documents of Vatican II, or the documents released since, completely. Some Directors of Music in a cathedral setting, with multiple choirs, seem to forget that conceptually, the liturgy comes before the music.”

Uncertain future, but full of hope

Due to Tom’s ongoing physical issues, he’s uncertain if he will be able to pursue further postgraduate study or research. But he hopes to continue advocating for university students with a disability so they can also achieve the impossible. 

“I am one of many who carry the weight of a disability, visible or invisible, on their shoulders aspiring to higher study and all of us need to be supported and cared for by our Catholic university,” Tom said. 

“I also became aware of the necessity to inspire all members of the community, be they able-bodied or a person with a disability, to share their gifts in our liturgical celebrations.

“I’m still trying to understand what I am to do because of the progressive nature of my MS. I don’t have the power to stop what’s happening, but I do have the choice to still rely on my faith and through that belief I was able to achieve a Master of Theological Studies (Liturgy) which I feel very proud of and hopefully I have validated all the lecturers who showed such faith in me. 

“This, I thought, was something out of my reach. It’s only through prayer and frequently attending Mass that I’m surviving.” 

Learn more about studying theology at ACU.