Lost Connection

Mat didn’t get a diagnosis at the emergency department that night. He stayed in hospital as use of his feet and legs left him. After months of investigations, he went to stay with his Mum while learning to use a wheelchair, all the while applying his brilliant mind to the puzzle of his paralysed body.

Meanwhile, I made stories and drawings to help me remember the strange language and concepts of biochemistry. I learned much more listening to the lecturers the second time. A series of crushes on tutors helped motivate me in the more abstract subjects. Hormones can be a motor force for learning in youth.

In the evenings I walked down the campus to the bus stop, magpies warbling in the coming night. There were currawongs to call too. I felt enriched to be learning.

Mathew returned to university. Wheelchair bound, his huge network of friends still made walking with him a series of enjoyable chats. He had literally hundreds of friends.

We resumed studying biochemistry together a couple of times a week. One evening at his place he told me he’d had alarming episodes.
 
“I’ll be lying in bed and feel this numbness travel up my body. I even stop breathing for awhile. Then it goes away. It happens when I’m lying in bed before I get up or before I go to sleep.”

It sounded like night terrors to me. Mat had a vivid spiritual and dream life which included astral travelling and visions. We returned to the memorisation of the Kreb’s cycle, while eating fat, spicy noodles from the local Thai place.

Later that evening, Mat stiffened in his chair. “See, it’s happening again, Nelli, but I’m awake and sitting up this time. I can’t move my hands now. I feel it coming up my chest. I won’t be able to talk in a minute.”

Photo by Mayur Gala

I came close to Mat’s chair, touching his hands and arms. “I can’t feel you touching me, see? Strange isn’t it? Do you think we’d better go to the hospital?”

“Maybe,” I said from behind him, resting my hands gently on his shoulders.

His chin fell onto his chest. Mat’s bright eyes were still open and moving, but he was unable to talk. I lifted his heavy head to keep his throat open. He was still breathing, but there were pauses between breaths as if his body forgot to do it. He felt like a huge, warm ragdoll in my hands.

I yelled to Mat’s housemate who was listening to music in his room.
He came running.

“I need you to call an ambulance. Tell them I’m having to hold Mathew’s airway open.”

Mat regained the ability to speak, but lost all but the tiniest flicker of movement in his fingers, hands and arms. When I went to see him the next day he insisted that his biochemistry exam to be brought to him in hospital. He passed him exam, drawing an enzyme, by dictating a description to the scribe.

Exhausted, distraught, I sat the exam too, but failed mine.

Rendered quadriplegic, Mat was in the hospital for months. He was not long past 25 and spoke frankly about his loss. “Can you tell me about telephone sex, Nelli? I’m going to have to use my brain.” “And your sexy voice,” I said.

In darker times he told me that the nurses had removed the razor blades from his cabinet. “I can’t even kill myself,” he said bitterly.

I knew the hopes and frustrations of the hospital system well. My son was just 3 when his father was run over, riding his bike to work one summer morning. GB had multiple injuries and was not expected to survive. His spirit was far away. I could not reach it for long days and nights.

GB’s decision to return to his broken body and rebuild his life helped crystallise my desire to become a doctor. I wanted to be an instrument, or a witness, of profound healing. GB’s recovery was a kind of a miracle. So was Mat’s survival.

We made a roster of Mat’s friends visiting. Organising a hoist to get Mat out of bed proved difficult, so we broke hospital rules, pushing his bed out of the ward and down the corridor to the lift. Once downstairs, Mat held court on the hospital lawn, sharing love, marijuana and Chinese food — essential salves, he said, to his pain.

Mat was ill when I took my son to a conference of Indigenous doctors and medical students on the north coast. It was a long drive up coastal country. I was so pleased to be with other Aboriginal and Islander medical students and doctors. For once in a medical context, I didn’t feel a psychic buzz of chatter about me whenever I left the room. A senior man from my clan was there, encouraging me.

I re-sat my biochemistry exam and narrowly passed it, giving me hope that I would progress further in my course in the new year. I was weary. I’d been at university for nearly six years now and was still at least four years away from graduation in Medicine. I wasn’t sure if I even liked this type of medicine. So much of the hospital system seemed cold and brutal, far from the love and compassion I sensed was key to healing.

I was also tired of managing on a low income. I worked in the evenings and on holidays. My family were always able to help out it if things seemed insurmountable. Mum fed us and regularly gave me packets of laundry detergent. She couldn’t stand me washing the clothes in the cheapest dishwashing concentrate. She was determined that we should not be stigmatised.

That summer, Mum bought my son a new set of clothes and shoes for his first job. He was excited to work in a video store over school holidays. But on his first day, as he walked to work, his immaculate outfit attracted attention from local gang members who held him up at knifepoint. He kept going to work but I was heartsick. Then the video store owner didn’t pay my son or his co-workers for their labour. I spent hours on the phone with the union and state authorities to get them paid.

I visited Mat less often. He wanted to have a ball. “We’ll need to raise $80,000 to adapt an apartment so I can live independently, Nel. That’s what the occupational therapist says. You know, there are lights you can turn on and off by calling out. It’s a lot of money, but I think we can do it. Otherwise they’ll put me in a nursing home.” A shadow crossed his face. “We’ll have a ball to raise the money. I’m sure we can do it.”

Mat learned to use his computer with his head and mouth and continued researching the cause of his illness. “They call it non-demyelinating progressive central and peripheral neuropathy. There are only about 5 cases in the world. It’s more of a description than a diagnosis, isn’t it?”

Later he told me, “You know, I really think that experiment I went to for $30 that day might have triggered this. They were using some kind of crustacean protein, putting it under the skin. They were looking for a viral coat to carry medicines into the body, I think. This disease has caused my immune system to destroy my spinal cord.” Mat tried to get details of the experiment but they wouldn’t give him anything. The university sent him a letter from their lawyer. “All I want was to know is what they did to me.”

“I failed biochemistry again”, I told him. “By one mark.”
“Oh Nel, I’m sorry,” said Mat. I gave him a hug.
“Sometimes it feels like they really don’t want us in Medicine,” I said.
“Keep trying Nelli,” he said. “We can do so much in medicine. It’ll be worth it.”

Over the holidays, I was working multiple jobs and had not visited him for weeks. Then I got a call from Mat’s Mum’s partner late one night. “Matty’s died,” he said softly. “The hospital wants you and some of the others to go and identify him.”

Photo by Glen Noble

The funeral was big and very emotional. We played Bette Midler’s “Wind Beneath my Wings.” His mother and sister sat at the front, looking small, as if their bodies were empty, like Mat’s.

Back on campus, I went to the careers counsellor and then to one of the administrative offices. I’d completed enough units to qualify for a combined Arts and Science degree or a Bachelor of Science. The first would be more difficult to negotiate. I accepted the Science degree and left university.

Mum saw an ad in the paper for clerical work at the Pap Test Register and I took the job. I was the Follow Up Clerk. I talked to women who’d had abnormal Pap tests. An Aboriginal woman called from a public phone to ask me about her doctor’s advice that she have a hysterectomy. “Can I ask them to give it to me?” she asked. “I’d like to be able to bury it in my country. Will they let me?”

I did well at my job. My boy and I bought new shoes.