One afternoon in mid-January 2017, my fiance Greg came home early from his job as a tiler with lower back pain. He took the weekend to rest up, however Monday came and the pain had not subsided. The days turned into weeks. In early March I set off on a month-long book research trip to Ireland, expecting Greg would be back at work by the time I returned. He wasn’t; he was suffering from a protruding L5/S1 Disc. He was 32 years of age, and had been working as a tiler for seven years.
My role as a carer for Greg started off small; I was doing more of the tasks we usually shared. Carrying the heavy shopping bags, doing the laundry, loading and unloading the dishwasher. Anything that involved lifting and bending, or standing for extended periods of time.
On top of these increased responsibilities at home, I was also working part-time as an Attractions Presenter at Warner Brothers Movie World on the Gold Coast. At the end of May 2017 I left that job, a position I had held for over four years. I had landed a full-time position as a travel agent in Broadbeach. It was my dream job.
In June 2017 Greg underwent a discectomy, a procedure to surgically remove the damaged disc tissue. He was unable to drive for several weeks following the surgery, not only because of his physical incapacity but also the heavy pain relief drugs he was taking.
This procedure failed and the remainder of his damaged disc continued to deteriorate.
It was around this time that the gravity of Greg’s situation was beginning to dawn on us. Greg’s future was becoming more and more uncertain, and understandably he was becoming increasingly worried. Being home alone with his thoughts only distressed him further. I was often the only person Greg saw or spoke to all day, and when I arrived home from work, he would offload his ruminations from the day onto me. My work days were long in my new job; I had an eight-hour work day, and an hour’s commute home to Edens Landing in Logan, north of the Gold Coast. I was exhausted by the time I arrived home, and coping with Greg’s increasing anxiety was becoming difficult.
Being a travel consultant was also proving to be more stressful than I had ever imagined. I was utterly overwhelmed; despite my hard work, and many hours of unpaid overtime, I was not reaching my sales targets. My probationary period was approaching, and I was warned by my superiors that if my performance did not improve, I would be let go at the end of my probationary period at the end of September. I was utterly devastated; Greg and I had already made plans to move to Broadbeach, to a unit which was walking distance to my work. Nevertheless, Greg was insistent that both of us view the situation as positive. He would be glad to see me less stressed, and assured me that together we would figure out the rest.
Despite my pending job insecurity, we continued with our plan to relocate to Broadbeach. Due to his back injury, Greg wasn’t able to help with the packing or heavy lifting, so I assumed the responsibility of getting this done. We had help moving from some family and friends. Three weeks later, Greg returned to hospital for a a spinal fusion. Once again, he was unable to drive. I had to do all the organising to have our utilities and bills changed to our new address. I had to get Greg to and from his medical appointments. I had to do the grocery shopping, cooking and cleaning.
Knowing I was not going to be able to achieve my monthly sales target, I resigned from my job as a travel consultant before my probationary period was over. I was nervous about being unemployed, but at the same time relieved I would no longer be faced with the pressure associated with that job.
Following Greg’s spinal fusion, and despite the structure of his back being restored, he suffered debilitating ongoing sciatic nerve pain and numbness in his right leg and foot. To treat this pain he received a cortisone injection, after which he was once again unable to drive for a period of time. Not only did this procedure do nothing to relieve the pain, it aggravated it further. He couldn’t even do the minimal amount of walking and hydrotherapy exercise he had been prescribed by his physiotherapist.
His mental state deteriorated further: he was stuck at home day in and day out watching TV. He had had to give up everything he loved; boxing training, playing cricket, riding his motorbike, caring for our cars. He couldn’t even stand in the kitchen to cook a meal without feeling pain. There was nothing I could do or say to make things better. I felt helpless, and as a result I too became severely depressed.
The financial stress of my unemployment loomed like a dark cloud of uncertainty over us. There were many sleepless nights wondering how we would get through. I hated it; I had always been so independent, and I despised being in such a vulnerable state. I was reluctant to ask for help from my family; I thought I didn’t deserve the help. I thought maybe if I’d studied and gotten a better job, that we wouldn’t be under such financial stress now. There were people in much more dire need than I was that didn’t have family as supportive as mine, so why did I deserve it?
Christmas/New Year was the lowest, darkest period of my life. I couldn’t even get joy out of writing, which was usually the one thing that could cheer me up. Greg and I were both deeply depressed, and neither of us were able to pick the other up. With most of our friends and family living an hour away in Brisbane, we were extremely isolated. It was easier for most people just to send their thoughts and prayers rather than make the trip to see us. Our situation was too confronting; they didn’t know how to deal with it, or what to say to us.
My mum, who was coming to visit me regularly at Broadbeach, was the one who alerted me to the desperate state of our situation, and insisted I needed to seek help. I could no longer carry the physical, emotional and mental weight of being Greg’s carer all on my own.
In January 2018 I sought counselling for myself. I was diagnosed with severe depression and moderate anxiety. I realised just how much I was carrying all on my own. I couldn’t try and hold Greg above water while I too was drowning.
I felt guilty at the prospect of getting on with my life, about going to see friends, going out for a walk or a bike ride. These were things that Greg couldn’t do, so I felt guilty for doing them, or even talking about them with him. But it was imperative that I did, for my own wellbeing.
Around this time I also started the process of applying for assistance from Centrelink. I applied for the Newstart allowance as well as two separate carer’s payments. I was denied all three. This was my true breaking point; I sat on my living room floor and wailed in tears. These payments could have given Greg and I a little financial reprieve in our time of need, one less thing to worry about. But I couldn’t even get that.
It was pouring rain outside, but I got in the car and drove to Centrelink. When I got there, the staff member informed me that my applications had been rejected because Greg received a worker’s compensation payment, which they deemed enough to cover all of our weekly expenses.
I walked back to my car through the rain, sobbing out loud, not caring who heard me. I called Greg, but he reassured me that we would be okay. We were fighters. We’d gotten this far, we would keep going. And one day we would look back at all we had overcome, and laugh at all the people who didn’t help us.
In February 2018 Greg received a Radio Frequency Neurotomy, a procedure during which a heat lesion is created on certain nerves with the goal of interrupting the pain signals to the brain. Still, Greg’s pain persisted. The next procedure would be the insertion of spinal chord stimulator, an electrical device positioned under the skin near the spine which delivers a pulsed current to the spinal cord which interrupts the pain signals being sent to the brain.
In March I I had a cervical cancer scare. Abnormal pap smear results are common, but scary nonetheless. I was also suffering severe tension headaches. I have had a VP shunt since infancy, and suffered epilepsy during childhood. These headaches became so bad I was physically sick a number of times over several weeks. On one occasion, unable to even keep water down, I ended up in the emergency room.
In July 2018 Greg and I were given a notice to leave our apartment at Broadbeach. The owners wanted to renovate the property, so we had to move out. We relocated to Coolangatta on the Southern Gold Coast, which was the hardest house move we have ever done. Greg helped where he could, but once again, it was mostly up to me to get the place packed up. I also performed the bond clean, with help from my mum and aunty.
In late September, Greg had another surgery to implant the external spinal chord stimulator for an eight-day trial. The day before the surgery, as we drove up to Brisbane, the engine light came on in my car. The timing could not have been worse. I could not believe this was happening, right before Greg was going into hospital. While it was okay for Greg to be admitted to hospital alone, they would not allow him to be released without someone else there to pick him up.
The following day Greg caught a taxi to the hospital while I sourced a mechanic. Once again my Mum came to the rescue, organising for me to have a free inspection with her mechanic. It was a non-urgent problem with the transmission, and I would be able to drive the car back to the Gold Coast and have it seen to locally.
It was not that I don’t like having to deal with situations like this on my own. It is that as a couple, usually you deal with problems together, as a partnership. And throughout my carer’s journey, I have had to deal with so much on my own.
During the eight-day trial, Greg and his specialist assessed the benefit of the stimulator. The results were mixed, so Greg will undergo a second trial mid-November. If this trial is deemed successful, he will have the stimulator permanently implanted, but this procedure will most likely take place in early 2019, further prolonging his recovery.
Following the abnormal pap result, upon further examination I was given the all-clear. X-rays showed no problems with my neck and back, and MRI tests showed no complications with my shunt and no fluid retention in my brain. My headaches were put down to stress-related muscle tension, and I am receiving positive results through physiotherapy. These health scares were a big wake up call to me to ensure I was looking after myself properly.
My role as Greg’s carer has been tough. It has been lonely. It has been unfair. I’ve taken on so much, physically, emotionally and mentally. Greg’s and my relationship has reached breaking point many times. I am 29, and have pondered the impact Greg’s condition could have on my own life long-term, and whether that was the life I want to lead. But I was determined not to let what had happened to us, a year and a half of hell, destroy what we have build over eight years together. Sometimes its hard to see the end to this saga, especially with the more time that passes. I know that although my experience as a carer has been incredibly hard, there are carers out there who have it a lot harder than me. Our situation could be much worse, and I am grateful for how fortunate we are.
Kate Kelsen 