Happy Stumpiversary

One year ago today, my life was forever changed. Friends Jo-Anne, Andrea, Ross, and my neighbour Alexis, along with emergency workers, broke into my apartment and saved my life. A day later, and witrhout them, I would either be dead, or have quite significant brain damage.

Other close friends and family Sue, Michelle, Karran, and Michaela were soon by my bedside. Over the next few weeks, the outpouring of love and support from so many people filled me with immense gratitude. As I celebrate this anniversary, I’m forever grateful to each and every one of them because it’s…

My Stumpiversary

Since arriving back from an overseas holiday, I had been feeling unwell, which I had put down to the flu or maybe COVID. More seriously, as a result of a cut foot, an infection was rapidly taking over my body, resulting in sepsis and a lower right leg amputation.

Another contributing factor was the undiagnosed diabetes. Upon entering the hospital, I had a blood glucose level of 78, meaning there was a high risk of death or brain damage.

Each year over 8,000 people in Australia have some kind of amputation, with varying causes including accidents, cancer, and the combination of infections and diabetes. I understand rhe amputee population in Australia is steadily growing at a rate of 2.2% per year. Men are disproportionately affected, making up 72.9% of amputees compared to the general population. Australia also has a high proportion of diabetic-related amputations, ranking second within the OECD. It all makes sense.

My own experience is similar to that of Clayton, a peer support volunteer with “Limbs For Life” who called me during those early days in hospital. He described his own life-changing experiences following a walk on the beach, a cut foot and undiagnosed diabetes leading to his own amputation, with significant changes to his personal life and career.

Fueled by powerful pain medication during the early weeks of my hospitalization, I found it hard to think clearly. Simple emails and messages of support required multiple readings before I could even attempt a response.

I also had to put modesty concerns aside as nurses helped me with the most basic of human functions.

“How are you REALLY?” was a frequent early question from concerned family, friends, and medical staff. At first, their responses to my “I’ve had a couple of tough days, but mostly I feel pretty good” seemed laced with disbelief. I noticed there were two main ways in which people responded. First, there are those who take my positivity at face value, offering enthusiastic support like, “You’ve got this!” And secondly, there were others who approached the situation with a different perspective, perhaps wondering if the full weight of what happened might hit me later, once the hospital’s comfort and support system fade. And maybe that’s a possibility, even now, a year later.

In the weeks leading up to my illness, I visited Vietnam and Cambodia. Among the people I met there were some who had lost limbs to landmines. In the grand scheme of things, millions around the world have lost limbs, and they’ve faced this without the privileges I’ve had, living in an affluent country with a top-notch health system. “I feel lucky to be alive,” I told my friends, “like I’ve been given a second chance.”

The period at Sydney’s Sacred Heart Rehabilitation was more than physical therapy. Mindfulness techniques helped me manage the mental toll, while mirror therapy aimed to retrain my brain to accept the new reality of a missing lower leg.

In total, I spent close to four months in hospital. Preparing for discharge was always at the forefront of my mind, including whether I could navigate in and out of the apartment independently? Would I be able to shower independently? And what modifications, if any, might be necessary for me to live on my own? Would I always be in a wheelchair, or would the prosthetic allow me to lead a “normal” life?

A good friend, Michaela stayed with me on the first night home. Although I went to bed that night feeling fairly good about things, I quickly found myself in tears. “I don’t want everyone to worry about the tears on the first night,” I told her the next day. “I don’t want them to think I’ve fallen into a deep depression now that I’m home after the safety of hospital life,”. “The tears are perfectly normal,” she said. “Maybe there will be more tears in the future, and likely there will be difficult days.”

Early on, I realised it wouldn’t be a simple linear progression from amputation to wheelchair to prosthetic. As I’ve read in online amputee forums, many people find their prosthetics don’t fit well, or they cause irritation to their stumps. Recently, after heavy rain, the lift in my apartment block stopped working, which meant it was harder for me to get in and out of my apartment. It was a reminder that I could easily find myself housebound, despite my apparent current mobility.

The National Disability Insurance Scheme (NDIS) has provided me with a range of supports, including a transportation allowance, allowing me to catch taxis and ride shares. Mostly though, I use public transport where the interactions have been both good and bad.

Sometimes people don’t instantly notice I still have mobility requirements, especially now that I’m walking independently, without crutches. Even though my prosthetic remains fairly obvious, many people never look down (especially when they’re using their mobile phones).

After four months away on sick leave (as a long-time public servant I’m lucky to have plenty of reserves), I returned to work part-time in November. At first, it was really hard balancing work with managing my diabetes and the additional demands of an amputation. I got tired pretty easily. It often felt like twice the effort compared to someone without an amputation. For example, walking 5,000 steps for me is akin to 10,000 for others.

The dedicated Wednesday off work for medical appointments and rehabilitation activities like swimming and physiotherapy has been a welcome relief. However, fatigue persists, sometimes forcing me to spend most weekends resting in bed.

My workplace (the ABC) has been wonderful, both at a personal level (lots of colleagues reaching out, visiting, and sending through gifts) and at a more institutional level by allowing me to work part-time. I’m optimistic about returning to full-time work later this year.

The amputee Facebook group I joined has been invaluable as a guide. Discussions there shed light on the varied experiences of returning to work for example. Some, like a bank employee facing ongoing medical challenges, have struggled for years even with a part-time return. Others, like a remarkable quad amputee, transitioned from part-time to full-time office work.

Challenges abound, though. One small business operator spoke on the group about a gradual return to running his business, until ultimately closing it due to compounded difficulties including pandemic-exacerbated mental health issues. However, there are also inspiring stories. A few weeks ago, the Sydney Morning Herald featured Joey, a young man from Newcastle who returned to work as a plasterer after two years. Now, he’s even training for the Paralympics! Go Joey!

For many, the journey back to work is arduous, and for some, it remains unattainable. The Facebook group truly helped me understand that everyone’s experience is different. There’s no single answer to the ever-present question for new amputees: “When can I return to work?”

As I approach my “stumpiversary” (as it’s sometimes known in amputee circles), I’m feeling both positive and reflective. I’m consciously aware of how lucky I have been, supported both institutionally and personally. But not everyone is so lucky. Many people struggle, find themselves isolated, or are unable to navigate the associated complexities.

Some Facts from Limbs for Life

In Australia, a significant number of people live with amputations, with estimates suggesting over 160,000 individuals as of 2019. This constitutes the highest physical disability in the country, particularly affecting those with major amputations (around 50,000). The amputee population is steadily growing at a rate of 2.2% per year. Interestingly, men are disproportionately affected, making up 72.9% of amputees compared to the general population. Australia also has a high proportion of diabetic-related amputations, ranking second within the OECD. The total cost of amputations in Australia was a substantial $1.7 billion in 2019/20.

A variation of this also appeared in the national magazine, Limbs For Life in July 2024 https://www.limbs4life.org.au/news-events/amplified

Amplified-Ed-2-2024