It has been a full week of deep involvement with the limb loss and limb difference community, balancing personal rehabilitation with community connections.
On a personal front, I’ve started some therapeutic activities as part of a clinical trial focused on addressing phantom limb pain (PLP). PLP is a complex medical issue where discomfort originates from a limb that is no longer physically there. The trial aims to see what methods actually work and what doesn’t help address this unpredictable condition.
Over lunch yesterday, one friend shared his battle with severe pain—the kind of intense pain that prevents sleep. Even during that lunch, my friend noticed my residual leg twitch a few times, demonstrating how varied and involuntary the sensations can be.
My therapeutic activities are designed to address the neural miscommunication:
- Left/Right Identification: Visual exercises to help the brain recalibrate its map.
- Sensitivity Testing: Determining what my residual leg can feel.
Both of these are precursors to eventual mirror therapy, where visual input provides the brain with a plausible image of the missing limb moving normally, helping to recalibrate the brain map.
The discussion about PLP occurred at a lunch yesterday for amputees in Sydney hosted by the organisation Limbs for Life. These gatherings are invaluable. The shared experience allows for conversations that move very quickly to a deep level, whether we are discussing frustrations or shared joys.
This deep connection is what motivated me to start a personal project focused on collecting amputee stories—the unique narratives of limb loss and limb difference. The aim is to highlight the incredible resilience and varied experiences within this community, and then to offer a resource that might be useful for people with limb loss and limb difference, and their family and friends.
The accounts I’ve gathered so far demonstrate some compelling journeys of transforming trauma into purpose:
One story highlighted an uncompromising philosophy of “tough love” instilled by parents. Despite intense childhood bullying, the individual’s father provided pivotal advice that forced him to reframe his situation by asking: “Why not you?” This simple question completely changed his perspective, transforming his missing limb from a source of torment into his “greatest asset.” This philosophy of simply “getting on with life” is exemplified in his continued drive to push physical limits, including trekking the Kokoda Track twice, all while managing chronic pain.
Another powerful story came from a prominent advocate for Aboriginal and Torres Strait Islander rights whose path to amputation began unexpectedly in 2020 with a Charcot foot diagnosis, a severe complication of Type 2 diabetes. She refused to accept the passive patient role, taking control to choose amputation for pragmatic empowerment. Waking from surgery, the greatest distress came from the immediate institutional failure to manage expectations: the conditional word “if” instantly replaced the confident “when” regarding receiving a prosthetic. This lit a fire in her. She transformed her rehabilitation into an urgent, full-time commitment, remembering thinking, “I feel stronger now than I did before I went in for the amputation.”
Sometime next year, I’ll share these stories here, and on some other platforms.
On Friday night, my friend Michaela and I went to see the show Sing It, Louise upstairs at the Oxford Hotel. It was a good fun Broadway Tunes sing-along show inspired by Marie’s Crisis, an iconic, acoustic show tune piano bar in New York City’s West Village. The original New York venue is known for its intimate atmosphere where patrons gather around the piano, singing their hearts out alongside the pianist without a microphone, creating a spontaneous community vibe.
We had a terrific time, though didn’t stay for the whole night because, well, we’re simply “getting a bit old these days” and appreciated an early night.
On Saturday, I had a lovely catch-up over coffee and cake with Andrew, whose blog I have followed for years. https://fromthehighrise.blogspot.com/ It was a terrific meeting as we discussed our changed and changing lives right now.
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