I last wrote an update newsletter some fourteen months ago. Inevitably, entering a new year has meant the bizarre ebbs and flows of the clock have been much on my mind. Where did all those weeks go? Will life keep on accelerating at this kind of double compounding Ray Kurzweil rate? Or is this just what being fifty plus years old feels like?
Anyway… at the beginning of last year I decided to let go of the immense, years-long struggle it took to get this treatment, and to seek to just live; much like someone who has a medical condition for which they take medication. I felt like I needed to escape – in terms of mental churn and daily lifestyle – the intense, and often smothering mind / body feedback loop.
I started writing and document our medical, mental and emotional experiences with this treatment because the treatment itself is so rare, and there are many people in the NMD world who want to know more about it. It feels important to continue to do it, at times, even though I must admit the irony that, at the end of two and half tumultuous years, life remains defined by small, vitally important, movement and increments. As it always has been.
The update
Physically, last year was pure recovery from the crushed vertebra. Working hard at gym to first understand, and then reclaim, strength lost as a result of the injury. I am about 95% back to where I was, but there are still real difficulties in key core strength areas. The most visible and obvious is walking down slopes, which remains much more challenging than it was pre-fall. Less visible are the mobility restrictions – and weakness – that result from sitting.
As far the impact of the medication goes, well, we’re firmly on the plateau. There haven’t been (m)any eye-popping gains recently. Crucially, however, the body has been oddly capable through the long, arduous rehab. Indeed, both Robyn and I question whether I would have been able to recover to this extent without the meds.
Thankfully, after being forced into three monthly assessment and report visits to the neurologist over the last two years, we received a full year’s reauthorisation from the medical aid Ex Gratia committee at the close of 2025, which means we only have to go back to the doc again in October 2026. There are no future guarantees, but for now we can just get on with life without the bureaucracy and lingering, liminal anxieties about treatment access.
For the first time in twenty eight years I did no personal writing during 2025. Instead, I focused on getting away from the computer and changing my work life, and general lifestyle. I am doing more consulting work and much less corporate writing, and I’m probably spending a third of the time at my desk than previously. This has required taking a chainsaw to free work, speculative projects, and lazy, half-focused creative writing. Which has involved saying no to people a lot more than I am used to. I have adjusted. I hope they have too.
The other update
The other shift has been changing the physical dynamics of life. First, moving my office to the little suite at the front of our house, so I now have to walk out the door, around the corner and up a teeny slope to work, focus properly when I’m at the computer, and then leave. It’s been a refreshing change: more steps added to the daily routine is especially good for me, as has been a dramatic reduction in compulsive email checking.
We also recently took two centimetres off the height of my desk. I have written about the desk challenge before, during the early days of treatment, but here’s a quick summary: I started struggling with desk height (specifically, the arm elevation required to lever myself up) after I crushed a vertebra in 2010. The battle intensified quietly year on year, and Robyn and I have been debating lowering the height a touch for about the last seven years. Reducing the physical and mental strain of getting up has always been attractive – but it’s risky. Conceding on any repetitive movement essentially means waving goodbye to a degree of existing strength. Which is why we’ve held off for so long. On the other hand, though, my father-in-law built this superb item for me 25 years ago, and it is surely naive to expect to be able to hold on to your twenty five year old physical self into your fifties. Neither professional athletes nor average Jo’s nor NMD people can do that.
Winter, as always, will be the true test, but so far the change has been a big wafting wash of fresh air. Suddenly, after many years of complexity, I sit down to work - and get up- without much thought.
Two little centimetres
I took a good long look at the two centimetre chunks of desk leg, perched innocently on the lawn, after Robyn had kicked them away. It didn’t seem possible that such a small, insignificant height could be as meaningful as we hoped it would be; or that fifteen years of fight could ever be packed into such a nominal space. But, right now, much of life seems equally, impossibly, odd. And the current reality is that two centimetres has amounted to a great deal of freedom, between the ears, in the heart, and in the fleshy container that surrounds.
I will – eventually – keep you posted.