I know what you’re thinking: Aren’t those freedom passes for OAPs?
The answer is yes but also for disabled people. Am I disabled? Does a terminal illness like incurable cancer count? It turns out that the answer to both is yes and applies to such provisions as blue badges, PIP benefits, disabled railcards, dial-a-ride vans and the Access Card, the last of which helps with access to sporting and arts events, for example. It would be a huge tangent to go into the blurred line between disability and illness but in all the cases above, more important is the level of need, as assessed in variously intrusive ways.
This freedom pass doesn’t only provide me with free travel on London’s buses, tubes and (most) trains. It works 24 hours a day, which is better than old age pensioners get. And once I proved further that really does apply to me by losing not one, but two of the things (let’s put that down to the brain cancer and not pure ineptitude!) there was a brief window around late summer, where the arrangement seemed to be working well and I was able to get myself into town without thinking much of it. But as Autumn gradually arrived, and with it another load of chemotherapy, so did a general deterioration in my overall health. And before I realised how far this was going, the eight minute stroll to the bus stop had become a breathless and exhausting fifteen.
And now I’m left with the imposing feeling that It doesn’t matter how much my travel is subsided, leaving the house, let alone doing anything, is now a big challenge. Gone are the days where the act of travelling for hours on end means nothing for energy levels – if I make it out at all, the journey alone now takes a whole day out of me. That top deck of the bus or stairs to the train platform? Forget it! No lift at the station? That’ll be three steps at a time in between taking a breather. In a hurry? Bad luck – wait for the next one. Amongst the strategies I have for getting used to this newfound lack of mobility is that – of course – many people get by with far greater difficulties to manage. What remains to be seen is what this decline in health, wellness and disability will look like for me.
Despite being on chemo and every little aspect of life becoming more difficult to get through, I’m fairy stable in terms of need. I can feed and clothe myself and remember to take my 30 or so life sustaining tablets morning and night, without messing up the dosage. On a good day, I can go outside for more than a walk round the block and (with some careful spacing in the diary) engage in a variety of sedentary activities, like sitting, listening and wiggling my fingers over a keyboard as required. As well as having been essentially taught to read by my mother around three decades ago, this dyslexic is most grateful for having been taught to touch type at around the same time. Yes of course I could do all of these things at home, but all sorts of writers like to sit in cafes, right? Plus retraining some kind of mobility has to be a good thing and has let me take advantage of all sorts of opportunities recently.
I was honoured to receive the Douglas Macmillan award for fundraising, having been selected from a list of fifty one people by an apparently unanimous panel. This is quite something as I haven’t raised the most or been the most active in community engagement, government lobbying or generally raising awareness of the issues. But ever the all-rounder, it could be said I’ve done a little of each, so wasn’t exactly going to turn it down. The only problem was getting myself to Birmingham for the ceremony. Now – Macmillan of course supported with expenses etc. but it was still left to me to actually make my way to the Midlands for the afternoon tea ceremony. Packing has become a bit of a logistical challenge and I found myself travelling through some kind of hurricane in my suit and packing colostomy supplies along with upteen medications, including separately packed chemo tablets, which need to be handled with rubber gloves as they’re that toxic.
But make it I did and, with my brother Jon joining in the celebrations, felt overwhelmed as I watched others collect less prestigious awards, before being made a fuss of, perhaps even lauded as the presenter read out my award citation. I’d been given five minutes to say some thank-yous. Of course, I took over ten. Afterwards, and just as fulfilling in a different way, I met up with Max and Tim from a uni-era ska-punk band. It’s amazing, considering we’ve met a handful of times in the past two decades, how easy it was to talk to them with the dark humour flowing from me at least as quickly as the beer for them. Due to aforementioned mouth-related side effects, I was on the tap water. Rock and/or Roll!
Once I’d gone home to recover a little, a similar, but more ambitious journey followed. It started at the House of Lords to observe the Assisted Dying debate, where Peers talked a lotand frustratingly slowly, about the imminent deaths of people like me. Or were they? As this Bill makes its way through Parliament, the plight of terminally adults is rarely directly mentioned. Of course, with an appearance fee of around £350 per day, the opportunity for bishops, hereditary and other life peers to aimlessly drone on to filibuster and reinforce misinformation is clearly far more important. I’ll just find a corner to whimper in, shall I? Whilst you all clock off by 3pm to make that nice dinner reservation?
But I digress. After having sat on my hands for around two hours, I went off with a couple of others with similar stories to put the world to rights over a sandwich and (another tap water for me) before heading up to Rugby where Jon would be hosting our family thanksgiving the next day. After all, we have that American heritage to celebrate and I thoroughly recommend choosing a date that isn’t the actual date but – and this is the crucial bit – everyone is available! I also recommend abandoning other needless traditions like turkey if people want to eat turkey. Home made and wood fired pizza worked out really well, thanks. That is, once I waited patiently for the pizza to be cold enough for me to eat an I discovered that pepperoni also attacks my mouth – the hard way!
The next day, I had a decision to make. In the preceding week, I’d recorded a plan B presentation in case I needed to just go home, but a 15 minute speech at a music education conference is a big enough deal to attempt a live performance. It says a lot about my current state that a very easy going long weekend now needs such contingency planning. But on this occasion, the ‘show must go on’ mentality was enough and (fuelled by some nice fluffy American style pancakes) I got a lift to Nottingham in time to settle myself into another conference centre linked hotel and ready to speak to an at least half-packed room full of music education industry types. I sort of used this as a ‘goodbye’ to the profession, so despite the bleak financial state of the sector, left those watching with the message that if we care enough and keep going consistently enough, that will be enough.
Only time will tell. Unfortunately, I don’t have much of that left. But how much? Some days, I feel noticeably better and it’s hard to believe I’m expected to be dead shortly into next year, if not earlier. Last week, with my second chemo cycle coming to an end, I was surprised to find myself with more energy and everyone I met was keen to tell me this. Then yesterday, reality hit with a bump and I’m proud to say I made the trip from bed to living room.
Deterioration certainly isn’t linear. Which is annoying, because I could have used that freedom pass loads more last week if I’d known I’d be feeling better. That said, I ended up with quite a few visits in the time and I definitely know who my friends are. They know who they are too – thanks for all the offers, even if I had to cancel! I know that no one would begrudge me this, but it still bothers me.
Oh well – chemo tomorrow and I doubt I’ll care much about social engagements or even the freedom of the city before long.