↘️ Descending
Learning to Be Vulnerable in Public
Around me, the vibrations of organic techno soothe my body. As I lift up my heavy eyelids from a migraine, a festival is under construction. Fluorescent colours, spray paint and a giant jellyfish fill my vision. I am waking from a migraine in a community centre.
This is a big deal for me. For years I have locked myself away whi le in chronic pain, fearing to be vulnerable in new spaces, struggling to ask for help with what I want in life. I was either housebound or a tag-along. How could I make plans beyond my house when I couldn't count on my body to make it? During intense times, a week can pass before I go for a walk again. My motto has been to plan optimistically and be realistic in the moment. Plan when you can for what you want to do and see how your energy is on the day. Sadly, with chronic fatigue and migraines, I've learned that my energy is often too low for a lot of activities, and I ended up disappointed. But what if I could ask for help, get a wheelchair and have a carer to guide me through the pell-mell of a city?
That's when I decided to be more vulnerable in public. To trust my friends to keep me safe, and to be able to show my emotions and weaknesses publicly. To teach others about the crippling effects of illness and how people are managing it. I've learnt so much online, like from the great disability influencers Zara Beth and Chronically Jenni. Now it's time to put their skills to the test. To plan, perchance to dream.
So I got a wheelchair, first from the trash of a second-hand shop (in fine fettle as you can imagine, lovingly sprayed gold by friends), then I made the £100 investment to get a basic model that, while better, still doesn't really fit me or give me the motorised independence I want but can get me around with a helper. It's uncomfortable and strange, but at least now I can plan again! One of the first wishes of my new freedom was to ask for a lift to the beach. To feel the open wind and expand my vision beyond the pains of my mortal coil into the wide stretch of a wine-dark ocean.
The release of being in an open space is huge. The sunshine kissing me back into life like a loved one on my forehead. I am but one small speck in a vast and magnificent world. A bacterium in the earth's body. Tiny, almost insignificant. But not quite. Still, I have a soul; I have a fundamental essence that holds me as part of my surroundings. Slowly my worries fade into the spaciousness of this meditation. To live and breathe is enough to put a smile on my face.
With that joy as my fuel, I start to plan further. To look beyond the comfortable and confront the necessary. In my case, it was a visa appointment I had missed three times. It will be hard, but possible.
Fast-forward a few weeks of planning, and there I was at Utrecht Station, on my way back from the immigration centre, with the temporary residence stamp secured. My carer pushed me along the platform and lovingly insisted I put on my headphones to block out the commotion. The trains were cancelled, and Dutchies filled the platform like miserable fans after a lost match. At that moment, in sweltering heat and crowds, I faded into a migraine. I drifted in and out of consciousness throughout the journey home, clasping my hands, practising square breathing and listening to a joyous fantasy book. I held myself together. My anxieties of such weakness, fears of danger and disability kept at bay.
As we exited at the station, we discovered that the lift was out of order. In my aura (post-migraine distortions), I couldn't walk properly. A dilemma many disabled people face. We rolled to the platform stairs and planned to take it slow, huddling together like penguins for strength. Yet as we began to descend, the heavens opened up. Rain, hail, thunder poured down in a tempest. I started to slip. Bystanders offered to help, shouting in the storm; my carer laughed in the madness of it. I held on so tight to the handrail and consciousness, scared of losing control.
As I rested on my sofa later, reflecting on this moment, a deep sadness struck me. Like a blow to the stomach. This is what it feels like to be disabled in a climate event. A small taster of the vulnerability, the risk.
It's hard to keep pushing myself to get out, to this colourful community centre, to appointments, but I will keep trying because I have the will to be part of this beautiful cosmos, the hope to believe in improvement, and a drive to protect the vulnerable from suffering. Onward.
I'm excited to now bring you audio versions of my blog with a swish secondhand microphone. If you can donate a tip to help me fund this and my writing, that would be really appreciated.
I have also created a list of books that have moved me on Bookshop UK - a supporter of local bookshops to break the Amazon monopoly. Check them out. If you fancy one, buy it there, and I will get a 10% tip.
Little helping hands like this help me keep writing. Thanks!