Now that I am home, I revel in light. When birdsong fills my ears and inspires my body to wake, I am overjoyed by the heat that beams in my window. My cat, Harper, stretches into it as only a cat can, sleek and sun-kissed, but my impression is lacking. When I abandon the sun, it is for colder realities.
I have great thinkers on my team, but no practical progression towards healing the legs. I need some magnets to bounce off my skin, some magnetic field gradients, and some experts to inform and enhance the energy I am currently getting. I am suspended like a trapeze artist mid-flight watching their landing spot disappear. I swing endlessly, focused on the energy I am burning up, and I am getting tired. If I fall it’s on me, because I must be my own advocate for air and energy or building any physical therapy beyond the pain.
It has been almost four months. I’ve started to accept that maybe the landing strip does not exist – but the art of trapeze comes naturally to me, and I am not interested in giving up until I can find some safe ground. Refuge, I know, is often never external, but the MRI outpatient list is roughly one trip around the sun away and I can’t help but notice the clear mark. In the Irish health service, it is up to the patient to make the space-time continuum work between the then of the appointment and the now of the pain.
As my old cystic fibrosis physio would say about training: your body will always try to find the easy way out
Of course, the idea that doctors can claim and confirm a timeline for existence and death is only partially true – the best doctors will tell you this – especially in a system that cannot provide what every party needs. Everyone gets burnt. And, at the same time, anything can happen, sure. The difference now, for me, is the arising of physical pain that obliterates hours in its wake and when I wake, whatever time, it may choose to exist or not.
Now that I am free of kidney dialysis, I want others to be free too
In Dalkey I feel the same thing Matt Damon surely did before me: this is where I’m meant to be
Orla Tinsley: Competing to stay alive should not be our reality, but it is
Orla Tinsley: The safest dialysis experience I have had at this hospital . . . I just had to get Covid to have it
My mind is left to gather and galvanise my body into wakefulness. The internet becomes my best friend and says yes to possible solutions for rippling and prolonged pain on treatment when my teams cannot provide help. I attend a physio Pilates specialist to supply strength, and stretch the shortened muscles that twist and tighten with each dialysis treatment. These women are a gift because no one else offers anything like this. And it is massage that provides the only pain relief through acupressure – this is also not available to me. I am sure the lack of access frustrates care teams too.
It is hard to understand why hospitals cannot suggest or provide someone with these skill sets to elevate mobility and provide pain relief, but there is no one and no one is offered. Midair my toes grasp at the reformer bar as I am working to support my body. It is in repeated sequences we build and I breathe. I add a stick to my repertoire, upon my own advice and consultation, to move through the world. I am reluctant to have any kind of dependency on it and remember everything I learned about how muscles can over- and under-compensate. Or, as my old cystic fibrosis physio would say about training: your body will always try to find the easy way out.
With my new temporary fix, I oscillate between long-bearded dancing Fagin vibes and when the sun is shining, I think more about J-LO in the Get Right Video. I tell myself . . . just air out the waistcoat! In the meantime, I ring the neurologist again and he moves fast to provide a second opinion. That’s how we arrived here, waiting for that MRI the second doctor ordered a month ago.
The daffodils on the roundabout gather golden and glowing as the sun glitters on the ground. I marvel at their beauty
Jessica Fletcher, another icon, taught me some sleuthing skills to get to this self-sufficient point. If I keep investigating, I will unmask the terrible pain terrorising my body and be home for tea and one last laugh with the mysteriously bland police chief, Mort. Even in the most extreme, murderously painful situations, the mundane maintains and the plot-line endures, maybe. Of course, sometimes, the cure is a good nap.
Part of my character is that I am a warrior, not a worrier.
I stay in the sun seeking something beyond reality as long as I can, sinking and searching with heat in my heart. In the car, on the way to the hospital, the daffodils on the roundabout gather golden and glowing as the sun glitters on the ground. I marvel at their beauty when the driver says: “Ah sure where have you been! They won’t be around for much longer.”
The fleeting nature of beauty entrances as his words cut clear and we drive faster along the road. That Edward Hopper painting comes to mind when the sun washes over my ankles and calves and hips.
I hug my knees to nurture all the places I hurt and then I pick up my stick and move into the world.