Colin Pidgeon, a guest writer, describes how living with chronic illness has impacted his family life
In his poem Mutability, Shelley wrote:
It is the same!—For, be it joy or sorrow,
The path of its departure still is free:
Man's yesterday may ne'er be like his morrow;
Nought may endure but Mutability.
So, kind of what Keane were singing about in Everybody Changes, but more elegant. And of course, our yesterdays are never like our tomorrows: things change; people change; life changes.
Sometimes change can be good. We can make a positive choice to do things differently tomorrow. We can seek a new, more fulfilling career, move to a new place, take up a new hobby… And yet, at other times, change is thrust upon us. We lose our job, get evicted from our flat, can no longer afford that expensive pastime…
When my daughter, Rosie (17), had a mild dose of Covid-19 in September last year, I never dreamed how fundamentally it would change her life. And in consequence it has irrevocably changed mine, our family’s, and especially perhaps our other kids’.
Rosie has an elder brother (19) and three younger sisters aged 14, 13 and 9. We have all, save the 14 year old, had at least one dance with SARS-CoV-2, that we know of. Rosie and I have certainly had it twice. September 2021 and January 2022 for her, February and June 2022 for me. And with each infection, the stress levels in our home go through the roof. The practicalities of trying to contain the infection and keep it away from the rest of family are exhausting. But the emotional impact is significant, too.
If I tell my 9 year old that she will recover OK, how hollow must seem my words? She has to walk around Rosie’s new motorized wheelchair to get to her desk. So she does not, rightly, believe me. How could she? Mum and Dad could not protect her big sister from this creeping death. And nor, try as they might, can they protect her.
We can do our best of course. We buy high-grade masks, we aim to socialize outdoors as much as possible, and we ventilate our home. But when school is most likely how the virus entered our house the first couple of times, what can we do? We cannot control or mitigate all the risks around us without the help of the authorities and our fellow citizens. At 9 years old, it is a harsh lesson to learn that your leaders and neighbours don’t care enough to try.
Our annual family holiday to Co Donegal nearly did not happen this year. I got Covid again in early June and we fell like dominos: then the 13 year old, then our son. So I took those who were safe to travel away as quickly as I could lest they also succumbed.
Despite all this stress, we did get away, albeit with a delay. For the last 15 years or so we have gone every year to the same house on top of a small hill overlooking fields and the sea. It is a magical place for us, close to the church where we got married. Fabulous beaches within a short walk, mountains close by, fresh air and long days.
This year it was different. We had to adapt everything to our new circumstances. Plan out days ahead. If we visit Glenveagh Castle today (including a 3.5-km wheelchair-friendly loughside walk there and back), we will have to build in at least two days’ rest after for Rosie to manage the consequent fatigue and pain. No mountain climbing this year, but a walk along the old railway track instead. Anywhere the wheelchair can go, so can we.
Rosie did magnificently well in many ways. After nearly a year of learning about what Long Covid will let her do, she has also learnt about what it won’t. She can self-manage, rest and pace. We had read about how open water swimming can be helpful in calming POTS symptoms. So we got into the sea as much as we could. By using her newly acquired inhalers before and after, Rosie could manage 20-30 minutes of bodyboarding without too much pain.
We also managed a kayaking trip. I took Rosie in a two-person kayak so she didn’t have to paddle. We crossed the open sea to an island called Inish Free. A 10-minute walk across to the other side was a marathon for her. Steep slopes are hugely challenging, clambering over rocks suddenly exhausting and painful. But we made it, and we swam in a large rock pool as the Atlantic swell smashed into the rocks behind us, sending cold water and foam showering over us. It was marvellous.
Rosie was too sore to walk back to the kayaks. I carried her on my back, struggling and stumbling all the way. I’m proud of my girl – how many teenagers would suffer the indignity of being carried by their dad in front of strangers?
So we have shown we are mutable. We are capable of change. As a family, we have adapted to our new reality. But some things cannot be undone.
Each year as part of the holiday, we visit Mullaghdearg beach to watch the sun set. In 2006, we scattered our stillborn daughter’s ashes in the waves there. The others walked to the other end of the bay and back, but the sand was too soft for the wheelchair. I managed to drag Rosie backwards (as I learnt to do with prams and buggies) to a rock. We sat quietly together watching the birds on the water and the waves coming in. We looked across to the rest of the family walking happily on the sand.
And quietly, softly, to the sound of the waves, I felt my heart breaking afresh.
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