Living to the conditions

Huberta Hellendoorn

The news has been read, the weather forecast follows. Nothing unusual: highs and lows, temperatures, fronts, expectations for the week ahead. A menacing southerly is approaching, snow to low levels, icy roads. A warning for those who have to travel is broadcast:

Please drive to the conditions.”

As I’ve got older I’ve learnt the value of the radio’s advice. I’ve also learnt something else. Not only is driving to the weather conditions essential at any time of the year, but it is also important to learn to live to the conditions that occur as part of the ageing process. Slippery slopes and tricky intersections can make our passage through the last stage of our life as demanding as negotiating an icy road in the middle of winter.

When I was younger it was physically so easy to move around, dashing here and there, organising family life with working life, going places. Lots of friends. Snap – this, snap – that, changing tack during a task when something more urgent came along. I enjoyed those years with their challenges of living, I loved my family and nothing was a problem; flexibility and resilience were keywords. I wasn’t afraid of getting old. I had plenty of amazing role models to observe, people whose energy and purpose I admired. I liked their way of thinking: if you can’t do it today, there’s always tomorrow. But I was not at all prepared for the challenges that came when our Down’s daughter had a stroke just before she turned 40.

A new, different timetable had to be established, centred around living to the conditions set by her physical state. Because she had lost the ability to answer the (for her) complicated questions people were asking, I also needed to become her voice. I needed to translate her way of saying things, yet remain respectful of her autonomy. There were situations where a loving-feisty motherhood clashed with clinical common sense. My days were full, and I was grateful for that. I made sure that every day I made time to find a flower to smell, or for drinking coffee or sipping wine with friends. To read, garden, swim, listen to music. I wrote stories for the radio; I wrote a book, then another book, got going on a third. I lived to the conditions.

Oh, yes, I did continue to live that life, relying on a stretchable mind that wanted to cope, even while other symptoms of ageing occurred for my husband and myself. But as I had long known, those with Down’s have an accelerated ageing process, and there is also a link between Down’s, Alzheimer’s and Epilepsy. These were challenges faced by our daughter, challenges that led to her needing permanent hospital-level care. By then, any questions that were put to her were usually answered with a simple “Thank you”. Her ability to construct a sentence had gone. Her beautiful mind and body obeyed the condition she was born with.

But she has been well looked after. High nursing standards. She is always clean, her room idem ditto. Caring staff. I’ve observed so many changes as I sit with her nearly every day. But where is my right as a mother when I would like an answer to my questions? Am I being seen as a difficult one? She’s doing fine. She’s all right. I have been fortunate to have been her translator. None of the other residents have a mother who can do this small task. Gradually, however, I have let go of my translator role. Inside me, my own questions about the next life-changing event burn. I try to live the questions instead of waiting for answers, and I have accepted that many questions cannot be answered at all.

I sit at her bedside, her hand, so heavy, resting in mine. Sometimes she is awake. At other times she’s not. Her eyes open, a small smile, a near-silent whisper – ssssss – which I translate into “good to see you”. Her eyes close again, head on pillow. A kiss. I stroke her brow, my hand gently moves over her greying hair. I know I’m telling a lie when I tell her, “Until tomorrow, schatje”. My head and heart collide when I say these words. I know, and am grateful, that because of COVID-19, the management of the hospital has made a wise decision: no more visitors allowed.

There’s the question, when will that tomorrow be?

My head tries to send the next question away, but it won’t go. It hovers over my heart: “What if …?”

I try to live to this condition but, in the words of Rainer Maria Rilke (from his poem “Pushing Through”):

I don’t have much knowledge yet in grief so this massive darkness makes me small.”

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Huberta Hellendoorn arrived in Dunedin, New Zealand in 1960 and loves living in this city. Her 2009 book about her daughter, The Madonna in the Suitcase, was broadcast by Radio New Zealand National. Her memoir, Astride a Fierce Wind, was published by Mākaro Press in 2017. Huberta is now getting ready to send her historical YA novel Tipping the Balance out into the world. Huberta Hellendoorn’s website is here.

To read more by Huberta Hellendoorn on Corpus, follow these links: A Woman I Am and Speaking Wordlessly.