Sixtyfive Roses by Heather Summerhayes Cariou
Sixtyfive Roses by Heather Summerhayes Cariou tells the story of her sister, Pammy, born with cystic fibrosis, and the effects this has on their family: two parents, four children and grandparents.
Heather, older sister of Pamela, is naturally protective towards her younger sister who is diagnosed with CF in infancy because of ‘failure to thrive’. Pamela, it is clear, is lucky to survive her birth, and lives to the grand age of 26, at that time a most astonishing testament to the power of life to endure despite chronic, progressive and seriously debilitating terminal illness, in which at the time, children were considered lucky to survive into adolescence.
Daily treatments, the constant risk and actuality of hospital admission and the unpredictable trajectories of an illness that can flare up at a moment’s notice, produced a constant underlying anxiety within the immediate family, who were unable to plan ahead, have ordinary expectations, or to grieve fully – Not knowing what would happen or when, they endured a medicalised existence as best they could.
I so empathised with their struggle for normality in the face of incredulity and some latent hostility and incomprehension among members of the wider family, a feeling that the challenges for Pammy and her immediate family were overstated – she lived a long time, didn’t she?! Strenuous efforts were made at home to preserve a veneer or normality at all costs, but it became clearer as I read this often harrowing account, that in fact, the family adapted by absorbing an enormous amount of medical detail into their daily routines, which became second nature, while isolating them from ‘ordinary’ families and spontaneous enjoyment.
Heather is an articulate and expressive author, deftly managing the tide of sweeping emotions that threaten all the time, to undermine precious time spared from the grim reaper.
Hers is an intimate and balanced account of the trauma that everyone endures, when a child of the family is born with a life-threatening impairment. It seems a miracle to me, that any kind of normality was achieved, but in that, there was also the risk that the compromises hewn from the rock of unfairness – medical costs leading to bankruptcy, why me?, the strain that told on their parents – the heroism that procured the illusion of an everyday existence worked against the family too, as they were routinely misunderstood and accused of overstating their difficulties.
The echoes of the challenges that my own family faced, when I made my appearance in the world, are not lost on me. It is a common dilemma that disabled persons face. They do all in their power to achieve the appearance of normality, and because they are successful so much of the time, they are accused of overstating the difficulties they juggle with. Yet, ‘normality’ perches on a knife edge. One fall, one bad crash leads not to minor inconvenience and aches here and there, but to a month of housebound agony, an inability to walk or move quickly…. Having had two bad falls recently, I can recognise the challenge that is the thin line between success and utter catastrophe.
This is a remarkable book, and one which deserves to be widely read.