Читать книгу Get me to 21 - Gabi Lowe - Страница 5

This is the story of Jenna Lowe, her family – mom Gabi, dad Stuart and sister Kristi – and the concentric waves of human connective tissue – cousins, uncles, aunts, grandparents, friends, lovers and strangers – who entered, with open, brave and broken hearts, the kingdom of the sick, where Jenna dwelt in the last years of her short comet of a life.

It is an account of a battle against impossible odds: disease, time, human error, the vagaries of medical insurance and, in the end, death – that great absence.

It is the story unadorned.

It is an account, from the heart, of a family confronted with multiple grief and suffering, who somehow kept going, buoyed by the strength, love and determination that blossomed in the wound.

Jenna Lowe died on Monday, 8 June 2015, four months before her 21st birthday on 28 October. She had hoped to make it to the celebration with the help of a pair of donor lungs to replace her own, which were steadily being throttled by the then under-diagnosed, life-threatening pulmonary hypertension.

With truly superhuman powers, this family girded its loins against death and the challenges and impossible demands of rare disease.

In the years since Jenna’s death much has been accomplished in raising awareness about PH, not only in South Africa but also in the US, the UK and Europe. The Jenna Lowe Trust and the boundaries it has succeeded in shifting – the provision of treatment and medication and other aids for those living with PH – is only one of Jenna’s legacies.

She lives on also in the academic award that bears her name at Herschel Girls School, which she attended and where she excelled.

The lives of the Lowe family and that of my own are intertwined through a friendship spanning almost 30 years. As a young couple, Gabi and Stu, glamorous and successful, outgoing, intelligent, with a wide circle of friends, radiated a tangible lust for life. We called them our “Peter Stuyvesant” friends after the cigarette ads of the 1970s featuring healthy, tanned jet-setters living the life.

Theirs was a life built on poise, resolve and hard work.

We were introduced to Jenna in 1994 in Gabi and Stu’s sunny cottage in Oranjezicht. A baby with curious, dark playful eyes, Jenna took it all in from the start. The world, for Jenna, was a wide open canvas. Later, when she found the language to articulate her investigations of the universe, she could mistakenly come across as precocious.

At eight, Jenna wrote a book, a story about a girl who falls ill after stepping on a poisoned thorn and who must find a magic cure. The story for the child in The Magic Bissie Tree ends happily, the sickness beaten back.

But in real life, not for Jenna and all who loved and came to know her.

It was philosopher Susan Sontag, in her now classic 1978 “inquiry”, Illness as Metaphor, who defined the two kingdoms – that of the well and that of the sick – and reminded us that we all carry dual citizenship. It was Sontag who remarked that “the most truthful way of regarding illness – and the healthiest way of being ill – is one most purified of, most resistant to, metaphoric thinking”.

Here it is then.

The story of a family and a community, an account of horror and triumph, exasperation and courage.

A real story, stripped of baubles and platitudes, purified of unnecessary metaphor, carried by tenderness, wisdom and love.

This is what it takes, blow by blow, to fight back.

And what it takes to get up again when you lose.

Jenna Lowe fought to live. Her remarkable courage and wit are revealed here in Gabi’s account not only of her daughter’s slow death, but also her full, busy and beautiful life, who Jenna was before PH, according to her lioness of a mom.

You will find here on these pages also the courage and the wisdom Jenna found between the fear, anxiety and the pain, while knowing and understanding all the while that she might not make it.

Death, be not proud.

Marianne Thamm

Cape Town, May 2019