The Last Right by Marianne Thamm (my reading book .txt) 📗

in suffering: to elevate suffering to the level of one’s own perspective and to transform it into an aid for one’s way of seeing.”

– Rainer Maria Rilke

IN 1977, SUSAN SONTAG, iconic American literary essayist, novelist and activist, wrote a short but ground-breaking text, Illness as Metaphor, an analysis of society’s attitudes towards illness, specifically cancer and tuberculosis.

In her introduction, Sontag identifies a state of being or the emotional landscape that those who have lived with illness or disease – or those who have loved and cared for someone who is ill – know all too well.

Sontag wrote: “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later, each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” (Sontag, 1977)

For most of his young life, Craig Schonegevel did not hold dual citizenship. From the moment he was diagnosed at 12 months with the genetically determined and extremely variable disorder, Neurofibromatosis type 1 (NF1, also known as Von Recklinghausen disease), he forfeited his “good passport” and took up a reluctant permanent residence in Sontag’s “other place”. (See Part 2, Chapter 3 for information on Neurofibromatosis type 1.)

Craig’s first major surgery took place in 1988 when he was seven and a half and doctors at the Red Cross Hospital in Cape Town diagnosed a brain tumour, a cystic cerebellar astrocytoma, at the base of his skull.

It was during this delicate seven-hour operation that Craig’s abnormally high blood pressure again came under the spotlight. It would later be diagnosed as bilateral renal artery stenosis – a narrowing of both arteries to his kidneys – and become a very serious complication.

The operation for the brain tumour and the subsequent three further surgeries (one unsuccessful) in London to remedy the blood flow to Craig’s kidneys and which saw him (and Neville) spend over two months at the Great Ormond Street Hospital for Sick Children, marked Craig and his parents’ passage into the kingdom of the sick.

In his short, 28-year life there were brief stretches of respite between the ages of around 10 to 23 when Craig was able to lead an “ordinary life”, eating food he enjoyed and making connections with other people. He attempted and accomplished a measure of success doing some of the things he loved, including training as a personal trainer and playing golf.

But while the NF1 and his body might have been less of a concern or a distraction during those more carefree years, the social isolation Craig had experienced throughout his childhood and later adolescence left lasting and lingering emotional wounds.

In a handwritten diary he kept from 2003, Craig often remarked how the other realm, the realm of the well, was a foreign country to him. On his frequent walks on the Port Elizabeth beachfront he would observe apparently carefree couples and their children and wonder what it might feel like to be like them.

Things that are taken for granted by many people come with such great effort for me. The emotion becomes overwhelming when I think of how I will never lead the life I wish or attain the things I wish to acquire and achieve. Then again, everybody in life has issues or circumstances holding them back. But still, I wonder what “normal” would feel like, he wrote on the first page of his diary.

Six years later, in 2009, after the body that he had tried to look after and take care of so fastidiously seemed to “turn on him”, he decided he could no longer continue to live.

Towards the end – while Craig was extremely health conscious, regularly went to gym and jogged and swam long distances – he feared his body would succumb to further lesions that had formed, causing painful obstructions in his colon and that resulted in further agonising surgeries.

The medical prognosis began to look bleak also as, daily, new fibromas (subcutaneous swellings due to a growth of the cells that surround nerves) formed beneath his skin and tumours grew between his muscles. Craig became increasingly unable to imagine a future alone, without his parents to help and support him and in possession of a body that was becoming increasingly difficult to inhabit.

He wanted to “leave”, as he wrote, “before the real Craig” had been completely obliterated by the disease.

And his fears were far from imagined.

In a 1999 book by Joan Ablon titled Living with Genetic Disorder: The Impact of Neurofibromatosis 1, the author documents 54 cases of people with NF1. (Ablon, 1999) (See Part 2 Chapter 3 for a comprehensive definition of NF1 as well as a list of manifestations and symptoms.)

In her introduction Ablon writes: “Becoming familiar with the seemingly enormous range of possible symptoms of NF was a sobering and complex educational experience. I marvelled at the coping capacities of the persons that I interviewed. Most of these dealt not only with the immediate material features of NF1 but also the life consequences of serious learning disabilities and the uncertainty and insecurities spawned by their knowledge of the possibility of progression of physical symptoms. Societal stigma awaited them at every turn, and the spectre of ‘The Elephant Man’, long misdiagnosed as having had NF1, haunted many of them from their teenage years. Was this the future they must look forward to?”

Craig referred to it as “the green book”. Covered in sturdy plastic, it provided him with ample evidence that his life and his health, rather than reaching some bearable plateau, would, in all likelihood, grow increasingly challenging.

Taking all of this into account, how should we view Craig’s desire to end his life? Was it a suicide in the generally accepted definition of the word?

As former Methodist Bishop, Rev. George Irvine, points out in Chapter 13, he is of the opinion that Craig’s death was a self-killing rather than a suicide.

What’s