Choice: the act of deciding between available options
Reading this week about the death of Advocate Robin Stransham-Ford who had legally won the right to assisted dying, made me think about what having a choice really means. It reminded me of a piece of writing by an American woman, Brittany Maynard, who was diagnosed with terminal brain cancer aged 29. What struck me in what she shared about why she was a proponent of assisted dying, was that she was not choosing to die and she did not want to die, but she was dying. Her choice was to die with dignity.
In speech therapy, we have a term called ‘forced choice’. A child is offered two alternatives and encouraged to choose one. For example, “Would you like the car or the ball?” It’s a choice most certainly, but not a free choice. The type of choice that people with chronic illness face.
After almost four years of good health facilitated by taking two Salazopyrin tablets three times a day, I reduced the dosage to two or no tablets on the advice of a gastroenterologist in Johannesburg. The active ingredient in Salazopyrin is sulfasalazine which has an immunosuppressive and anti-inflammatory effect. Although the gastroenterologist found evidence of active disease (which was asymptomatic), he believed that the Salazopyrin was no longer necessary or could be reduced with no significant effect on the disease. What was not taken into account was that because I was asymptomatic, I believed the disease was no longer active at all. I had therefore lived a life without the fear of becoming really ill again. But as soon as I knew that was a possibility, I believe the stress contributed to a relapse. It was also a time of major upheaval as I had completed my Masters in Speech Therapy at the University of the Witwatersrand (WITS), so was leaving my boyfriend of three years, my practice, many friends and my family in South Africa to go and live and work in London.
I arrived in London at the end of July 2001 and started work on the first of August at a National Health Service (NHS) Primary Care Trust. I was speech and language therapist on the pre-school special needs team who visited families in their homes. Many of my families were asylum-seekers from African countries like Somalia and most of the families I saw lived on council estates. It was to be the start of my love for and strong belief in early intervention (working with families and their children from birth to three years). It was a time of deep fulfilment as well as deep sorrow for the challenges faced by the families and children on my caseload. I saw suffering almost every day and was in awe of the resilience shown.
At the same time, I was becoming more and more ill. Unused to not having private medical care, I struggled with the idea of being unable to choose a doctor, but having to register with a general practitioner dictated by my postal code. I did not register. By December, I had to get off the tube at every stop that had a toilet. I knew every public toilet and all restaurants, pubs, bars or shops that would allow the use of the bathroom without needing to buy anything. I lost so much blood that my haemoglobin level when tested in South Africa after Christmas was less than 6.0 (per decilitre of blood) with the normal range being between 12.0 and 15.5 for women. I was in pain at all times, which varied only in intensity, never in absence or presence. And because I had a chronic illness, I believed that I couldn’t tell anyone how sick I really was.
By the time I flew home to South Africa for Christmas, I was too ill to try and hide it. In January after being examined by my trusted gastroenterologist in Cape Town, I was referred to a specialist surgeon. My colon was no longer able to function effectively and the lining was now so thin and damaged that perforation was a possibility. This would have meant that I could die of septicaemia. But it was not immediately life-threatening. I was told that I still had a choice of whether or not to have my colon removed but if I delayed, it would most likely become an emergency life-saving operation. It hardly felt like a choice- with death being an available option.
But in truth I did have a choice. Unlike Robin Stransham-Ford or Brittany Maynard, I did not have the choice of dying or dying with dignity, I could choose to live. And I chose.