Life can only be understood backwards but must be lived forwards
28 December 2018. 35 years old, recently single and coming to terms with a 57 year old mother with terminal motor neurone disorder who won’t seek medical help.
I’m in Papamoa, a place I have been coming to since I was a toddler, a place that is good for the soul. Contemplating my last Christmas and New Year with a mother with who is complicated, and my relationship with her, complicated.
It all started back in mid-2017, or at least that’s when we noticed something was wrong. She was on a trip back from Thailand, where she and my step-dad had been living since March 2000. Her speech was slow, we were worried she’d had a small stroke. She brushed it off – she was tired from the flight. Our concern grew when days passed and no change.
On her return to Thailand she sought medical advice. The diagnosis, ‘myasthenia gravis’ a chronic auto-immune neuromuscular disorder that lead to rapid weakness and fatigue of the voluntary muscles of the body. She was given medication to help the symptoms. She didn’t want to or couldn’t take the pills as they were large to swallow.
After a time she told us it wasn’t myasthenia, the doctor didn’t know what it was. It was left there for the time being and nothing was particularly said between family members. We’re not good at talking.
Always fairly isolated and introverted, Mum turned to the internet. Much time was spent surfing the net, when she wasn’t reading, watching TV or walking to get coffee. The internet told her that she had complications as a result of her breast implants, getting them out would fix the symptoms within a month. Being a psychiatric nurse in the past meant she would tell doctors the problem, not the other way around, as a result we didn’t really question this theory, despite our doubts.
Mum called me on my birthday – 7 November 2017 – and all I heard was noise. No words came just a long moan. Complete shock ripped through me and alarm bells really started ringing. I saw her a few weeks later after the implants had come out – no damage or leaking and no change in her speaking. ‘Later this month’ she typed out in her iPhone notes.
Fast forward 14 months and the muscles in the mouth and tongue have given up altogether, saliva pours constantly and is wiped away. Food is difficult to eat and needs to be mashed. It needs to be pushed in as it spills out. Choking is a constant. The legs are twitching (‘my legs have almost stopped twitching’). And the sad ‘end of life’ symptom according to the motor neurone website, difficulty breathing.
In a matter of months I believe my Mum will pass away. How did we get here?
Thought Space 