After submitting the doctor’s report on the 24th of November I ran out of medication on the 17th of December. We only secured reauthorisation (for a three month period) on the 18th of January, with new medication arriving on the 24th.
I found it impossible to avoid the idea that the medical aid was retracting its grace. This fear was compounded by a lack of communication. We received a series of promises for a decision by a particular date throughout the festive season, all of which sailed by without a word.
I believe the simplest explanation was surely the right one: the big decision makers were all on holiday, and only big decision makers sign-off on a bill this large.
The fact that I don’t handle my own application was a compounding factor. It’s in the hands of the NGO that secured the initial Ex Gratia approval. They clearly didn’t perceive that before the application would get to the Ex Gratia committee it would spend three weeks on a conventional track, inevitably to be rejected. Nor did anyone seem to realise we would need to start the entire Ex Gratia process from scratch, resubmitting all our financials and tax documentation to prove we can’t afford R2 million every six months. Understandably enough, given that we were in the thick of the festive season, communication dried up.
As good as it can be to receive the support of an NGO in navigating the seemingly impossible Ex Gratia terrain the first time round, the flip side is that you end up locked out of your own life in crucial moments. When things go strange, you have no choice but to sit and wait for your new custodians to do something, or not. To communicate, or not. Throughout, I thought of the lyrics of the Kings of Leon song, Comeback Story:
I walk a mile in your shoes
And now I’m a mile away
And I’ve got your shoes
At the level of raw strength, the sudden withdrawal of medication didn’t have much impact. However, in the week before receiving more juice I started to experience a few coordination wobbles. The wonderful steadiness that came with the treatment felt like it was slowly waning.
Most significant were the tongue fasciculations. These are twitches and convulsions that occur as a result of motor neuron decay. I’ve experienced them in patches since my early twenties, sometimes for sustained periods, and generally as a response to stress. The cramping and twitching happens in the back half of the tongue - the part we don’t really think about, which runs into the throat. I haven’t had a fasciculation bout for several years, but when they do occur they generally last a week or two, then fade away.
This time was utterly different. The fasciculations started the day I stopped taking the medication. They were sustained and severe, and at one point so regular that they bruised my larynx, magnifying the creepy strangeness fasciculations always deliver. Fascinatingly, they stopped about eight hours after I took my first dose of the newly arrived second batch, and I haven’t had a single flicker since. It seems pretty clear that yanking this medication away suddenly has a dramatic and immediate impact on motor neuron function.
I find it tricky to report on all this. I want to be as balanced and objective as I can, for many reasons, but mostly because my process matters to other South Africans who are seeking the same treatment, without much idea of what it entails. I don’t want to under report, and I also don’t want to over dramatise. So, I will simply end with this:
The last five weeks are among the most challenging times I have ever gone through, and I have come out the forest a changed person.
One day I will describe the challenges and the changes, but for now I am simply happy to have got my shoes back - even though it is increasingly clear that I will probably never know how long they might stay in my grasp.