It was with light, distracted hearts that Robyn and I went for our neurologist appointment three weeks back.
Light, because after the chaos of the delayed reauthorisation, being off treatment for five weeks and having to get a new report three months after the last (rather than the expected six month cycle) due to the short ‘bridging’ approval, we didn’t feel much need to demonstrate profound gains to keep the medical aid committed. Distracted, because life is busy, and my body is not the only challenge either of us face in a day.
Nonetheless, the report showed further gains. Again in the shoulders and ankles, now also in the wrists. In addition, the walk into the the doctor’s office – a trip I have been taking for 25 years and which is littered with unavoidable benchmarks – was, compared to three months ago, easier. Less sweaty and anxious, and absent of that undergirding I could land on my face at any moment fear.
A fellow SMA patient recently told me about her recent visit to her neurologist to start the application process for the same treatment. She said she found it profoundly emotional going through the list of all the things she cannot do. Her case is more severe than mine - she requires an electric wheelchair to move around. Still, I relate. It’s unsettling to fail to lift a limb, push this body part, pull that one, in the stark light of the doc’s office. When you dream of treatment you imagine all the bright shining lights – but of course life is always a series of ups and downs, and I find it intriguing to be living so vividly through both right now. Eight months in, the process still feels utterly unique.
Within this, the bureaucratic savagery of the delayed reauthorisation had one shining benefit. It forced us to loosen our grip on the daily obsession around whether I am improving or not, and highlighted the deeper need to live positively with or without treatment, whether getting stronger or weaker or neither of the two. In a strange but important way, it provided liberation.
Emotional liberation. We have always known that this treatment is not a cure. The pharmaceutical company describes it as a stabiliser for good reason. But as clear as the opportunities and limitations are in rational terms your heart still has to live with a swirling mix of hope, fear, risk and dreams, compounded by the knowledge that the medical aid could retract its Ex Gracia cover at any time. If you don’t find way to manage this swirl you risk ending up under the waterfall in perpetuity, receiving an endless pounding.
Robyn and I spent many hours over December talking about this. Our conclusion was that even if we never got another drop of the juice, just six months of it was a life changing gift. Physically, of course. But, unexpectedly, also in the spiritual realm.
My take at the moment is that the hidden, and often very complex, aspects of the treatment journey thus far have forced us to be positive beyond what we might feel capable of. There really is no other option now than to rise to meet the wave, regardless of what form it is currently taking. And when you do that, you start to remember that you really do know how to be free in heart and mind. That you have flown high and well many times before, and will again, because life for all humans has surely ever been thus: weird, painful, restrictive, and yet full of little gifts… if you can find a way to see, stop, and pick them up.