Decision making has never been my strong suit. For me simple selection rapidly turns to dilemma; daily choices that don’t even ruffle the feathers of fortune, for me become long debates laden with import. Decision making strategies, whilst outlining positives and negatives, seem only to equalise the options and further prolong the process. Gut feelings get lost in this time. I can last for months with a decision hanging over my head. But with the options open, this place of indecision can mistakenly feel like a safe and powerful place to be.
The arrival of MS to my ponderous world meant increased predicaments for me. More life decisions emerged but also day-to-day choices became more daunting, weightier due to the potential impact on my health. Taxi or bus? Stick or no stick? Each small selection barbed with larger questions about whether I am ‘giving-in’ to the limitations of the disease or just being safe and rationing my sparse energy and quickly fatigable muscles. The fluctuating nature of MS also means it is often difficult to draw a clear cut conclusion even after trying both alternatives; what works one day, might not the next. Uncertainty reigns.
The larger life decisions are, I find, reframed. Diagnosis can be a push to bolder choices, your head at times clear above the fog of day to day detail. Living with MS can also bring a confusing mixture of prudence, out of concern for likely loss of income in future years and an impetus to live for the moment, due to dwindling physical ability. Decisions about work or starting a family can quickly become sites of anxiety, as current limitations and the uncertainty of the future loom large. I’d always believed these worries of mine, to be particular to my deliberating mind’s attraction to dilemma. Yet launching our ‘Choose Your Own Adventure’ book on decision making at MS Life 2012, we gathered decisions which MS’ers felt typical of their life with the condition and perhaps unsurprisingly my quandaries about having children were widely shared. More support for MS’ers on making these decisions seems badly needed.
So rather than a powerful vantage point, decision making with MS can be like a confusing junction with little signage and no map to tell you which is the correct way to go. And the decisions do not stop with the personal but also infiltrate the territory of treatment. Within the first month of being diagnosed with MS I had to decide which of the five first line Disease Modifying Drugs to take (due to their equal efficacy and the NHS/pharma risk-sharing scheme). Obviously in the healthcare arena resources are provided to aid choice and we are lucky to have choices at all, given that until the early 2000s there were no widely prescribed treatments for the condition.
But even given this landscape in which effective treatments for MS are scarce, over the last year a new medication decision dominated, one that proposed an almost impossible predicament for my deliberating psyche.
To be continued….
Copyright (c) Cathy John 2012. All rights reserved
Read more about Look Into My Eyes our exploration of the challenges of living with the uncertainty of MS here and read the book online here. Like MS, Look Into My Eyes is not straightforward to read and as in life, there is no ‘right path’ to follow. Yet as well as its difficult decisions, it yields interesting and surprising conclusions.