Today Barbados celebrated 51 years of independence from the United Kingdom. National celebrations are most often preceded by discussions and heated debates about what independence means and if it truly exists for us as a nation. Within 24 hours, the national celebrations end, the discussions cease and Christmas becomes the focus. I suspect that this cycle is not likely to change or be completed in the near future but lying here on this cold and rainy independence day (in pain!) I wonder about my independence, what it means for me and if my cycle will soon be completed….
Independence speaks to freedom, both mental and physical; it embodies self-sufficiency and self-reliance and promotes self-determination. At a glance, that defines everything that Guillain-Barré Syndrome (GBS) and Neurogenic Heterotopic Ossification (NHO) prohibits. I cannot remember a day in the last 21 months where I have been totally relaxed and my mind has been devoid of thoughts related to my health and my future. When I reflect on a day in my life, within the first hour of the sequence of events there is some basic task that I am unable to accomplish with total autonomy. Essentially, freedom to be and control of what is are foreign concepts in my current life but represents the focus and vision for my future.
Therefore, when I launched The Dawn Drayton Medical Fund Appeal I was so optimistic about my future, a light was switched at the end of the GBS / NHO tunnel and I could see and literally feel my independence. However, in this moment – 6 months and so many obstacles later – that light is flickering. The small voice in my head is compelling me to consider that every time it feels like I am going to make it and something happens to threaten my resolve, I usually find reserved strength to prevent myself from falling apart entirely but what that voice fails to recognise is this cycle is exhausting and I am exhausted.
30th November, 2017: 665 days with GBS & NHO and I am desperately longing for the cycle to be completed and independence of my mind and self…