One Year..

February 2017 – how do I record time relative to the drastic changes in my life?

1 year..366 days..12 months..52 weeks..8,784 hours..527,040 minutes..31,622,400 seconds

Seconds! The 8 digits were best suited to the enormity of Guillain-Barré Syndrome (GBS) and Neurogenic Heterotopic Ossification (NHO). I was then wavering between celebrating time conquered or grieving time lost, both options had compelling supporting arguments. However, before I could decide what 1 year with GBS was going to mean for me my gran-father died suddenly and was buried on the exact date that I was admitted to hospital the previous year. It no longer felt like it was a choice, grief was over-powering.

Dealing with death is hard and when unexpected it is even harder, the regret and guilt I felt was immense. I was extremely worried about my mum and the impact my prolonged illness and now her father’s death was going to have on her mentally and emotionally. I knew that because of the huge responsibility of taking care of me for the last year she had not been able to visit or call gran-daddy as often and like me she felt sorry about the distance and time lost. It was another reminder of how much I could not participate in my life and how my illness had changed the lives of my family.

Grappling with those feelings caused another set to surface. I was also grieving the living – my former self, the life that I had and the relationship that ended but I still craved daily. Rationally I knew that it was impossible to look, think, feel and exist the way I did before GBS & NHO yet I missed so much so intently that it was suffocating. The yearning was constant, the shifts between denial, anger, bargaining and depression were unpredictable and fleeting and I was not remotely close to achieving any form of acceptance for any aspect of my new life.

I tried to use writing for the blog as a distraction and in the process created a fresh wave of emotions. I unlocked memories from my time on MICU and I was forced to confront the hallucinations and nightmares associated with my ICU psychosis. In a moment of hysteria after I came out of the coma in April 2016, I had accused a friend of being the reason I was sick, since that outburst I was too ashamed and fearful to verbalize anything else surrounding the memories of my warped thoughts and dreams. I had conjured up some awful things about my family and friends and while I later understood the reason for the hallucinations I was yet to forgive myself.

I spent the entire month in a daze, grief in all forms, the torment of my physical pain and the uncertainty about my future created a perfect storm. It was difficult to reconcile that less than 30 days ago I was determined not to give up; it seemed that every time I dared to hope or fight harder I was chastized and I could not understand why….what was I doing wrong? What lesson was I not learning? Why wasn’t my faith more resilient? How much more would I be tested? 390 days with GBS & NHO and I had more questions than answers…

                     *** for those who understand grief, no explanation is needed;                             for those who do not understand, no explanation is possible ***


About Dawn Drayton-GBS

In February, 2016 I was diagnosed with Guillain-Barré Syndrome (GBS). To mark my one year anniversary I have launched this blog. I am hopeful that by sharing my journey I can not only motivate myself and others but also raise awareness of GBS and it's devastating effects on your physical, emotional and mental health.
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One Response to One Year..

  1. Harriett says:

    I was really moved by this post. I am so sorry for your hurt and pain. May God grant you healing and peace of mind to go through this challenge. God bless you my sister.

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