In my ‘ The Other Stuff ‘ post, I described the intense nerve pain associated with Guillain-Barré Syndrome (GBS) as a life form that threatened my sanity. Preservation of mind came only after I started to move my toes and concluded that if the unrelenting pain equated to nerve regeneration and movement it was worthwhile…
December 31st 2017: Exactly 12 months later, the severity of the shock-like sensations, burning, tingling and jolts of pain in my back and legs is much less in comparison, as such the GBS recovery ordeal is punctuated with an increasing number of good days and restful nights. You might think that as I have spent more than a year beseeching God and the universe to remove my pain the only logically response is to be thankful but here is my dilemma – the pain is decreasing but sensation below my knees and movement in my ankles and toes has plateaued at merely marginal.
I want to carefully pick my battles, realistically less pain should not be questioned yet I am plagued with them – Is this the full extent of my nerve regeneration / recovery? Will the nerve deficits affect the success of the hip surgeries? Will I have to get additional surgeries to correct my foot drop and the contracted muscles in my ankles? How do you choose between less nerve pain and further recovery? More importantly, is there really a choice?
At this point I can only sigh, to my mind living in a state of perpetual uncertainty goes against the laws of nature. I continue to seek that happy place between optimism, expectation and reality, I have even moved away from “I am holding on” (i.e. I am suffering in silence) to “I am as good as can be” (i.e. progress is progress even if it is slower than I would like) in response to the question how are you yet I am no closer to finding and staying in that place in the present or raising the funding for the surgeries in the hopes of being there in the future.
Living with Guillain-Barré Syndrome (GBS) & Neurogenic Heterotopic Ossification (NHO) feels like I have for a time balanced on a tight rope at 1000 feet over an abyss only to eventually fall. There is absolutely no relief in the fall, it is in torturous slow motion. I am grasping at the life and happiness that I desperately want but they continuously get farther and farther away from my reach. The initial panic of the fall turns to a dull but constant ache and my visions start to blur yet the fall never ends.
696 days with GBS & NHO…I know that I am not the same person I was at the beginning of the year…
*** … I also know I have no idea who I have become***
May this year 2018 bring you the relief you desire. Never give up but hold fast to The Almighty.
I know you’re my first true love. The one person on this earth who no one could match in strength, kindness, love, compassion and beauty both inside and out. The one person with the ability to piss me off, yet still be the only person I could love endlessly regardless. The woman who gave birth to me 17 soon to be 18 years ago and gives me the world despite all odds. You are a hero and most importantly you are my greatest inspiration in life to the point where it scares me that there is a possibility that I could ever let you down. You are my rock and whatever happens and whatever changes I will always be here for you, with you, on you until my last dying breath. I love you Mom…
– H.O.P.E (Hold On Pain Ends) 💖