I never made New Year resolutions and 2017 was not going to be the year that I started but I knew that I had to make changes if I was going to deal with Guillain-Barré Syndrome (GBS) & Neurogenic Heterotopic Ossification (NHO) and remain sane in the process.
The first promise to myself was to take each hour of each day as it came…whether it was strength, fatigue, faith, disappointment, lack of motivation, fear, determination, sadness, optimism or all the above I was going to allow myself the emotion, be completely honest about it and take the time to deal with it without apology, shame or guilt. The alternative was tried and proven to be detrimental.
I also made the decision to start this blog and launch it to commemorate my 1st year with GBS. Therapeutic writing was going to be my self-help tool, I was hopeful that by sharing my experiences, thoughts and feelings in the blog I would start my emotional healing process, raise awareness of GBS & NHO and connect with other GBS survivors. The writing and planning were exactly the distraction that I needed to very slowly ease my turmoil and give me purpose.
The pain in my legs however was not offering a reprieve and although crying never lessen the pain, at times it was my only recourse out of sheer frustration. The combination of windy days and cold nights seemed to be intensifying the swelling, tingling, numbness and shock-like sensations in my legs. As the fear of a relapse was always lingering, I was at the brink of panic when during one of my eyes to feet staring and mental coaxing sessions I was able to wriggle 4 toes on my left foot, all 5 on my right foot and very slightly move my left ankle…very small movements but a significant milestone which came with the thought that maybe the increased pain that I was experiencing over the last two months was a build up to that breakthrough. I was given hope and the leverage that I needed to keep climbing out of my dark hole…forward was forward even if it was slower and more painful than I would have liked.
I also had an emotional breakthrough; without realizing, I was having an internal battle about adapting to my physical limitations. I had the fear that adapting would equate to accepting and somehow the universe might be convinced that I did not need to regain full use of my legs. To make sure that there was no mis-communication, with every new thing that I attempted I mentally attached the subtitle “only doing this until I get my surgery” and instead of sliding from the wheelchair to bed or car I would push myself up, stand and then swivel my body and legs using either the wheelchair or car door for support. I allowed myself to feel good about my progress without the worry of the limitations and adaptions being permanent.
My physical therapists continued to focus on muscle re-building, strengthening and balance. The objective of being strong enough to walk as soon as the NHO was corrected was still the main focus. Getting on and off the weight machines without being able to move my legs laterally was another trial and error moment but one that I was able to conquer…another milestone of sorts! None of my PT were fixated on my NHO, they kept pushing me, increasing my weights and adding to my routine; I had little choice but to comply, at the same time I could not help but think that if not for the second head of my two-headed monster I could be standing erect and walking instead of swivelling and dragging my legs around. (Note to self: the road of “what if” could be very treacherous.)
Evidently my story was not meant to end with me being fully recovered and walking after 11 months with GBS and despite the fact that I had no idea how the ending would eventually be written I was going to make sure that it would never be recorded that I gave up regardless of how many times I got knock down…362 days with GBS & NHO.
*** I will not be defined by GBS, only by my strength and courage ***
