Each one of my physical therapy (PT) sessions are structured to promote movement, restore physical function and reduce pain. As a personal goal, every month I try to increase my weights or reps and add a new exercise to my routine. The last two additions were push-ups and balancing exercises using wobble cushions and boards. 4 push-ups on a good day is all it takes to make my arms tremble and the relatively basic balancing exercises can be so strenuous on my back, knees and ankles that they are rated at least a 7 out of 10 on my challenge scale, however as is true for most things, the bigger the challenge the greater the feeling of accomplishment on completion.
I was so excited that I could stand and balance! (until you are unable to coordinate these two activities without support you will probably not fully understand how significant this is) I intended to record the exercises and prepare a Facebook post to share with those who follow my GBS journey. I combined video clips from my PT session and included my song of the week – omitting the exhaustion, the heat pads and the transcutaneous electrical nerve stimulation (TENS) treatments that are mandatory after each session – the result was a 3+ minute video that was so surprisingly surreal it gave me goose bumps and caused unshed tears to burn my eyes and tighten my throat…watching myself brought absolute pleasure…“sweet.”
At about the 7th viewing, the flurry of gratifying emotions found in my moment of bliss faded and the unchanging truth hit me like a ton of bricks. I had allowed myself to forget that it has been 19 months since I started PT, that equates to over 200 PT sessions and in excess of 375 hours of therapy yet surgery is still the only option to restore function of my hip joints and give me a fighting chance to fully recover from Guillain-Barré Syndrome (GBS) and Neurogenic Heterotopic Ossification (NHO).
That is my “bitter” reality and the pain was equally surreal but for an entirely different set of reasons – I am not where I was yet I am not remotely close to where I need to be. What is worst, I actually questioned the celebration of my small victory and the impact it might have on the medical fund appeal.
Life with GBS & NHO ought to be included in the list of definitions for ” bittersweet” , the explanation in italics will read – pleasure from the progress of my recovery from GBS mixed with sadness from stagnation with the surgery to correct the NHO and all the triumphs and insecurities that define the two.
31st January, 2018: 727 days with GBS & NHO and I am equal parts devastated and overjoyed by the mockery of it all.
*** At their absolute best, GBS and my recovery are utterly bittersweet ***
