I saw this image and could immediately relate it to me and the last 10 months with Guillain-Barré Syndrome (GBS) and Neurogenic Heterotopic Ossification (NHO).
The physical aspects were on the surface…the transition from full body paralysis to being able to sit up and transfer from the bed to wheelchair, the ability to push myself up to stand and balance in the parallel bars or with a walker, the reduced stiffness in my left shoulder, the increased weights and reps in my PT workouts, the two toes on my right foot that were moving – without a doubt I was better and stronger than I was before. Everyone was so happy; my family, friends and even strangers never failed to remind me how far I had come and my physical therapists were pleased with my determination and progress considering the lack of movement of my hips and my persistent foot drop. On the surface, I was a fighter, focused and improving.
Do you notice that what can be seen from the surface is much less compared to what is beneath? With my GBS and NHO that is not an illusion, the physical pain, emotional trauma and mental distress that lingered beneath the surface were invisible and I assisted in keeping them hidden. I was not allowing myself to feel because I wanted to be strong and when I did I was internalizing my fears so I would not show a lack of faith.
My pain had become a life form, I could no longer tolerate my feet being touched and even wearing my foot braces and shoes was painful. My knees and ankles were constantly swollen and sore and the tingling and shock-like sensations were moving deeper into my legs causing my bones to ache…but I kept quiet because I was told feeling pain was better than feeling nothing at all.
There is a thin line between stating facts and complaining and that was confirmed when persons would tell me that I should not complain because regardless of how bad my day is there is always someone who has it worse than me, so when asked how I was feeling instead of saying I am hurting so much that I am nauseous I would simply say I am holding on.
GBS had taken my world, turned it upside down and reverse its’ spin but the real world was still on its own axis and carrying on…without me. The calls, messages and visits went from daily to non-existent and I felt stuck, lonely and rejected but I said nothing because life goes on and you cannot force anyone to find the time to be there for you.
I agonized about my health and how I was going to finance the pending surgery and post-operative care along with everything else, I felt ashamed for not being better prepared for dealing with this level of illness and guilty for the burden I was placing on my family but how can you verbalize that without sounding ungrateful for surviving when others do not?
The crushing realization that I was not going to achieve my short-term goal of walking unassisted by the end of the December was my breaking point and every emotion that I was denying myself, every fear and thought that I had kept hidden created a black hole that was sucking me in. I was depressed!
My hospital discharge sheet should have read – to continue speech, occupational and physical therapy and begin psychological treatment.
December 31st 2016 / 331 days with GBS & NHO – I am not the person I was at the beginning of the year; I’m a little broken and that’s ok. It’s ok for me to feel and it’s ok for me to talk about it….
*** ….I just need you to love me a little louder when I do***
What a transparent and moving post I can relate to many of those feelings especially the depression from GBS. Continue to share and shine your light.