Les Brown said “too many of us are not living our dreams because we are living our fears.” I can relate, I live in fear of…
…what else will be added to my current diagnoses of Guillain-Barré Syndrome (GBS), Neurogenic Heterotopic Ossification (NHO) and Osteoarthritis (OA)
…losing hope to the ever lingering depression, insecurity, despair and isolation
…waiting indefinitely to recover, hurt less, walk and get back to living
When I consider that it has been over 2 months since I submitted my records to the hospital in Miami and I am yet to receive the details on the surgery and its cost or that I still struggle with residual effects of GBS like muscle weakness, lack of sensation, foot drop, hyper-sensitivity to touch, chronic fatigue and pain, in my mind I could easily justify the fear that has propelled me to place my life on hold as I process it in terms of before and after GBS. How often have I said “when I get better” – “after the surgery” or “when I walk again”? I had created a version of my life where GBS & NHO were transient and after these 3 key events I could hit the pause button, my life will revert to normal and I could then start living again. As I am writing, I cannot decide if that is optimism or ignorance at its greatest, but I attribute finding purpose in sharing my experience as well as discovering Claire Wineland video on How to Live When You’re Dying for forcing me to really think about it. https://www.facebook.com/PopSugarCelebrity/videos/999122113457593/
As a method of self-preservation, I have spent a considerable about of time trying not to dwell on the negative side of the “what if” base camp but in the spirit of me being true to my feelings and to process Claire’s philosophy I will allow myself a brief visit – what if I do not get the surgery, I never walk again or where I am physically is the full extent of my recovery? What if the magnificent moment when I am healthy enough to function independently never happens? By my logic of before and after GBS, I will never be normal, live my dreams or life again. In reality however there is only before and with GBS & NHO and I can do much more than simply survive and wait. What if I live the best life possible, right now, limitations and wheelchair included while still working towards the ultimate goal of regaining my mobility and independence? What if I recognize that adapting is not giving up? What if it is as simple as a mental shift and choice of words?
I create and live my dreams in this life…
…understanding that worrying about what will happen next changes nothing
…expecting to experience negative thoughts and emotions and being ok with it because living with GBS & NHO is extremely difficult and I am human
…not blindly focused on the normal life I want to have in the future but by appreciating the abnormal one that is happening now
With that thought process I was able to release the breath I was unknowingly holding and free myself emotionally to truly appreciate one of the worst and best moments of my entire life. There is a quote that states the greatest test in life is when you are capable of blessing someone else while you are going through your own storm. In this instance, that someone was my father; daddy is a diabetic, he developed an infection in his right foot, went into hyperglycemic shock and lapsed into a coma. Within hours the situation became a crisis that involved a choice between his leg or his life and the decision needed to be made for him – one may argue that there really wasn’t a choice but for 4 years daddy was adamant that he would prefer anything over losing a limb. After the emergency surgery, I endured 3 days of anxiety wondering how he would react to waking up without his leg. Surprisingly and thankfully he was more than ok, his reason: he could not leave me to fight GBS & NHO without his support. I had to take pause in that moment, ultimately the choice of life or death is not ours to make but from whom or what we gain motivation is; I was able to give the will to live to one of the persons who had given me life.
July 31st, 2017: 543 days with GBS & NHO and I am extremely thankful to everyone who looks at me and feel comforted, hopeful or inspired not to give up – you give me the will to not only live but thrive.
*** Starting now, I choose to face my fears and live my dreams ***
