At the moment that I was admitted to hospital it did not occur to me that I would be in a coma within 24 hours, I expected to be home in 5 days. At the time of my discharge from hospital – 108 days later – it did not occur to me that my paralysis and pain could be permanent, I expected therapy and time would heal me completely. At the point that I was told that my hip joints were never going to move again without invasive surgery, it did not occur to me that it would be multiple surgeries and millions of dollars, I expected difficult but doable. I could go on but for me the pattern is abundantly clear – my reality of Guillain-Barré Syndrome (GBS) & Neurogenic Heterotopic Ossification (NHO) is never consistent with my expectations.
Now, dealing with the actuality of that fact is much harder than writing the statement of fact for many reasons. For me, GBS & NHO equates to agony from muscle cramps, spasms, numbness, burning, tingling and shock-like sensations in my back and legs. It justifies insomnia followed by extreme fatigue, my worsening sensitivity to touch and swelling in my feet. Every minute of the day is spent fighting for my health and trying to participate in my life while overcoming limited mobility. GBS & NHO creates an oasis for pain and isolation, shatters my heart repeatedly and makes the ever-present black hole of depression deeper and wider. The reality is, GBS & NHO are physical and emotional entities that take much more than they give.
Yet, I attempt to face my reality head on with hope and optimism; they are the catalyst for starting acupuncture, water therapy, therapeutic massages and face yoga. Hope propels me to increase my weights and reps in the gym at physical therapy (PT) as well as to stretch and complete basic exercises every morning, even on the days that I have PT. It instills a feeling of accomplishment when I consider that I can use the bed as support and shuffle 6ft to my commode chair. Optimism encourages me to talk with God, read psalms and focus on the positive influence that I may have on others. Hope and optimism represents the bench mark for how I should sound, look, feel and act; more importantly, it keeps everyone around me happy – unlike realism.
Realism reminds me that my dependence on my family for daily care as well as financial support is not sustainable. It screams in my head that continuing to merely exist in my mother’s living room is absolutely not an option. Realism points out that even after 16 months of determination and 4 days per week of structured therapy, surgery is still the only medical option that will allow me to stand erect and regain full function of my legs. It declares that I have been told ‘no’ more often than ‘yes’ in my fundraising efforts and it strongly suggest that while corrective surgery in Miami is possible it may be financially unattainable. Realism is taboo because it highlights the unpopular truths and is synonymous with giving up and lacking in faith.
In the end; hope and optimism dictates that I continue to reach out to every doctor, hospital, medical research institution, charity, foundation and business in existence for as long as it takes for me to achieve my objective (#helpdawnwalkagain) – a positive visionary outlook with real-time disappointment and uncertainty. While realism promotes acceptance of a life that includes long-term use of a wheelchair, a home fully adapted to my needs, an avenue for income which is sensitive to my limitations and friends who love the 3ft shorter version of me – a disappointing and less than ideal real-time outlook with a certain and practical outcome.
30th September, 2017: 604 days with GBS & NHO and in the secret recesses of my mind I am compelled to balance my desires with what is actually happening and let that be my compass in choosing a path between optimism and realism. Why must I choose? My mental health depends on it!
*** seeking that happy place between expectation, hope and acceptance***
P.S. I expected to complete and upload this post by the 30th of September but heavy rainfall, stiff finger joints and my head space had different plans – like I noted, my reality with GBS & NHO is never consistent with my expectations.
