The physical limitations and emotional chaos of Guillain-Barré Syndrome (GBS) & Neurogenic Heterotopic Ossification (NHO) have created havoc in my life – loneliness, anxiety, boredom, depression and lack of productivity are just a few of my inherited struggles. While I am yet to find the one thing that permanently cures all, I have discovered something that makes a tremendous difference – a purpose!
I was contacted by CBC News to be interviewed about my journey with GBS and my blog. In the moment, I agreed without hesitation but afterwards battled with nerves and reservations. Writing about my experience with GBS & NHO in the solitude of my living room is quite different from speaking openly about it on camera, I was terrified about the public exposure. On the day of the pre-recording I was a wreck but somehow an hour elapsed between the first and last question and afterwards I was both enlightened and inspired – it wasn’t about me or my fears, GBS and its’ effects were in focus and people were interested.
The segment was scheduled to be aired in the latter part of May which was perfect timing as the month is celebrated as GBS awareness month worldwide. Thousands of survivors, fighters, caregivers, families and friends on every continent come together at conferences, walk & roll events and in virtual communities to share experiences, tragedies, triumphs, love, support and hope. Sharing my journey on that platform was even more liberating than the blog post or the interview. I had never been a part of anything that was so widespread, utterly heart-breaking and absolutely awesome all at the same time. I was communicating with people and more importantly they were responding in a language that I understood. Nothing compared to that feeling of me belonging.
Except maybe the relief I felt when after 6 months of borderline harassment I finally received my medical records and the referral letter from the local hospital. As I was uploading the forms, records and scans to the hospital in Miami my hands were trembling uncontrollably. I felt an intense mixture of joy and apprehension, I knew that I was one step closer to getting the surgery but I was thinking about the million steps I still needed to take before I could get my life back. I had to consciously block out the uncertainty surrounding what next and focus on the point that I was at, the instant that I embraced that thought and hit the send button I felt lighter. I was getting better at the one thing (a.k.a hour/day/struggle) at a time philosophy and with that came renewed hope.
That hope and optimism propelled me to launch my medical fund appeal. At the time of my GBS diagnosis I was not covered by medical insurance. The entire cost of my care and physical therapy since had been undertaken with help from my family but I knew that the cost associated with travel to and treatment in Miami was beyond our capabilities. I would definitely need help financing the expense and although a public appeal was extremely intimidating for me, it was essential. Call it the law of attraction or God’s perfect timing but one of my dearest and longest friends who was hosting a trade show at month end completely embraced my appeal as well as the GBS awareness campaign. Positive momentum made a significant difference to my confidence so when the opportunity for a live, on camera interview presented itself I was fully committed. Of course my body was protesting against being up and moving at 6:00 a.m. but the segment on Mornin’ Barbados was beyond all my expectations and totally worth it. On air, Tridents Pride of Barbados cricket team in partnership with JetBlue gifted me with plane tickets to Miami and in the days after the interview and the Indulge Expo trade show I received an out-pouring of love, support and well wishes, it was the first time in over a year that I had cried for joy instead of pain or sorrow.
May 31st, 2017: 482 days with GBS & NHO and I was completely amazed and deeply touched by the amount of persons that were inspired by me sharing my journey, I truly underestimated the meaning I could bring to the lives of others and I certainly did not expect the depth of the meaning it would give to mine. After months of feeling lost, I welcomed the fulfilment that came with having a purpose and direction; I was empowered!
*** GBS, I have found my powerhouse & I’m not going to stop so you better keep up ***