A Glimpse into my near future

 2021 in now in the Autumn Season. It has been a long year so far. I began the year suffering from Covid-19 (original virus). Followed by a few weeks of depression triggered by going “cold turkey” after steroid medication to help heal my lungs along with supplementary oxygen. I was happy that I was able to receive the care at my facility and didn’t have to be admitted to the hospital. March 2021 was the time of hoping to find some answers about my GBS disease - so I had a MRI of my spine and brain. Sadly, it wasn’t what I was hoping for. Hopes dashed, reality sucks. It was good to know there were no issues with my spine, but no picture to say my paralysis would improve. BAM!! Reality hit me like a ton of bricks. It was tough to feel joy. How could I? All my hope and my wish to get my hands back to go to my career was completely dashed. This has been a tough pill to swallow having to realize I will be, moving forward, remain a quadriplegic from shoulders down and will need to livid in a LTC facility for the rest of my life. Maybe being single, but in my perception, I felt my career and accomplishments was something that identified me. The last straw that GBS has taken from me - having a purpose, my joy in life and being able to contribute to my community of Health Records, data collection. Hit bottom. Took time to absorb my reality and a bit of a “pity party”. Then like how I have some many times in my past - get up, dust off my knees and start planning to find my answers to my questions. 

Living in a LTC unit in a community living facility at 47 years old, it’s daunting as it’s rare to see someone this young needing a LTC care. So I have kept to myself as I didn’t have much in common with my fellow residents. Through my observations around me, my personal experiences and having a healthcare background (25 years of reading acute care hospital charts can give one knowledge of what occurs in a hospital setting) - it helped with finding a voice to help other while helping me at the same time. Advocacy. There is writing to your politicians about issues, such as Covid pandemic or trying to have politicians be accountable to their province and citizens (Alberta healthcare). The “advocacy” I am referring to advocating for myself, fellow residents & staff on my unit as well as those within the whole facility. Bringing an issue to leadership and following it to the end (upgrading the AC and venting system so the facility could reduce the heat for residents and staff so that stops impacting their health and working environment). It was this advocacy that I saw “the joy” back in me, as I saw the 4 AC venting units been hoisted onto the roof. Big smile on my face thinking, “I had a hand in those 4 AC units coming to my facility”. Being truthful - it felt great my efforts was going to make difference. Having that “joy” gave me the confidence that things won’t happen overnight, but with patience and persistence on a topic you believe in, but I could make a difference in the community I am living in. Providing an example - I might be severely disabled being a quadriplegic, I still can give to others. As they say, “Seeing the ability instead of seeing the disability”. 

September 2021 - I got a glimpse of a change in my near-future that will be happening. It gave me a sense of excitement and happiness - capturing something I thought was lost forever. A sense of being independent again. With my immobility, I will always have a dependency on others for help, but I trialled a powered wheelchair 🦼 using Bluetooth technology in which I wear a headset in which my head movements allows me to move my wheelchair. During the trial, I found I was able to drive through the doors of the 6th floor sunroom, the sacred space on the main floor. The excitement of fitting through the doors that were barriers to me with my manual chair due to the width of my chair. Excitement = freedom as doors were literally opening up for me.