Linking my “Abled-body journey “ with my 6 year journey with GBS-AMSAN

 They say, “Life is a journey.” A journey of ups and downs as well as some bumps along the way too. From my perspective, my first part of my life’s journey, I experienced bullying from kindergarten and onwards and experienced bullying throughout my career as a Coding Specialist in acute care hospitals in Thunder Bay and Calgary. That bullying shaped who I became as an adult. As a child I was an introvert, a loner, not one with many friends. I had issues with self-esteem issues, self-confidence, and self-worth growing up. Of course, why would anyone like me when I didn’t even think much of myself? Growing up, my brother Bruce was an artist so his artwork or sculptures were on display around the house. Then my younger sister Kathryn seem to excel in basically everything compared to me. So I see her trophies on display around the house too. But did I have anything on display in my house? Absolutely nothing. It was hard for me to compete against those things growing up and I am seemed to struggle more. I am sure my parents didn’t realize how much I internalize things as I kept those feelings tucked away, Of course not until I exploded months later by doing something silly like stubbing my toe. I would pour it out through tears, usually to my mom, then I would reset in keeping my feelings in. That happened so many times in childhood. A ferocious cycle. 

Through family traumas such as my mom and sister Kathryn getting cancer (breast and bone respectively) within the same year period (86-87)  when I was 16 years old. Of course, Kathryn’s unexpected death by suicide. I mean this would shake anyone to the core. I just felt lost, what was I going to do without my sister? She was more than a sister, she was my friend. We had these late night chats - loved them! So miss them now. When you add the bullying at work, I had no coping skills to deal with this issue. When it was blatantly obvious I would never advance in my career in Thunder Bay, I left. It took some time, but I finally was given the opportunity of a full time job at Foothills Hospital in Calgary. It has been and still is, the best decision I made in my life, from a personal and professional perspective. I was given the space I needed to begin to grow and regain my life - regain my self-confidence back. It was finding a joy in my life. Living on my own, feeling independence, buying a house for myself (wow), spreading my wings by pushing my “comfort zone” leading to my confidence in myself in my work, becoming a Coding Coordinator. I found how I could use my voice and not being afraid to use it when warranted. This was new feeling and I liked it. 

Throughout all of above, there was a constant - comfort in eating the wrong foods. Overeating the wrong foods - you know those yummy comforting snack foods - chocolate , chips, ice cream etc. The high carbs, high fats, and high sugar foods. My obesity became my “physical wall” that in my mind was protecting me from more hurt but in actuality, I was just hurting myself. This is something hard to admit and acknowledge to myself, and with this post, admitting to everyone else too. It’s an old habit tough to break when I have been feeling this way for decades. Surprisingly, it is now 2022, that I am starting to break my eating habits and creating new and better eating habits with help from Dr. Bhatia and my facility’s dietitian. In 5 months (April - September) I have lost 43 lbs just from changing my eating habits as I am unable to do any physical activities being a quadriplegic now. Why not add another challenge to face? 

Then September 9, 2016 happened. Life has I knew it, blew up to the point where I felt I had to start from scratch again. I was 45, a week shy of turning 46. Up until this time, I was abled-bodied, at the height of my independence and from my perspective, my job identity who I was as I was not married nor had children in my life. It’s been 6 years since my diagnosis of Guillian Barre Syndrome - Acquired Motor Sensory Axonal Neuropathy variant (GBS - AMSAN). Memories are fading from this day, but I still remember some things. The pain, my decline from being able to hold my pop with two hands and by early the next morning not able to hold a pen to sign the consent form for the lumbar puncture and only able to suck on ice chips for moisture. While waiting for transfer to ICU, being told they would have to intubate me due to shortness of breath and to keep me alive. It felt weird as the drug they gave me made me feel like I was just fading away until there was darkness. Then my endless nightmares began, images being so vivid, terrifying as I would always die at the end of the nightmare. I have always wondered why did I have these nightmares and why did I always die at the end of them. Did it have something with what was going on in my reality? Fighting for my life, having a bradycardia arrest leading to cardiac arrest, needing a temporary pacemaker to stay alive, more complications like pneumonia, pulmonary clots and DVTs and infections from my CVC lines. I have no idea but though they are fading from my memories but I have an opinion. There was about bullying and teasing, each of the nightmares would end with a white light and then would go black only to return again. It went on what felt like forever, but it was really only 5-6 weeks until returning fully in reality. 

When I finally stayed awake to join the real world, it was near the end of October. I am now a year older (no memory of turning 46) and entered into a world forever changed. Not understanding, why I couldn’t move my body, why I couldn’t talk. Feels weird not able to move, unable to speak but hear what everyone is saying around you and not able to respond. It’s frightening actually. Even typing about these feelings I just want to cry. The everlasting question that I ask myself, even now, is “WHY?” which brings all the “What ifs?” to the forefront. Would I still be in this bed as a quadriplegic, if I had asked different meat for my pita? Or if I chose a different meal like hamburger with fries would I had food poisoning then stomach flu which lead to my GBS diagnosis? All I knew, I had to start from scratch again after 46 years, but where do I start? 

What I have learned though this new life’s journey - the things I took for granted as well as the clarity of what is important to me. Not to say it wasn’t important to me in my abled-bodied life, but most definitely my family and friends became my lifeline to my outside world. They gave me love, support and encouragement that I needed to get through each day to stay positive, to live for. Such a blessing. I was in hospital for almost 2 years before transferring me to my current home - AgeCare Skypointe on one of their long term care units. From September 2016 to May 2018, I went without having a shower as they could only do bed-baths due to safety precautions in the hospital. Such a little thing, but I treasure my Friday afternoons now as that is my shower day in the actual shower. The power of water falling over your head gives me the feeling of washing away the events of the week, and you feel refreshed to start again. 

Throughout my GBS journey, I am continuing learning the lesson of accepting and adapting. I may have no hand function but I have learned to type with a stick and a touchscreen iPad. It’s cute when I hear people say, “They think I type faster with the stick then they can type themselves. I am grateful I was given this disease in the 2000s then in the 1980s like mom and Kathryn with their cancers. We would not have the technology to make my life easier like I do now. I would feel cut off from the world and probably suffer from depression as I would have no reason to live. Fortunately, with my stick and iPad I can stay attached to the outside world. Saying goodbye to my career as I thought that it what identity me was difficult to admit to myself. I always had hope going back. I knew it would look different, but I would be back in a career I had loved. Great having friends to remind me I was more than my work life. Though it took time, I finally was able to conclude my career was over, so what now? Interesting how the world can show you what you need to see. 2020 we faced a 2+ years of living in a pandemic environment. Living in a LTC facility sure gives you a different perspective as we now start just living with Covid-19 virus just like we do with the flu. 

Luckily as GBS didn’t go passed the brain barrier, I have my full cognitive skills which came with my medical knowledge from my career. With slowly realizing I could not go back to work, I wonder what skills I did have? Getting my confidence back, I learned I could use my voice for myself but also for others too. So I begin to write to my provincial government throughout the Covid pandemic giving a voice to my staff but all those in the hospital as well as the impact on LTC residents. I used my skills of observation and experiencing to bringing a voice to things around my facility. A major achievement is improving the facility temperatures in common areas and residents rooms. As I cannot regulate my body temperature, I was provided an air conditioner which helps regulate my body temperature throughout the year. to. So grateful for having this as it also decreased me having to deal with loss of skin integrity and pressure sores. To be able to bring a voice to issues we face in a LTC facility or to participate in the outside world bringing a voice in sending letters to politicians about healthcare or LTC living concerns. 

My faith in God was important to me before my diagnosis, but it is an integral part of journey now. I have always said if I have my 3Fs, I could basically get through anything that is thrown my way. The 3Fs - Family, Friends and Faith. This is still true today. It is my 3Fs that is helping me in my GBS-AMSAN journey. A common comment I get is, “I couldn’t get through this like you have, if I was in your place.” I really don’t have an answer to that. I just am. I remember hitting a low in November 2009, living in a negative world was not fun. No joy, less laughing and smiling. I just know I didn’t want to go back to that place, so I chose to learn to stay in a positive world where I have joys, laughter and smiles again. Learned when I am having a rough day to shake it off and telling myself, “Tomorrow is a new day”. A new day = clean slate. It seems to work most times. For the past two years, friends Sara and John Paterson has invited me to join their evening family prayer time where we are asked to share our favourite part of the day. This helps me appreciate the good in my life as well as hearing from others too. I think this has contributed to a stronger faith in this journey. Plus knowing I couldn’t survive this whole situation without my faith. I remember sharing one evening that my favourite part of my day, was the whole day as I felt strong, little pain, basically just felt good. I remember saying I don’t know why or how, but I have enjoyed it. Then I heard from William saying it was a gift from God. You know never thought of that, a gift from God. It brought an instant smile to my face and said thank you to William. Despite the darkness I have felt, I am remember my blessings. There is someone who is having a rougher day than me. I am sheltered, I am cared for, I have food to eat and I have tools around me to make my day easier and able to stay connected with the outside world, family and friends. I am so grateful for many things. 

To get to today, physically, mentally and emotionally elements have gone through the ringer that is for sure. I am working on a new life, where I can see my own abilities again, not my disability (quadriplegic from the shoulders down). Pushing outside my comfort zone and participate in more recreational activities the facilities provides is a good start. The goal is, “Living in my life again”.

Retrospectively, adding counselling, gaining coping skills and improving communication with people, it can bring a new perspective to me. For example , issues I did not think about when I was abled-bodied, such as the challenges for people wheelchair-bound especially if you are in an oversized wheelchair. For me, it’s like coming full circle in a way. Through I couldn’t “display” anything growing up. I did make people around me smile and to laugh, to feel good. You can’t really put any of that on the wall, can you? It definitely wasn’t funny being bullied for majority of my life, but I have gained an appreciation to share my voice for myself and for others. For ever family trauma I experienced I learned something about myself such as, I am stronger than I think. I truly feel I could not have been able to survive these past 6 years if I had not experienced all those previous traumas first. It’s like life was preparing me for the toughest challenge I will ever face. 

It is interesting what life throws at you, then how we react to them. Looking back to see the lessons learned but you can see the baby steps of improvement made which leads to a big step of improvement. I know I will have my rough frustrated days ahead, where I just want to stay in bed feeling sorry for myself and have good cry. But I need to learn how to shake it off, and move forward. It’s okay to have those days (hello look at what I am facing) but there is still life out there - I just have to look for it.