Body
Marjorie Aunos, PhD, is a psychologist, TED X speaker, and accessibility consultant in Quebec, Canada.
I was 34 years old in 2012 when I sustained my spinal cord injury. I was a solo mom of a rambunctious, 16-month-old boy and a career-oriented psychologist specializing in working with parents of children with intellectual or developmental disabilities.
The injury occurred when my car slid on black ice near Montreal, Canada, and collided with a pick-up truck. In that terrifying moment, I thought I was going to die, but I asked to live – for the sake of my son, Thomas.
When I regained consciousness, I immediately sensed that something was wrong. My legs felt like marshmallows with pins and needles. I could barely see, and my hearing was also impaired. But the most concerning issue was that I could not move or feel my arms.
Due to the impact, my spine was injured at the C2/C3 level, but this did not cause permanent damage. However, it was severed at a T2/T4 level, leading to complete paralysis from under my armpits to my toes.
It took several hours to get to the nearest trauma hospital. I kept asking for my parents because I needed them to know they would have to keep Thomas for longer than expected, and I also needed them to inform my boss I would not make it to work that day. Doctors and nurses kept asking me questions, preventing me from focusing on managing the pain and the emotional shock.
When I arrived at the trauma hospital, I tried to stay focused on not making things worse and staying strong to deal with what would come next. I went through an MRI, other scans, and x-rays, which were painful because they had to position me.
After the accident, a doctor told me about my spine and that he needed to stabilize my vertebrae at the C2/C3 level and T2/T4 level.
The surgery lasted all night. When I woke up, I had a tube in my throat. I remember trying to push it to the side so I could breathe. I knew I was intubated and that it was ‘normal,’ but the sensation of the tube was scary, and my instinct was to try to breathe on my own. I also tried to move my arms and felt resistance. I realized that they had tied me down to prevent me from pulling on the tube. I started to get agitated, and then someone with a gentle voice came to reassure me that I was okay and that they were there to take care of me.
I stayed a total of ten days in the intensive care unit. Five of those days I was with the same nurse, Isabelle. She was experienced, kind, and loving, and her gentle words infused me with hope.
The doctor explained that if they removed the breathing tube, I would need to retrain my lungs to breathe and clear the mucus. If I failed to do so, I would risk being intubated again, and everyone wanted to avoid that. I promised to follow the instructions, and later that afternoon, the breathing tube was removed.
The next few days were a repeating cycle of waking up, understanding my situation, and then drifting off again. Isabelle cared for me and listened to my worries about not being able to take care of my child. My parents, friends, and some colleagues visited me until I refused to have any more visitors. I was crying for my son but didn’t want him to see me in that condition. I knew the machines and the beeping sounds would frighten him, and I was physically unable to comfort him due to the tubes and the pain from the surgery. It was heart wrenching.
Isabelle knew that the only way to ignite my fighting spirit would be for me to see Thomas. She instructed my mom to bring Thomas, and five days later, I finally saw him. As I had expected, Thomas got scared and started crying when he saw me. I was unable to move my arms or go to him. I was also crying and in no condition to make it safe for him. I wanted him to feel safe, even if it meant being away from me, and that realization broke my spirit.
However, my mom had another plan. She brought Thomas to see me every day, even if it was only for a few minutes, so that he would get used to being around me again.
The next twenty days in the intensive care unit were extremely difficult. I needed to be able to sit in a wheelchair in order to move on to inpatient rehabilitation. Due to my injuries and surgery, I needed to be fitted with an ironman jacket first – something that held my neck and torso in place. The wheelchair felt like a torture device to me. The weight of my arms put immense pressure on my neck and shoulders, making it feel like I was being pulled in different directions. Within minutes, the pain became excruciating. Sitting there alone and in pain, I would call out to anyone passing in the corridor or ring my bell, but nobody would ever come.
One month to the day after my accident, I was transferred to a rehabilitation center. A nurse informed me that I would finally be able to take a real shower after a whole month of sponge baths. Despite the pain I was in, that shower was the best I ever had.
My inpatient rehabilitation lasted for 4.5 months. My daily routine was quite structured. I would wake up at 6 am every day, have breakfast, and then prepare for my morning hygiene routine once the day staff arrived. I was allowed to shower every other day. After getting dressed, I would attend one hour of physiotherapy and one hour of occupational therapy. Although psychological follow-up was offered, I decided to stop seeing the psychologist because I didn’t find it very helpful. Throughout the week, I participated in workshops to learn about my new condition. My therapy sessions usually wrapped up by 2 pm, allowing time for Thomas and my parents to come spend time with me until 5 pm. Thomas would then go home to be looked after by my parents, and I would have supper. My mom would return around 8 pm to help me settle in for the night.
I was very appreciative of the team of professionals that worked with me. The difficulties I had were more on the administrative side of rehabilitation. For example, I was placed in a room with two male roommates despite there being another female on the ward. Additionally, I was moved to an independent apartment at the rehabilitation facility, which meant I received minimal support from the nursing staff. When I requested to stay an extra week to allow for my bathroom at my home to be made accessible, my request was denied. At the time, I had a UTI which led to several incontinences a day and needed a functional bathroom at home. This experience highlighted the importance of ensuring that our homes are accessible before being discharged from rehabilitation.
Returning home was difficult. For several weeks, I had no rehabilitation, which created a void that was filled with anguish and despair. Being a mom, I also felt ill-equipped coming back to a home that had different roles. My parents were now living in my house, and my son was looking towards them for care. I had been away for too long, and nobody thought of how difficult and touchy it would be for me to go back and ease myself into my ‘mom’ role.
In rehabilitation, I didn’t really work on specific objectives related to parenting or caring for my son. I had a social worker assigned to my dossier, but they only helped with paperwork. How to remain in charge of my parenting amidst a new chaotic co-parenting arrangement should have been prioritized as part of my rehabilitation plan.
Many different topics were brought up during rehabilitation: how to manage our bowels and bladder, how to transfer safely, nutrition, pain management, sore prevention, and so on. But several were left out. For example, I wanted to know how I could take care of my wheelchair? How can I change a tire, or fix my cushion? These elements were essential, as I am a busy person and don’t want to be limited by my SCI.
I started traveling with my son and parents 6 months after my injury. I wanted to be able to fix my wheelchair on the go, regardless of the country I was in.
Another important topic that was not brought up is the impact of reduced stamina and energy after SCI. Every task takes more time and energy, requiring careful choices to be made.
Furthermore, the topic of sexuality and navigating intimate partner relationships were not addressed. Family members affected by the injury were also not adequately supported. Negotiating with loved ones on how to make their homes accessible or partly accessible was absent as well. Information sessions on these topics would have been beneficial.
Additionally, I was not informed about accessible resources based on my needs and my son’s age, such as accessible libraries, arenas, daycares, schools, playgrounds, movie theaters, museums, and stores? Moreover, I struggled to find information on how to navigate public transport with a toddler? I had to deal with all of that on my own and that was rough.
During my three years, I worked with six or seven different occupational therapists. I observed that they were all solution-focused, and adopting this approach helped me in my life tremendously.
---------------------------------------------------------------------------------------------------------------------------------------------------------------------------
As part of a grant to study how differences in acute care and rehabilitation length of stay affect outcomes for people with spinal cord injury in different countries, the Center for Rehabilitation Outcomes Research has collected blog posts by people with SCI in different countries about their injuries and rehabilitation. In these posts, writers from the United States, the United Kingdom, Canada, Australia, and The Netherlands share reflections on their unique inpatient rehabilitation experiences, what worked, what they wanted more (or less) of in rehabilitation, what it was like going home, and how they are doing today. The grant is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (grant 90DPHF0012).