Winnipegger explores how disability informs her identity

Karina Cardona lives with a physical disability that stems from a rare auto-immune condition called transverse myelitis. She went from being an "ordinary" 13-year old girl to spending the past 21 years telling people that she lives with a spinal cord injury.

'I developed a perception that my body was somewhere between dead and alive.'

This is a common scene in my life: I am minding my own business when someone feels the need to discuss my limp. These encounters point out a few things about what it's like for me to live with disability: my physical locomotion is unique; the rhythm of my walk is interpreted in negative terms; and I stand out in public spaces.

These experiences have taught me that there is a strange tension between who I believe myself to be and what strangers might notice or assume about me.

My adaptation to living with disability began in the Children's Hospital in Winnipeg where my bedroom window overlooked a funeral chapel. I was admitted with a mysterious full-body paralysis that set in painfully while at home one wintry afternoon. In this environment, I developed a perception that my body was somewhere between dead and alive. It was with me but it did not listen to me.

From climbing trees to focusing on physio

I spent hours during physio and occupational therapy focusing on what it meant to be mobile. I had grown up priding myself on my physical abilities and courage. I loved climbing trees and fences, pedaling fast on my bike, skating by moonlight, serving hard and fast volleyballs and rarely backing down from a challenge. My thoughts led me to believe that mobility is the key to everything - to life. I hoped instead that as quickly as this had happened, it might just go away.

Following weeks of uncertainty, my illness was determined to stem from a rare auto-immune condition called transverse myelitis. My spinal cord had become swollen due to anti-bodies attacking one another instead of a virus and it cut off communication between my brain and my body's movement, and sensation below my collar bone. Doctors could not estimate what the extent of my recovery would be, stating that everyone is different.

None of this felt like my life.- Karina Cardona

My pediatrician had only ever seen two patients with TM in his forty years of practice; one kid had gotten right back to playing football and the other had remained a quadriplegic.

Age 13 is a pivotal time in the formation of identity. Entering into adolescence, all we want is to gain more independence. It is a tumultuous time to lose the ability to manage your own body, to allow strangers to catheterize, dress and feed you, to interrupt your education, to fall out of touch with friends' active lives and to relearn your basic capacities.

Back home, learning to get dressed again

I was discharged in early spring once my recovery was considered to have plateaued and my home passed inspection for accessibility. I had nerve damage along my entire right side which left it feeling very weak but my left side was almost back to full strength. Getting dressed was an event. I could barely grip utensils for eating. Writing with a pencil was still a memory. My legs spasmed. I needed to use the washroom entirely without notice. I walked with foot-drop.

I preferred my wheelchair to the risks and exhaustion of walking. I was supposed to wear my new custom ankle-foot orthotic (AFO) but refused as it felt so awkward and looked so awful. I was on medications that made it hard to think clearly or to stay awake. I wanted to do my favourite things but many were no longer possible. Being so static, I had gained over half of my weight in size. My body frustrated me. My friends had also marched into their teens and had stopped visiting. None of this felt like my life.

My junior high school did not have ramps or elevators. My presence felt like an uncomfortable inconvenience. No one wanted to discuss what had happened to me — not students, not teachers, not administrators. They were not particularly responsive to my occupational therapist's requests for modifications either. Making matters worse, my shaking legs banged loudly against my desk, disrupting class time.

School becomes 'an even more oppressive space'

I adored this place but they did not have supports for youth with physical challenges and it left me with a sense of guilt and shame about who I had become.

High school was an even more oppressive space. The elevator was locked and located in a corner of the three-floor building. I was to request the key on a daily basis and expected to make it between classes within ten minutes. I constantly arrived late. My washroom breaks required more time than was allotted. The distances between my classrooms were exhausting.

By November of Grade 9, school had become a more trying endeavour than I was willing to tolerate. I stopped attending classes.

The school was concerned about my absence. Three months had passed. They sent a counselor to my home to check on me. She conducted a life-mapping exercise with me. It was the first time that anyone had acknowledged I still had a future to plan for. I felt truly hopeful for the first time in a year. I accepted having a tutor come to see me on a bi-weekly basis and completed the homework at my own pace. I was ready for change.

I began exercising by cover of night. I started practicing wearing my orthotic. I had been warned that I would become dependent on it and at this point it seemed better than the wheelchair option. The weight that I had gained slowly started to come off as I would take walks of increasing length. Eventually I was able to walk around a large park block from my home even if this meant peeing in the bushes so that I could keep trekking.

I also wanted to reconnect with my family. My younger sister became my best friend. She played competitive sports but always made time for me. She had patiently and enthusiastically wheeled me about for over a year. Now she joined me as I built strength. My mother had slept in my hospital room with me for months and now she let me help her with her work. My dad continued to offer me rides to participate in anything that was of interest to me and gently asked how I was doing. I was finally ready to answer. My brother had turned 18 and no longer lived with us. I missed him.

Finding safe havens 

I quickly found a new balance between activities that energized and tired me. I spent a great deal of time working on creative expression and practicing walking. Natural environments and the school art room were my safe havens. I filled my time with these things because they helped to build my confidence. As well, my church offered me a job that I then held for over two years. Without all of these supports, I could not have reclaimed a sense of my abilities.

I graduated from high school with my peers and with lots of honours, most happily, in art and design. Lessons from my adjustment in high school helped to set up a manageable pace and workload during my undergraduate degree as well. When I ventured into the world of work, I found new challenges that I had not anticipated and that I still struggle with, but I have accomplished more goals in my young life than I ever imagined that I would have, able-bodied or not.

Attending graduate school helped me to survive through a crisis of identity, however, it also threw a giant sack of new curve balls my way. So many in fact that I have needed to take a break from writing my thesis to feel well.

At this point, I have come to recognize that my primary disability is not all that I struggle with. I have developed secondary disabilities that I cannot ignore such as depression, fatigue, rotator cuff tendonitis, myofascial pain and troubles with memory following a concussion. I attribute these to excessive efforts to operate at a pace that is not beneficial to me as a whole. I am working through these to minimize my pain and to maximize my joy.

Learning to live with disability is all about finding alternate ways of doing the things that matter most to us. We encounter challenges on a daily basis because ableist ideas, attitudes, policies, practices, structures, spaces and customs abound. There are elements of our bodies and minds that cannot overcome our environment but we need to find our ways into days that can be fulfilling and safe. We need to let people into our journey as helpers and allies. I consider my best friends, family and boyfriend to be my guardian angels.

So anyway, that's what's wrong with my leg. Now you know.

Karina Cardona's blog is part of Access Denied, a CBC Manitoba series exploring accessibility for people with disabilities in Winnipeg.

Edited by Kim Kaschor