What Independence Means to Me as a Person With a Disability
For as long as I can remember, I have always considered myself very independent. As a child, it was important for me to try to accomplish a goal on my own before asking for help. My father recalls watching me struggle with fixing my bike chain, wanting desperately to help me, but knowing his intervention would be unwelcome. As a teenager, I was forever getting myself into sticky situations because I was determined to forge my own path and explore new experiences. As an adult, I was fiercely protective of my autonomy and struggled to find my purpose as an individual.
Being able-bodied, my capability and freedom to live independently and autonomously was never in question. And then, quite literally overnight, it all changed, and “independence” took on a whole new meaning. For the next four years, my idea of independence would change several times before I finally felt “normal” again.
In 2009, I developed Bickerstaff brainstem encephalitis (a variant of GBS) from a flu vaccine, and was placed in a coma for six weeks. When I awoke, I was paralyzed, could not speak and had severe vision problems. I was completely unable to communicate and relied entirely on machines and other people for all my needs. Very often my needs went unaddressed or unexpressed, or things I didn’t need or want were done to me. I had absolutely no physical independence, which was excruciatingly frustrating! My mind was muddled by the vast array of medications, and the painkillers made me dopey and altered time. I felt like an infant in the womb, completely at the mercy of someone else and often unaware of what was happening around me. The only thing I had control over were my thoughts, so I clung to them and my sanity like driftwood in a horizonless ocean.
Eventually I was able to move my body, although my feet were planter-flexed, so I was unable to stand up. Both shoulders were “frozen,” with one hand completely contractured, so I was barely able to move my limbs. I still couldn’t speak because my tracheostomy cuff was inflated to prevent aspiration, but I was able to write. I could now communicate! “Wrinkle.” “Hot.” “Mouth dry.” “Yes.” “No.” Simple thoughts and answers allowed me some independence back. When given a marker and white board, I was able to communicate what I needed and wanted. I sometimes got to choose.
When the cuff was deflated, I found my voice. Finally I could say exactly what I wanted. I could have conversations, I could share my experiences, I could ask for things and get help when I needed it. I could ask questions, disagree, make choices and direct my own care. I would not be able to get out of bed for the next year, and still had very little control over what happened to my body, but I had developed a new level of independence.
My thoughts and my voice were completely under my control now, and I used them. Because I was so frustratingly physically helpless, I was often loud and demanding, insisting on my way, my choice, my rights. I could not do it myself, I could not get out of bed, I could not walk away if I didn’t like something, so I voiced it. That was how I tried to maintain my independence.
When they finally began physiotherapy, sitting me on the edge of the bed, propping me in a supportive wheelchair and allowing my family to take me outside in the sunshine, a new kind of independence crept in. I was able to decide what I wanted to do, where I wanted to go and how hard I wanted to work each day. After 11 months, the tracheostomy came out, and I was able to take fluids, so someone would take me to the hospital Tim Horton’s each visit. And even though it had been over a year since I last had a cigarette, and against my loved ones’ advice, I chose to start smoking again. A poor choice to be sure, but my choice and mine alone. I also chose not to go back to drinking again — a wiser choice.
When I was finally well and mobile enough, I was transferred from the hospital to an intensive rehab facility, where I gained a whole new level of independence. About six months before, I was told that in order to walk again, my feet would need to be amputated and I would have to wear prosthetics. Fortunately, just before I was about to agree to the procedure, a physiatrist took interest in my case and suggested tendon release surgery with serial casting. After months of excruciating pain and physio, it worked. I was standing on my own feet!
I would continue to live life in a wheelchair, but I was ambulatory and that opened up opportunities for independence. The most important thing that happened during this time was obtaining my electric wheelchair. Now I could transport myself! While in bed, I was still as physically helpless as a child, but in my chair, my world grew. I determined where and when I wanted to go and how fast I got there. I didn’t need to rely on or wait for anyone. Aside from bath time, meals and therapy, I structured my own time and activities. It was liberating!
Over the years, as I moved from one rehab facility to the next, my independence and autonomy only grew stronger. I worked my body every day to gain each minute step towards as much recovery as possible. I began to take control over personal tasks, like administering my own meds, standing up and making my own small meals, getting my own groceries, making my own appointments and travel arrangements and directing my own care. I no longer needed help with anything other than physical needs, like bathing, dressing, toileting and physio.
I now live in a Family Care home; I have my own small suite inside my caregiver’s family home. I live completely independently and autonomously until I need help with a physical task that is beyond my capabilities. Then my caregiver is always available to assist me. This is what allows me to live so independently, which is why I made the choice to enter this program offered by the Ministry, and continue to choose to live here.
Since becoming disabled, I’ve come to realize that independence is not a physical state, but rather a state of mind. Understanding who I am, what I want, what I need, what my goals are and what I need to do to accomplish them are the mark of independence, not whether I can physically do it. I am far more than just my physical form, with its abilities and limitations. Independence is personal, internal and ever-changing, and everyone’s idea of it is subjective. Even though I still use a wheelchair, my shoulders are still frozen, and I still have limited use of my hand, I consider myself a completely independent woman.
Getty image by Alex Ugalek.