Independence, I’ve been chasing it in one form or another my whole life and redefining what it was as I went along. As a child my favorite moments were when I was running through the forest pretending to be Pocahontas, or exploring unfinished houses to find hidden treasures, or riding my bike around my neighborhood like I owned it. These were the ultimate freedoms of my youth.
As I grew up, first getting my license and then moving away for university were the ultimate acts of independence allowing me to find my own identity. It was liberating to be in control of everything and do whatever I wanted no holds barred.
And now as my 20’s end and I enter my 30’s I am once again on the hunt for this elusive independence and redefining what it means. In the beginning stages of this journey, independence seemed like a twisted joke. I was dependent on the people around me for all the basic necessities in life and although I was learning to ask for help I still felt helpless.
I think when anyone goes through a life-changing situation like this, independence, what it means to you and how you can work towards getting it back are rarely spoken about. The rehabilitation process is designed to get you back into the community and allow for “independent living” but I can tell you that just because you meet the requirements to go back into the community, it doesn’t mean that you feel like an independent person. It just means you are now required to deal with what the new normal is for you.
There were times when I would be out in the community in my wheelchair and I would see how restrictive my life had become. Countless restaurants, bars, shops and streets were all ruled out due to one prohibitive feature or another. I would miss social events because there was no wheelchair access or feel embarrassed at having someone carry me up stairs or people parting the way so I could enter a venue.
Going from fully able and never thinking about the slope of a cross walk or the steps to a restaurant, to feeling confined and limited in the world around me became an unavoidable constant in my life.
Independence feels like it is playing a game of poker with me; it doesn’t want to show me its hand. With each physical milestone I achieve, I’m granted a new modicum of independence. As I passed these milestones, I began to crave these morsels of independence like some kind of addict. I found myself really savoring it when I could once again dress myself, wash myself, when I could get in and out of a wheelchair without assistance or when I could bend down and tie my shoes in a wheelchair. I began to feel human again and find hope in the process.
Independence for me became about small wins. I would fiercely resist anyone who tried to help me when I was doing these tasks. I had worked so hard to regain these abilities. Others might have seen me struggling with these things, but for me I felt like ‘look at me go!’
For loved ones who want to help, finding the balance between letting someone do things for themselves and doing it for them is a difficult one to manage. For me personally, this was one of the factors I would use to decide whether to let someone in on my journey or keep them at arms length. I know that may sound harsh but the truth is you need people who will enable you, who will push you to try and who will take you outside of your comfort zone. There is a time and a place for the help of others but not assuming someone wants your help is just as important.
What is normal can look a million different ways, but the fight for independence always looks the same. It is our spirit seeking freedom and us fighting for the right to choose our own pathway.