Why I'm Sometimes Lonely, but Never Alone as a Person With a Disability

When I take a stroll around town, it’s about the only time I can think of where I feel truly alone and at peace. Watching all the strangers drive by speedily in their cars from my wheelchair, all in a hurry to go somewhere. Surrounded by people, but to them I’m just another face. Although my wheelchair is a dead giveaway that I probably need more help than others, I’m still just a stranger. When I’m whizzing down the sidewalk and passing all the people walking, I’m not helpless. I’m free.

As a person who uses a wheelchair full time, you can only imagine the help I require and the amount of people who surround me every day. This year alone, I have had 10 caregivers, all different people from different walks of life. People who get paid to help me with my most personal tasks such as getting dressed and showering.

There has never been a time where I could enjoy a shower alone with my thoughts. For a lot of us, showers are our time to decompress and escape from the world. With every drop of water, our problems are shed away momentarily. Just as I close my eyes to enjoy the warmth, I hear, “How do you want me to wash your hair?” and I have to explain it for what seems like the millionth time. No time for paradise, my brain automatically goes back into “disabled mode.”

My friends have had to come to the understanding that I am not a spur-of-the-moment type of person. If they want to make plans, I have to coordinate it with all those who take care of me. Going out is a team effort, not a solo project. My plans are detailed and never made just for me.

On my rough days, my caregivers can tell automatically that I am unwell. My silence and serious manner when I’m otherwise humorous are a dead giveaway. Whether it’s from the chronic pain I endure or an awful night of night terrors, they can read my face and I’m unable to hide it. Like the good people they are, they always ask “What’s wrong?” I can’t tell them the truth: that I just want them to go away. My need for being a human with emotions comes after my need for care.

Due to constantly being taken care of by others, I feel as though I lost myself along the way. It constantly feels like I’m playing the role of a damsel in distress. In my mind, I’m a fierce fighter who comes in dramatically on a horse, just in time to save the day. Although I have made many friends with those who are in similar situations, I still feel a deep sense of loneliness.

While there are people around me, no one truly knows the inner mechanisms of my mind. No one truly knows me separate from the wheelchair and inability to take care of myself. With this feeling of loneliness comes a deep understanding that I am never truly alone. Being alone in perfect solitude is something we need as humans once in a while, but feeling lonely is something we avoid. When it comes to that, I am no different than anyone else.

Getty image by Yacobchuk.

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