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What It Was Like to Go 48 Hours Without My Power Wheelchair

I have been a wheelchair user for 10 years. Due to contractures in my shoulders and right arm, I am unable to manually propel myself, so my wheelchair is electric. I am ambulatory, so I am able to transfer in and out of my wheelchair without assistance and move about my home. However, due to vision, balance, and coordination issues, among other things, I am unable to safely and comfortably leave my home without it. I rely on my wheelchair every waking minute, so when my wheelchair had to remain at my service provider’s shop for two days, I realized just how important it was to me, and why I’m so grateful to have it.

Pain and Spasticity Management

My power chair is customized for my needs, with the ability to make a variety of adjustments. The cushion and backrest are designed to keep me upright and comfortable for the many hours I spend in the chair. The tilt function allows me to lean back and ease pressure in my neck and spine, and relax the abdominal spasticity. The foot and leg tilt/elevate allow me to relieve the pressure on my contractured ankles and brace myself against sliding in my seat due to the curve in my spine. Aside from my bed, my wheelchair is the only place I am comfortable for an extended period of time.

While my chair was being serviced, I spent those days in the lift chair I inherited from my grandfather. It’s like an electric La-Z-Boy that also tilts forward so I can stand up from it. It’s a very comfortable chair, wide and well-padded so my spine doesn’t dig into the back. However, there is no lateral or lumbar support, so my body ended up caving in on itself, and I found myself constantly struggling not to fall to the left. I could raise my legs, but there was nothing to brace against, so I kept sliding in the seat. It didn’t take long before I ached in half a dozen new places. My headache and spasticity had doubled in intensity, and I felt a whole new appreciation for the device that eased my body’s angst.

Rest and Safety

I require my chair whenever I leave my home and its flat, smooth floors. Not only is it difficult to walk for long, it is unsafe and anxiety-inducing. Even stepping out onto my concrete patio can be precarious. I risk tripping on a tuft of grass growing out of a crack in the pavement, misstepping and pitching forward, getting dizzy in the bright light, and any number of perils that could leave me bleeding on the pavement. I can stay standing for only so long before I must rest, so many of the items in my home are placed where I can access them from my chair. Like most disabled people, I have a limited number of “spoons,” so I plan my activities according to how long I will be standing at a time and how many times I will be out of my chair.

Without my chair, I was forced to stand and walk every time I needed something. To a lot of people, that may seem like no big deal. Standing and walking for me, however, takes a great deal of energy and concentration, more so as I become fatigued. So, by the end of the first day, I was exhausted as I collapsed into bed. At the end of the second day, I skipped dinner and went to bed early because I simply had zero energy left. My chair is a sanctuary in which I can conserve energy and safely navigate the world.

Independence and Mental Health

The primary reason I am so grateful for my wheelchair is the independence and freedom it provides me. With my wheelchair, I am able to safely and comfortably venture out into the world, attend appointments and events, shop for myself, walk my dog, visit loved ones, pursue interests, etc. My mental health is in the best condition it has ever been, and I feel fulfilled in my life at present.

While my wheelchair was being serviced, I was unable to leave my home, and because I was in pain and fatigued, I didn’t feel like having visitors. I spent most of my time slumped like a sack of potatoes in my chair, simultaneously watching TV, scrolling through my phone, and glimpsing the world outside my front door carrying on with its spring activities. By the end of the second day, my mood had taken a serious dip. I felt trapped, irritable and impatient, my writing had become apathetic, and I delayed any task that required me to stand up, including personal hygiene and nutrition. When my chair arrived back home, I felt an instant surge of relief and elation, and an overwhelming sense of gratitude that I could rejoin the world that very day.

Privilege

I would be remiss if I didn’t include the recognition of my privilege in my list of gratitudes about my wheelchair. Mobility devices can be very expensive to obtain and maintain. In developing countries, approximately 90% of people who require a wheelchair do not have access to one (almost the opposite of developed countries). I live in a country that has universal health care, and my husband has a good insurance policy through his work. My first $23K chair cost me nothing, (although maintenance and repairs are a different matter), and my current $25K chair only cost me the amount for the higher motor speed. I am acutely aware of how fortunate I am, and immensely grateful for it.

48 Hours Was All It Took

After using a power wheelchair for over a decade, I had forgotten what an incredibly valuable tool it is, and how necessary it is for my overall quality of life. It did not take long for me to remember what living without a mobility device was like, and how its presence impacts every part of my daily life. 48 hours was all it took to remember to appreciate my wheelchair for all it offers me, and be grateful for the privilege of owning it.

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