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Like anyone out there, I have my days. There are days when I feel more disabled than different. There are days when I feel broken instead of healed. There are days when I feel like my life is over and days when it’s just beginning.
Trying to figure it all out is hard when some questions don’t have answers. I had just went through planning my life over, and now I have to do it once again. Exhaust myself trying to achieve adulthood and independence. Normal isn’t something I can achieve anymore, not that I really wanted normal in the first place. My situation now is most often incomprehensible, best thought about bit by bit. Thinking of my life now in small, manageable pieces is the easiest way.
Everyone is different, and everyone changes over time. That’s just what life does, but what most may not realize about spinal cord injuries is how instantly that change occurs. There is no time. It just happens, and suddenly you’re different. It’s more than not being able to wiggle my toes, bend my knees, put one foot in front of the other and walk. What it feels like is every element and activity of my life forever changed. Everything is new.
It is quite the feeling. To feel so changed, to feel like your old self deep down inside wrapped in everything so new. I feel like myself, but different. I look like myself, but different. Beyond the struggle of learning to independently accomplish essentially everything associated with life in a wheelchair, is the struggle to embrace who I now am on the outside. It doesn’t take a genius to realize that the image of you collects all the focus today. It’s not the whole you, both inside and out, that people are looking at in the media and in real life. It’s the outside exterior of the self, and mine has changed so much.
I spent a month in a hospital bed unable to eat, and months after with little to no appetite. That, coupled with the inability to move muscles in my lower extremities, caused me to lose a significant amount of weight. For me it’s more than the pounds I’ve lost. As a young woman, I can’t recall there ever being a time where I didn’t want something about my appearance to change, however big or small. For years I worked so hard to achieve an image I could really be happy with. I exercised. I ate right. I led what most would say was a healthy life, and six months ago I was as close to happy with myself as I had been in a long time.
So for me it’s not that I’m a certain number of pounds lighter. Most women would be thrilled to shed weight, and have a problem with keeping their weight from slipping, but not me. I miss my curves. I miss my strong dancer legs. I miss not looking at myself and feeling like a skeletal version of my old self.
I used to stand tall, hold my head with confidence. Now I try my best to sit tall, but that’s a hard thing to do when you aren’t in the average person’s line of sight. It’s near impossible to be shy and inch your way through a crowd when you need enough room for you and your wheels, and then there’s that thing about being under five feet “tall”. Tapping shoulders to ask for a little more room is no problem at all. The oddest thing is that I’m either the only thing people see or not seen at all. The strangest, most inexplicable look or nothing at all. At times I can’t quite understand why I go so unnoticed. After all, I roll around feeling like a neon sign hangs above my head. Most places I go nowadays are free of wheelchair users, except for me.
I made the decision a few weeks ago to try my hand at working again. Ever since I ceased working my job in retail, I’ve wondered what it would be like to take it on in a wheelchair. Would it be physically impossible? Would it be too tiring for me? Would customers even look at me as an employee? Luckily for me, my coworkers are family, and invited me back for none other than Black Friday weekend. For five hours I stationed myself near the end of the line, removing customers’ sensors and hangers from their merchandise, while trying to offer whatever customer service I could. In those five hours I got a mixture of reactions. Some people didn’t bat an eye at the fact I need a mobility aid to get around. Others proceeded with caution. I imagine when people become faced with wheelchair users a multitude of questions must pop into their heads, much like the question I received that day. “Do you actually need the wheelchair, or are you just sitting in it?” Over time you learn to answer these questions swiftly, without any thought as to how a person could wonder such a thing.
Fitting into a world made for able-bodied people presents a challenge daily. Far more challenging than that is facing the perception of yourself solely based on the fact you appear different than most. And then there is the challenge of being a woman in a world where you have to look a certain way to be considered beautiful. It’s not just learning how to this or that as a paraplegic. It’s about learning how to live as a paraplegic. I can’t live in fear of people looking at me a certain way. Of looking in the mirror and not liking the reflection. Of limiting myself. I have to live to love myself, no matter what.