People sometimes say their cars are an extension of their personality: sporty, sexy, rugged, classy, adventurous — any of the descriptors used in commercials.
I take that idea a bit further. A true extension of my personality, my car is a little ridiculous and a lot of fun, and she wears her heart on her sleeve, with decals showing peace, hope, butterflies, and sarcoidosis awareness.
Everywhere I go, people smile, flash me a thumbs-up or a peace sign, and tell me how much they love my car. To me, that’s mission accomplished. If I can bring a smile to someone’s face, I feel like I’ve done my job.
In a similar fashion, we dress to represent aspects of our personalities and mood. We choose clothing and accessories to reflect how we feel about ourselves and project how we want to be seen. That can be even more necessary as we become disabled by sarcoidosis or another condition. It’s easy to feel like we’re not ourselves anymore when we can no longer do the things we did previously.
When that happens, many of us retreat into ourselves. We just want to blend in and don’t want to call attention to ourselves or our problems. This may be due to internalized ableism, ableism we see all around us, or our feelings about the very real loss that we’re experiencing. But what we’re really doing here is reinforcing negative sentiments and making ourselves feel worse.
I’ve pretty much gone in the opposite direction. It started when I realized I’d need to use a cane, my first visible sign of illness and disability. I fought it for a while, struggling and suffering with every step before I could admit to myself that I needed help. But once I accepted that fact, I decided that if I needed a cane, I would tie it up with hippie scarves, like a Steven Tyler microphone. I changed scarves daily to match my outfits.
That little touch changed the way people looked at me and the way I saw myself. Rather than attracting pity for the poor, disabled woman, I was the one with the cool cane. People smiled at the style and laughed at the explanation. That sometimes led to a friendly conversation, while other times it was just a moment in passing. Either way, it was a positive interaction.
Unfortunately, the cane wasn’t enough for long distances. I resisted even more, but ultimately conceded. I rented a mobility scooter for my next advocacy day on Capitol Hill in Washington, D.C. It didn’t take long to see what a smart move that was. I saw how much some of the others were struggling with the distance and the hills, and I knew that I would’ve been suffering just as much without the scooter.
I rented a scooter again for my next vacation and saw how much I needed it. But I also saw how people looked at me. There was pity in their eyes, as well as disdain and annoyance that I took up more space on the path. “What’s wrong with you?” they’d ask, which fed into my own insecurities and made me feel “less than” a healthy, abled person.
When my disability case was approved, a mobility scooter was one of the first things I bought. After those recent trips, I knew I needed one, but I also saw how inconsistent, unreliable, and inconvenient a rental could be. I did a lot of research and eventually found one that folded up with a remote and could be placed in the trunk of a car. It was everything I needed, but still not something I wanted.
I decided that, like my car, my scooter should reflect my hippie spirit. I ordered decals portraying peace, love, and sarcoidosis awareness. As expected, it completely changed the way people responded to me. Instead of pity and contempt, I got joy and congeniality. I got less “What’s wrong?” and more “Nice ride.”
When I broke my foot last year, I had to get new supportive equipment. My doctor ordered an orthopedic boot and a knee walker. To go along with that, I ordered a package of hippie stickers that I could use to decorate both. I’ve been told I’ll soon need a hip replacement, and I’ve already started looking into walkers with purple bars and flower power seat covers.
I do this for the joyous response it invites, but really it’s more for me. Accessorizing my accessories helps me focus on the fun, rather than the loss; on the style, not the stigma; and on the reflection of my personality. This is who I am. I may be disabled by sarcoidosis and arthritis, but that doesn’t mean I can’t still be me.
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.