I finally got a tattoo.
It may not seem like that big of a deal; people get tattoos all the time, sometimes they decide to get inked on a whim. You can show up at a parlor and leave an hour later with your body permanently altered. But it’s something I’ve been working toward for a long, long time — years, even. I’ve written several columns about this pursuit, so if you’ve been following along, you’ll understand how much of an undertaking this entire thing was.
Tattoos are forever, so I wasn’t going to settle for an artist I didn’t love. I was stubborn, arguably too much so, but I knew what I wanted. What’s more, I knew what I wanted was plausible. My preference wasn’t an unattainable dream; it was merely specific. If I was going to pay money for something I’d carry with me for the rest of my life, it was going to be exactly as I pictured. No more, no less.
That’s not unusual when it comes to tattoos. People approach an artist they like with a design, and if they’re not head-over-heels in love with it, it won’t go on their body. It’s as simple as that. But my situation was significantly more complicated. I couldn’t just roll up to a parlor and request a consultation. The building had to be accessible, the artist had to be comfortable with someone in a wheelchair, and so on.
I won’t rehash everything that went into this tattoo. Suffice it to say, I’ve been working on this puppy for years. The quest was dehumanizing and ugly. I gave up, tried again, gave up, tried again. I wrote many Twitter threads. (People are quick to say they’re “working” on accessibility, but they’ll swiftly gaslight you when you call them on their lies. That’s a story for another time.) But I persisted and eventually decided to use my portable ramp. It’s not the safest thing in the world, but I was determined, and out of alternative options.
In the end, the ramp worked fine. There were two flights of stairs: one to get into the building and one to get onto the tattoo platform. The first flight was easy but the second one was so steep that my dad had to drive my chair for me. But I made it! And the pain wasn’t nearly as bad as I had expected it to be. Either I have a high pain tolerance or it’s because I’m used to getting IVs, which are difficult thanks to my teeny-tiny veins.
I’ve wanted this tattoo for so long that having it done felt anticlimactic. I entered the parlor, signed some forms, and emerged an hour later with a bouquet of roses on the inside of my forearm. There is something to be said for fighting for what you want. Nothing with SMA is easy. The number of hoops I had to jump through just to get a tattoo was ridiculous. I can’t tell you how many times I wanted to call it quits.
But I wanted a tattoo. There are so many aspects of this life I’ve had no say over: my wheelchair, my headaches, the bump on the pad of my middle finger from all of the finger pokes I had as a child. The scar on my back, immortalizing my spinal fusion. Holes in the lining of my stomach for a G-tube. But this tattoo, this bouquet of roses, is something I chose. I wanted to beautify this body, which has caused me so much pain and grief, with flowers. So I did. And it was worth it.
Note: SMA News Today 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 SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.