“Oh, shut it down when the time comes
Oh, pull out the big guns
Oh, and put your freakum dress on”
Lines from a throwback Bey song blare, because you know, my fave singer sparks unstoppable confidence. I always strive to find something that shows my personality — something cute without compromising comfort. Nothing too fancy, but it can complement a nice pair of hoop earrings. I put on my fiercest “war paint,” a makeup look that gives me a gentle glow and highlights my smile. My PCA brushes my hair and gives me a good once-over to confirm that I’m good to go for a big night. The MBTA ride has already been scheduled.
Tonight is date night.
It’s become funny to me that people assume a disability diagnosis automatically nails the coffin shut on the opportunity for a dating life. Some even think that means we’ve got no social life at all. But oh, how wrong they are!
Girls’ nights and happy hours still exist. I still like to get dressed up and hang out with friends for dinner, or even on occasion head to a local lounge or rooftop bar and have a good time. I still meet people — therefore, I still have the opportunity to date. If a guy approaches me while I’m out and I’m feeling him, we might connect. But that doesn’t happen that often; I’m particular. And by now, my friends know better than to try to play matchmaker. Ha!
I prefer online dating. I’ve been on a few of the dating apps. I come up with a fitting bio to showcase who I am and select a few of my favorite photos of myself. I absolutely include pictures of me confidently in my wheelchair — what do I have to hide? The last thing I want to do is to cover up who I am, so I do my best to let potential suitors know the real deal.
Does it turn people away? It might. But it doesn’t rule out everyone. You’d be surprised by the comments some people I know have gotten from those who want to get to know what it’s like to date someone with a disability or even those who fetishize the idea of having sex in a wheelchair. I prepare for the weird comments as they come, but there’s someone and something for everybody. And I have gotten to have some pretty interesting conversations and dates out of it.
Every so often, when I think about my dating life, I fear the idea of being a “burden.” I battle with degenerating muscle function which comes with the promise of an atypical day-by-day. It makes me appreciate life.
Some people who have lived with the disease have been in battle mode since childhood. Others like myself, experience symptoms closer into early adulthood. I don’t really like to consider myself one of the lucky ones, but muscular dystrophy gives me a deeper appreciation for life. I value each day. Accomplishing tasks — fabulously, I might add — gives me reason to celebrate the little things all the time, because I know longevity isn’t promised. The life I do have comes with challenges impacting my “normal” function.
Compromised motor function means sometimes I have difficulty walking, moving around or standing without falling. It also means I get to ride in style in my motorized wheelchair or test out my “pimp walk.” (Really, one time a kid thought I was a pimp as I was using my cane to get around the streets of Boston!)
At times, breathing and swallowing can be troubling. The very idea scares me. But there’s comfort in knowing that modern medicine can help with medication and a ventilator, if I need it.
Pain can be inevitable. No matter the age when someone develops MD — which can occur even in the embryonic stage — muscle aches and stiffness are among the first notable symptoms. As the proteins in the body begin to lose their might, things as simple as sitting up from a lying position can become difficult, then impossible.
All these symptoms in mind, I find myself parsing through a sea of anxiety when thinking about meeting my mate. I wonder if I’ll ever find my perfect match, who can truly not consider me a burden, even when I feel like one. And I will feel like one sometimes. I don’t want to overwhelm him as he witnesses my challenges or accompanies me to my wellness checks. I question if he will feel I can meet his needs or will he think my MD will get in the way? I definitely do not want to leave him a widower, either. I don’t know who he is yet — but I know in my heart he doesn’t deserve that fate.
These thoughts come often. I know there’s no way around it — the disease, the questions or the reality that I may not be for everyone. While a lot of men I encounter are dishonest about it their feelings towards it, I know there are some who can’t handle a love affair with a MD warrior. There’s another group of men who don’t even want to. They just want to be nice, but it still hurts. Sometimes I feel like I’m too much and far too complicated.
But in this process, I’ve learned there’s nothing new under the sun. My bout with muscular dystrophy allows for me to let my smarts take the spotlight and develop clever workarounds against my obstacles. I’m also reminded I’m not the only one with a disability, which helps, because others who have come before me and those who are experiencing it with me have lots of wisdom to offer. I’m reassured by some friends I’ve made in various groups.
Social media and YouTube channels help a lot, too. I often search the hashtag #DisabilityAndDating. It makes me feel seen and I’m reminded that many others have not had to sacrifice marriage, a family or love because they aren’t as able-bodied as the next. One of my channels to check out is Sitting Pretty LoLo. (Here’s a video she did a while ago about dating with a disability!) Videos like these are always helpful for me.
I still plan to fall in love. When it’s time, I hope to find someone I can grow with. As a business owner and a woman who has always been on the go, my match would be someone who is able to keep up with me, challenge me and someone I can talk to about my ideas. I love to laugh — so of course that someone has to be entertaining. They’d have to be patient and supportive — with my pursuits and with my physical limitations. I really want to build an empire with a partner who is also my best friend. I pray he will appreciate life as much as I do and can feel just as happy and fulfilled with me as he would with a woman without MD.
I say when it’s time because for now, I’ve been focused on my business. When things calm down, I might find myself back on a dating app or two. One day, I might even create my own so those with muscular dystrophy and other disabilities can have a place where they feel most comfortable to be their best selves without judgment in an able-bodied-focused app.
Every day, I’m blessed to know I’m showing up for myself, no matter what. When I do date, I know that person will show up for me in all the ways I need, too.
In case you’re like the occasional me that worries it won’t happen, here’s some food for thought for you to take with you. Always remember to:
1. Go for it! It’s definitely easier said than done, but don’t compromise your chance at love and happiness because you think you can’t have it. You totally can. We’re out here doing it!
2. You can still have sex. It may not look like the movies — but your life is not over and boring because you have a walker, wheelchair etc. You and your partner have the fortune of getting creative — which can be super fun in itself.
3. Move confidently. It’s easy to showcase yourself without showing your assisting apparatus while online dating, but my guess is you’re planning to meet up with the person at some point, right? Show who you are unapologetically. People will adapt and enjoy who you are outside of it. And if one or two bad apples don’t, they aren’t the one(s) for you anyway. Remember, you have a disability, but that’s not who you are.
4. Have fun! Dating should be a fun experience for everyone. You are not the exception. Go ahead and feel yourself! Get sexy and enjoy yourself. Your disability is not all of who you are. It’s something to embrace and work around at times, but you are still the wonderful, amazing person you’ve always been. Look in the mirror and remind yourself, if you’ve got to, then tilt your chin up and show the world!