Dating with a Disability – Yes, it’s possible!

“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 comfortability. Nothing too fancy but 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 that a disability diagnosis automatically nails the coffin shut on the opportunity for a dating life. Some even think that means that 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 wheel chair – 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 that 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 the life sentence of 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 that longevity isn’t promised. The life that I do have comes with challenges impacting my “normal” function.

Comprised motor function means that 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. Ha!).

At times, breathing and swallowing can be troubling. The very idea scares me, even at the thought. 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 embryotic 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 occur.

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 that I can meet his needs or will he think that 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 that 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 that 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, feel like I’m too much and far too complicated.

But in this process, I’ve learned that 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 that 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 who I can grow with. As a business owner and a woman who has always been on the go, my match would be someone who able to keep up with me, challenge me and someone who I can volley ideas with. 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 that 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 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 that those with Muscular Dystrophy and other disabilities can have a place where they feel most comfortable to be their best selves without judgement in an able-bodied-focused app.

Every day, I’m blessed to know that I’m showing up for myself, no matter what. When I do date, I know that that person will show up for me in all the ways that I need, too.

In case you’re like the occasional me that worries that 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 that done, but don’t compromise your chance at love and happiness because you think that 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) anyway. Remember, you have muscular dystrophy, 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!

Here’s to you! May we find our special someone who we can be Crazy in Love with til’ the End of Time! Cheers!

Keisha’s Guide to Beyoncé Pick-Me-Ups

After my diagnosis in graduate school, it took a little while for me to come back into myself. I’d been a quarter of the way through my life when I started getting strange symptoms and discomfort. When the doctors first shared, I experienced a myriad of emotions. I was filled with questions – lots of ‘what ifs?’ and ‘what nows?’ I worried about my life and how it would change in the weeks, months and years to come. I considered that it was certainly possible that the doctors could have had it all wrong. I came up with pretty much every excuse in the book. But then, I felt a little twang of relief – now having something identifiable to go alongside the symptoms I’d been managing for some time before.

After a while, I realized that most amazing thing to date. And let me tell you – it was a true GAME CHANGER.

You ready for it?

I have muscular dystrophy, but I am not muscular dystrophy.

It may sound a little crazy to say, but it’s true. For a while, my diagnosis felt like not only an identifier but my whole identity. My life had to change drastically around it: my daily routines, my travel plans (I couldn’t walk as much anymore and I had to stop driving), some level of my independence, my schedule (hello, tons of doctors’appointments!). I fell into that trap of thinking that MD was all of who I was.

You may see me zipping away in my wheelchair or getting around town with a slight “pimp walk” (see my last post!)but it doesn’t even begin to define who I am.

But the nitty gritty truth of it is: I’m still very much who I was destined to be with or without a diagnosis.

I’m still the go-getter I always was. I just exchanged a life of visual merchandising for top brands and storesfor an amazing journey of entrepreneurship and empowerment with Girls Chronically Rock. (Even better! With my GCR line I still get to get my hands dirty with the merchandising. I absolutely love it!)

I’m still the fabulously bubbly woman I’ve always been. And I get the chance to showcase my smile and style even more with fun photoshoots.

I’m still the fashionista that everyone has known me to be. Fun t-shirts and bold pairings have always been may favorite. Now, I can rock my own line, make a statement and still flash my fabulous style!

I’m still the friend I always was. Nothing has stopped me from hitting the town with my girlfriends. This process has even blessed me with a whole selection of new friends to enjoy as well.

I’m still the lover of food I was before the diagnosis. I promise, I can still throw down on delicious pizza and a side of buffalo chicken wings.

And, 100%, I’m still A BEYONCE FAN. I don’t care what happens, Bey always has something to match my mood – which makes perfect sense considering that we’re both Virgos. (Her birthday is only one day before mine!) I’ve been a big fan since her Destiny Child days, every new single gets me excited all the same. I feel like we’re connected forever!

Life is full of ups, downs, and things that seem to flip your world upside down. That’s true for everybody. But as for me and my house, Beyoncé’s music gives that special something to at least help fix just about any foul mood that may or may not come my way.

I wanted to share some of my go-to Beyoncé faves with you!

When you’re getting ready to have a great night out with your girls…1. Party

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“You a bad girl, and your friends bad too (ooh!). We got the swag sauce, she dripping swagu (ohh!)” Oh yes! When I go out on the town, this is my reminder that my girls and I are fine, fierce and fun. This is most definitely a bop for us!

If you’ve had the chance to hear the original version, Bey also shares this empowering sentiment at the end of the song that really speaks to me:

“As a black woman, I used to feel like the world wanted me to stay in my little box. And black women often feel underestimated. I wanted us to be proud of not only the show, but the process…”

I won’t leave it all here, but you can enjoy the rest by searching it on YouTube!2. Get Me Bodied

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If you’ve ever been on the dance floor and this song game on, you know how much energy it brings. Beyoncé gives you voguing, a workout of pop-dance moves and a chance to “pose for the camera, now click, click, click. This is just the song to move, groove and have a great time in lots of laughter with your friends, family, boo-thing – whoever happens to be cutting it up with you on the floor at that time.

Dear Keisha,

Here we are in 2020! Yay! In the last year, you learned so many lessons. You gathered so many stories. Had the opportunity to participate in so many features. You did the thing and are continuing to make a name for you and your brand, Girls Chronically Rock!

Going forward, I want you to always be reminded of three very important things: your present, your past and your future. They’re all vital to consider when preparing for all the success in store for GCR.

I am trusting you to value your present. Take note of each moment and allow time to savor. Each breath, each thought, each smile – they’re all important milestones that allow you to continue to live out your purpose.  Your dream and passion for GCR depends on how you live each day. Remember to take care of yourself so that you can help to take care of others. That is your mission. This year, I trust you to stay active. A healthy life will allow you to make appearances. Make connections. Make great on the goals that you have set. Treat your body well with compassion. While I want for a healthy exercise regimen, I don’t want you to sacrifice a couple nights of wings with a side of chips and dips. You deserve that luxury! Enjoy your faves. It’s okay. When you’re feeling low or lacking kind words for yourself, speak to yourself as you would Beyoncé. Now I KNOW you wouldn’t be unkind to her – treat your mind and body with the same grace and genuine kindness.

When you think of the past, I need you to so with consideration but without dwelling. You are where you are now because you made the right decisions to get you here. When the symptoms and diagnoses creeped into your life, you didn’t fall or falter – you birthed a divine vision instead, Girls Chronically Rock. That’s a big deal, remember that. Use your story as a testimony and allow yourself to reflect on it for relatability and connection, but never to bring yourself down. Use your proven strength then, as encouragement for your next battle, for you and for your Chronically Ill Badass family. Yes, you created a family. You created a brand. You created a victory over something that tried to make you a victim. Be proud of that. I’m proud of that.

Plan to continue your legacy. Look forward to great things to come in 2020. With the changes you’re making now, this year can be the greatest start of the decade – as you hit runways, television screens, and God-willing, Oprah Magazine! (Fingers crossed!) Your story is purposed to encouraged others. Never forget that. Embrace it. Going into this year, I want you to keep in mind that movement made not be linear or constant, but you can count on it to still happen. Sales of merchandise may vary from month to month. You may get a feature one month and maybe none, for two. If you don’t get a response right away, it doesn’t signify rejection. These things could produce insecurity, but I believe in you enough to know that they will not stop you from being secure in who you are and what you’ve come to do. What matters is that you keep going anyway – telling your story and sharing your mission without ceasing.

Keisha, I am so proud of you. If no one told you today, I’ll tell you: I LOVE YOU. You are spunky, bright and full of smiles and laughter. You are a go-getter. You are an empire. You are success. The moment your mind tries to tell you otherwise, you head right back to this letter and read this over and over again until the doubt dissolves. Keep striving, badass!

With love,

Keisha Greaves

Alexa, Siri, voice-activated apps, phones, and even TVs have been a great convenience throughout my journey with a chronic illness. Having the ability to turn off the light without risking a fall or calling for help when no one around had tremendously changed the level of independence I am able to enjoy. However, one of my areas of passion, fashion, has always been a challenging space to navigate living with Limb-Girdle Muscular Dystrophy (LGMD). Having the energy to open and close a series of buttons, secure long zippers or even keep my arms raised over my head can present challenges for getting dressed without the assistance of personal aid.

Thankfully, that’s all about to change as adaptive fashion is creating a new subcategory of fashion made with the limitations of the customer in mind. Adaptive clothing is defined as clothing designed with those with disabilities, the elderly and anyone who struggles with clothing themselves in mind.

Mindy Scheier, the founder of Runway of Dreams, works with big brands in the fashion industry to come up with modifications to create adaptive clothing that mirrors mainstream fashion trends and meets the needs of the 1 billion people living with a disability.

After watching Mindy talked about her son’s personal battle with LGMD, I was inspired to dream up a few adaptive fashion options for my Girls Chronically Rock brand, so get connected and stay tuned for updates on the collection reveal!

Take a few minutes and watch the TED talk Mindy gives below to learn why adaptive fashion is such an important topic in the fashion industry and in the lives of those of us who live with a disability or chronic illness.

Girls Chronically Rock was birthed out of the need for community after I was diagnosed with Muscular Dystrophy a few years back. A rare diagnosis, only affecting about 50,000 Americans, I realized many people don’t quite know what MD is. Before my life had to make room for it, I didn’t know what is was either. In honor of Rare Disease Day (today!), let’s answer some of the common MD questions:

What is muscular dystrophy?

Contrary to popular belief, muscular dystrophy is a series of muscle diseases that causes the weakening of the skeletal muscles over a series of time. The patient’s body has a mutation, some abnormal genes start to interfere with the production of proteins needed for the body to generate healthy muscle.

There are no external causes of Muscular Dystrophy. Internally, it comes about when certain genes in the body are mutated, causing the production of proteins in the body to generate healthy muscle fibers.

Once a person has the mutation, MD can become hereditary. Those with a family history of the disease are at a higher risk of developing the disease or passing it along to their children.

What symptoms should I look out for?

According to Healthline, our bodies house more than 650 skeletal muscles. Therefore, Muscular Dystrophy can impact a very large portion of the body in different ways.

Those who have not been previously diagnosed, they may want to check in with a doctor if they have any of the following symptoms:

• Difficulty walking
• Difficulty with use of arms
• Limited mobility
• Difficulty breathing
• Scoliosis
• Heart problems
• Difficulty swallowing

Depending on the type of MD, a person can have a difference in severity, number, locale and onset of symptoms.

What types of Muscular Dystrophy are there?

We currently know about nine types of MD, but there are six that are most common. Each type contains slightly different genetic mutations and are altered depending on the subtype, if applicable.

1. Duchenne – The most common type of MD, this type usually occurs in young boys between birth and the age of two.
2. Becker – Most similar to the Duchenne type, Becker MD mimic the symptoms but progresses much slower and tends to be milder in nature. Those with this time usually don’t experience symptoms or diagnoses until their mid-20’s or later.
3. Myotonic – Those with myotonic MD are majorly affected in their face and neck muscles. They have an inability to relax muscles after contractions and often experience drooping faces and eyelids and necks that resemble swans’.
4. Facioscapulohumeral (FSHD) – Shoulders and hips are first to be affected with this type of muscular dystrophy. Shoulder blades tend to stick out like wings when the arms are raised.
5. Congenital – This type of MD impacts boys and girls between birth and the age of two. It can vary from a mild disability to a severe impairment.
6. Limb-girdle – Onset of this type of MD typically occurs between childhood and adolescent years. Hip and shoulder muscles weaken first, followed by drastic difficulty with lifting the front part of their feet, their arms, and legs.

What about me?

When I was 24, just finishing up my MBA program, I was hit with an onslaught of symptoms. I had increasing difficulty with moving my legs and lifting my arms. Pangs of pain happened more frequently. And I was falling left and right. It was stressful and utterly confusing trying to assess if it was my weight, or maybe something wrong in my brain. It certainly couldn’t have been my age – I hadn’t even made it to my quarter life yet.

Many doctor appointments later, I was diagnosed with limb-girdle muscular dystrophy. Many years and additional doctor appointments past, I’m still unaware of my subtype. Currently, MD doesn’t have a cure, but can be managed with personalized care plans that incorporates medications, breathing apparatuses, physical therapy, home health-aides (to help with feeding, make up application, bathing, etc.), and transport aides. In my years of dealing with this, I’ve been trying to enroll in trials to see if I could gain insight about my subtype and maybe even get closer to helping finding the cure, but to no avail.

Trials are tricky. They can either help solve the problem or cause a slew of others, making the participant even sicker than they were before. It’s risky business. So I continue to trend lightly, making sure to take notes and the advice of my doctors, be transparent and honest with my home health aide and doing what I can to manage my self-care and positive emotions.

(Re)sources: Mayo Clinic, WebMD, Muscular Dystrophy Association (MDA)