Connecting With ‘The Pretty One’

The latest book on my “just read” list is Keah Brown’s The Pretty One. 

I first saw the book at Target and was immediately intrigued by the author’s smile and subtitle – “On Life, Pop Culture, Disability, and Other Reasons To Fall In Love With Me.”

Keah Brown and I are different.

She is in her twenties; I am in my forties.

She is black; I am white.

Her disability is visible; mine is invisible.

However, her book proves a very common theme – the more specific you can get in your writing, the more you’ll find it relates to so many different people. You don’t have to be like Keah Brown to read this book. In fact, maybe it’s better if you’re not. Because then you’re forced to go along with Ms. Brown for this ride; to get a sense of what it is like when most of the movies you enjoy watching don’t feature a character that looks like you. (Although, like Ms. Brown and her sister, many of my friends did refer to my younger sister as the “pretty one.”)

Here are a few takeaways I’d like to share with you this week:

“The loss of control is where the true manifestation of my anxiety begins: the fact that you’re put under and you have no idea what is being done to your body, but you lead with the hope that it is the right thing, as strangers cut into your body in an effort to make it better. The reality is that I frequently cut myself open in the figurative sense when I share bits of myself with readers and audiences, but the idea of being cut open in real life will never not worry me despite the many experiences I have had.” 

“The pain is still there when it wants to be. The pain is one of the factors of disability that I cannot control. All I can do is try my best to take back the narrative about what living with disabilities is like.”  

“I like that my journey has not been easy, because then I would not have my stories to tell. Getting to that place of thought was hard, but so much of my life makes sense in these terms.”

“Imagine if we gave ourselves the same sort of love, attention, and understanding we give the people we love. If we allowed our vulnerability to fuel us to be better people, to say and do more, to feel in and navigate a world that champions tears as much as it does strength, to see tears and crying as signs of strength, even.” 

“I have always believed it is imperative that we learn from the experiences and histories of other people to better understand each other and ourselves.”

 

10 Tips and Tricks for Parents With Invisible Disabilities

Don’t forget to take care of yourself and show yourself some love!

 

I’m the proud mother of an 11-year-old son. I’m quick to boast, and tell you about Ryan’s curiosity (he asked me what the nurse does with his blood after a blood test.  In all my years, I had never thought to wonder). I’m quick to brag about his kind heart (without prompting, the way Ryan holds Grandpa’s hand while walking through a museum, and slows his steps down to match Grandpa’s). I’ll smile and tell you how Ryan loves to dance and sing and is equally entertained by the Beatles, Stevie Wonder, Justin Timberlake, and Prince.

But I’m not as quick to talk about myself. I don’t immediately tell people about my invisible disability, the rare autoimmune disease coursing through my body (and on bad days, I think it’s cursing my body). It’s called Undifferentiated Connective Tissue Disease and has overlapping symptoms of lupus, myositis, and rheumatoid arthritis.

Those words begin an essay recently published at Mother’s Day Magazine.  I have been living with my autoimmune disease for nine years.  There are moments when I think I’ve figured things out, I’ve got a handle on things.  And then there are the moments when I feel so confused, so sad, so frightened, so much pain that I just want to sink to the floor and cry. 

But I can’t.  

Because I have an 11-year-old son who needs to be fed; who needs to be taken to school, the library, and the dentist; who needs me.

So, I have developed a few “tricks and tips” that help me get through the day.  Click here to read “10 Tips and Tricks for Moms Living with Invisible Disabilities.”  (Here’s one I’ll share right now – Eggo Waffles count as dinner.)

 

Here’s Why Invisibility Isn’t Always a Super Power 

My son and I playing handball. Disabilities don’t all look the same.

Close your eyes for a moment and picture a disabled person.  Keep that image in mind.  

What does she look like?  

How does she behave?  

What can she do?  

What can’t she do?  

What does she need help with?

 

Now, tell me if these descriptions match the picture in your imagination:

A woman and her son ride their bikes in their neighborhood.

A woman spends 30 minutes in her garden, weeding, pruning her bougainvillea vine, re-arranging large pots, and then sweeping up the mess she made on the sidewalk.

A woman goes for a leisurely walk in her neighborhood, bending over to smell a light pink rose, stopping to admire a butterfly that is perched on a leaf.

A woman sees her ninety-year-old neighbor arrive home in an Uber.  Her neighbor struggles to hang the grocery bags from her walker.  The woman goes across the street, and carries the bags for her neighbor, helps her neighbor into her house, and brings each bag into her neighbor’s kitchen.

 

What if I told you the woman above was me.  And what if I told you that according to the state of California, I am also a disabled woman.  Do my actions match the mental image you had?

Probably not.  Most people have a very limited idea of what a disabled person looks like.  I know I used to.

Which brings me to my newest essay.  Last week, The Mighty published my personal essay “Why ‘Invisibility’ Is Not a Superpower When It Comes to Illness.”  You can click here to read it. 

And remember, just because you can’t see someone’s pain, doesn’t mean they aren’t hurting.