Brianna

Brianna

Balancing a career with the demands of a rare disease

Getting an M.A. in mental health counseling was never part of the plan. I didn’t expect to fall in love with the profession my senior year of high school, but fall in love I did, all because I took an Advanced Placement class in psychology. I graduated college with a B.A. in psychology and every intention of becoming a therapist.

A Master’s degree was the next logical step; I couldn’t become a therapist without one. So I did the research and applied to a little-known university in suburban Indiana. My first few years in the program were blissful. I loved everything about it, from the coursework to the occasionally strange in-person assignments, like attending an open Alcoholics Anonymous meeting. I felt like I was doing something with my life. I felt like I was on the right track.

Then I learned more about what it takes to become a therapist.

It’s not just the coursework or the occasionally strange in-person assignments. It’s the years of supervised clinical work. It’s the examination and licensure and, above all, the long and thankless hours required to even think about becoming a therapist. As much as I loved counseling, I knew in my gut that my body would not be able to withstand the rigor of the profession.

I could burn myself out, but I had no guarantee the burnout would lead to anything but more health problems. I was faced with a choice: a career I loved or my wellbeing.

“It wasn’t an easy decision. But at the end of the day, I will always prioritize balance.”

It wasn’t an easy decision. But at the end of the day, I will always prioritize balance. My body can only handle so much. It might break my heart, but I would rather let go of things that do not serve me than push myself in the name of an idealized — and unrealistic — work ethic.

I can’t do everything I put my mind to. Not with SMA. And that’s okay. Success is just as much about knowing when to give up, and trusting that something even better is on the horizon.

Brianna

Dealing with rejection

When I finished my first novel, I knew better than to hope for success. The publishing industry is competitive, especially for marginalized authors who write about their lived experiences. Few writers strike gold on their first completed project.

If you'd asked me at the time, I would have said I was prepared for failure. And I was! But that didn't stop the rejection from hurting. I love everything I write, but that book was especially important to me, as it featured the disability representation I'd wanted since childhood. It was the culmination of a decade of striving — and it went nowhere.

“But the truth is it did lead somewhere. That book taught me so much about writing, from the nitty-gritty of revision to the sweeping strokes of character and plot. More than anything, it clarified what I want to create in this life.”

The therapist in me recognizes the shift in mindset as the result of failure. If I hadn't abandoned my book, I wouldn't have questioned my purpose as a writer. I wouldn't have realized that, while writing is difficult, especially in a world that often devalues disabled perspectives, it is also worth it.

I wouldn't have rededicated myself to my craft or written a book that blew my previous one out of the water. Would it have been easier without the failure of rejection? Absolutely. But would it have been as meaningful? Probably not. And that — that's where the magic is.

Brianna

Accepting the things you cannot change

Like every overachieving high schooler, I had dreams of attending a fancy, ivy-covered college, with sprawling libraries and a quad to boot.

It didn't take long for reality to temper my dreams. My college of choice had to be within driving distance of my suburban home. Then there was accessibility to consider, and scholarships, ad infinitum.

My college experience wasn't nearly as sparkly as I'd hoped it would be. While the campus was accessible, the faculty wasn't used to providing accommodations. By the end of day, I was exhausted - physically, mentally, and emotionally.

“By sophomore year, I knew something had to give. As much as I loved the academic setting, not even the ivy-covered buildings of my college were worth the constant stress of self-advocacy. The harder I fought for myself, the more I struggled, juggling classes and dropping balls everywhere.”

So, I left.

It wasn't an easy decision. It felt like I was giving up. Like I was disappointing the high schooler in me, who still longed for lecture halls and study dates. I wanted to be like everyone else in my graduating class, with their picture-perfect Instagram profiles. I wanted to be normal.

But I wasn't. I would never be. So I transferred to an online program and never looked back. Time and time again, I see this conundrum in life with SMA. I want things to be a certain way. I grew up expecting things to be a certain way - a certain education, a certain job, a certain house in a certain city with a certain way of going about my day. I pretend, if only for a while, that I am in control of my life.

Then I remember.

It seems that, whenever I learn this lesson, it doesn't take me long to forget it. Years after I transferred schools, I was faced with a similar dilemma: rack up tens of thousands of dollars in tuition so I could get an M.A. that would land me a job I probably wouldn't be able to handle or accept that some things I cannot change.

I cannot change my university's willingness to accommodate disabled folks.

I cannot change my body's ability to withstand a regular work week.

We can spend all our energy trying to make something work - shouting at the world until either it hears us or we lose our voice. We can try to be normal and beat ourselves up over things we can't control.

Or we can try something new.

I don't know about you, but I'd much rather hold life lightly - letting go of certain outcomes, and embracing whatever comes our way, trusting that we can make the best of any less-than-ideal situation.

Brianna

None of us is free until all of us are free

It can be hard to stay engaged, especially in advocacy work. There's always something vying for our attention, from social media to petitions to our own health and well-being. Burnout is the inevitable result - exhaustion so pervasive that we have no choice but to disengage at times.

This act of disengaging isn't just natural; it's healthy. It allows us to recharge and rejuvenate, so we can show up as our best selves. But sometimes we forget to return. We've grown so accustomed to isolation that we struggle to look beyond our immediate spheres, beyond our own lives.

I see this a lot in the disability community. Life with SMA - or any other rare disease - is difficult. Sometimes, it's all we can do to look after ourselves, let alone someone else. But I push myself to show up.

I get back to the work.

I try to remember that our community is bigger than it seems. For every person in the #DisabledAndCute hashtag, there's someone out there with unmet needs.

Just because I feel seen, doesn't mean that others do.

This is true for the SMA community - people around the world with different life experiences and resources at their disposal. But it's also true for the disability community at large. Invisible illnesses. Ambulatory folks. The list goes on.

Some of us are thriving, and some of us aren't.

“I feel it's my responsibility to advocate for people without a voice.”

Brianna

Showing up, even when it’s hard

I wish I could tell you that following your dream will be easy.

I wish I could tell you that life will reward you for following your dream. For showing up, again and again, even when it's hard.

But I can't.

My dream is to write books. Dozens of them, with swoon-worthy romances and hair-raising plot twists. Every story will feature a disabled girl and have, if not a *happy* ending, a narratively satisfying one. Maybe someday I'll hit the bestseller list, but in all honesty, I'd settle for changing a life. For showing disabled girls like me that they can star in their favorite narratives.

Your dream is probably different. Maybe it's falling in love. Maybe it's seeing the world, or having a child, or living on the beach with a cat, a dog, and lots of friends. Maybe it's all three! But at one point or another, you may feel like your dream is unattainable.

Your partner broke up with you.

Your travel agency won't accommodate wheelchair users.

Your book won't sell.

I wish I could say that following your dream gets easier. That, with time, the sting of rejection will fade to nothing. But I can't. Following your dream is *hard*, especially with a life-altering condition like SMA. Taking risks - like signing up for dating apps or moving halfway across the country - will always be scary.

Here's what I can say.

“Following your dream may be scary. But it’s also worth it.”

Brianna

Practicing psychological flexibility in life with SMA

Let's be honest. Life with SMA can feel restrictive. Confining. Imprisoning. You're trapped on a train, and all you can do is let the caboose carry you—even if the tracks are headed somewhere you don't want to go. Sometimes it's a physical constraint: you want to do something, but your body won't let you. Sometimes it's emotional or psychological: you want to do something, but you don't feel capable. Sometimes it's societal: you want to be X, but the world insists that you play the part of Y.

I usually find it's a combination of the three. My body won't cooperate, *and* I don't feel capable, *and* I'm suffocating under the weight of society's understanding of disability. The train is chugging towards a cliff. The doors are locked, the windows boarded up, and someone appears to have sabotaged the engines.

What do you do?

I've been on that train, feeling out of control, more times than I can count. It never gets easier.

“But I have learned to exercise ‘psychological flexibility,’ which is a fancy way of saying that I act in any given situation according to my values.”

But that's the hoity-toity therapist definition. What does psychological flexibility look like in our everyday lives?

I think of it in terms of imagination. Life with SMA can be restrictive. That's just fact. But sometimes we adhere to that fact a little too hard.

“We get so caught up in our ideas of disability that we forget to ask one important question. ‘What if?’”

Years ago, psychologists performed a series of experiments to better understand animal behavior, they repeatedly delivered electric shocks to dogs. Sadly, the dogs who learned they couldn't escape the shocks eventually gave up on escaping altogether. The way out was right in front of them; all they had to do was jump over a barrier. But they had internalized the belief that there was no escape.

This kind of behavior also manifests in humans. Psychologists call it “learned helplessness.”

What if you stop disparaging your body for what it can't do, and instead focus on what it can? What if you choose to believe we're all just making it up as we go along? (This is true, by the way.) What if you stop trying to change society's understanding of disability and put all your energy towards making what you have work for you?

Brianna

Working toward
solidarity and equality

We need to hear from people who live at the intersection of multiple identities, but all too often, their voices are suppressed, if not erased, from the narrative.

This is the world we live in. And, unfortunately, the SMA community is not exempt from a variety of “isms” – including racism, sexism, classism, homophobia and transphobia.

So what do we do? How do we practice disability justice in our daily lives, moving beyond equality and diversity – kinds of social activism that, while helpful, address the symptoms of oppression, not the root cause – to solidarity and equity?

“The work begins with humility, and a decision to listen.”

Take an audit of the voices you follow. How many identify as a person of color? How about queer or trans? Is your disability community diverse in background, experiences, culture?

The work begins with a conversation. There are people in our community, and the disability community at large, who have been doing this work for ages, people who are consistently undermined or forgotten.

“They are the voices we should be listening to. Show up, even when it's uncomfortable.”

If you experience any kind of privilege, commit to amplifying the voices of the marginalized. It's not charity. It's solidarity. I would even go so far as to consider it a responsibility.

The work starts right here, right now. So let's get to it.

Brianna

No one is you and that is
your power

I love all of my art prints, but the one above my desktop monitor has a special place in my heart: “No one is you and that is your power,” usually attributed to singer/songwriter Dave Grohl.

The other day, I was beating myself up over my latest project. The professionals call it imposter syndrome. I was comparing myself to others in my community, writers with book deals and large Twitter followings, feeling like I had nothing to offer. Writing is difficult. Marketing is even harder. Why was I struggling when other people make it look easy? Maybe I wasn’t cut out to be an author after all. Maybe it would be better if I just gave up.

And then I looked up.

No one is you and that is your power.

“I have been carrying stories for a decade, tending to them like I tend to my succulents and house plants.”

Putting them down on paper is hard. I’m sure that publishing them will be equally arduous. But they are still my stories. Mine. And they are bursting at the seams with everything I love, from fairy tales in space to disability representation.

They are not perfect. But they are mine. And therein lies their power. My stories are a curious amalgamation of dreams and experiences. If I do the stories justice and write them well, they won’t look like anyone else’s. They will be flawed and earnest and quintessentially me.

“There is power in that, even if the world—or our inner self talk—says otherwise.”

Brianna

When your caregiver is your
dad and your best friend

My dad and I can talk without talking. All I have to do is grunt, or quirk a brow, or wrinkle my nose, and my dad is on his merry way. We often joke that we have spent too much time together. If we can read each other’s mind, something’s got to give, if only to preserve our sanity.

“My dad is my best friend.
But he is also my caregiver.”

I live in his house. I eat his food and am responsible for probably 50 percent of our household’s electricity bill. Approximately three times a night, he drags himself out of bed to adjust me in my bed. Sometimes he gives me, his grown daughter, a shower.

Our situation is complex, to say the least. It’s infuriating, but also life-giving, and is a relationship that defies categorization. How do you explain to your therapist that, yes, your dad drives you out of your mind, but he is also one of the few things keeping you alive?

Boundaries are a buzzword these days – interpersonal rules, limits or guidelines that keep relationships healthy. Without boundaries, you’re a dog with no leash, digging under fences and crossing roads at peak traffic times. Without boundaries, you will either burn out or get hurt.

Boundaries are crucial in caregiving relationships, especially when your caregiver plays a dual role. Imagine if your best friend from high school was also your professional caregiver. What would you do if they didn’t show up for work one morning? As their friend, you might be tempted to let it slide. But as their “employer,” you expect them to be accountable, dependable, like any other employee. In this scenario, boundaries would delineate what is and is not acceptable. You might say, “I value your friendship, but I expect you to take responsibility for your actions and treat this like any other paying job.”

Now imagine that your best friend and caregiver is also your dad. How do you navigate that conversation?

It’s not easy. I won’t pretend that I’m an expert. But it helps to acknowledge that boundaries are hard, no matter the situation. It will always feel a little bit uncomfortable, like you’re overstepping in some necessary way.

I always seem to have boundary conversations around our dining table. My feet are in my mom’s lap, my dad is sitting to my left, and I’m staring at a half-empty plate of chicken and mashed potatoes. If history is anything to go by, I’m crying and feeling stuck between adolescence and adulthood because I need my parents more than most people my age.

I leave these conversations feeling wretched. My parents are my best friends. We’re closer than we probably should be. The last thing I want to do is complicate our lives by drawing a line in the sand and saying, “I’m still your daughter, but I’m also an adult. We need to work together, so I can start acting like one.”

“It takes vulnerability to ask for what you need and courage to believe in your ability to compromise.”

But I can say from experience that parents need boundaries, too. Starting the conversation is hard but worth it. Ultimately, you all benefit.

Brianna

Finding my identity in stories

I can’t remember when I realized that, more than anything, I wanted to be a writer. Like most things, it dawned slowly. As a child, I loved stories. My dad and I spent hours in an oversized, weathered rocker, with dark blue fabric that felt somewhat like a cross between velvet and corduroy. We lost entire days to reading about different people and different worlds.

I now know that stories were a refuge to my eight-year-old self. She found something in stories that she couldn’t find in the real world. First, it was the sprawling hills of a childhood favorite. Then it was the adventure and thrill of finding a long-lost repository of gold and knowledge. Then it was the wonder of space.

The psychoanalyst in me realizes that, as a young, disabled girl, part of me was yearning for another life. A different one, with a body that worked right, a body that wasn’t constantly trying to sabotage itself. But the counselor in me knows that, really, it wasn’t that I wanted to escape my reality.

It was that I wanted to see myself in theirs.

I was a writer in a world that denied me my own existence. There were no disabled girls in my Saturday morning cartoons. There were no disabled girls on the big screen, fighting the bad guys for the greater good. There were no disabled girls in the background of adventure movies and cult classics. There were no disabled girls in princess movies, even when media executives went out of their way to show that, look, anyone can be a princess! Yes, even you!

“It’s hard to find your passion in a world that tries to erase you. It’s hard to find your passion when, most of the time, disabled people are relegated to hospitals and living rooms.”

We don’t go to prom. The Force isn’t with us. And we certainly don’t steal significant historical documents.

But that’s a narrative. And a false one at that. Disabled girls are everywhere. We go to concerts and poetry readings and midnight premieres. We climb mountains and write papers and sometimes, if we’re really, really lucky, we find someone who will take our wild dreams in stride—even the ones that have to do with significant historical documents. We fall in love. We have families. We stare at the sky and feel, for one blinding moment, that we, too, are made of stardust. We rage and cry and, at the end of the day, we pick ourselves up and do it all over again.

“The world tries to convince us that, no matter how loud we scream, our stories are swallowed by the void. But that’s a narrative. And a false one at that.”

Someone is listening. Someone needs your poem, or your app, or even just your laugh. The real challenge is convincing yourself that, just like everyone else, you deserve the world, and whatever lies beyond.

From one disabled girl to another? You do.

Brianna

Hunger, desire, and
learning to be alive

It took me years to realize that I struggled with mental health.

Looking back, I feel like it should’ve been obvious. There’s anxiety, and then there’s gasping for breath in a waiting room because your doctor mentioned surgery and you’re having trauma flashbacks of anesthesia and bloodwork and life-threatening operations. There’s depression, and then there’s sleeping till 4 p.m., playing video games till 7 a.m., losing entire years to the black pit in your brain.

“There are bad days, and then there’s living with a disability.”

Things changed for the better when I realized, quite suddenly, that I wasn’t just nervous, or sad, going through a tough time. I was anxious. I was depressed. I spent the first 15 years of my life waiting to die. When that didn’t happen, I didn’t know how to live. I didn’t know how to be a disabled person in a world that values the perfect body, with healthy lungs and straight teeth and a correctly shaped skull.

No wonder I was confused. No wonder I felt alone.

In my experience, things start to change when you acknowledge the truth of your situation. Sometimes, most times, the truth is ugly. Many of us are dependent, and lonely, and frustrated with our lives. We want more for ourselves, but we have been conditioned by society to ask for things we know we can get, like pity or discrimination. We don’t dare ask for the big, scary, marvelous things, like dreams or miracles.

Things start to change when you look the truth of yourself in the eye. You are an animal with hunger and desire. You want things—love, and recognition, and chocolate, maybe, if you’re anything like me. You want the world, and your want makes you human.

Humanity is hard to acknowledge. Especially when you grow up in a world that tells you through subliminal messaging and targeted ads that disabled bodies aren’t pretty, disabled people aren’t worthy, disabled _____ aren’t _____. (Fill in the blank. You might be surprised by what comes to mind.) Standing in front of this wide, wondrous world and asking for more, demanding it.

“I don’t blame you for shying away. But I am here to tell you that everything you’ve ever wanted is yours to have. You just need the courage to ask for it.”

People will turn you down. It’s inevitable. And, inevitably, their rejection will sting. But that is part of being human. That is part of being alive.

I could talk for hours about mental health. Meditation (try it), or acceptance and commitment therapy (my counseling framework of choice), or support groups (you never know until you show up). But I know from experience that, once I acknowledged all of the things I’d spent years pretending I didn’t want, life got better. Not because a magical switch was flipped, but because I allowed myself to be, for the first time in a long while, human, with hunger and desire.

I let myself be present.

Brianna

Finding and loving
my voice

I was a self-conscious middle schooler when my English teacher asked me to read a short story I’d written at a school event.

I realized halfway through the reading that my audience was comprised of blank faces. No one understood what I had said. The story — something about siblings and ghosts and a tragic car accident — was lost in the glare of the spotlight.

It took me years to get over that incident. I found that, when people talked to me, I no longer had the words, so I stopped talking. I tripped and fell into silence.

But then I went to therapy and worked with a counselor to address my depression. And, perhaps the scariest of all, I told my story. Again, and again, until the memory grew blunt edges.

“With time, I grew to love my voice. There are days of silence and uncertainty and wishing my voice was different — but then I wake up and start again.”

If you’re struggling to find and accept your voice, here’s what I suggest:

  1. Explain your situation
    Nothing changed until I found people who were willing to listen.You might have to repeat yourself a few times, but don’t give up. People might surprise you.
  2. Troubleshoot
    I recently invested in a portable speaker with a microphone that attaches to my wheelchair. It helps to know I don’t have to shout.
  3. Push through the discomfort
    Will you be anxious? Without a doubt!Will people understand you? Maybe! Will it be awkward and uncomfortable? Probably!
“Will you survive anyway? Yes.”