Inspiring stories from those living with SMA, ranging from topics of accessibility, dating, individuality, work and adulting.

Kevan

Creativity and disability
(part 3)

Ever since I could form words, I have been telling stories. It is my great passion in life. After college, a friend gave me a novel by a German cartoonist who pretty much broke all the rules of conventional storytelling.

“I remember sitting at my desk, reading this weird book, and I felt the author say to me, ‘You should share your stories with the world, too.’”

That’s when I set out to self-publish my first book, and more followed over the next few years. None of these books had much to do with disability, and it was a constant uphill battle against people’s expectations.

Finally, I wrote a book about my experience with disability and it was picked up by a publisher. I saw this as two opportunities. First, it was certainly a story worth telling and I was happy to do it; second, I was hopeful that it might grow my audience and that audience would then say, “We see your value as a writer. What other stories do you have?” However, the battle continues.

Last summer, I had lunch with a fellow-writer, and we were sharing with one another our latest projects. I told him about the new book I was working on, and mentioned that one of the minor characters was a man with a disability. My friend’s initial response was that I should scrap the rest of the book and refocus my energies on telling that character’s story, with my unique insight on the subject.

I tell you all of this to say that, if you are an artist of any sort with a disability and you don’t want your art to be all about said disability, I understand your desire and I understand your frustration with a world that suggests otherwise. Whether you are a writer, musician, actor, poet, painter, sculptor, basket weaver, whatever, you are more than the disease in your body and your craft has the capacity to express more than the disease in your body, even if a lot of the world is too short-sighted to grasp that.

Every artist deals with this issue of consumers’ expectations.

“Just as you struggle to be seen beyond your disability in your day-to-day, so you will always struggle in the same way with your art.”

But there are people who truly see you—those couple of friends who really get you. And you will find the same to be true with your art. Through the cacophony of people asking about your wheelchair, there will be a voice or two that celebrate your craft simply for what it is. Those couple of voices are more refreshing than you can imagine. If you pay attention to them, you will be revived, inspired, and carried along just fine. So keep an ear out.

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.

Kevan

Joy in the journey

I recently had the pleasure of meeting John Morris, a fellow world traveler and founder of wheelchairtravel.org. John and I are not dissimilar in our needs, namely the use of wheelchairs, and though we each approach travel differently in some ways, the core of our experiences is the same.

One topic that came up in our conversation was that of perspectives. We could swap stories all day about the difficulties of travel, especially in light of the recent health pandemic. But that’s not what we reminisce about.

“Our memories rest in the wonder of our adventures.”

I asked John how he maintains that positive outlook on travel. This is where our difference of approach comes into play, because I travel with a group of friends, while John goes solo.

In the pragmatic sense, a lot of my own positive outlook is bolstered by those I surround myself with. I can look on the bright side, but man, it really helps to have folks around me doing the same. John, however, is traveling alone, so his answer? “I try to focus on keeping a cool head with respect to the inconveniences of travel. Air travel, for example, can be quite uncomfortable and frustrating... but by leaving that frustration at the airport, I am able to better focus on the joy in the destination and the purpose of travel.”

“I couldn't help but agree; keeping a cool head is paramount.”

We can’t control those around us, and we aren’t always in control of our circumstances, but what we can control is our attitude toward it. I much prefer to focus on the joys of a journey than the (albeit inevitable) difficulties – not just looking back on the memory of it, but as I am experiencing it in the moment. As I mentioned before, part of how I do that is by the company I keep – that they be of a similar mind. It helps me regulate my “head coolness.” So, I had to ask, “As an independent traveler, what is a practical way you regulate, stay cool-headed and enjoy the journey? You mentioned the example of leaving your frustrations at the airport – how do you do that?”

To this, John made a great point. “It is through an understanding that there is a time and place to deal with conflict. If there is an issue with air travel that cannot be immediately resolved, it is best to address that through the appropriate channels at a convenient time. In nearly all cases, the appropriate time would not be to interfere with the very reason I have traveled. Save that work for after the journey, if possible.”

This is applicable, not only to travel, but to everyday life. Difficulties arise left and right, but they don’t have to ruin everything.

“Adopt a positive outlook by leaving those frustrations ‘at the airport,’ to deal with later and enjoy the rest of what’s in front of you.”

I believe, by doing this, you’ll discover a world of wonder and joy.

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.”

Kevan

Finding my passion through travel

A few years ago, some friends and I set out on a trip around parts of Europe. Our destinations wouldn’t be accessible, not in the traditional sense. We wanted to climb the stairs of old cathedrals, dance on cobblestone streets, hike through countrysides and up mountains to ancient monasteries. It was all deemed impossible for wheelchairs, so we left mine behind and took a custom backpack, instead, for these guys to carry me. Our drive, at the time, was just to be together and have fun as a group of goofy friends, but the way we had to do it led to a greater need being revealed. As we returned home from the trip, opportunities presented themselves to interact with other families with disabilities.

“Through this experience, I learned the beauty of enriching the lives of others.”

The joy of inspiring and encouraging these families! That joy far outweighs any thrill of my own exploration, and it leaves a lasting impact upon, not just my heart, but the whole world around me. In one of my favorite movies, the main character talks about how he has realized courage is what interests him most. This is exactly what I’ve learned about myself in this wildly unexpected season of life.

My true adventure is serving you and you and you! My interest is in helping others to find courage and pursue it, to ultimately make the world a better place. It’s a matter of seeing a need and filling it as best I can with the resources I have around me.

Take a look around in your own life. Where is there a need, what is the need and how can you fulfill it? It may or may not have to do with disability – not in the traditional sense anyway.

“The world is full of needs, and we can all pitch in to fulfill them.”

If you have SMA or are close to someone with SMA, chances are your life is full of unique perspectives and approaches to the world. Can these help to fulfill needs and enrich the lives of others? If so, let’s go! Get those ideas and creations out there. Don’t be afraid, don’t grip them too tightly and don’t assume it’s the fix-all. Ask others for help and advice to make the ideas happen, be willing to collaborate, and then get the word out that you see the need and you have an option that may be helpful.

Amanda & Jeremy

I am stronger because of my son

I find myself around mile 30 of a 50-mile, seven-night trek on the Jon Muir trail in the high Sierra Nevada mountains.

How did I get here?

I’m the model of a modern, domesticated husband and father. Admittedly, groomed for the finer and simpler things of life. Nevertheless, here I am.

Today, I’m mentally broken, dodging mosquitoes and longing for home. “Only” 20 more miles. “Only” two more nights. I miss my family terribly. I want my bed and a shower. An egg sandwich with coffee sounds delightful.

“But the only way home is the same way I got here—one step at a time.”

As I surrender my thoughts to the reality that there is no quick or easy way home, I can’t help but think about my son’s journey with spinal muscular atrophy (SMA). Every day, I watch my son tackle simple living tasks as if he were scaling a mountain. He has no easy way in this life; yet, he tackles every challenge without hesitation, taking one step at a time.

I’ve wanted to cry since the start of my hiking trip from mental fatigue and physical exhaustion, but tonight the tears finally roll down my face.

“Each tear confesses that what I have previously defined to be difficult as a 21st century man does not compare to what I am experiencing as I scale this earth and it certainly doesn’t compare to the challenges my son faces.”

As I reflect on my son’s steadfast and hard-earned strength, I am able to conjure the courage and perseverance to overcome my newfound brokenness. I can wipe away my tears and push on, knowing I am stronger because of my son.

Khrystal

Five tips for practicing
self-care

Self-care is essential, especially when you're a caregiver for a medically fragile child. Just as you stop to fill your vehicle's tank on long trips, you must also replenish your energy through self-care.

“If you don't, you'll end up empty, just as your car does.”

Here are five tips I've learned to help me practice self-care in the more than eight years I've cared for our medically fragile SMA Type 1 son, Hunter.

  1. When you practice self-care, you're helping to ensure you can care for others. If you've ever flown on a plane, you know you must put on your oxygen mask before you put on your child's. Why? Because if your child needs you to put their mask on in the first place, they might require you to put it on again. Should you fail to put yours on first, you run the risk of losing consciousness, and couldn't help if your child needed your assistance again. The same is true for self-care.
“It's not selfish to take care of yourself.”
  1. Choose goals and activities that you enjoy, and are important to you for your self-care. Describe your goals with specificity, so they're clearly defined. For example, "I'm going to run half a mile every day for two weeks." The more specific a goal is, the more you know what you need to do to meet it and can feel accomplished when you do. Start with one to three goals and add new ones as you meet them.
  2. Take time to make time for your goals. Set your goals and try to schedule them for the same time each day. It also helps to plan time for your goals as early as possible in the day. This way, you are more likely to complete them, and before long, you will establish a routine.
  3. Make sure your goals are attainable. My long-term goal might be to run a 10K, but I'm not going to start with that as a scheduled goal. Instead, I'm going to set step-goals. After meeting my goal of running a half-mile each day for two weeks, I would increase my goal to running three-quarters of a mile each day and would keep making incremental adjustments. By doing this, I could celebrate several achievements along the way.
  4. Meet weekly with an accountability partner. Choose someone who can make time to discuss your goals with you each week; it helps to stick to the same day and time, if possible. Try to choose an accountability partner with different goals, so that you can celebrate one another's wins without losing spirit if one of you falls short of reaching a goal. In the first week, discuss your goals and how you will meet them. In subsequent weeks, discuss how you did with your goals, what you could do differently the next week to reach a goal that eluded you, and any new goals.

I hope you find these tips helpful in practicing caregiver self-care and wish you success in meeting your goals.