Topic: Adulting

Shane & Hannah

Home Sweet Home

During our speaking engagements at elementary schools across the country, a common question we get asked by inquisitive, young minds is: “What do you do if your house has steps?”

“We love this question, because it shows that the students are applying our message about accessibility to a centerpiece of their own lives, the house they live in.”

We don’t need to belabor an obvious fact – accessible housing is rare and difficult to find – but as Hannah and I have just purchased our first home together, we wanted to discuss a few of our observations (and tips!) from throughout this experience.

A frustrating part for me was that I couldn’t accompany Hannah to many of the open houses, due to inaccessibility. We entered the home-buying process with the assumption that at least some adaptations would need to be made to make our future home accessible, so we didn’t limit ourselves by only seeing perfectly accessible houses. The unfortunate effect of this decision was that we looked at many places with 3+ steps at every entrance.

We counteracted this issue in several ways. Sometimes, Hannah would attend the showing by herself (or with her mom!). Hannah made sure to take lots of photos and videos so she could share them with me afterwards. Another option was to have our real estate agent do a “virtual” tour for us. Using a video call on his phone, our agent walked through every room while we watched from the comfort of our apartment. With his video tour and his tips about the pros and cons of every room, it was just like doing an open house in person.

If possible, I’d also bring along my portable ramp to get inside as many of the prospective homes as I could. I enjoyed this method the best, but all three options gave us a great sense of our choices.

With a disease like SMA, requirements for a home are obviously going to vary from person to person, but here are some of the things we asked about and paid attention to when picking our first home:

  • How much work needs to be done to make the front entrance accessible?
  • If there’s a basement, is it a walkout or would we need to install an elevator/lift inside the home?
  • We generally looked only at one-level homes. Multiple floors just mean a lot more work needs to be done to make it accessible.
  • Were the rooms and doorways spacious enough to maneuver my wheelchair easily? In our first apartment, the hallway to our bedroom was so narrow that I scraped the doorway pretty much every time I entered it, which created a lovely, shrill screeching sound. Sorry neighbors!
  • Since Hannah lifts me onto the toilet and into the shower right now, we paid close attention to the layout of the bathroom.
  • An attached garage was pretty much a necessity for us, living in Minnesota where it snows 11 months of the years (at least it feels like). In the home that we eventually purchased, I can drive from inside our house into the garage and right into our van without ever going outside. In no small way, this feature is helping to keep me healthy, as I no longer need to spend time in the frigid cold/ice/snow getting into my van.
  • Does it have a fireplace? This one has nothing to do with accessibility. I just really wanted a fireplace.
“Buying a home is a stressful process for everyone. We did our best to have fun with it, and to remind ourselves that – stressful as it may have been – it was also exciting!”

Alex

Catching SMA curveballs

In life, bad days are inevitable.

When you live with SMA, just getting through the day can feel like an impossible task. Sometimes, just eating and watching a movie are my only accomplishments of the day, and that’s okay.

We have all this pressure on us to accomplish and “achieve” things in an unrealistic timeframe that doesn’t acknowledge everyone’s unique lives. Everyone should live their life at a pace that’s suitable to their specific needs, goals and aspirations. Even if we do that and respect our boundaries and disability fatigue — SMA can throw a lot of other unexpected curveballs our way, and I’m no stranger to the curveballs of SMA.

There’s unexpected sickness that can stop your life right in the middle of the train tracks. There’s the back and forth to try to get a new wheelchair or medical equipment approved. There are social aspects, like combating ableism all while trying to balance having a healthy social life. There’s internalized ableism and mental health you need to manage. Sometimes, it can all seem very daunting.

Having lived for 26 years and counting, I learned how to catch those curveballs.

“Catching SMA curveballs is like rock climbing.”

I know this metaphor example uses rock climbing and I can’t walk, which makes for the perfect amount of irony, so stick with me.

When you rock climb, it can be really scary at first and the unknown is waiting for you at the top. You might slip and fall on your journey to the top — you might even scrape your knee. But you get up and try again, even if you fall down multiple times. You must keep going. Finally, the moment is here, the part where you reach the top. You remember each step and how much anguish you were in as you took those last few steps to get to the top.

You stand (or sit) at the top… your long hard journey has brought you here and the view is great. You feel the sun shine on your face and remember that the journey of life isn’t always easy, but it’s always worth it in the end.

“That’s how I get through hard days living with SMA — being able to look back on my journey and appreciate all the moments in between because nothing good in life ever comes easy.”

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.”