LAUGHING AT MY NIGHTMARE

Hello, I'm Shane Burcaw. I'm 26 years old, and I have a disease called Spinal Muscular Atrophy. I have been in a wheelchair since I was two. I love to laugh, and my life is pretty funny. Allow me to share...

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What Made Me Smile This Week?

I married my best friend. On Friday, September 4th, Hannah and I tied the knot and became husband and wife! It was a private backyard ceremony that we conducted over Zoom with our officiant (the one and only: Sarah Yunusov, cofounder of LAMN!). Certainly not the wedding we originally imagined, but it was a beautiful moment filled with the most important thing: our love for each other.

Visit the following link to watch the little wedding video we made about the special day: https://youtu.be/x0ix30SJlVk

I’m beyond happy and smiling a whole lot.

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This is probably inappropriate.

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URGENT. PLEASE READ.

My emotions surrounding the following announcement are complicated. I’m nervous for the ever-increasing severity of the current pandemic, but also grateful to be in a position to help. I’m excited, because we’ve developed a program that I believe will help a lot of people who are struggling right now, and I’m optimistically hopeful that many of you will join me to amplify our impact.

Here’s what’s up: My charity, Laughing At My Nightmare, Inc., is beyond pleased to unveil a brand new program that we have created to help the disability community during this time of uncertainty, isolation, and fear. Before I explain this simple program, please know that for the first time in our company history, we are opening up applications to individuals with ANY disability/diagnosis/chronic illness. Supporting the muscular dystrophy community is still at the heart of our services, but our board of directors felt that this specific program should be open to people with ALL disabilities.

The program is called COVID-19 Resource Relief, and it’s a way for people living with a disability to apply for a $100 Visa Gift Card to help with purchasing essential items during these difficult times. The simple application is now available at the link below, and if you’re approved, the gift card will be mailed directly to your home.

To kick off this program, Hannah and I have donated $2,000 to fund the first 20 applications. We have heard from so many of you how the quarantines and social distancing requirements have drastically affected your financial situation, and we want to use our platform to help. Our hope is that all of you who are able will consider donating $1 to $10 to help us fund 30, 40, 50+ more urgent applications. The link to donate is also below. Please consider joining us in supporting this vital program.

For many of us who live with a disability, quarantine is not a choice, but a necessity for survival. I highly encourage anyone with a disability who is in need of essential items to apply today.

Again, if you are reading this and you’re able to donate a dollar or two, your gift will help us fund MANY more applications.

Apply or donate here: https://www.laughingatmynightmare.com/covid

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Hannah and I recently had the opportunity to do an adorable little photoshoot down here in Florida! We just posted a really fun video about that experience, and about the day my wheelchair broke down last week: https://youtu.be/M5W0Yf6mUvU

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What Made Me Smile This Week:

Sunday 10/27: A solid day of writing made me smile.

Monday 10/28: We attempted to bake a pumpkin pie using only expired ingredients (because that’s all we had in the pantry) and it actually turned out to be mostly edible (we think)! It made me smile.

Tuesday 10/29: If you’ve seen any of our YouTube videos from last winter, you know that I am a beanie-connoisseur. Unfortunately, when we moved out of our apartment back in June, our collection of my most favorite hats was lost. It has been a crushing, hopeless feeling as winter approaches once again and all my cherished hats remain missing. However, tonight, determined to solve the mystery, Hannah’s mom tore the basement apart and located the box of lost beanies! Everything is right with the world once again and I am smiling.

Wednesday 10/30: Andrew and Laura sent me their wedding photos. They look absolutely stunning, but most importantly, so do I. Looking back on all the happiness from their wedding made me smile. Shout out to Addison George Photography for this great shot!

Thursday 10/31: I was joking with Hannah’s niece about grabbing extra Reese’s Peanut Butter Cups during trick-or-treat tonight. Later in the evening, she stopped by again to deliver a bag of all the Reese’s she had collected for me. It made my night and made me smile.

Friday 11/01: We got tickets to the Minnesota Zoo’s Jack-O-Lantern Spectacular, a mind-blowing art installation with incredible carved pumpkin art. What made me smile most about our date night, though, was that I managed to stay WARM while walking around outside at 8pm in the snow. Hannah insisted I wear 2 pairs of socks, 2 pairs of pants, 3 shirts, and my coat, and it paid off!

Saturday 11/02: Hannah ate leftover scallops for breakfast today, which is so repulsive that it made me smile.

What made you smile this week?

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THE SHOW MUST GO ON! Don’t worry, I don’t leave the tissues in for the entire video. Tonight, Hannah and I are talking about the hardest part of our relationship. It’s a fun one. Let us know what you think!

Watch it here: https://youtu.be/Xao5XYcnysY

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Last week, Hannah and I arrived to an empty auditorium. It was the first time the two of us had ever performed a full-fledged 60-minute lecture (comedy hour?) together. We were extremely nervous that nobody would show up to watch us speak.

Our goal on YouTube is authenticity, so we filmed all of these pre-speech jitters. I’m beyond thankful to say over 75 people ended up attending our talk. Hannah did not, in fact, puke on stage... but close!

We hope you enjoy tonight’s episode. In addition to documenting our first speech, we find a man-eating spider and cut up Hannah’s new skirt. You can watch it here: https://youtu.be/diTtpFgLgrA

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One of the biggest perks of my disability is that I can carry m’lady in a wagon behind me! Is that a perk or just something strange that we enjoy? Either way, we just posted a new video of the two of us exploring Wroclaw, Poland. In this episode, you can see us using this wagon perk, plus watch Hannah push me through a muddy abyss!

Watch the episode here: https://youtu.be/NoemajIJGuA

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What Made Me Smile This Week:

Sunday 8/11: My brother got married last night!!!! I’m still smiling this morning as I think about all the special memories that were created last night. Love you, Andrew and Laura!

Monday 8/12: East coast pizza made me smile after many many months with only (significantly inferior) midwest pizza. Sorry, midwest. You’ve got the top spot for cheese curds and wild rice soup, but your pizza leaves much to be desired.

Tuesday 8/13: I had my book reading event in New York City tonight, and so many people came out that the book store had to stay open for 40 minutes past their closing time. Hannah and I were filled with love and appreciation by the hundreds of you that attended. Thank you for making us smile!

Wednesday 8/14: Successfully navigating out of New York City without getting severely lost made me smile. I maintain that my navigating skills are some of the finest in existence.

Thursday 8/15: The air conditioner at our hotel in Indiana dumped about 40 gallons of water on the floor while we slept last night. Waking up to a swampy carpet was disgusting (and smelly), but it was so ridiculous that it made me smile.

Friday 8/16: A good beer and a good book made me smile tonight. If you’re anywhere remotely close to Northfield, Minnesota, I highly recommend the cream ale from Imminent Brewery. Delicious. Also, if you’re looking for a good book, I highly recommend City of Girls by Elizabeth Gilbert. Phenomenal voice.

Saturday 8/17: Over 200 of you beautiful people have helped my nonprofit raise over $10,000 for our summer fundraising project. With these funds, we will be able to provide even more equipment to people with muscular dystrophy. If you’d like to donate, we would be SO grateful. You can donate right here: https://www.gofundme.com/f/LAMN-2019

What made you smile this week?

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A few weeks ago, Hannah had her insides tested to find out if she is a carrier of my disease, spinal muscular atrophy. Although it was pretty unlikely that she would be a carrier, this was big moment for us. If Hannah is a carrier, there’s a 50% chance that any future children we have will be born with SMA. If she’s not a carrier, there is virtually no chance that our kids will inherit the disease. In tonight’s episode of Squirmy and Grubs, we reveal the results of Hannah’s genetic testing! Check it out!

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What Made Me Smile This Week:

Sunday 7/28: My brother and his three groomsmen flew out to Minneapolis this weekend to celebrate his bachelor party! It made me smile that Andrew’s moment of peak excitement came from him discovering the electric scooters that are available to rent throughout the city. He’s getting married in two weeks and I couldn’t be happier for him and Laura.

Monday 7/29: We did two more interviews for our upcoming book about interabled relationships today. Relating to (and laughing with) the couples we are meeting makes me smile.

Tuesday 7/30: In no way, shape, or form should the following smile be interpreted as a complaint about summer and all of its beautiful warmth, but today I found myself daydreaming about the cozy feeling of drinking wine inside a warm house on a snowy night. I’m happy if I never experience another cold day in my life, but this thought made me smile.

Wednesday 7/31: I had another Spinraza injection today. My anxiety about the procedure has been escalating throughout the past week, but I’m smiling bigger than ever right now because the injection is done and it went exceedingly well! I can almost feel the synthetic DNA coursing through my body!

Thursday 8/01: Dinner and interesting conversation with our new friend, Jim, made me smile today.

Friday 8/02: I watched the world’s most adorable chipmunk stretch onto its tippy toes to reach a wilting flower that it wanted to nibble. Easily the cutest moment of my year. It made me smile.

Saturday 8/03: As you may have seen, my charity is raising funds to provide $60,000 in adaptive and medical equipment to people living with muscular dystrophy this year. Over 130 people have already donated in the first two day, which makes me smile so much. Thank you for checking out our work: https://www.gofundme.com/f/LAMN-2019

What made you smile this week?

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Please reblog if you enjoy giving or being given sponge baths. 

Oh, that’s only six of you? Okay, then maybe reblog to help us change the narrative around dating with a disability?

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We will be in New York City on August 13 from 6-8pm at Books of Wonder on 18th Street! Shane will be reading from his latest book, Strangers Assume My Girlfriend Is My Nurse. There will also be an open Q&A for everyone to ask us whatever you want, and Shane will be signing books!

If you think you might attend, please RSVP on the Facebook event we created: https://www.facebook.com/events/2905629632840938/

Can’t wait to meet everyone!

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What Made Me Smile This Week:

Sunday 7/14: This probably shouldn’t be a smile, but I had an interaction this morning that was so ridiculously offensive it made me laugh. While eating breakfast at a small diner near Chicago, the host absolutely REFUSED to address me directly. Everything he asked us was directed to Hannah. “Will this table work for him?” “Will he be staying in his wheelchair?” “What would he like to eat?” Every. Single. Time. Hannah would turn to me and wait for me to answer him. And yet, he continued to address her instead of me. My favorite was his final question: “Is this big guy happy today?” His baffling ignorance made me smile, and cringe for him.

Monday 7/15: Today was my dad’s birthday, and he surprised me in the coolest way by donating his birthday to my nonprofit organization, Laughing At My Nightmare, Inc. His birthday fundraiser brought in over $2,000, which is incredible! Talking to my dad on the phone, and hearing his excitement about supporting our work made me smile. Happy birthday, Dad, and thank you!

Tuesday 7/16: A payment machine in a parking lot ate our $20 bill without giving us the $17 change that we deserved. This enraged me, but I also smiled because Hannah immediately dismissed the entire town as a “garbage city.”

Wednesday 7/17: A small case of probable food poisoning made me smile today. Now, of course, this ordeal was extremely not fun for many obvious reasons, especially because it occurred while Hannah and I were in Milwaukee for business. However, being stuck to the toilet for 8+ hours did give us a great opportunity to start the next season of Stranger Things!

Thursday 7/18: We stopped at an Italian bakery this evening to buy some authentic Italian cookies that Hannah has been craving ever since she moved away from Connecticut five years ago. It was located in an old brick building, in a charmingly old neighborhood in Milwaukee. Unsurprisingly, the bakery had a few steps at its entrance. Normally, this would bother me, but I was too excited for cookies to really care today. I waited outside while Hannah went in to order our treats. While I waited on the sidewalk, another patron of the bakery came outside and said to me, “Hey, I noticed there are steps here. Can I help you get anything from inside?” Human kindness never fails to make me smile.

Friday 7/19: I wish I was making this up, but our hotel room in Michigan just literally opened up during a massive storm, releasing a waterfall of rain into our room. It was so absurd that I can’t do anything but smile. The best part is that we caught it on camera, so keep an eye out for it in a few days.

Saturday 7/20: Seeing the beautiful Minneapolis skyline come into view after a week on the road made me smile. This was an amazing trip, and I’m so grateful to have met so many awesome people, but it’s also nice to be home.

BONUS SMILE: The photo for this post is from 7/13 in downtown Chicago. We were visiting our friend Alex in her sick new apartment, enjoying her rooftop balcony that overlooked the whole city. It made us smile.

What made you smile this week?

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Normally, it’s pretty easy for me to let dumb comments from ignorant people roll off my back. But tonight, we posted a new video, and this person’s comment rubbed me the wrong way. It’s probably just the accumulation of so much ignorance being shoved in my face each day in our comment section, but I’m so tired of the idea that people with disabilities cannot be valuable partners.

If this angers you, you’re probably ~not~ one of the people who need to open their minds, but you can help me by supporting our channel so we can reach those who still don’t get it. We just posted a new video, and it would mean a lot to me if you’d check it out (and share this post): https://youtu.be/g6WNpJdD9mE

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What Made Me Smile This Week:

Sunday 6/30: Hannah and I have been engaged for about two weeks now, and I must say, I kind of love introducing her as my fiancée. The word seems to carry a level of authenticity that helps strangers realize there’s nothing strange about our relationship. Before, when I’d say, “This is my girlfriend, Hannah,” people would often place their hands over their hearts and give us a soft, little “aww,” as if they were witnessing a toddler try on adult-sized shoes. Now, when I introduce her as my fiancée, their reactions are much less belittling—an outstretched hand and a genuine “Nice to meet you.” It makes me smile.

Monday 7/01: Today was the final day of the CureSMA Conference in Anaheim. Hannah and I feel so honored that we were asked to speak this year, but the real fun has been meeting and learning from so many other cool people living with SMA. It made me smile, a lot.

Tuesday 7/02: Eating a hashbrown patty dipped in ranch dressing for breakfast made me smile.

Wednesday 7/03: Sarah sent me a cool update today that made me smile. In June, people ”donating” their birthday to Laughing At My Nightmare, Inc. through the Facebook donation program helped us raise over $7,000 for our mission. The kindness of others makes me smile.

Thursday 7/04: Sitting on the sun porch while it treacherously downpoured outside made me smile.

Friday 7/05: Hannah’s niece (who is 3) introduced me to her cousins (who I’ve met countless times) as follows: “This is ~my~ friend Shane.” It made me smile.

Saturday 7/06: I spent over six hours working with Hannah on our book today. Selecting our interviewees has proven to be quite difficult, as we received submissions from over 600 interabled couples. But while choosing the couples is tough, it makes us smile that this book will offer a truly diverse representation of interabled love stories!

What made you smile this week?