What you see here is pure happiness. Yesterday, we met up with our friend Reed, who also has SMA Type 2, like me. Reed was in the city for some appointments, but first he requested that Hannah and I join him at his favorite WHEELCHAIR ACCESSIBLE playground! Of course, we obliged, and the couple hours we spent with him were filled with laughter. Reed is much more daring than me, but he did convince me to ride the swings with him. As you can see, I’m glad I did. Tonight’s episode is really special to me, because I know it’s a memory I’ll always look back on with joy. Please check out the video we just posted on Squirmy and Grubs to see our adventure with Reed at the accessible playground, plus some other silly antics from recent days! Enjoy! (And if you know of anyone who might benefit, please tag them and let them know that Madison’s Place Playground in Woodbury, MN is AMAZING. )
Hi friends : ) I know this probably goes without saying, as I’m sure you’ve had your calendars marked for months, but my birthday is on May 28th. This year, instead of gifts, I’m asking my friends and family (and followers! ) to donate a few bucks to my nonprofit organization, Laughing At My Nightmare, Inc. Our mission is to provide medical and adaptive equipment to people living with muscular dystrophy diseases. We also provide free disability awareness programs to schools across the country. Your donations will help us continue to change lives in amazing ways! If you click the link in my bio, and then click BIRTHDAY FUNDRAISER, it’s super easy to help us out : ) thank you in advance!!! Also, if anyone has a puppy they’d be willing to part ways with, that will also suffice as my gift.
Just a heads up that our current application period for equipment grants will be closing on May 31st. If you, or someone you know, live(s ) with any form of muscular dystrophy, I’d encourage you to apply for any adaptive/medical/other items you might need! We aim to provide equipment that will help you be healthier, more comfortable, or more productive. The application is available on laughingatmynightmare.com, or through the link in my bio under “NONPROFIT.” Please navigate to the No More Nightmares Page under Programs. If there’s anyone you know who might be interested in applying, feel free to tag them in the comments below!
What Made Me Smile This Week: Sunday 5/12: Hannah’s dad and her brother, Steve, spent a few hours today digging and constructing a new paved pathway for me where we park our van. Before this improvement, my wheels often got stuck in the mud that bordered the narrow path. Now, thanks to their beautiful work, I have plenty of room to maneuver atop the concrete. Their kindness made me smile. Monday 5/13: We switched to a new internet provider because they were offering faster speeds at a cheaper price. Uploading a 2GB vlog to YouTube previously took about 20 minutes, and I was mostly happy with that speed. Tonight, I tested (unleashed? ) our new speeds, and a 2.4GB vlog uploaded in 57 seconds. I’m sitting here stunned and smiling. Tuesday 5/14: A friend of mine was discharged from the hospital after a long, challenging fight with pneumonia. It made me smile. Wednesday 5/15: My mom texted me a video of a dove (pigeon? bird? I don’t know the difference. ) violently bobbing its head into the bowl of bird food she left in her feeder. The thing looked like it was attempting to grind the seeds with its face, but I think it was just excited for fresh food. It made me smile. Thursday 5/16: Our first 80 degree day of the year made me smile. I can’t wait for warmth. Friday 5/17: Hannah and I watched a pretty terrible horror movie tonight called The Witch. As the film concluded, I thought it was going to end with this big powerful message (I’ll withhold the details in case you feel like wasting two hours ), but the ending fizzled into what felt like the lamest path it could have taken. However, I did smile several times at the film’s ability to gradually build tension and keep me on my toes. Saturday 5/18: Tonight we cooked the greatest dish we’ve ever made as a couple. Parmesan mushroom risotto. It was creamy and soft and bursting with flavor. Every single bite made me smile. Also, hey, register for our 5K? Link in my bio!
HUGEEEE thank you to everyone who came out to my book reading at @wildrumpusbooksmpls ! I had so much fun laughing with all of you! I’m so excited by all the love surrounding “Strangers Assume My Girlfriend Is My Nurse” : ) Thank you!
What Made Me Smile This Week: Sunday 4/28: Hannah (and several members of her family ) spent hours today and yesterday helping me pack up all the books that were preordered through Laughing At My Nightmare, Inc. Having their support means so much to me, and makes me smile. Monday 4/29: Hannah and I took the last 200 autographed copies of my newest book to the post office today! Strangers Assume My Girlfriend Is My Nurse debuts tomorrow, which has me feeling all kinds of excited. I am smiling. Tuesday 4/30: I had a long day of doctor visits to get myself established with the various specialists who take part in my care. Going into the appointments, I was nervous about whatever issues they might find with my health. However, I’m beyond grateful to say that each doctor gave me a clean bill of health! In fact, I’m stronger and my lung muscles are even healthier than they were two years ago! Getting these fantastic reports made me smile. Wednesday 5/01: Hundreds of people have been sending me photos of themselves holding my new book. Hearing the initial reports that people are enjoying it makes me smile more than I can explain. Thursday 5/02: Watching the 76ers pull off another big playoff victory made me smile. Could this be the year? Friday 5/03: I begin most days lately by checking the online registration page for the 2019 Laughing At My Nightmare 5K. Today’s check revealed that two participants from Texas have signed up to attend! I’m absolutely honored that people are traveling so far to attend our event! The proceeds from our 5K help us provide vital equipment to people living with muscular dystrophy, so every single registration makes me smile (link in my bio )! . Saturday 5/04: Today is my mom’s birthday! Talking to her on the phone this morning as she sat on her back patio and planned out her garden for this year made me smile. I can’t wait to see all of my family when I’m back for a visit in June. Happy birthday, mom! You make me smile. What made you smile this week?
Writing Tip: NEVER name your book after an old essay you wrote. It will forever confuse people. What’s even more fun are all the people suggesting that both Anna and Hannah must be actresses (paid by me ) pretending to be my girlfriend in an effort to become famous 😂 Obviously, the idea that a man with a disability should somehow manage to date not just one, but two!!!! able-bodied women in his lifetime is completely unrealistic. Oh well! Hopefully this book helps lay some of those stigmas to rest.
NEW VIDEO NOW LIVE ON SQUIRMY AND GRUBS BUT READ THIS FIRST: As you know, I had a long day of check-ins with my doctors yesterday. My favorite moment of the day (in addition to some great news about my health ) was when one of the doctors genuinely asked about our sex life. Now I know that might seem odd at first glance, but no doctor has ever asked me about that before; I think it has always just been assumed to be a non-existent aspect of my life. It’s just cool to me that society has come far enough that that’s no longer the case. Obviously, I made a debacle of the situation, and embarrassed Hannah immensely, but you can hear about all that in the video. Enjoy!
You guys know that Hannah and I are all about highlighting (and fixing! ) societal issues surrounding disability. We found out about a new initiative from @braunability that we are definitely getting behind. It’s called Drive for Inclusion, and its goal is to create more accessibility and inclusion for people who live with mobility challenges, starting with parking accessibility (and this incredibly innovative new solution to the parking dilemma ). After all, there is no inclusion without access. Learn more about the movement and how you can join in at the link in my bio. #braunability #driveforinclusion
Looooong day of appointments, but it went well! Now we are celebrating (and eating for the first time today ) at our favorite Mexican place. Look out for a video about our day tomorrow, and lastly, THANK YOU SO MUCH for all the kind messages about picking up and reading my book that debuted today! Your messages have filled me with joy.
What Made Me Smile This Week: Sunday 4/13: Realizing that I finally know my way around Minneapolis without (as much ) need for GPS made me smile. I love that feeling of being so familiar with a place that I can navigate without assistance. Monday 4/15: Creamy burrata atop juicy slices of fresh tomato, drizzled with olive oil, dashed with balsamic vinaigrette, and dusted with basil made me smile. Tuesday 4/16: Feeling like my neck muscles might be a bit stronger in the car makes me smile. Wednesday 4/17: I looked out our front window today and was surprised to see 12+ large boxes sitting on our porch. It turned out to be the first shipment of books that people have preordered through Laughing At My Nightmare, Inc. It makes me smile that so many people have ordered a signed copy! Also, big thanks to Hannah’s dad for carrying all those boxes inside for me. Thursday 4/18: I just realized, probably weeks or even months after the fact, that the plastic skirting beneath the sliding door on my van has completely disappeared. It must’ve ripped off on one of the millions of icebergs that jut across the streets of Minneapolis. My poor baby has the heart of a lion, but she’s starting to look a bit raggedy on the outside. My van makes me smile. Friday 4/19: Our apartment smelling like the fresh spring air breezing through our open windows makes me smile. Also, double smile, spending the evening at the Minnesota Zoo with Hannah’s niece, Evelyn, whose favorite game became instructing me to “drive faster” so that she could run ahead and jump in front of me. Saturday 4/20: Community support makes me smile. On May 3rd, an awesome Lehigh Valley jazz band is hosting a Donor Appreciation Night for my nonprofit organization. Follow the link in my bio to grab yourself a ticket! It’ll be a night of beer, wine, delicious food, and incredible jazz music. What made you smile this week?
The face of a man with very few muscles, but very many books to sign. Jokes aside, it’s only a little over a week until STRANGERS ASSUME MY GIRLFRIEND IS MY NURSE is released to the world, and I’m full of anxious excitement. You can preorder it right now pretty much anywhere books are sold (or the link in my bio ). I can’t wait to share it with you. #bookstagram #book #books #bookshelf #reading #bookish #weak #sma #tinyarms #bigheart #inspirationaldisabledsuperheroboy
What Made Me Smile This Week: Sunday 4/7: Being able to have our back door open this morning without freezing to death made me smile. Fresh springtime air is lovely. Monday 4/8: For pretty much all of my life, I thought my parents had named me partially because of the old western classic, “Shane.” Why I thought this, I have no idea, but it was pretty concrete in my memory that this movie was slightly responsible for my name. Tonight, I watched my namesake movie for the first time. I enjoyed it about as much as one can enjoy a wildly outdated cowboy movie intended for young children. After watching, I texted my parents: “Finally watched ‘Shane!’ Why did you name me after him?” My mom responded: “We’ve never seen that. You’re not named after him?” ... So apparently I’ve completely fabricated the origin of my name, which made me laugh and smile. Tuesday 4/9: Pringles made me smile. Wednesday 4/10: I spoke too soon. It’s snowing heavily and 4-8 inches are expected today. The universe is cruel and there’s little reason to smile (besides this tomato soup and cheddar biscuit that I’m about to devour ). Thursday 4/11: A warm heating pad on my ice cold feet made me smile. Friday 4/12: I found the perfect solution to a longstanding obstacle to independence today. More on that soon, but just know that finding beneficial adaptations makes me smile. Saturday 4/13: People from all across the country are signing up to ATTEND the 2019 Laughing At My Nightmare 5K Run! June 22nd, Bethlehem, PA. If you’re coming, let me know, because Hannah and I want to meet you! Thank you so much to everyone who is registering (both the in-person and virtual run ) for supporting our mission of providing vital equipment to people living with muscular dystrophy! Register at the link in my bio! What made you smile this week?
Today I got to hold the first real hardcover copy of my upcoming book, Strangers Assume My Girlfriend Is My Nurse. After gently stroking its precious little spine and letting its page tips tickle my cheeks, I became overcome with lust and couldn’t resist licking the cover in its entirety. I’m really excited for this book to come out. I hope all of you are preordering! You can get it pretty much wherever books are sold (Amazon, B&N, etc. ). If you’d like to go above and beyond in your selfless support of my writing career, you can tag friends in the comments here so that they too might discover it : ) Thank you!!!
Some very big reviews are starting to come in for my upcoming book, and I could not be more excited. ALSO, my book is currently in #20,575 place on the Amazon ranking which is the best I’ve ever achieved. THAT’S SO COOL. I can’t really explain how thankful and happy this makes me feel. Please check out “Strangers Assume My Girlfriend Is My Nurse.” I really put my heart and soul into this one, and I think you’ll enjoy it. (Plus, two reviews said I’m “tender” so that must mean something. )
What Made Me Smile This Week: Sunday 3/31: A brewery called Lynnwood Brewing Concern ( @lynnwoodbrewing ) in North Carolina surprised me with a fantastic box of their beer. Opening this incredible gift made me smile, as did the first sip of their Belgian blonde pilsner. Monday 4/1: Hannah had to watch “The Gladiator” for a film class she’s taking this semester. We watched it together, which made me smile, but I’m pretty sure I enjoyed it a whole lot more than she did. Tuesday 4/2: My van having more gas than I expected made me smile tonight. Wednesday 4/3: A killer spider attacked Hannah tonight. She didn’t enjoy it, and I feel bad about that, but seeing the brave little arachnid charge at her made me smile. Thursday 4/4: We are dog-sitting for Hannah’s brother this morning, a spunky little German Shorthaired Pointer named Nora. (The dog, I mean, not her brother. ) I needed to pee, so Hannah lifted me into our bed to go, and Nora jumped right up and stood guard over me while I used my pee jar. It made me smile. Friday 4/5: A police vehicle pulled up out front of our house, which—as a highly anxious person—caused me to feel the slight pangs of minor alarm. Turned out that he was just having his lunch on our block. It made me smile. Saturday 4/6: Earlier this week, I announced that Hannah and I will be traveling to PA for the Laughing At My Nightmare 5K on June 22nd. It makes me smile to know that we’ll be there for our biggest event of the year, and I’m really looking forward to meeting all of our new supporters! You can register right now through the link in my bio. What made you smile this week?
In this episode, we arrive at our rental house in Marco Island! Shane, the Safari Guru of the Deep South, spots some "crocs" and provides a stimulating science lesson on their reproductive habits. Hannah attempts a breathtaking aquatic challenge, issued to her by Shane, the Stuntmaster Extraordinaire of Marco Island. We dine on scrumptious seafood and Shane beats the odds and feeds himself using a metal spoon (in what many are calling The Most Inspirational Moment of 2019 ). LINK IN MY BIO!
We hope to see you this year! June 22, 2019 Bethlehem, PA All proceeds benefit @laughingatmynightmareinc which provides medical and adaptive equipment to people living with muscular dystrophy! Register or donate at laughingatmynightmare.com (or follow link in my bio ) @hannahayl and I will be there. Will you come out and join us?! Photo: @jermcohen
ANNOUNCEMENT! Hannah and I are so excited to say we’ve worked out all the details and WE WILL BE ATTENDING this year’s Laughing At My Nightmare 5K Run, Walk, and Roll in Bethlehem, PA! Come join us on June 22nd, help us raise a bunch of funds for my nonprofit (which provides equipment to people living with MD ), and hang out with us after the run! Our 5K is super laid back. Many participants walk the entire course. Many participants (like me ) roll it in their chairs. People bring their puppies, strollers, and Hannah even did the whole thing riding behind me on a longboard last year. This event isn’t about winners and losers. Instead we focus on throwing the happiest, most laughter-filled 5K event you’ll ever attend. We would LOVE to see a massive group of Squirmy and Grubs supporters out there with us on the day of the run! Your registration will literally change lives, and we would love the opportunity to meet all of our east coast supporters! Follow the link in my bio and use the top button to get yourself registered! Thank you so much, and we can wait to see all you there! Photo: @jermcohen