How I Became Disabled - My Earliest Symptoms / Squirmy and Grubs
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- Опубліковано 2 жов 2024
- In this episode, Hannah and I tell the origin story of my disability, and how doctors eventually diagnosed me with Spinal Muscular Atrophy. Don't forget to mark your calendars for the May 28th birthday livestream, benefitting Laughing At My Nightmare, Inc.
Hannah and I absolutely love making videos for you. If you would like to support our work so that we can continue sharing our life and relationship with you for years to come, you can do so on our Patreon: / squirmyandgrubs
Thank you SO much!
MORE INFO ABOUT US AND OUR CHANNEL:
Follow us on Instagram at:
Shane: / shaneburcaw
Hannah: / hannahayl
Our address:
Squirmy and Grubs
PO Box 16411
Minneapolis, MN 55416
GRAB A COPY of Shane’s latest memoir, STRANGERS ASSUME MY GIRLFRIEND IS MY NURSE, featuring many never-before-told stories about Shane and Hannah’s relationship, right here: us.macmillan.c...
RUN, WALK, or ROLL in the Laughing At My Nightmare 5K on June 22nd: www.laughingat...
OFFICIAL Squirmy and Grubs Merch: teespring.com/...
SUBSCRIBE for more! 👉 / squirmyandgrubs
Intro animation made by Pinkietoons! Check out her Instagram page to see more of her awesome work: / pinkietoons
Shane was born with a neuromuscular disease called Spinal Muscular Atrophy that requires him to use an electric wheelchair. He is the author of several award-winning books, the President of a nonprofit organization called Laughing At My Nightmare, and a renowned public speaker who has performed across the country at places such as Harvard University, The University of Florida, The University of Connecticut, Princeton University, and many more.
Hannah is a senior at Carleton College, studying sociology and anthropology. She works as a researcher for an educational consulting firm. Her future aspirations include attending law school and owning a goat sanctuary. She films and edits the “Squirmy and Grubs” vlog.
Shane and Hannah have been dating for 3 years and living together in Minneapolis for a year. Their interabled relationship often confuses people, because much of society still cannot fathom people with disabilities being involved in loving, intimate relationships. Anyone who watches these episodes will quickly see their relationship is just as “normal” as any other. Sure, Hannah helps Shane use the bathroom and brush his teeth, but those activities do not detract from the emotional, intellectual, and physical connection they experience together.
"I came outta the womb in a tiny wheelchair"
HAHAHA!!!
Shane has the best sense of humor😂🤣
This has me cracking up 😂
@Jayce Ollie yes he does
his mom must have one massive womb....
@Jayce Ollie What a disappointing comment
Rodney ~ Fellow Marylander here and I completely agree with your comment.😁
This girls personality makes her the most beautiful girl in the world. She’s already very beautiful but her being so kind and amazing makes her perfect. What a great couple.
I agree. And such a humble couple! 💜
Honestly she that perfect i wish i could have a girl like that a girl can look good but what makes her perfect is a kind personilty
ohh yeah !!
I thought the exact same thing. She's like wow!
Susana Seay
Both of them are extraordinary and beautiful. Agree with you.
"I used to be able to roll, I don't know how to explain that."
"people know what rolling is"
😂😂😂
The love in Hannah's eyes when she looks at Shane is just so touching and inspirational
You're trolling us right?!!!
She is perfectly happy and fulfilled. You can clearly see that. Why wouldn't it be fulfilling for her??? They're a great match.
I might not be! But I meant 'us' as in the rest of Hannah and Shane's followers / supporters. :)
ua-cam.com/video/iO77AjVc-jM/v-deo.html
Who ever wrote that above comment is seriously disturbed.. the mear
fact that you would judge her reasons for being with him with fictitious reasons that you have made in your mind suggest to me your the one with issues.. we are first spirts have a physical experience than it the opposite and I believe they are spiritually connected who the hell do you think you are spreading such hatred and judgment .. go away and learn to love with compassion than judge with hatred.. find some purpose or meaning in your life any TRUTH you speak is that in of yourself and doesn’t represent their situation or the views of others entirely.. that’s where your TRUTH fails you.. I am sorry Hannah that you would be so chastised by ignorant people .. you are such and inspiration living your truth regardless of internet haters who are devoid of basic compassion and empathy ❤️obviously vanity isn’t something you struggle with nor ego ..your light shines brightly and so does Shane’s both of you do good works keep shining
PICTURES PICTURES PICTURES PLEASE!!! Please do a video showing lots of baby/ youth pics of both of you that would be so cool and I'm sure I'm not the only viewer who would love to see that!!!
You should buy his books ! There are some great pics in there!
Right I was so hoping for more pics of little Shane
Yessss!
Yes please 🦅
The reason Shane has the love of such amazing woman like Hannah is because he's cool AF. They're a great pair.
I think he's "cool" 'cause here's with her.
He is amazing. I’ve been laughing so much, I had to scroll down to see what others think about it.
WhYs after mean???
I absolutely adore the way you 2 play off each other’s humor... can’t get enough of your videos 😂😂😂
“Little Shane” could be your rapper name. 🤣
*lil
Or lil shay shay
Hannah: "So the local neurologist played with Shane for about an hour....."
Shane: "That's probably not the best way to phrase that..."
lmaooooo xD
lol
Angelgurl1455 i love their wit
@@StraightZzzStudent their so silly! It would be 100% fun to take a trip with them
Sheryl Williams oh totally!!
@@sherylwilliams1672 can I come? :3
I had to go back and watch the “I was bit by someone with the disease” like 3 times because it made me laugh so hard
I often forget Shane is disabled, sometimes I'm just like "Why doesn't he just stand up?" 🤦🏿♀️😂 This channel has really taught me a lot, especially about normalizing people beyond their disabilities. Love you guys. ❤️ Notification squad.
He's more "normal" than a lot of people .
Lazy Lohan I absolutely agree. I really feel that watching Hannah and Shane’s videos has broadened my mind as to how absolutely normal an interabled relationship is. I love the both of them, I feel almost part of their family but not in a creepy, sad kind of way!
Lazy Lohan ...exactly what I was thinking. His comedic timing is effortlessly funny! I would purchase a ticket, for sure!
Love this ♡
@@emh8861 as a psych nurse i completely agree lol
Hannah's "Nope" response is my que to realize that Shane is joking. You two are made for each other. Sometimes miracles are just good people with kind hearts. Love you guys.
*cue
@@hevbushnell4013 shush shush no grammer here que it is then I guess 🐘
I like to agree with the miracle statement it is sweet and definitely heart felt. But the truth is that these two individuals have done tons of work on themselves, had supportive parents while growing up, and met each other. Because they match.
I was fully expecting Shane to make the joke. "I was born with it, the end" 😂 thanks for the in depth video! Happy early birthday!
😅
Same 😂😂😂
That's how I'd do it, as I was a surprise.
5 second video lol
The way they love each other is inspirational
Nice origin story! I have a feeding tube, and sometimes my wife very seriously turns to me and says "at least I can eat." I think it's hilarious. I totally get disability humor in relationships. :)
I'm blind in one eye. Totally agree about disability humor. I'm teased by my family about depth perception (it is a mystery to me), or they do strange things on my blind side.
Yeh same, I have a tube and can't walk. People will be like 'man, that was a tiring walk' and I'm just like 'yeh I know right'.
Tbh I think it takes the awkwardness away from it. People tiptoe around disabilities not knowing what to say but just bringing the odd joke in helps put people at ease.
Danyell Rollf wow, something similar happened to my dad. He didn’t go completely blind in that eye but his vision is severely damaged and he’s sensitive to sunlight because of that eye. Happened at work too.
unfortunately I can't find much humor in my mental disability 😔 I do like when I can find stupid memes that can relate tho
My best friend uses "yeah well at least I can walk" on me all the time and it cracks me up everytime
Love the way Hannah just says NOPE to Shane’s made up stories lol
Karen Taylor it’s literally my favorite part of each episode b/c of how elaborate his stories are and how quick her response is lol 😂
I am a special ed teacher and I worked with a 9 year old boy who also had SMA from birth. He needed a respirator very early on and suffered some complcations but he too had an amazing sense of humor. He passed away a year ago and our whole staff miss him terribly. He taught me about appreciating every small thing I could do and about letting annoying things not get in the way of living happily! Happy birthday!
Couple goals: to have someone look at you the way Hannah looks at Shane
Omg RIGHT?!
Watching you both is making my marriage better. Thank you both for showing me to love even at the darkest and most difficult moments. It's hard but now, I am so happy and blessed to be alive with my hubby and our son. Cannot thank you enough.
Monica Block right? What is true love....SHANE AND HANNA and Hanna and Hanna and Hanna and Hanna and Hanna do I dare stop🎯
Thank God for youtube. It's a good outlet for them and educational and inspiring for us
That's awesome. God bless you :)
Lolli Carlquist god don’t exists. Just be happy to be alive and forget the religion, the world would be a better place without it. Or you believe to fairies? No? Alright.
Nele1208 first of all, learn to spell. Second, why did you feel the need to say this? If you don’t believe, fine. You don’t have proof God doesn’t exist, do you? But there’s plenty of proof He does. Ask the archaeologists who have discovered artifacts that back up what’s in the Bible. Educate yourself.
I started watching at 38k. it's crazy to see that y'all are now almost at 400k.
My Mothers birthday is May 26. She will be 95 years old. And going strong.
That's awesome! Happy birthday to your mom!!❤
Yay! for your Mom. My mom is 80 May 27th. Could be 65. 💕 Love her.
Incredible! I hope my parents live to a ripe old age that way I know I might have a chance lol all my grandparents passed in their early 80s so fingers crossed that my healthy eating and no smoking keeps me going 😅
Bless her! Please tell her happy birthday from us!
Happy Birthday to your mom ...my late mom's birthday was May 27 but she passed away at almost 61 in March 1984.She was the best ..Congratulations ...💗
Oh my God... Right when he said "pull my pants down" an ad came on and I laughed so hard! LOL! UA-cam was like NOPE!
TheRisskee omg I’m watching this video rn and it did that for me too xD
XD!!!
TheRisskee OMG The same thing happened to me. I thought it was just a little ‘interlude’. I giggled.
Literally the way hannah is always looking at Shane. The love!! Love yall so much.
I love how she looks at him. You can see how she loves him so much !
@@martinedwardfleet lol you sound angry.
I don’t get it. I’ve seen plenty of people who are in love who don’t do that.
leeartlee915 I’m in love with my husband and I don’t do that. But every love is different. It’s still sweet.
I was thinking the same. So much love and admiration.
I love the way how you two interact with each other it's so sweet
I Love your humour!!!! You both are so personable, its great to watch you interact together!
My dad's cousin's seven month old infant was just diagnosed with SMA. I've been subscribed to your channel for about a year and have watched many of your videos and so I had my grandma share your channel with her and her husband. Thank you for spreading awareness about SMA.
🙏
“I feel like if I could lift my arms above my head, I would be unstoppable.” Mood. I have EDS & POTS and lifting my arms above my head is unreachable currently but I would get into so much more stuff. 😂
He's so funny.
I have EDS and POTS too...symptoms started when I was 29 years old and I am now 52. Hang in there, the pain and blood pressure symptoms get a little better each decade as you age. At least mine did. We become less flexible the older we get.
For us who are being supporting please do not caps on important Med references
Same and same!! RIP to all the great hairstyles I used to do, now lifting my hands over my head to do that is so not worth the consequences haha
Im a hEDS POTSie too! I can do arms over head..but do I want a subluxation and more pain than I already have? Nope! Hi zebras friends! 😎🐱
please show a pic of a 2 1/2 year old shane in his wheelchair. That has to be the cutest!!!
@mommymode1985 how is it sad? Shane has a good life. He's stated he was really excited to get his first wheelchair, so if he's not sad why are you? Unless you're upholding negative views of what disability means?
Do you understand how patronising it is to view someones life as sad when they don't?
@mommymode1985 Missing the point
Very sad?!! What?! Not at all. He is happy and living a very fulfilled life.
@mommymode1985 hes lucky to be alive. Not sad
@mommymode1985 that is one perspective. Some people cant handle normal healthy babies...my mom was an awful mother and I was not disabled. Now i am 39 and emotionally and psychologically disturbed from years of being unloved and toxic relationships. I AM A BURDEN BC I AM MENTAL CASE. this happy guy in a wheelchair is not a burden. ITS ALL PERSPECTIVE
Omg I just decided I want baby pictures of both of you so cute
Yaaasss!
There's some pics in his books ❤️
Yeeesss! 😍
Wtf
I am disabled. I am also abled!❤️
Shane (Batting eyelashes): "The way I presented with, like, my glimmering eyes and my charm, my intelligence..." I'm dying 😂😂😂😂😂
Which bit do you mean where was that? Did I literally miss that bit I think I missed that bit? Can you give timestamp? Give timestamp please give stamp off the time when this actually happened I didn't see it all at all actually so please give z a time stamp if you can 🦏
5:14 he's giving a fake explanation of how the doctor knew he had SMA.
You two were so meant to be together; you're two peas in a pod!
I love when Hannah says “nope” to Shane’s antics. It’s the best 🤣
Shane your skin looks amazing! You look very happy and handsome ☺
27 is my year too! I’ve been 27 for the last 35 years!!! It’s AWESOME!!!
Robin Auras sounds like something my mom would say, lol. Her 45th birthday was actually just the 24th anniversary of her 21st birthday
Mine too! My second 27th birthday this year hahahahah
I am going backwards in age from this year on.
27 is the year that I stayed in my head. It’s so weird, after 27...I had to stop and think how old I really was lol. I’ll forever be 27!
No, Robin you haven't.
The local neurologist played with Shane for about an hour..
Probably not the best way to phrase that 😂😂😂
Holy you guys are so funny .. New subscriber here .. ❤️
"I came right out in my wheelchair." 😂 Too funny. Happy Birthday, Shane!! 🎉🎂🎈
Yay! A fellow May baby. Happy Birthday Shane!!
02:07 Shane: i got my disease because someone bit me..
Hannah: don't you mean bitten
Love you guys 😂❤
*Shane makes joke*
*Hannah fixes grammar in joke*
He has a sense of humor to cope with his disability.
I love your energy! I love the way she picks at you. She’s fun and picks just like any couple. Love you both!
I love the two of you, your humour and positivity is inspiring. I have Primary Progressive MS and I've been a full time wheelchair user for 5 years now. I'm on my own so it's not easy. I'm hoping to move into a specialised care facility which is more like a community as it's run by a wonderful charity. It would be so much better for me emotionally to live with other disabled people as well as the caring staff members. I feel very alone and isolated currently. Keep smiling, you are my heroes xx
Hey Sandra, I hope you're feeling a bit better now and made it into the community.
The love in hannah eyes that he love him very much the way he is
Happy healthy Birthday . I love u guys. U both r amazing.💜🎂
Maybe I missed this in an earlier video, but what is the explanation or meaning behind “Squirmy & Grubs”.
I have really enjoyed all of your videos!!
squirmy is Hannah because she moves a lot in her sleep and grubs is Shane because his hands are really sweaty and grubby
"And then they had to cut his little baby leg..." LMAO! Hannah explaining medical procedures is EVERYTHING!
"Have you heard of Dracula?"
"Have you heard of rabies?" lmao
Your parents did an amazing job at raising a well rounded human being - credit to them! It's always interesting to hear the back story. I'd love to know what Hannah was like growing up too...
I was thinking they both must have incredible parents. I wish we could all have awesome parents...but we dont all get so lucky
@@lollic307 c yeah but that shouldn't stop you to make it better, n live to the fullest.
@@ashwin.unlead true . Faith and courage
@@lollic307 Yup , once you change that mindset your life wont be the same again :)
You both are truly amazing. So loving and so sweet to each other. Both of you are blessed to have each other. Thank you for sharing your back story. It is helpful to hear and understand your disability and disease. You really make me a more thankful person. You bless me.
Doctors say he has type 2, but she says he has type1 "Yeah my whole life I've been living a lie"😂😂😂😂😂
You two are great together. Your lives would be so different without each other, it's like your soul's go way back in time.
I think the live stream donation is awesome!!!!! I have a rare disease called CRPS and I can’t find help anywhere. All I need is a walk in bathtub so I can actually bathe and insurance won’t help and my husband works so we qualify for no help!!! So people like you are amazing. I am so glad I ran across your videos because I really really really find you both so inspiring!!! God bless both of you!!!!!! I know the electrocution. They are like little needles that stick just under your skin and NO it’s NOT fun!!!!!
"Someone bit me"! Hilarious 😂!
Wow! So interesting! Thanks for sharing your story! Love you guys. I had the electrifying needles test at the Mayo in Rochester...very painful for sure. 😢
I love you guys, it always makes my day just to watch y'all's videos, y'all always put a smile on my face 😊
I have a son son who gas OI who also has a wicked twisted sense of humour just like Shane, who had an encyclopaedia for normal conversation and the public that encountered him were amazed this baby! Toddler, as a teenager he just appeared as a gobby now it all pain in the a..e kid, I brought up my son to be never apologetic, to speak up for himself, he may have a degenerative condition, but I've tried to keep reminding him that he is Ben and that there is nothing wrong with the way he was born, I just wish he had somebody to share his beautiful life with as you have Shane, look after each other xxx
Closed captions: "my parents were both carriers" = "Mike Harrison vegetarians." I sometimes use cc to help me hear better, but the system UA-cam (I assume) uses has too many mistakes to be useful.
Fern Savannah I bet that Hannah and Shane will add CC done by them or the community as soon as they are done. UA-cam’s are the worst.
I dont get it because UA-cam not too long ago put auto generated captions on all the videos on the home tab before you select a video to watch and the captions are actually very decent. Yet the auto generated captions you turn on for the video are STILL pretty awful. How do they (as in UA-cam) have a system that works but not universally use it. Urg...frustrating.
I need captions to help me understand what they are saying
My birthday is today! May 27! Happy Birthday Shane!
You guys are so magical…despite just having a pretty serious fight with my spouse, you popped up in my feed and brightened up a very dark moment for me. I’m just sitting here admiring your beautiful relationship. If all couples were as respectful, loving and caring as you two are towards each other, this world would completely turn around.
You guys crack me up! I want to see all the edited stuff. How many times a day does Hannah say "I can't believe you said that?!" Love it!
"It left me with a scar. And I have to take my pants off to show you- "Grammerly is an app that helps you write...." Uhhhh..... that was the most intensely placed commercial break ever!
So much love between the two of you! Beautiful couple!
I absolutely love how ya'll pick on each other. In my family that is a true sign of affection.
love you guys you are so perfect together.you show love is what matters.pray you have a long blessed life
“So the local neurologist played with Shane for about an hour”
“Probably not the best way to phrase that” I freaking died.. 😂😂😂
I love your channel you guys are awesome !!! I have a cousin who had Muscular Dystrophy and sadly he passed away when he was 14 . I know if he was still with us he would love your channel 😊
It’s my daughter’s birthday today. She’s called Jo, and she’s 29. It was mine on May 3.
Happy Birthday Jo!
Happy birthday from Germany 🎉 🎂
Happy Birthday, Jo! 🥳
Happy Birthday Jo😁
Happy birthday jo 🎉🎉🎊🍪🍫🍬🍭🍩🎂🍯🎂🎂🎂make sure lots of sweets chocolate lollipops and cake to eat an presents too have a nice birthday bye! 🐭🐁🐀🐹🐰🐇🐿🦔
You are a freak dude! And Hannah, you be Superwoman in my book! Amazing people, couple, and story. I'm 62 with back issues, but damn, you inspire me...keep rolling man!
Hi there! You guys are so funny! Laughter is good like a medicine. So appropriate your life, and charity is aptly named! Love you both! ♥️
Hi Karen...! Yes indeed.. Laughter isss the best medicine!
@@ottelisezipporah-isadora8070 Hi Astrid! That was Joe, but this is Karen! LOL! I have forbidden him from using emojis, but he won't listen! 🤣😄😁❤❤❤😉
@@SixBlindKids Lolol!
I'm glad she makes him happy, but I dont doubt for a second she is using him. After hes gone, she will be left with a good income on youtube. And possibly life insurance. Even still, at least he is happy
I just discovered you both yesterday and have binge watched hours and hours. Thank you for unabashedly sharing yourselves, sharing your love for one another, and educating. I wish you didn't have to feel it necessary to justify your love for one another in response to "critics". These people who doubt your relationship have obviously never felt or allowed themselves to feel REAL love for another person, and that's something to pity. What you have is GOLD. Much respect and love from this guy!
Happy birthday Shane!
Shane and I are currently the same age and both have May birthdays.
Happy almost-birthday, Shane!
You guys are fantastic. It gives me allot of hope. Keep on doing what your doing. Me an my girl wish ya happiness.
I love the cat 🐱 pillow!
Happy prebirthday Shane.
My first wheelchair? It makes me think of those kid’s toys like, “My First Playscape” or “My First Stove” or something (you know what I’m talking about). My First Wheelchair ™️ 😂🤣
I had a muscle biopsy when I was 2 - I think the scar is really cool, I like it!
Yes! I used to work at an elementary school. There was the cutest little boy that received his first power wheelchair while there. It was candy apple red, with sparkles. He used to love going so fast! I used to tease him about giving him a speeding ticket! He'd giggle and giggle. Precious! Such a blessing!
Shane: "Probably not the best way to phrase that"... 🤣
Haha I love when Shane said "I would have to take my pants off to show you" the video cut to an advertisement.
I worked at an elementary school where two brothers used electric wheelchairs to help with mobility issues from muscular dystrophy. The younger brother (second grader) thought it was cool that he could make his chair roll faster than his classmates could run. This was a concern because of loose gravel on the playground that could cause the chair to tip or spray gravel at other students, and because he might hit someone who didn’t get out of his way. The school worked with his parents and finally came up with guidelines and consequences to keep him and other students safe. The thought of having to go back to his manual chair, and that it could only be pushed by an adult was a big Incentive to slow down!!! I can totally see Shane challenging this kid to wheelchair races during recess if hey had been at the same school. ♿️♿️
♡♡♡
You two should have a podcast channel where you discuss random topics. Your combination of intelligence, wit and humor are charming and fun!
You guys crack me up! I love watching you both together
Haha I was going to be upset if we didn't get baby Shane photos!
You got the BEST bday in the world! My 16yo's bday is the same as urs. Mine is April 28th and my moms is Sept 28th.😊
My doctor knew right away by my tongue!
My muscle biopsy also said Type 1, but the genetic testing I did for Spinraza says Type 2
"the bird are singing the flowers are blooming - my birthdays in 3 days" 😂😂😂
This answered my questions. From 3 years in the future! Lol yes you were a cute kid! So glad you guys found each other! Be made Blissful everyone!
You guys are the best, I LOVE the way Hanna smiles at Shane....
Having a child or children with developmental issues can be super hard both physically and mentally. My husband and I are raising my 2 nieces (2 and 4) and their brother (14). All 3 were born with an extremely rare chromosome abnormality. They are the only 3 documented cases in the world and because of that, no one knows what to expect with them. They're very tiny. All 3 are the size of children half their age and extremely developmentally delayed. It's a ton of work taking care of them but worth every minute.
I would like to volunteer to do the official closed captions for the deaf and hard of hearing💜
Do it. Program is right there, ready for people to add captions!
JamaicanRain what program? I’d like to do the closed captioning too.
You 2 are adorable, by the way, my husband and I are disabled and we have disabilities ourselves
"I came right out in my chair" 😂😂😂
Shane I feel very close to you and My birthday is two days before yours happy birthday
Love you both! And LOVE Hannah’s “nopes” in every video..hysterical 😆❤️
Shane: "Look at me." *barely wiggles head back and forth* 😂
You know, I got married at 27. Just saying! It's a great age to be married 😜😜
Can you still reproduce?
Usually woman can reproduce untill their late 40s. Even past 50 is not that uncommon in the 21th century.
I Love your UA-cam channel Love From Norway❤️🇳🇴
I laugh so much every time I watch you two, Shane's attitude is so positive and Hannah brings out the best in him! I love watching all of your videos, thank you for sharing your lives! Happy early birthday Shane!
It was a needle. Nerve conduction test. The zap is quick, but it’s absolutely terrifying. I laughed every time. Idk why, but the doctor said she’s never actually had anyone laugh through it. Pretty sure I was just soo terrified that I didn’t know what else to do, LOL. Thank God you were a baby!!
Are you a carrier Hannah? Have you been tested to see if you are?
I feel like you have discussed it in a previous video but Im getting old and suffer from CRS