Meet Shane, live life to the fullest | My Last Days

Meet Shane, live life to the fullest | My Last Days


Hey SoulPancakers how you doing, Rainn Wilson here as you know mostly on Mondays, we have
Metaphysical Mondays, we have celebrities sharing their thoughts life’s big questions but today is a
different kind celebrity a very special event I want you to meet
an extremely courageous inspirational and kick ass young man named Shane Burcaw He is hysterical, he’s funny smart grave amazing and this this story is gonna blow your mind the
video is a little bit long so stick with it to the end you’ll be
glad that you took the journey please meet Shane Burcaw Alright that’s awesome Shane. That’s awesome, you just want to keep looking at it? Just forever, yes. Just stare at it. *laughter* Thank you so much You’re Welcome. Have a great night man. You to buddy. My name is Shane Burcaw and I have a disease called spinal muscular atrophy ah which is a form of muscle dystrophy, that in basic terms causes my muscles to deteriorate as I get older. most people with my disease die sometime between like 20 and 30 is like a rough estimate my parents
noticed it when I was really young because I wasn’t progressing physically the way other kids were, um so where other kids were started to crawl and reach for things I was happy to sit in one spot and hang out there for the day. I rely on other people to help me with pretty much anything from picking things up to going to the bathroom anything that an abled boy person does really without thinking about. What that means today is that all my muscles are extremely weak. Except for my penis. Sorry I had to *laughter* Shane is ah… is a inspiration daily inspiration for me funnny intelligent, sarcastic, to the core, and ah a magnet. I envy him you know, his capacity to make friends and to understand people Institute change is incredible thing for ah a kid his age, let alone his
disability if I lose my mind I’ll remember that moment we had a diagnosis from a pediatric neurologists who said spinal
muscular atrophy was his diagnosis, one of the characteristics there is no electrical activity fire across the
muscle synapses I asked like any parent would, Doc is he, is he ever going to walk and the doc said no probably not and after that is was just kind of white noise That evening, put Shane to sleep and the brevity today kinda came down on
us it was like standing on the edge of an abyss, and you could look down and let
it suck you in or look up and rise above I think ah looking at Shane you can see what choice we made Found his blogs randomly and decided to email him Yeah I just thought we would be good friends in real life So yeah I emailed her back and, it’s been wonderful ever since. I’m Patt Hess, I’m one of Shane’s best friends, one of his longest friends
well it’s rare when I don’t see him or talk to him
every day I always see him at school, we always text and try to hang out. Play Fefa. You’re Manchester United? You’re falling friends. Son of a bitch. Game over. Hah! A penalty you have One shot We have the exact same sense of humor
and can never be in a bad mood with each other it’s just always a good laughing mood I am Shane’s older cousin there was never
a point in time when you know the parents were like Shan’es handicap or anything like that we would always
figure out a way to have Shane their and do stuff with us he never saw it
as like oh theres something wrong with me I’m never going to be normal because we wouldn’t let him because he was normal he’s just like all this in fact probably way more intelligent then all of us too we laugh pretty much whenever we’re
together there’s a joke being cracked or just a
reference being made that we find funny we just like to focus on being funny the moment we’re in right now focus on
that. Our problems we’ll figure it out later I feel you’ll find with all of my friends that we’re all really good at making fun at each other and ourselves we all have that ability to laugh at our selfs.Which is you have to have that. I think my sense
of humor probably came from my dad and the reason
I say that is I’ve had it pretty much my whole life.
Well let’s see there’s breathing sex and laughter not necessarily in that
order laughing, its a part of me its a part of my family, laughing at
ourselves laughing at each other that’s just part
of the day I think in my case what I’ve lost in like physical abilities, I’ve made up for in my my whit, that sounds so self loving. If I had to deal with my life and my situation, without humor. Ah I would be in a very different place. Yeah it it’s a coping mechanism, who cares His look at everything is amazing. I don’t know how he does it. I try an have the same attitude even though its not even on close to the same level He never looks like something’s bothering him its, its amazing. And I just try to be like him honestly. Their part of everyone’s life that truly just blow and its about how
you react to that Which defines the quality of your life I don’t use humor to avoid thinking about the bad stuff in life, I use it to make the bad stuff less bad I don’t know what I would do without my family and the support system that they offer their all so much there for me and from a very young age my parents taught me that yeah your life is going to be different your
not going to have it as easy as some other people might but life is what you make of it and you can be happy or you can be sad you do what you gotta do when you have
kids um you raise them above your
shoulders and in Shane’s case on it just takes a little more lifting to get him up. Taking care of him basically just came second nature from
like the day I was born. Like I don’t even think
about doing this stuff i do anymore I kinda just comes he comes first and then I’ll take care of my self and I don’t really like think that I
just do that. We’re blessed with 2 amazing kids Shane is the brains and
Andrew is the Bronze the two of them together are an amazing pair. I heard my brother and my mom talking once about what Andrew wanted to do for college and Andrew said something like well I really don’t want to go away because I want to stay here and help out with Shane I really thought that was more important
than like doing what I want to do and like go live my life and it was certainly a hard
decision to make but I eventually came to the conclusion
that it’s not like I believe in forever I can come home on holidays weekends by it was certainly probably one of the hardest decisions I
had to make. And I think that says a lot about who my brother is As long as I have the ability to laugh at the shit that’s happening to me it’s a lot easier to deal with I’ll never that like I wouldn’t want to walk if I had the hypothetical possibility I know there are some people who are in wheelchairs and say no my wheel chairs are apart of who I am and I wouldn’t give it up for anything I think that;s kind of bull shit a little bit because I would fucking love to be able to walk and run and skateboard and surf and do cool shit as long as being able to do that didn’t change me as a person I mean I wouldn’t give up who I am to do that. many in my friends take relationships
reviews been having a bath i hear all the
stories about how they met up with Miss Jones the now had a
great time that’s something I’ve never been able you on that I’m up to be in line it’s
not as shy of his own way then miss my friends nurse hi all smiles II away from half half not the zone on and sell and me chance in life develop them
islands and wetlands joins us out there sunday I’m going to find a job that
doesn’t care about the challenges the waffles
together hywell just net sales were I was there as is all about rules happen the mothers things that they’re she can’t do there’s a whole buncha
stuff that he can do two years and yeah I study a blog called laughing I really on another the a place where it. right some the final stories that
happened in my life just to make people laugh a toasted a
few signs publish their have i’d honey farms every
time my long hunt involved in this place
where I document everything this defense about my life
because my disability on Bossa & Visitors long all about my
life and that have over there have been some thousand followers our visions I’m tolls
and fungicides and stuff that he’s learned by being apart of this huge blog
community it’s just absolutely incredible how I
don’t even know what a block was when when he started blogging I hope
that he reaches a billion people same recognize first that he really have
the ability to do something with it and when it came down to was creating a
non-profit what the nonprofit is raising money for muscular dystrophy
research we promote a massive positivity with a simple message: laugh and cell
how it’s possible to live your life in a way that you may
have not thought of doing before on words your was a father’s offers in good more important laughing its infinite the
Maria earlier the situations that his disease than allowing him to
live out the full life it’s not fair to me but its most
likely knock beer good happy ending here I don’t think about it wud house I kids can’t physically ahead and the most I think about that is when
I’m like in bed at night if my mind startling running sometimes I
think about it but then and I just like hit me his whole message
like just take what you have in live it to the
fullest in in the future on going to be
physically worse off time now and I have this reach a ram years Matthew L where my family is yeah down to like who Christmas
dinner and I years and on not there at I think that rules the most hopwood I’m not how plus yes while you realize at years on tasaday as I have asylum acts of Aki have every reason in the world wake up every morning his life but got
VM and heaney any money my future incise wounds you know she
every day his last that spawns by when you live
with it it’s not posted as far as time left: arm there’s too much time to
go dwelling on that in my opinion is money Beach there’s just no time for
that I said the world people and univers so mine violently amazing that some time possibly flames nod yes the losses signs however I she also said i firmly believe God a despite my lisence
hi love life yeah I’m still ask him questions after I
believe one way or another I believe in God and believe that heaven is a baseball field the machine is running catching the ball claim
within I believe that having is unconscionable of used month I don’t wanna go a day without sharing
I’m just one of the few victims that he’s changed
in very positive way sis amazing I’m so honored and blessed even have met him thank you her making your personal and think time and such important thing that people
don’t realize how how little it that we actually have and somebody who
has touched a limited amount of time he can he can be like this like what can you do think we can you
really do in your life we all have problems in life some other
valves and I’m small but quality I V life Israel depending upon how you react to
those problems and so my jeans you know reach as many
people as possible and to laugh with them and
distances many people the well I’ll LIF the No yes just shool the time the last by yourself problems the craziness in
the world around you do you have a better time and I’ll horizontal was bobbled himself the slot like in I’m

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