Hi, everyone
I wrote something that I need you all to hear
I'm gonna read it, here we go
This is going to be a bit heavy
So if you're accustomed to my usual lighthearted nonsense, buckle up
I can still picture with vivid clarity the night in middle school
When I first googled my disability
I was maybe 13 and had my sights set on becoming a film director
If, of course, the skate team that I had recently started with my friends
Didn't skyrocket us into everlasting glory
The first search result changed my life in an instant
"Patients with SMA type 2 generally do not survive beyond their third decade"
A punch to the gut doesn't even come close to capturing that feeling of realization
My stomach was knocked clean out of me with a wrecking ball
I sat there going numb and then I cried
With no older disabled mentors, no friends that had SMA to tell me otherwise
I took that prognosis as scientific fact
And let it become a formative moment in my youth
I would be dead before I turned thirty
Accepting my mortality at such a young age influenced my development
In more ways than I am probably even aware
It hung this cloud over my goals, my motivations, my relationships
My humor, my passions, and a lot more
But not all of its effects were entirely negative
In many ways, this grappling with my limited future
Helped me to become the person that I am today
It taught me to let go of the little things and focus on the beauty
The best part, and I say this with buckets of sarcasm
Is that the prognosis turned out to be bullshit
I got older and I met hundreds of adults living with SMA type 2
People with careers and families, who didn't spend a minute sitting around waiting to die
Medical technology advanced rapidly
Treatments came about that stopped and slowed the progression of SMA
These realities were simply unfathomable to me as a kid
In two weeks, on May 28th, I am turning 30 years old
Unless I get hit by a bus or choke on a grape in the next few days
I am about to outlive that dreadful number
That has played such a crucial role in my journey
And I'm proud to say, as weird as this sounds
That I fully expect to see 40 and 50 and beyond
Expecting a future for myself has not always been easy
But let me be very clear, this is not a story of overcoming my disability
Or beating the odds, it's a story of growth and acceptance
And learning to believe in myself despite the dismal expectations
Set out for me by the non disabled world
It is a story of luck, being born at the right time and into privilege
And it is a story of the incredible support that I have received along the way
I am thrilled to be turning 30
And I'm angry that I spent so long being doubtful that I would make it this far
So I am dedicating this birthday, my 30th to other disabled kids out there
Who might just be starting to imagine their futures
Please know that you are capable
Of accomplishing everything that you want in this life
And I urge you not to set limits for yourself
If you, precious listener, feel so inclined
I have set up a special birthday fundraiser through my non profit organization
The funds will be used to make life more accessible
For people living with disability
So if you enjoy my work or our videos or my writing
I would ask you to please consider donating a dollar or two
It is a privilege and an honor to be able to help people in this way
And I so wish I could go back and tell 13 year old me
About all the adventures that lie ahead
Thank you everyone, I'll put the link below