23-year-old Tyler has the energy, humour, and dreams of any able-bodied twenty-something, but he has the rare condition of spinal muscular atrophy (SMA).
Despite not being able to move around on his own or lift anything that weighs more than three ounces, the resilient guy from Omaha, Nebraska, is eager to not let the degenerative motor neurone disorder get in the way of his aspirations.
Tyler’s SMA means that his armpit touches his hip, and he describes his body as a ‘boomerang’ due to how his spine and ribs are bent.
Here is a video of our interview with Tyler:
SMA is a genetic rare neuromuscular disorder characterised by loss of motor neurons and progressive muscle wasting.
As well as suffering with this disease, Tyler had an incident where he died for six minutes.
Explaining the situation, Tyler said to UNILAD:
It was a very odd situation, we went to hospital and they said ‘you’re very nauseous, there is a black liquid in your stomach, we’re going to have to pump that out’, and I said okay.
As they were doing that, I blacked out, and I woke up four days later and the room was full of people.
I was like ‘well, this isn’t good’, and yeah so the next day my aunt asked me if my chest hurt, and I said ‘yeah, how do you know?’ and she said ‘well, you had CPR’.
I was like ‘what now?’ I said for ‘how long?’ and when she told me six minutes I was like ‘HUH?’.
I wasn’t aware of it, but I was having some very odd visualisations and they made a little bit more sense as I was told that.
Tyler has turned this traumatic situation into a really strong example of his resilience.
The fact that a 65 pound 20-year-old endured CPR for six minutes and is still living.
I think that is a testament to how stubborn people with disabilities can be. How resilient they are.
As well as being physically resilient, Tyler’s mindset is inspiringly positive.
He explained that he feels he was blessed with a “‘If I can’t fix it, why be upset about it?’ kind of attitude” which has served him well.
After losing a bet with a friend, he actually ended up doing a stand-up comedy show and enjoyed every second.
Stand-up comedy is a terrifying thing, but Tyler explained:
It was a dare at first, my friend said ‘you’ve got social anxiety haven’t you?’ and I said ‘yeah’, and they said ‘why don’t you do comedy?’.
So I did it and honestly loved it. The fact that I can take something so negative and make people laugh about it.
I think it’s a classic cry or laugh situation.
He explained how comedy is his way of fight public misconceptions about disability:
The public mostly has misconceptions about disability in general. They just kind of look at you and dismiss your cognitive abilities because of your physical ones.
Now that I’m in comedy, it’s fantastic because I get to be all creative with them and point it out in various ways and make people embarrassed.
In terms of a reaction to my comedy, I get everything from ‘Oh my god, why did you say that?’ to people laughing.
People don’t know if they can laugh at my comedy show. It’s like ‘no why are you guys saying aww, I’m on a stage’.
The main concern about Tyler’s health is that his lungs are okay, but his diaphragm is affected so what the doctors worry about is the muscle responsible for controlling his breathing will get worse.
Though the condition is degenerative, Tyler’s type two has the largest age range. He recalled knowing someone who passed away younger than him, but also someone who was 20 years his senior.
Looking to the future, he dreams of continuing comedy, but also starting a non-profit organisation to create a transportation device for disabled people that goes the extra mile.
He explained his idea:
There’s a dream non-profit that I’m going to start, I just need to have the right ears and eyes on it, because once I start it, I want to make sure it’s effective.
What I want to do is create a transportation for the disabled that doesn’t just restrict them to going to a doctor appointment or the grocery store, but independence beyond that.
24/7 operation, because as is now in the States, you’re subjected to public transit times.
It’s like being told ‘hey at 9pm you can no longer use your legs’. When you get to a certain age, your life becomes more than just school and doctor’s appointments.
The heart-breaking fact about Tyler’s degenerative condition is that there is a treatment to halt muscle deterioration, but it costs well over a million dollars.
Tyler explained that for the first year of seven shots of Spinraza, a treatment that addresses the underlying cause of motor neurone loss, costs an outrageous $750,000.
Once again the unjust pharmaceutical companies are allowed to charge extortionate prices that most people simply can’t afford.
That is only for the first year, you then need three shots in the spine per year, costing a whopping $125,000 per shot.
Hopefully they make treatment more affordable for inspiring people like Tyler.
The aspiring NPO-owner also said he’d be looking for any business advice and guidance to help him.