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After I published last week's episode, I realized I had more to say. Thus, we have this week's episode.
Zebras
"When you hear hoof beats, think horses, not zebras."
This is a phrase I've seen used to describe making a diagnosis of a medical condition. Consider the most common condition first; it's probably not the exotic one.
And that's a great approach that provide excellent medical care -- most of the time.
In my conversation with Rachel from BraEasy last week, it almost led to her daughter's death. Her daughter began having seizures at 8-years old. The medical team diagnosed it as an anxiety condition, and referred her to counsellors. They thought horses.
Rachel recognized that wasn't right and kept digging. Finally, she insisted on a physical exam and brain imaging revealed a potentially fatal tumor.
She saw the zebra.
The point is, we need to listen to our medical professionals because generally they are right. But not always. We still have to advocate for ourselves, even though a brain injury makes that harder. We have to educate ourselves, ask questions, learn more, and then ask more questions to make sure we get the best out come for our health that we can.
You can hear Rachel tell her story here.
Treatments and the Internet
Model, Influencer, and Disability Advocate Alex Dacy has been dealing with a bunch of backlash online lately.
Alex is Wheelchair_Rapunzel on Instagram. She's a wheelchair user who lives with Spinal Muscular Atrophy, a degenerative condition that impacts the motor neurons. That means her limbs don't work well, she's struggled with swallowing, breathing, and other things. She's does a nice job of telling her story so I'd encourage you to check out her Instagram to learn more.
She recently started a new treatment with a medication called Risdiplam, or, as Alex calls it, "Twerk Juice." She's been getting some great results and has been sharing her journey online.
And people have been giving her crap for it. And not just because she's a woman on the internet.
People purporting to be part of the SMA community are claiming she's empowering ableds to criticize disabled people, that she's giving people false hope, etc. Again, you can check out her story directly.
It's got me thinking more about what it means to recover from stroke. A lot of times we can see improvements in our conditions with enough work, the right attitude, and time. Stroke is an interesting neurological injury because unlike many others, it doesn't have to get worse over time. Stroke is not degenerative.
So what does that mean to our identities as members of the disabled community?
Aging
In April, I technically turned 50. Well, that's what the calendar says. I've decided to continue to be 35, though.
But there is still value in acknowledging what the calendar says.
At 50, that means 80 is as close as 20. And 20 feels like it was just about 5 years ago. Each year feels faster, and I imagine the next 30 years will feel even faster than the past 30 years have. That's kind of mind-boggling.
It also feels like life up to this point has been about growing up and preparing to start an adult life. I guess I should think about actually starting thatat some point.
After all, according to the calendar, I've live probable a little less than a quarter of my life now.
Hack of the Week
A rolling laundry cart* is a surprisingly useful tool.
i was a little skeptical when The GF ordered one for our apartment, but I've learned to trust her judgement on this things (seriously, how did I live so many years without a hot water maker?).
Early on after stroke, I still used a cane and AFO indoors. My arm was in a sling. Moving the laundry bucket from the bedroom to the washing machine meant kicking it down the hall and trying not to fall in the process. It turns out that's just silly.
So we got a rolling cart like the ones you use in a laundromat. It's got a nice poll that makes it easy to grab, and it's got wheels that make it easy to drag around. Super simple and highly recommended, especially if you don't need stairs to access the laundry.
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Links
Where do we go from here?
- Subscribe to the new Strokecast newsletter launching this summer at http://Strokecast.com/News
- If you missed it, go back and listen to my conversation with Rachel about her daughter's stroke and the one-handed bra at http://Strokecast.com/BraEasy
- Follow Alex's story on Instagram at http://instagram.com/Wheelchain_Rapunzel
- Don't get best…get better.
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