Yes, I've seen the stories about that new spinal treatment. Here's why I'm not interested
There’s too little certainty and too many unknown factors
It happens whenever there are news stories about a new treatment claiming to cure paralysis.
I get flooded with messages from distant relatives, or people I went to high school with but haven't seen in 10 years.
"OMG YOU TOTALLY NEED TO DO THIS."
I'm not saying other people shouldn't try whatever treatments they want to, but for me, there's too little certainty and too many unknown factors.
After 15 years in a wheelchair, I've gained the perspective that walking, in fact, does not equate happiness.
Using a wheelchair is the easy part
I'll never forget the metaphor used to explain to me how one would repair a spinal cord, even if I was a little high on morphine when I heard it.
I was 16, laying in a hospital bed with four large screws drilled into my skull to stabilize my spine.
"Imagine squeezing all of the toothpaste out of a tube. Now try and get that toothpaste back into the tube without changing its shape or structure. That's how fragile your spinal cord is."
Sounds impossible, right? Maybe. Or maybe the technology just hasn't been invented yet.
The thing no one tells you about having a spinal cord injury is that not walking is the easiest adjustment. You don't need to check your eyes. You read that right.
The human body and muscle memory are pretty adaptable. Using a wheelchair is the easy part.
The thing is, moving my leg or even walking (although it would be cool) wouldn't change the functional quality of my life. I'm already independent.- Miranda Biletski
First, there are societal stigmas. They could fill their own novel.
Every person with a disability has a few horror stories. Personally, I applied to more than 600 jobs before getting a part-time, entry-level position. Shout out to the YMCA of Saskatoon for giving me a shot when no one else would!
Another thing that doesn't often get talked about is the secondary health issues that come along with a spinal cord injury. Low blood pressure, autonomic dysreflexia, inability to regulate your body temperature, bowel and bladder problems, and pressure sores to name a few.
These are the really hard parts.
'There's a fine line between hope and false hope'
These secondary health issues are why I have no interest in an epidural stimulation implant or any other elective surgery of that nature. I know it's exciting to see someone moving their leg after an injury or walking while assisted, but the truth is we don't know what other unknown factors such treatments might present.
I've seen plenty of stories about possible "cures." When I was first injured it was stem cells, then embryonic stem cells, then there were the paralyzed rats learning to walk again.
Every few years there's a new procedure that makes a splash. Everyone is positive that this time, this procedure, this one is the cure. None have come to fruition.
Hope and optimism are vital, but there's a fine line between hope and false hope. I've seen far too many people unable to overcome the false hope and remain bitter and angry that they can't be "normal."
The thing is, moving my leg or even walking (although it would be cool) wouldn't change the functional quality of my life. I'm already independent. I'm already quite happy with my life. Gaining the ability to move a leg still wouldn't address those secondary health issues.
I'm not saying any of these potential treatments aren't amazing advancements in medicine, but if you can't guarantee me the ability to sweat so I don't overheat in our prairie summers, or control of my bowels or bladder, it's not worth the unknowns or cost at this point in my life.
There's no guarantee. I won't compromise for a maybe.
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