Shoved to Them
A few weeks back, I mentioned in a post about not going into the gory details about Ella with a stranger, opting instead to simply say “She had a spinal injury.” A lot of readers responded with “What? When was that diagnosed?” While I know I’ve alluded to it in the past, it’s possible that I haven’t explained it as well as I could have.
So, here goes:
Last year, Ella caught a cold virus (we suspect enterovirus d68) which somehow caused her to stop walking. After months of doctors and therapies, the consensus is to suspect Acute Flaccid Myelitis – spinal cord damage from the viral infection.
Her damage is very low (incomplete L3,L4,L5-S1 for those of you in the know) in a part of the spinal cord called the Cauda Equina. It’s like a ponytail of nerves that hangs down at the base of your spine. Damage in that part of the spine is notoriously difficult to see on MRIs or other tests and often has to be diagnosed by looking at where the damage is. Ella’s lines up perfectly with damage in that part of the spinal column.
So what we have as a diagnosis officially is “abnormal muscle movement with probable spinal damage L3, L4, L5-S1.” The only way to know for sure would be to go in surgically and look among the ponytail strands for the ones which are damaged, which would damage even more.
It’s complicated, and unsettling to not be able to point to a test and say “There! That’s the damage. That’s what everyone said wasn’t there.” What we can see is that her disabilities aline themselves perfectly with what her neurologist can only officially “suspect.”
When we meet new people and are asked what happened, we no longer drag out the whole tale. For a while, we had shorted it to “She caught a cold and 8 days later couldn’t stand,” but that required its own kind of explanation. Now we simply say “She has a spinal cord injury,” and let those six simple words sum up our whole last year.
Now that we have that long winded explanation out of the way, on to the fun stuff.
We’re going to California this weekend for a WCMX competition where our girl will be competing with the pros!
Almost a year since she first wheeled herself out onto the ramps, she’s become a fearless competitor and is making a name for herself in a sport that girls don’t often try. If you’d told us a year ago that this was where we’d be today, I don’t know that I’d have had the courage to believe you….but here we are!
Because we’ll be traveling, I’ll be hosting some guest bloggers here at Shoved to Them. I can’t wait for you to meet these amazing women!
Photo credits:
spine By Dr. Johannes Sobotta (Sobotta Atlas and Text-book of Human Anatomy 1909) [Public domain], via Wikimedia Commons
Ella at the park by Aldrin Dalere used with permision
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