Sometimes I can’t believe my husband is paralyzed.
Most of the time I can. I’ve gotten fairly used to this life in the relatively short amount of time we’ve lived it. How we have to expect the unexpected. How we can’t just hop in the car on a whim anymore.
Our old life seems like a fuzzy dream at this point.
I think it’s fair to say that we are handling things well. We’ve managed to emerge from the ashes of a former life and begin our journey on this new one. And I think most people we encounter who are interested in our story see us and are encouraged that we’re doing so well.
And we are.
But underneath the smiles, the perseverance, and the positive attitudes is a layer of pure exhaustion interspersed with anxiety.
I’ve been struggling to find the right word to describe this new SCI-way-of-life, and the best one I can come up with is
It’s a life in which we can never let down our guards. We have to pay extra close attention. Always.
Just yesterday, as I was tending to Jeff, I was pulling down his shirt and noticed faint red marks on his stomach. I checked under his collar, and sure enough the rash was creeping up his neck. A sign of rising blood pressure. After sleuthing about, we discovered his catheter was partially clogged. And probably had been for several hours. Slowly, persistently raising his blood pressure.
We caught it in time to avoid a serious complication.
And just like that, our morning routine was derailed with an unexpected issue.
We don’t ever get a break.
We can’t ever take a vacation from this injury.
SCI has taken up residence in our home – our lives – and it’s here to stay.
Because tomorrow, when we wake up, my husband will still be paralyzed. Tomorrow, the next day, and every day for the rest of his life.
That’s some seriously heavy stuff to deal with. Difficult to comprehend. Almost impossible, really.
Because every once in a while – just for a fraction of a second – I forget that he’s paralyzed.
“Forget” probably isn’t the right word. It’s almost like I experience a time shift – a glitch in the matrix.
The last time this happened, it was early evening and Jeff wasn’t feeling well. He was in bed, cold, and feeling lethargic, probably beginning the battle with yet another UTI. I tucked the blanket around him, up under his chin, and adjusted the fuzzy Charger beanie on his head. He smiled a little smile that told me he was relatively comfortable and just wanted to rest.
I checked on him a little later. He was in and out of dozing, and when he saw me, he gave me, again, a tired little smile. For a split second I thought to myself Poor guy. He’s had a long day at work and just wants to rest.
BAM – reality hit me in the face.
Wait – he doesn’t work anymore. He might not ever work again. He’s paralyzed from the neck down. He can’t move his body. He’s on a ventilator. Oh my god.
It took less than a second for my brain to process all this. I smiled back at Jeff and touched his cheek. I didn’t say anything. I just turned around and went back to what I was doing. But my heart was a little heavier. And my stomach was recovering from the flip it’d just done.
I wonder if this will always happen – these fleeting moments of thinking you’re living the life you used to live only to be jolted back to reality a moment later.
I imagine it always will.
Because I will always have to feed my husband. Always have to brush his teeth. Scratch his itches, clip his fingernails, and wipe the sleep out of his crusty eyes.
He will always have to view the road from the back seat as I drive us where we need to go.
I list these things not only to vent them off my chest, but to share the heartbreaking reality that my husband can no longer do these things for himself.
Simple things that other people do so easily every day. Things we never think twice about – that we take for absolute granted. Not that we aren’t thankful that we can do them but because there’s too many of these things we do in one day, that counting them all would be next to impossible.
I hate that our independence has been stripped away by this injury. That we have to rely on others for so much in our lives. Jeff especially. Before the injury, we were a very independent family. And we mostly kept to ourselves. Not that we didn’t have friends or see family. But we liked being just us three – and doing things around the house together.
Now our house is filled with “other” people. People we’re grateful for, no doubt. But still … another reminder of a life long gone.
* * *
And so this relentless life lives up to its name. It just keeps coming.
Like the ocean.
The goddam ocean that I can no longer look at with any kind of peace because it was there that our life was swallowed up by the waves, slammed into the sand, and spit up onto the shore.
What can we do? How can we get through this?
We can be just as relentless in our efforts to live. To push forward. To keep going.
God, it’s hard.
So very hard.
But not impossible.