"Sometimes I can't believe my husband is paralyzed. 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."
Kristen, wife and caregiver of a ventilator-dependent quadriplegic, and her husband have stayed strong together to weather the storm that came with Jeff's paralysis after his injury at the beach in 2013.
"Our old life seems like a fuzzy dream at this point," she says. Kristen, Jeff and their young daughter Evie have taken everything as it's come. They've found ways to adapt to their new normal and redefine their lives.
"We've managed to emerge from the ashes of a former life and begin our journey on this new one."
However, despite how well her family is doing with their new circumstances, it doesn't mean they don't face their fair share of exhaustion and anxiety. Kristen has found only one word that sums up their experience with spinal cord injury: relentless.
"It's a life in which we can never let down our guards," she explains. "We have to pay extra close attention. Always." They have had to develop new skills and new awareness in order to avoid potentially serious consequences for Jeff. It requires an incredible attention to detail and a remarkable amount of patience.
Kristen and her family don't get a break, like so many other families facing spinal cord injury or other disabilities, nor can they take a vacation from it. "Because tomorrow, when we wake up, my husband will still be paralyzed," she says. "That's some seriously heavy stuff to deal with. Difficult to comprehend. Almost impossible, really."
Despite the overwhelming presence of paralysis in their lives, Kristen still finds moments where if even just for a fraction of a second, she forgets that Jeff is paralyzed. "'Forget' probably isn't the right word," she writes. "It's almost like I experience a time shift - a glitch in the matrix."
She recalls her most recent matrix glitch one evening when Jeff wasn't feeling well. Kristen got him settled in to rest and went back to her evening before checking 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," she explains. "For a split second I thought to myself Poor guy. He's had a long day at work and just wants to rest."
That one single thought was a blast from the past and in a split second, reality came back, remembering the current situation of their lives. "It took less than a second for my brain to process all this," she explains. "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."
It is often painful to count all the things that you can no longer do after a spinal cord injury or another disability. It can be extra difficult as you watch others do them easily around you. "I hate that our independence has been stripped away by this injury," Kristen explains. "That we have to rely on others for so much in our lives." She writes candidly about the challenges of their relentless life, but she does not let it defeat them.
"What can we do? How can we get through this?" she asks. "We can be just as relentless in our efforts to live. To push forward. To keep going...It's hard. So very hard. But not impossible."
Share this post with someone who is feeling overwhelmed, so they remember they are not alone.