Captain’s Log: Day Ten
As many of you know my husband, Jason, has been disabled for twenty-two years. And by disabled, I mean very much so.
In short, he was struck with a brain tumor hemorrhage that left him for dead, stripping him of all of his faculties…eating, drinking, breathing, speaking, seeing, moving… all gone in the matter of seconds.
A fate none of us were prepared for. A fate that changed the course of my family’s lives forever. He was only twenty-six years old and I, twenty-seven.
This was not a life we newlyweds were prepared for.
Is anyone?
While he slowly gained some of his faculties back, sadly, about ten years later, after his first disabling event, he was hit with Multiple Sclerosis on top of it all, disabling him even further.
I remember how hard it was, the day he got his diagnosis. I couldn’t believe after all he had been through for a decade, after all *we* had, that this was our new reality.
Our eldest had just turned seven and our youngest was around the age of five. My hands were more than full and yet here I was, blessed with taking on more.
I had already been a caregiver more than a wife. A single mom more than a co-parent. The breadwinner without shared responsibility.
The emotional and mental stability of my children and family fell heavily on me. And twenty-two years later, it still does today.
Twenty-two years.
Wow.
And counting.
And yet, here I am, looking at other families caring for loved ones who have disabilities and I think, “I can’t even begin to imagjne what that’s like.” even though it’s quite literally me.
I look back at Jason and all he’s been through and ask, “How?”
How on earth did he make it this far? How is he making it through repeated relapses, 911 calls, and bi-annual ER visits? How is he surviving all of the falls, infections and hospital stays?
But most importantly, how is he doing it all with a smile on his face?
His case manager at the hospital said to us the other day, “I can tell you both have very healthy coping skills. It shows.”
This comment came at a time when my patience was surely being tested. At a time when even though my mind keeps telling me, “Things are okay. You got this!” my body is telling me otherwise. A time when I’m thinking “I’m too old for this. How are we going to make it?”
And yet, here I am. Here we are. Jason, my kids, and I pushing each other through another day.
I look at Jason and I don’t know how he does it. How he continues to get through each setback, each day. How his disease continues to take away and yet his spirituality grows. How a man with so much suffering has so little complaints.
And even though I question these things, I know…it’s through patience and faith.
Last night, he summed the heart of Ramadan and life up beautifully while on the phone with us from his hospital bed.
“It’s not what you give up, it’s what you gain.”, he said.
Very quickly things were put into perspective.
It’s not the food we stop eating. It’s our gratitude that grows.
It’s not the water we stop drinking. It’s our awareness that develops.
It’s not the energry we sacrifice. It’s our spirituality that thrives.
Most of us are far more fortunate than we realize. We will all have our struggles. If not now, then soon. We will each be put to the test.
Our patience.
Our emotions.
Our physical selves.
Tribulations for many are yet to come. And while my family and I have been through some of our own, I’m aware that we are blessed for how things have gone.
While Jason may not have been able to contribute to our family in the normative sense, he most certainly does in other ways.
“It’s not what you give up, it’s what you gain.”
And through all this, we’ve gained a lot.
