Today marks three years since Jeff's injury.
I make it a point to write either on or near this date, mainly to have a chronicle of where we are - where I am - on this journey.
Year one was mostly chaotic. It was about making heads or tails of an impossibly difficult situation.
Year two was much about acceptance. Learning how to live a brand new life, and making adjustments in order to make the best of things.
And year three has been about getting settled.
Years one and two passed with about the speed I expected. Once we hit the marks, it felt like one and two years' time had passed, respectively.
But year three has been different.
It feels more like year ten.
I don't mean that in a bad way necessarily. It's just that so much has happened this year. But despite a couple hospital stays and a pretty nasty bout with pneumonia, most of this long year has been good. We've settled into our new home in a new city and a new state quite well. Evie has thrived in school and has made new friends.
We've developed a routine that works for us.
And it's that routine, the thing I love, the thing that keeps this whole crazy train from falling off the tracks, that demanding checklist that waits impatiently for me every morning to start ticking off items ... it's that routine that has been weighing heavy on me lately.
It's also that same routine that I recently got to see in a manner quite unexpected.
A few weeks ago, a friend who lives a nearly identical life to mine shared a music video on her Facebook timeline. She wrote how a friend of hers shared it with her - how it reminded him of what her and her husband's routine must be like. Of the video my friend wrote, "What a powerful little four minutes."
I don't follow music much, so I wasn't surprised that it was a song I didn't recognize from an artist I'd never heard of. But I was intrigued by my friend's comment, so I clicked the play button on the video.
And there, on the screen, I began to see my daily caregiver routine unfold. A woman was taking care of her quadriplegic husband. She was doing things like getting him out of bed, bathing him, loading him into the car, and feeding him. You could see both the love and the exhaustion mixed together on her face.
And these were the words ...
And I'll rise up
I'll rise like the day
I'll rise up
I'll rise unafraid
I'll rise up
And I'll do it a thousand times again
I'll rise like the day
I'll rise up
I'll rise unafraid
I'll rise up
And I'll do it a thousand times again
And I'll rise up
High like the waves
I'll rise up
In spite of the ache
I'll rise up
And I'll do it a thousand times again
For you
I watched that video in teary silence. And those words rang in my ears for days. Each day as I would wake up and face my daunting routine, I was encouraged by those words to rise up ... unafraid; rise up ... in spite of the ache. And how I will do it a thousand times again ... for the man I love.
Fast forward to yesterday, the day before the anniversary of Jeff's injury. After dinner, I found myself with both a little time and energy, and I knew there was some organizing that needed to be done in the garage. So I left Jeff in the living room parked in his chair watching the Democratic National Convention, and I headed to the garage in the early evening heat. I rearranged boxes, grunted as I lifted them onto shelves, and wiped the sweat from my face.
I took a break and went back into the house. And as I was walking over to Jeff, I heard familiar words coming from a beautiful woman performing on the convention stage:
And I'll rise up
I'll rise like the day
I'll rise up
I'll rise unafraid ...
I'll rise like the day
I'll rise up
I'll rise unafraid ...
My mouth dropped open. "This song!" I said, my voice cracking with emotion.
"What about it?" asked Jeff. I hadn't even mentioned anything to him.
So I told him briefly about the video. How I was so moved to see our life - our routine - portrayed in it.
We watched the performance in silence.
And then, as Andra Day began singing the last part of her powerful song on that stage, I heard, for the first time, the change in the lyrics.
It was no longer I. Now it was We.
And we'll rise up
High like the waves
We'll rise up
In spite of the ache
We'll rise up
And we'll do it a thousand times again
For you
High like the waves
We'll rise up
In spite of the ache
We'll rise up
And we'll do it a thousand times again
For you
It was like everything clicked into place. On the eve of Jeff's injury anniversary, hearing this song performed so eloquently, I was reminded that this is OUR routine, not just mine. How we rise and face each day together, never separately - no matter how tired we are, or how much our bodies may ache.
And how we will do it a thousand times again. For each other. Always.
As much as I would love to erase July 27th from the calendar, this day is now a part of us. Part of our history.
It was the start of our new life, and it will forever be a milestone marker on our journey.
-xoxoxo-
And if you'd like to take a look at Andra Day's video for "Rise Up," featuring a glimpse into the routine of a quadriplegic and his caregiver spouse, here it is via YouTube:
For any of your readers looking for said video, here it is:
ReplyDeletehttps://www.youtube.com/watch?v=lwgr_IMeEgA
I wonder whether the actors were real? It was certainly an odd chair they had him in. Even so, I agree a beautiful video.
Wondering about your situation in the US. Do you get government support for care, so that you can get domestic care workers to help get your husband up and moving in the morning?
oops - missed that you had already linked it.
DeleteHello Shane. I wondered the same thing about the actors - and I also had the same thought about the chair. It looks almost exactly like the loaner chair Jeff had when he first came home from the hospital while his custom chair was being built. Either way, I am willing to overlook some of the inaccurate details for the bigger picture of the relationship that was portrayed between the couple. I am curious as to how the concept of the video came together ... I'll have to see if I can find info on that.
DeleteAs for government support for care here in the US, the only program that offers caregiver services is a welfare program which Jeff doesn't qualify for. Jeff is on a different program which provides some income based on his work history, but that program does not offer caregiving services. It's a very, very complicated system where often the best choice, as was the case with us, is to have family provide the care.
Kristen (and Jeff), this is one of your best posts ever. What a neat story. I've always commented on how I'm so proud of how you (Kristen) are handling your "new dawn", but I never realized that I am just as proud of how Jeff is handling his "new dawn". You three are the joy of my life. Love ... Dad
ReplyDeleteThank you, Dad. We certainly don't do any of this alone, and your love and support have helped us in so many ways. We love you.
DeleteI sometimes forget how fortunate we are in Australia, and how backward America is in terms of its social supports. Every person in Australia who needs personal homecare support can access it through government funding. Certainly, I admire the love and support of your family.
ReplyDeleteIn terms of the video, while I certainly endorse its general message, disability advocates for good reason get really annoyed with the media's dealing with disability. Why is it so hard for the media to actually find a disabled person to play the part and so represent our lives as they actually are? And the answer is, because a person with a real disability doesn't look like the models used for in television and music videos. And there is also the problem of the media trading on disability for its own purposes (i.e. to make money). Certainly, I would feel much more inclined to believe the honesty of a song and video if it really did engage with people with disabilities– if we were able to represent ourselves – and maybe directed some funds to disabled support.