In seven months, I filled up three notebooks with questions, concerns, and information I would need to absorb to move us forward in our new life.
I've since filled up more notebooks, but not at the same pace as those first three.
And I've kept them all.
I recently revisited my first notebook because I'm working on a project with AbleThrive to help people going though the first stages of a spinal cord injury. I thought my notes might be helpful as a reminder of what I didn't know but needed to know back when all of this was new.
As I leafed through that gray, spiral bound notebook, I was overwhelmed by the sheer volume of information contained inside. And now, almost 5 years out, I can look at that time from a bit of an outsider's perspective. And for the first time, I can understand the question people often ask: "How did you do it?" Because that was the first question I asked when I looked over those notes.
My god, how did I do this?
Imagine the following scenario: you have three boxes of puzzles in front of you. Your job is to put those three puzzles together. But instead of working them one by one, the contents of all three are dumped into one big pile in front of you, with all of the puzzle pieces mingling together. The boxes are then discarded, so you have no reference of the actual pictures you're putting together - just a vague idea.
Ready, go.
That's what the first year of Jeff's injury felt like.
And that's also what my notebook looked like.
For it wasn't just filled with questions about Jeff's condition, or medications and equipment he would need for the rest of his life. It also contained to-do list after to-do list of things I needed to address in order to keep our life moving forward.
Things like:
- contacting my work and setting up a leave of absence
- steps for an address change (that list alone is long, and we moved twice before Jeff even came home from rehab)
- drawing up legal documents like a power of attorney so I could sign on behalf of Jeff
- setting up a meeting with Jeff's former employer to talk to his bosses and clean out his desk
- making sense of government programs available and filling out applications for disability services
- contacting my insurance agency for information on how to add my now disabled husband to my coverage after his Qualifying Event
- ways on getting rid of Jeff's car he would no longer drive, and how we were going to do this when only his name was on the lease and he couldn't sign paperwork
- setting up meetings with doctors who needed to complete paperwork in order to put things like long term disability into place
The list goes on and on.
Then of course there WERE the medical questions and notes:
- what kind of wheelchair would Jeff come home with?
- what supplies and equipment do we need and when can we expect them to arrive at our house?
- what do all the numbers on the ventilator mean?
- what kind of vehicle would we need?
- and endless notes on things like skin maintenance, autonomic dysreflexia, bathing equipment, proper mattresses, etc.
There's even an entry - perhaps an early glimpse of the blog I would eventually start - about my concerns at my ability to get all of this done:
- I really will do everything I can to keep my husband comfortable and positive, make sure he is making the best progress he can, and ensure that our family stays intact. How I am going to achieve all of this, I have no idea.
So the question - how did I do this - is a valid one.
And having lived it, I suppose I have the answer, though it may not be as specific as one would like:
I just did.
Every day, I did. I chipped away at each list every day. Some days I was able to cross off whole items. And sometimes items would need to be transferred to a new to-do list. And when I would hit a wall, I would find a new way to get over it.
I just did.
And I guess in many ways, I still do. But nothing compares to that first year. No other year we've lived with Jeff's injury has been like that first one. So many questions. So much chaos.
So many puzzle pieces.
And that's why this project I'll soon start with helping newly injured individuals and their families navigate the beginnings of life with a spinal cord injury is so important to me.
Because I've done it.
We've done it.
We meticulously put the pieces into place. And now our puzzles look more like pictures than piles.
They're not finished by any means. And they're far from museum-quality works of art. Some pieces are held together by frustration, trial and error, and true grit. Others, while not necessarily the best fit, are wedged into place, and work just fine.
Getting through that first year is something I never want to experience again. Yet it was that very experience that helped shaped the way we handle obstacles today - helped us realize that while our life may have been shattered, it was possible to put the pieces back together again.
One by one.
Little by little.
