What's the hardest thing about your life?
I've gotten this question, or variations of, several times over the last two years since Jeff's spinal cord injury.
How do I answer this accurately? How do I pick just one thing when nearly every aspect of our lives has become exponentially more difficult since Jeff's injury?
Some things are heartbreaking - like seeing your paralyzed husband long to get down on the floor and cuddle his six-year-old daughter.
Some things are frustratingly tricky - like navigating the health care system for things like medications and medical supplies. And explaining your symptoms to a doctor who knows nothing about a spinal cord injury.
And some things are just downright exhausting - like the days where one thing after another crops up with Jeff's health and I can't leave his side - when I can't figure out how to make him comfortable, he is in unendurable pain, and he just wants to be left alone. But he can't be left alone. Ever. The cycle is brutally exhausting.
When people have asked this question, my answer is usually concise and abbreviated. Afterall, no one truly wants to hear the long, drawn out sob story of your life when they've either just met you or have come over for a quick visit.
But this venue is different. This is my blog - where I can elaborate on stuff like this.
So I've narrowed it down to three things - the hard stuff - about this life. These three are from my point of view, as a spousal caregiver. While I know these things would also make Jeff's list of hard stuff about this life, I also know that his list would include some very different items.
1. The Time Trap
I recently read an article by Dan Griffin, a quadriplegic who details the all-too-familiar, time-consuming reality of living with a spinal cord injury. He paints such an accurate picture of the time involved in managing the secondary conditions that result from paralysis.
There's so many things that this injury has robbed us of. But Time is a really big one.
We have a mountain of tasks to do in any one single day to manage Jeff's condition. Things like breathing treatments, trach cleanings, catheter flushes, pills, transfers ... the list goes on. We are forced to stay on a strict schedule in order to fit everything in.
But that's just the planned stuff.
It's the unplanned stuff - the stuff that crops up out of nowhere - that really begins to suck the time away.
Days when Jeff's nose is stuffed. Out comes the nosespray. And the tissues. There's lots of nose wiping on these days because Jeff doesn't have the diaphragm strength to actually blow his nose.
Or when his blood pressure dumps. What's causing this? Or when his blood pressure sky rockets. Hurry - figure it out and get it back down!
Or when a red spot crops up on his skin. Get the wound care supplies out. Time to get pressure off that spot and start constant monitoring.
Or when his head itches - non stop. Or his eyes water - constantly. Or when he's uncomfortable in his chair, and no amount of adjusting seems to prevent him from being crooked.
Or when all of this happens on the same day. (And it has).
It's days like this that can suck the life out of you. When you feel like you've accomplished nothing yet done so much. When you feel guilty that you haven't been able to give much time to your daughter because all of your time and energy have been used up tending to your injured spouse. When you feel more like a nurse than a wife. When "free time" seems more like a myth than an attainable reality.
It's days like this - where that valuable commodity of time is hungrily consumed by SCI - that are hard.
2. Putting on a Happy Face
Friends of ours, even strangers who we've never met in person but who know our story, have told me many times over how they are inspired by how positive we remain in the face of this life changing turn of events. I truly appreciate and value this feedback because, to be honest, maintaining a consistently positive outlook is harder than it looks.
I should clarify what I mean by that...
I am a positive person by nature. I don't like a dark, looming cloud of negativity hanging over me.
But sometimes this life throws a punch that knocks me down hard. It's the getting back up that's difficult.
Most of this time this happens to me when I'm faced with something that is out of my control.
A few weeks ago, I was on a quest from hell to track down pain pills for Jeff. Since we recently changed insurance carriers, we have to learn and play by some new rules. Jeff's most powerful pain pill isn't allowed through our new insurance until he tries alternatives. So with a prescription in hand for one of these alternatives, I went to three different pharmacies only to be told by each one that they "do not have the medication - it will take over a week to get it in stock. Oh, and by the way, did you know this medication isn't covered by your insurance? That'll be $350."
Three different people at three separate pharmacies told me this. We were being forced by the insurance to try an alternative medication, but this alternative isn't covered? Something is wrong here.
And that's when I snapped. I was driving home from the third pharmacy, tears streaming down my face, my lungs heaving and burning from screaming in the privacy bubble of my van. My husband, who had already been through withdrawals from having run out of his pain medication, was waiting at home for me to bring him some relief. And I had nothing.
I felt so defeated.
I was trying, but I wasn't getting anywhere.
At that moment, I just wanted to keep on driving. Drive past our house, past the frustrations. Drive away from this life.
But I didn't. I pulled in the driveway, tried to hide my tears from my mom and daughter behind my sunglasses, and went into the bedroom with Jeff where I completely broke down.
And he picked me back up. My paralyzed husband talked me through my hysteria, and brought me back around so I could go back out there and keep fighting.
So that's what I did. And eventually this medication fiasco was ironed out. But not without a reminder of how much resolve is required to push through impossibly frustrating situations.
It's scenarios like this where it's hard to smile in the face of a bully that just keeps pushing you down.
3. The Foreverness
Forever. For all future time. For always.
This is definitely one of the hardest things to come to terms with about this life.
My husband is paralyzed. Forever.
And there's no amount of therapy, no amount of willpower that's going to change that. It will take a breakthrough act of science to reverse my husband's paralysis. While science is progressing in the right direction, the truth is, it's just not there yet. And the cure might not come in Jeff's lifetime. So with an injury like Jeff's, we have to plan on living with it. Not just for now. For always.
Because we're not on the long road to recovery.
We're on the neverending road of paralysis.
A road that just keeps stretching out into the distance. No turn offs. No rest stops. No U-Turns allowed. All we can do is keep moving forward. We can glimpse back in the rearview mirror at a life we left behind, but we can never go back.
We must re-evaluate everything in our life. Create new routines. Find new ways of doing things that bring us joy.
We must ask questions - hard questions - that we don't yet have the answer to. How are we going to do this, every day, for the rest of our lives?
We must make new plans. Gone are the old plans of working hard at our day jobs in order to one day travel. Or retire in comfort. Our work is different now. Our travel is simply making it another day on this harrowing journey. Our retirement is resting our weary bodies and minds at the end of the day just so we can wake up and do it all again tomorrow. Forever. For always.
And traveling this ever stretching road is hard.
But every once in a while, the bumps in the road smooth out, and the sun peeks through the stormy skies, and we are met with a beautiful rainbow. It's times like that when we can smile. Thankful that no matter how rough this road gets, we have each other to travel it with.
And there's no one I'd rather be on this journey with than these two.