Monday, July 27, 2015

The Accident

This is the story of Jeff's accident. The day our life changed forever.

The events of this day are still so clear to me. It is my hope that by writing them down, perhaps I won't have to relive them in my mind so often.

* * * * *

July 27, 2013

We had planned this day for months.

Four families decided this would be the day we would finally get together for some summer fun. We chose Huntington Beach as the location - a central meeting spot for our group who was scattered about Southern California. The beach was only one mile from our home.

We met in the late morning in the parking lot at Pacific Coast Highway (PCH) and Newland. The kids ran around excitedly as the grown ups unloaded and carted coolers, umbrellas, strollers, blankets, and sand toys down to the beach. If you've never been to Huntington Beach, the trek down to the water means crossing a huge, sprawling area of sand. We were huffing and puffing as we reached our destination. We found a great spot of open sand large enough for our party - just to the left of the lifeguard stand.

Our first couple hours at the beach were like any other. We shared stories with friends. We swam in the chilly ocean. We watched as our kids frolicked in the surf.

I snapped lots of photos that day. Of Evie and her friends on the sand. Of our group as we relaxed in the sun. Of Jeff and Evie playing on the shore.

Just after lunch, I told Jeff I was taking a walk to the restroom. We gave each other a thumbs up and a nod - what we would usually do when one parent was going to be absent from the scene for a while. A way to let one another know who was on "watchful eye" duty for Evie.

As he held up his arm with the thumbs up gesture at me, I had no idea that that would be the last time I would see my husband as an able-bodied man.

I lumbered through the sand to the restroom, then back again, noting how difficult it was to walk in the sand. I felt like I was taking gigantic steps, yet making very little progress. But I didn't mind the alone time with the warm salty air blowing my hair around my face.

I finally made it back to our blankets and wanted a cold drink from my long walk.

I opened the cooler to see what I could find.

And that's when it happened.

Everything slowed down.

As I was looking in the cooler, I heard voices. They seemed far off at first. They were calling for the lifeguard. I began to pull my gaze away from the cooler and onto the scene. I realized that I recognized the voices. They belonged to our friends. And they were coming more urgently now. With panic.

I snapped my head up to face the ocean. The shouts told me that something was very wrong, and the instant churning of my stomach told me that whatever was wrong had something to do with my family. My parental instinct took over, and I frantically scanned the area for Evie. My sweet little four-year-old who was no match for the power of the ocean.

And there she was. Standing only about ten feet in front of me. Facing away from me, staring out at the ocean. The wave of relief that washed over me at seeing my child safe on the sand was a feeling I cannot adequately describe, but one I will never forget.

But as I was experiencing the end of that wave of relief, my gaze focused on what everyone else was looking at. Out in the shallows of the water, our friend Chris was doing the unthinkable.

He was pulling someone out of the ocean.

The victim's arm was hanging at his side. Limp. Lifeless.

And then I saw it. The dark hair. The camo swim shorts. The familiar profile...


The voice that heaved out of my body was not my own.

Suddenly everything was happening fast. I clawed my way off the blanket and fell onto the sand. My body couldn't move as fast as my mind wanted it to. I bolted past Evie as she stood like a statue, continuing to watch the scene unfold.

I thought my husband had drowned - my husband who had lived his entire life in Southern California - who had swam in the ocean a million times - was lying lifeless on the shore.

I thought the ocean had taken him.

I ran at him, prepared to administer CPR to try to bring him back.

But as I got closer to him and the scene gathering around him, I heard something I didn't expect - his voice.

He was alive. Relief, again.

But something was still very wrong.

The first words I heard him say as I skidded to his side were, "I'm Done." And in those two words, I knew that our world had just changed. That something irreversible had just happened. Because I knew what he meant. The way he emphasized the word "Done" had a heartbreaking finality to it.

There was no use hiding my panic as I hovered over him. I kept trying to tell him he was okay - that he was going to be okay - over and over - and I could hear my voice rising in a pitch of terror as my trembling hands were holding on to his freezing, limp body.

He locked eyes with me and said in a voice filled with panic and sadness, "Kristen, I'm so sorry. I'm so sorry I ruined our life."

In that moment, I felt like it was just me and him there on that beach. Experiencing a shared moment where our life as a couple - as a family - shifted in such a drastic way that we would never be able to put it back the same way again.

But it wasn't just us. People were gathered around us now. Chris was still at Jeff's side, talking to him in a calm voice. Chris' presence was comforting. He was keeping it together and that helped me keep it together. (I later learned that moments after the accident when Jeff was lying face down in shallow water, that Chris rolled Jeff over so he could breathe - thus saving my husband's life). There were also two strangers, a man and a woman, who were trying to help us move Jeff out of the water. The woman was very concerned about stabilizing Jeff's neck and not moving him any more than we had to. It turned out she was a nurse.

But the waves. My god, the relentless waves just kept coming - washing over Jeff, submerging his entire body, wanting to pull him back into the ocean. Keeping his body stable was nearly impossible, even with four adults trying their best. His limbs were flailing in all directions. Wave after wave kept coming. His breathing was labored, and he was gasping for air. He would inhale and swallow sea water with each wave. I remember thinking that he really was going to drown. I tried blocking the waves with my body so that they wouldn't wash over him. Finally I began timing the waves, and when one would come, I would pinch his nose with my fingers and cover his mouth with my hand.

At last the paramedics arrived - or maybe it was just more lifeguards. Whoever it was got Jeff onto a board, put his neck in a collar, and finally removed him from the shore.

Jeff was loaded into the back of a pick up truck and first responders began taking his vitals and poking him all over his body asking with each touch, "Can you feel this? Can you feel this?"

Another worker pulled me aside and began asking all kinds of questions. How tall is your husband? How much does he weigh? Address, phone number, drivers' license number, social security number. I did my best to answer the questions, but I was keeping an ear out for what was going on with Jeff. The "Can you feel this?" questions kept coming. Finally Jeff's hoarse, weak voice called out, "I can't f***ing feel anything. Get me to the hospital!"

With my questioning done for now, I turned my attention to our belongings. Our friends had already begun packing up everything, and Evie was safe and sound under their care. I started fumbling with my backpack, and numbly began wadding up our blanket into the wagon. Our friends gathered around me and told me that someone should drive Evie to the hospital so I could ride in the ambulance with Jeff. I stubbornly refused, saying I was fine to drive Evie. I wanted to be with her. To protect my precious girl from all of the chaos and scary uncertainty happening around us.

I was in complete shock.

The truck with Jeff in it began slowly moving across the sand to the ambulance that was now waiting in the parking lot. With my backpack on, random clothes and towels thrown over one arm, I grabbed Evie's hand and told her that we needed to get to the car quickly. I looked down into her bright eyes as she looked up into mine, and I told her, "Baby, we have to run."

And holding hands, we both began running along the sprawling scape of sand. It felt like we were crossing the desert. But we didn't stop. Our friend Ryan ran along side us pulling our wagon with the rest of our belongings.

We arrived at the car and began throwing everything in the back. I sat Evie in her carseat, and pulled out my cell phone from my backpack. First I called my dad, knowing he would be close by. He was on his bike riding to the beach, and luckily he heard his phone ring and answered. He immediately turned around to head back home and await my next call once we knew what hospital Jeff was going to. I then called my mom who was three thousand miles away visiting family. She instantly knew something was wrong from the sound of my voice. She began asking question after question, none of which I had answers to yet. I told her in a panicked, frustrated voice that I would call her back when I knew more.

I stood next to my car with Evie sitting quietly in the backseat. While too young to fully comprehend the situation in its entirety, she most definitely understood that something bad had happened. That Daddy was hurt and Mama was worried. I didn't want to leave her. But I didn't know where Jeff was at that point, and it was making me even more anxious.

Just then, Chad, Jeff's best friend, who had witnessed everything and taken part in the rescue effort, arrived at my car and told me, "Give me your keys. I'm driving Evie to the hospital. You ride with Jeff in the ambulance."

It was exactly what I needed - someone to take charge and tell me what to do. Because at that moment, all I wanted was to split myself in half so I could be with both my injured husband and my bewildered daughter.

So with the decision made, I kissed Evie goodbye, grabbed my backpack, and ran across the parking lot to the waiting ambulance.

Jeff had just been loaded inside, and I made my way to the back and tried to climb in with him. The paramedics told me I needed to ride up front with the driver. So I shouted to Jeff that I was here, and climbed in the front. There was lots of noise in the ambulance. The driver was communicating on the radio. The paramedics in the back where working on Jeff, dictating vitals and other necessary information to one another. Jeff hoarsely kept saying, "My neck hurts. I can't breathe." It was chaos. But it was controlled chaos. The paramedics worked quickly and professionally. I remember hearing one say that Jeff seemed to have sensation down to his nipples. And even then, not knowing a thing about spinal cord injuries or paralysis, I remember thinking, Does that mean he'll be able to move his arms? Because he would still be able to do so much if he could move his arms.

When the driver was done on the radio, and the paramedics in the back were ready, we began to creep our way out of the parking lot. The driver explained to me - slowly and clearly - that we were going to drive carefully because they wanted to keep Jeff as stable as possible. And that we wouldn't be going to the nearest hospital. Instead, we would be going to one fifteen miles away that was better equipped to deal with Jeff's specific trauma. I nodded my understanding at what he was saying. My whole body was tense and I had a death grip on the arm rests. I could hear Jeff's faint voice coming from the back repeating how he was in horrendous pain and couldn't breathe. I turned and told him in a strong but shaking voice that I was with him and that he was going to be okay. I had no idea if he could hear me.

We finally made it to the end of the parking lot, at the light where we would pull out onto PCH. The driver slowed down to check for traffic, and just before we took off, he looked at me and said, "We're gonna go lights and sirens." I gave him fast, tiny nods, acknowledging that I understood what this meant.

And with lights flashing and sirens blaring, Jeff and I began our journey down a path to a life we never imagined possible.

The last picture of Jeff standing, 
taken approximately one hour before his injury.
We now have this photo framed in our home.

July 27, 2013 - the day our life changed forever.

From here onward, it is our job to do the best we can with this new life we've got.

It is not the strongest of the species that survives.
Nor the most intelligent that survives.
It is the one that is most adaptable to change.
-attributed to Charles Darwin

Saturday, July 18, 2015

The Hard Stuff

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.

Very wrong.

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.