Saturday, December 26, 2015

Holiday Reflections

We're still getting used to the combination of celebrating the holidays and living with a spinal cord injury. This is Jeff's second Christmas since his injury. (Well, technically it's his third, but the first one was spent in the hospital, so we don't officially count that one.)

The holidays are tricky enough on their own - but pile on a spinal cord injury that takes up a lot of your time in managing and wreaks havoc on your emotions ... oh! It's just a lot to deal with.

I've often described life with a spinal cord injury as a roller coaster ride. Some parts are smooth and calm, others whip you around unexpectedly. And sometimes it's downright terrifying. I think we experienced a little of all these during this holiday season.

This year - the day after Thanksgiving - I climbed on the ladder and got down all the Christmas boxes. I searched for and untangled what felt like miles of extension cords. I got an outdoor timer and ran said cords from the outlet by the front door to our front yard. I plugged in splitters and ran more extension cords. I put together our flimsy lighted reindeer (now held together with zip ties and foul words). I strategically placed an inflatable Santa and teddy bear in our yard and staked them down. I put net lights on a couple bushes.

I stood back and admired my work, and let the realization I knew was coming just happen.

This is all the stuff Jeff used to do. All this outdoor stuff with wires and plugs and lights and zip ties. It's all mine now. Transferred to me not because he no longer wanted it. But because he no longer could do it.

I don't mind doing it. It's just times like this that I really wish it still belonged to him.

Nonetheless, we survived the decorations and the Christmas spirit was fervently felt in our new home. One night, on a whim, Jeff said, "Let's go get Starbucks." It was just after dinner and I was feeling a little wiped out if I'm being honest. I looked at him with an expression that said, I really don't think I have the energy for this. But in the blink of an eye, Evie was standing next to me wearing her jacket, her boots, and a toothy grin. And Jeff was already bundled up (as usual), and was ready - and eager - to head out.

"Let's do it," I said, reluctantly picking myself up off the couch.

I backed out the van, Evie and I quickly got Jeff strapped down and secured in it, we then got ourselves buckled in, and we were off. We got holiday flavored drinks and gingerbread cookies with sweet icing from the drive-thru. Then we drove around our neighborhood and oohed and aahed over the lights. We came home and enjoyed our treats.

And we did it all spontaneously.

And it was easy.

(Those two things right there - spontaneity and ease - both happening at the same time is something anyone living with an SCI would deem a Christmas miracle. That's surely what it felt like to us.)

But a few days later, our Christmas spirit was challenged. It had been a long, funky day. Evie was sick - running a fever and just feeling like crap. Jeff was a little under the weather too, but his main symptom was grumpy. I was the nurse who would randomly and frequently stick the thermometer in my patients' ears and ask "How do you feel?" to which I got the following answers, "Not too good, Mama," and "Well, you keep telling me I have a fever, but I feel fine!"

By the time dinner rolled around, things were in a downward spiral. Normally, we all eat a meal as a family. Tonight was different. We were all eating whatever we wanted. The three of us were sitting at our dinner table, all in a row. Usually Evie sits across from me and Jeff, but with her lingering yuckies, she was stuck to my side like glue, wrapped in a blanket, and croaning (that's crying and moaning at the same time.) Her dinner was an orange Otterpop. I was feeding Jeff his equally unhealthy dinner and also trying to fuel my own body with the questionable combination of mac-n-cheese and wine.

From the right: "I'm not hungry. My belly hurts. Can I have another Otterpop?"

From the left: "Can you lean me back? Can you wipe my eyes? Can you put more salsa on my next bite?"

Ohmygod.

I was having a genuine "stuck in the middle" moment.

I broke down that night as I was putting Jeff to bed. I went on and on about feeling stuck in the middle - always the one asking everyone else how they're doing - always the one fixing things and getting things and doing things and handling things - never being asked if I'm okay or if I need anything. And with tears in my eyes, feeling ridiculous once all my feelings came pouring out, I apologized to my husband for not handling everything gracefully.

He looked at me and simply and calmly said, "It's okay." Because he, more than anyone else, understands how the stress of this life can consume you.

This funk lasted a couple more days and culminated on the night when everyone finally started feeling better. We were again just sitting down to dinner when Evie accidentally spilled Jeff's water all over the floor. She and I sprung into action with towels. She was trying her best to wipe up the puddles while I was furiously sopping it all up. Jeff backed up just out of  range of the water. After nearly throwing out my shoulder with the wiping, Jeff said, "That's probably good."

"No it's not," I snapped, my frustrations boiling furiously. "It's not dry. If I don't get it all dry, your tires are just going to make it worse." My mood was evident in my tone.

Evie tried to lighten the scene by being cute and funny. "We're all wiping up the floor. Everyone but Daddy. He never has to help clean the floor."

"Believe me, sweetheart" I said through gritted teeth. "Daddy would much rather be down on the floor helping us right now rather than be stuck in that chair."

My words and tone were harsh. But they were a true reflection of my feelings in that moment.

We wiped in silence for a few more seconds. Then Evie's small, quiet voice said, "I know what I want for Christmas ..." I stopped wiping, sat back on my heels, and looked right at her. I knew what was coming.

"I want Daddy to be able to move again," and on the word move, she threw up her arms and held them in the air while she smiled.

"I want that too, Babe." said Jeff quietly.

"It's what we all want, Sweetie," I chimed in, my voice back to normal. "But that's not how it works. That's not going to happen."

"I know," she said, and she went back to wiping.

And just like that, my pot having boiled over, my sweet daughter - and my brave husband - helped me clean up the mess and simply move on.

And after dinner, our evening took a pleasant turn. As I was cleaning up, I heard Evie ask Jeff, "Daddy - you wanna pull me around in the laundry basket?"

Without hesitation, Jeff said, "Heck yeah!" and he started giving instructions. He told Evie to get the basket and the bath mat, and asked me to take a time-out from cleaning up and get the orange tie down.

A week earlier, we'd discovered a way for Jeff and Evie to do something they had enjoyed doing before Jeff's injury. When Evie was smaller, Jeff would pull her around the house in a bucket, basket, empty box - anything he could find that she would fit into. He'd rig up a strap, and holding it in his strong hands, he would pull her along behind while he walked all over the house - even down a short flight of stairs in an old place we lived in. She would squeal with delight. They both loved it.

So tonight, Evie turned the bath mat upside down and placed the laundry basket on it. I secured the tie down around the back of Jeff's chair and onto the basket. Evie hopped in, Jeff adjusted the speed on his chair, pushed the controller forward with his chin, and they were off.

I finished the clean up then sat at the kitchen table and watched them have fun. Jeff would drive her into the bedroom, make a u-turn, then come down the hall, where he would make a tight turn around the corner in order for the basket to slide out to the side around the corner. Evie gave a little scream and they both laughed.

Their laughter filled me up and made the Christmas lights in our house sparkle a little brighter that night.

And so the roller coaster of this SCI life was back on the top again. Back to where there's a calm, and you feel happy, and a genuine smile crosses your face. We've hit some roughness since that night, but also had more smiles. It's truly been an up and down holiday season: tears and frustrations mixed with happiness and love.

Tomorrow the decorations will start coming down. I'll once again get out the ladder and do all the jobs that I inherited after my husband became paralyzed. And he'll watch me, wanting nothing more than to just do them himself.

Soon we'll say goodbye to 2015, and move on to 2016 where we'll enter the third year of this new life.

We hope it will be a good one. We know it'll have ups and downs like the others that have come before.

At least we've got a good grip on it now - and we're doing our best to hang on.










Saturday, November 21, 2015

A Few Words on Compassion vs. Pity




When your husband drives his wheelchair with his chin, you inevitably get a lot of stares when you're out in public.

When I tell people our story, I am typically met with furrowed brows, often deep concern, and usually looks on faces that say Oh my god; I am so sorry.

Sympathy is a part of our life. Plain and simple.

And that's okay.

Well, mostly okay. Because sympathy is one of those emotions that swings wide.

Here's what I mean.

When people tell me - tell my family - that they are so sorry this has happened to us, that they can't imagine the changes and hardships we've had to endure since my husband's paralysis, that's okay. Because that's compassion. And we've met a lot of compassionate people on this journey who have reminded us of the goodness and kindness that still exists in this often bleak world.

But when people look at us and they in turn begin to wilt like a neglected flower, their faces melting into a mask of frowns - or tell us bluntly that they wouldn't want to live if they had been injured like my husband - that's not okay. Because that's pity.

I'm not here to tell anyone how to think. People are certainly entitled to their own opinions.

But I am here to tell those people who think that our life is pitiful now that my husband is a quadriplegic - who think that his existence and our family's life plan is now meaningless because he is paralyzed from the neck down - that they couldn't be more wrong.

Yes our life is hard - infinitely harder than it used to be.

Yes our life is challenging - who's life isn't?

And yet through all the change, all the tears, and all the stress of flipping our once upside-down world right-side up again, we've discovered that this new life ...

... is still good.

And that's probably because we've worked hard to make it that way.

I remember having a conversation with a new friend shortly after Jeff had returned home after many months in the hospital following his injury. She is married to a ventilator-dependent quadriplegic, and she told me something that at the time I had a hard time understanding, but now makes perfect sense.

She told me to remember that we still have control of our life.

Back then, things were still wildly out of control. I felt we were on a tilt-o-whirl of doom and Life was the cruel ride operator jerking us around and laughing the whole time.

Only in the last several months - almost two and a half years after the injury - have I felt we're finally getting that control back.

We've made big changes in our life. We've moved to a new state. We've modified our home to make things more user friendly. We've established new routines. We've held on to old friends and have learned to communicate with them differently (for example, Jeff still has friends he used to game with on Xbox. Now he plays online chess with them instead). And we've made new friends and new allies in the disabled sector who are living the life we live.

We've done all this because we still have control.

Because we've had help and encouragement from compassionate people.

Because we don't allow pity to be a part of our life.

I was speaking with a neighbor a couple weeks ago when I went out to get the mail. She hadn't yet met Jeff, but she was aware of our situation (word travels fast when you're the only quad on the block). She asked if Jeff was able to use our pool. I told her he wasn't - that we mainly got a house with a pool for our daughter and other family and friends to use.

She further inquired that if we were to install a pool lift, would Jeff be able to go in the water then? I didn't mind the questions. Questions lead to answers, and answers lead to knowledge.

So I explained that because of the ventilator and various other holes and tubes in Jeff's body that getting in the pool was simply out of the question for him.

She looked as if my words had taken the wind right out of her sails. I thought she was going to cry - right there in the middle of the street. I almost felt as if I should comfort her somehow. It was a very bizarro world kind of moment - a near stranger on the verge of falling apart because MY husband is paralyzed and unable to get into a swimming pool.

"So then he can only be in the bed or in the chair?" she asked, in a way that sounded as if she'd just eaten something unappetizing. Her expression mirrored her tone.

It took me a moment to answer, but I eventually got out a "Yep" with a little nod.

I wasn't sad.

But I was rendered almost speechless over how grief-stricken she appeared to be. 

And in that moment, I realized that how she sees Jeff's wheelchair and how I see it are vastly different. 

She sees is as a bona fide electric chair - the one convicted criminals climb into right before they breathe their last breath. A true death sentence.

But I see it as life. Jeff's chair basically functions as his legs. It's how he gets around. It's how he dances with me to 80s music in the living room. It's how he sneaks up on Evie to scare her, even though most of the time she knows he's coming. But sometimes she doesn't, and in those times there's always startled screams and laughter that follows. It's how he gets into our van so that we can get out of the house and experience the world.

His chair is independence. And for someone with zero use of his limbs, his chair is an amazing alternative.

I get why our neighbor looked so bereft when she talked about the chair - I really do. Because I used to be on the other side, too. When Jeff first got into his hospital room at the rehab facility following his accident, parked directly in front of his bed was an empty wheelchair.

The room was silent. It was just me and him and the chair.

And the chair stared at us - at him - like it was the bull and he was the matador. A pissed off bull staring down a paralyzed matador.

"I do not want to drive that thing with my chin," he whispered to me.

"I know," I said quietly. "But you have to. That's why we're here."

And so he did. And he drove it with mad skills right from the beginning. And every day we hated it a little less.

And now the chair is just a part of him. Part of our family. Part of our life.

* * * * * 

You see, things don't have to be picture perfect to be beautiful.

Things don't have to be cut and dry to make sense.

I hate that my husband is paralyzed. But I don't hate our life.

And the stares ... oh the stares. They will always be there. The curious onlookers, the looky-loos, the honey-badger-don't-give-a-shit-open-mouth gawkers. They're just part of this package deal.

So stare if you must - I know it's not every day you see a handsome guy driving a wheelchair with his chin.

But stare to learn.

Not to judge.

If you look closely, Jeff's shirt says: 
Keep staring. I might do a trick!

Thursday, October 15, 2015

Every.Single.Day



Have you seen the Under Armour commercial featuring New England Patriots quarterback Tom Brady? The one where there's hundreds of him doing drills in militaristic fashion. Precise. Over and over. And he keeps repeating the phrase "Every Single Day" ending the commercial with the words, "No Matter What."

I suppose the point of the ad is to emphasize how hard work practiced over and over, every single day, no matter what obstacles you face, will produce something great.

I had seen the commercial a few times before. But last week it came on at a rather inopportune time. And, well, it just rubbed me the wrong way.

I was transferring Jeff from his bed into his wheelchair doing what I call the "bullseye transfer." It's one of two transfers I do every single day, and it's the trickier of the two. I'm going from a big target (the bed) to a small target (the chair), and in order to get it right, it requires a precision and efficiency that only experience can provide.

Some days the transfers go easy peasy.

Some days they are far from smooth.

Today was one of those days.

As I lowered Jeff into his chair, I began to struggle with getting the sling removed from behind him. I'd been having shoulder and arm pain for several days prior to this transfer, and that pain was only adding to my mounting frustration. I was leaning and holding Jeff's body forward with my right arm, and tugging at the sling with my left arm. Grunting and swearing the whole time.

Just then the Under Armour commercial came on. And out of my periphery I could see a hundred Tom Bradys doing drill after drill. Running. Throwing. Grunting. Sweating.

"Every Single Day" came Brady's gruff voice at the end. "No Matter What."

That's when I lost it.

I looked at the TV with exhaustion and frustration dripping from my being, and I snarled, "Are you f***ing kidding me right now Tom Brady? Every Single Day? Really??? THIS is Every Single Day. Every Single F***ing Day!"

I jerked the sling free with those last words, and I flung it limply over the side of Jeff's chair.

I leaned Jeff back and continued in silence with the transfer.

I felt terrible at the nastiness that welled up inside me and came pouring out all over this commercial that had the misfortune of airing during one of the tougher transfers.

But I didn't apologize.

Because "this" is paralysis.

"This" is frustration.

"This" is the time-consuming, pain-inducing transfer we perform every single day. Twice a day. No matter what.

"This" is our life that is now dictated by an irreversible, life-altering injury.

After I got Jeff settled into his chair, I was still fuming inside over the commercial and the now-vilified Tom Brady. I was chewing him out in my mind, thinking something along the lines of, I've seen paparazzi photos of you and your family frolicking on an exotic beach. Don't pretend like you don't take vacations. Do you practice while you're on vacation? I doubt it. So don't give me this Every Single Day crap. Every Single Day my a$$!

Wow. I was really having a moment.

So I got to thinking about this life and every exhausting aspect we face of it every day.

And I realized that there's something I really miss from our old life. Something very selfish of me to miss. Something I have a hard time admitting because I don't like being selfish. But I couldn't help it.

I miss Sick Days.

I used to get five sick days a year at the company I worked for. And I always took all five.

Some, of course, were for those downright sick-as-a-dog days. I don't miss those days.

It's the ones where you're feeling just a little off. Not truly sick enough to miss work over, but the pull of staying home and doing absolutely nothing all day is so persuasive that you decide to call in.

The ones where no one else is at home because your husband is at work and your daughter is at pre-school, both safe and healthy and going about their normal routines.

The ones where it's okay to rest your body and mind. To take a guilt-free nap in the middle of the day. To change out of your PJs only the minute before your husband and little girl get home.

The ones that fill you up so that you can face the next day with a full charge.

Those are the days I miss.

Because I don't get those days anymore. Neither does Jeff.

Wouldn't that be something. To be able to take the day off from a spinal cord injury.

Today we're taking the day off. Shhh. We aren't going to tell anybody. You aren't going to be paralyzed today, and I'm not going to be your caregiver. We're just going to hang out in our bedroom all day long. Tomorrow, we'll get back to this SCI life. But today we're not having any of it. Today we are free.

Oh what a day that would be.

But those kinds of days are no longer part of our life. Because every single day we work harder than we ever thought possible. Some days are physically exhausting for me. Some days we have a mental mountain to climb.

Every Single Day we work hard at this life.

But unlike Tom Brady whose hard work, dedication, and perseverance win him a(nother) Super Bowl ring in the end, OUR daily hard work, dedication, and perseverance are rewarded with yet another day filled with hard work, dedication, and perseverance.

Every Single Day. No Matter What.

* * * * * *

Enter perspective.

I haven't seen that Under Armour commercial since that nasty day. And since some time has passed and I've been able to air out the negativity (since I don't like carrying it around with me), I'll try to remember, the next time that commercial comes on, that frame of mind plays a big role in interpreting the message.

I'll do my best to know that the hard work I put into every single day of my life means I get to experience the greatest thing of all: Another laugh with my husband. Another hug from my daughter. Another day to be thankful that we have each other to journey with through this life.

Every Single Day. No Matter What.

-xoxo-


In case you missed my transfer video recently shared by AbleThrive, here it is. This is the "reverse bullseye transfer" going from the chair to the bed - the easier of the two we perform each day. It's a ten-minute process that I've sped up to just over one minute. If you look closely, Evie even makes a cameo appearance near the end!



p.s. Sorry Tom Brady!

Saturday, September 26, 2015

What a Spinal Cord Injury Really Means (and Doesn't Mean) to Us

Your husband has suffered a spinal cord injury. His C4 vertebra fell on top of his C5 and compressed the spinal cord in this area. His injury is very severe.

During the [second fusion] surgery, we hooked up electrodes to all four of your husband's limbs and monitored his brain activity. When we turned on the electrodes, his brain did not pick up the signals. They aren't getting through because of the damage to the spinal cord.

Spinal cord injuries are classified as either incomplete or complete. Incomplete means that some sensation and function is retained below the level of injury. Complete means there is no sensation or function. With a complete injury, there is very little chance of recovery. Your husband's injury is classified as complete.

Diagnosis: C4 quadriplegia, ventilator dependent respiratory failure secondary to spinal cord injury

Prognosis: poor

In the days and weeks following Jeff's injury, these are some of the words we heard and conditions that were reported in Jeff's records.

This was our introduction to a spinal cord injury - an instantaneous change in life followed by the sensation that everything was spiraling out of control.

September is National Spinal Cord Injury Awareness Month, and I want to dedicate this blog post to discussing what exactly a spinal cord injury means to us.

I think the able-bodied public's perception of someone in a wheelchair is that if that person could just regain the ability to walk, all SCI-related problems would magically disappear. Or maybe they are using the term"walk" when they really mean regaining independence. Either way, there's so much focus on walking. Too much, in fact.

The Internet is filled with stories of injured people, most often paraplegics, who are "walking" again. Headlines blaze flashy, click-inducing titles like, Paraplegic Man Walks With Own Legs Again. But when you actually read the story, you see that it's really about a technology that is allowing a paralyzed individual to take a few steps with the assistance of devices and physical therapists. Of course this kind of technological breakthrough is exactly what the spinal cord injured world needs to get closer to a real cure. But the headline is misleading. The man isn't actually walking. The technology hasn't cured him. And what the article skips over completely is the fact that the secondary issues like dysfunction of the bowel and bladder, or spasticity, or the dreaded nerve pain - all these things ARE STILL THERE.

Because having a spinal cord injury is so much more than not being able to walk. It's not like taking an able-bodied person and plopping him down in a chair, and him being bummed out because he now has to figure out how to get from here to there on wheels.

It's not about that at all.

If there was a magic serum that could give my husband back one ability - just one - I can guarantee, without even consulting him as I type this, walking would not be the one he would choose.

And just to be sure, I in fact did consult him.

He said it wouldn't even be in the top three.

First - the thing he's wanted more than anything since this all began -  is the full use of one arm (he added that as long as we're playing the wish game, he would also like full hand and finger function as well). This kind of function - one arm with hand and all fingers working - would be an extreme rarity for someone with SCI. Injuries don't typically present themselves like this. But the kind of independence he would regain with one fully-functional limb, the kind that would allow him to scratch his own face, pick his own nose, brush his own teeth, shave his own beard, and put food into his own mouth would be utterly life changing.

But the one thing he would want most with this ability would be to wrap his arm around his daughter and pull her in for a tight hug - to actually feel her arms around him as she hugs him and lays her head on his chest. To do that - to feel that again - would give an entirely new meaning to his life. The act of a simple touch or a quick hug would never, ever be taken for granted again.

Secondly, he'd like to get rid of the hole in his trachea where air is forced into his lungs. He'd love to be free of the ever-present tube that lays on his chest and attaches to a ventilator. He would love to be able to breathe on his own for more than a few minutes at a time without feeling like he's just finished a marathon. He'd love to take a deep, cleansing breath - the kind where your lungs fill to the point of bursting. He hasn't taken a breath like that since ... well, since the moment right before he dove into the ocean and all this craziness began.

Thirdly, he would want the pain to go away. I know it's hard to imagine how someone who is paralyzed from the neck down - who can't feel anything below his neck - can be in so much pain. But let me tell you, it's there. And it's relentless. Some days it's all consuming. Of course there's the physical pain he feels in his neck - in the area where he has normal sensation. He's got hardware running along four of his vertebrae and scar tissue from two fusion surgeries. He has a knot on the right side of his neck that causes daily physical pain.

But then there's also the nerve pain. It's not phantom pain; he isn't imagining it. Sometimes his brain interprets it as a burning sensation, like his limbs have fallen asleep and are tingling uncontrollably. Sometimes the slightest breeze makes his so cold that I have to put a warmed-in-the-dryer scarf around his neck and drape a blanket over him while his teeth chatter as he sits in an 80 degree room. And sometimes he says it feels like a boa constrictor is squeezing the life out of him. I can remember just a few days following his accident after he'd had his first fusion surgery and was beginning to communicate with me. He kept telling me to "take off the gloves. They are so tight." I thought it was the medication making him hallucinate. But it wasn't. It was the beginning of the nerve pain. We just didn't know how to interpret it back then.

I'm sure if he felt like elaborating more on his list of wished-for abilities there would be several more before "walking" made an appearance. It's just not that important when things like moving your arms, breathing on your own, and pain management are compromised.

These are just a few examples of what a spinal cord injury means to Jeff.

What a spinal cord injury means to me, as his spouse, is different.

This injury has meant to me things like quitting my job to care for my husband full time. It's meant learning an entirely new skill set in order to, well, essentially keep my husband healthy and alive; it's meant coordinating and moving our family to a new state for an opportunity at a better way of life in the long run; it's meant going to bed each night with an ice pack somewhere on my body, usually my lower back or my shoulders, because moving around a 200-pound man all day takes more strength than a 110-pound woman has.

It's meant living life with an inordinate amount of responsibility. From the day of his injury, the responsibility thrust upon my shoulders was like a heavy cloak. It weighed me down and I could barely breathe. But I couldn't - and wouldn't - shirk it off. That's just not me. I was talking to Jeff recently about those first couple days - when he was in ICU, heavily drugged, his head and neck in traction in an attempt to realign the vertebrae and relieve the pressure on his spinal cord. I had to make all of the decisions by myself. As much as I wanted to hide away in a corner and slowly lose my mind, I had to pull myself together. For my husband. For our daughter. For our family and our friends.

I still wear that cloak.

I always will.

Some days it feels like it's made of lead. Some days it really gets in the way.

But I've learned to live life with it on.

And as long as Jeff is paralyzed, I'll never take it off.


* * * * * *

Every year in the U.S., approximately 12,000 people experience a spinal cord injury.

That's 12,000 lives changed in an instant.

12,000 families' lives turned upside down.

Right now, there's approximately 275,000 people in the U.S. living with some degree of spinal cord injury.

Jeff is one of those 275,000 people.

And no two spinal cord injuries are alike. They are like snowflakes - or thumbprints. You can have several people with the same classification of injury at the same place on the spinal cord, and they will each have a unique set of abilities and function.

Some people get a lot of return of function over time. Many others do not.

I am often asked if Jeff goes to physical therapy, and usually the real, unasked curiosity behind this question is, "Is he doing anything to get better?"

If the cure to a spinal cord injury could be found in a gym, believe me, everyone would have a membership.

No, Jeff doesn't do physical therapy anymore. He did some while in rehab, and even some in-home therapy for a few weeks following his return home. But that therapy mostly consisted of stretching his limbs, and working to loosen and strengthen the neck muscles he has control of in order to keep his neck pain at bay. He still does these therapies, only now I am his therapist.

He also gets regular neck and shoulder massages (from a professional, thankfully!) The massages combined with home range-of-motion and stretching is the only physical therapy we do.

Because the truth is, and this is a hard one, Jeff isn't going to "get better." He's never going to recover. This isn't pessimism; it's simply our reality. And facing that reality head on then finding ways to move forward with our life is our prime mission now.

Because "accepting one's limitations is not the same as giving up."

I try to always retain a positive outlook on life, especially our life now. I've seen the motivational posters and sayings about how an injury like Jeff's doesn't define a person. I've even met people with spinal cord injuries who don't let life hold them back in any way. And as much as I try to get on board with this philosophy, there's simply no denying that Jeff's injury is a huge part of our lives now. It has undoubtedly contributed to the definition of who we are today - as a couple and as individuals. It has changed our life immensely and in a thousand ways. Some of those changes have been for the best. But many of them have not. It has influenced every single decision we've made over the past two years. It has affected the lives of our immediate family and re-paved the paths for their futures. And it has most certainly shaped our daughter and they way she views and relates to people with disabilities.

And I think all of that is okay - it's okay to acknowledge your disability and the effect it's had on your life.

To admit that life is harder now.

Even to acknowledge the insane notion that while life is hard, while it's taken an unimaginable turn, it can actually still be good.


Here's what a spinal cord injury looks like to us:

Hugs from your little one

Playing on the overhead lift

Still in love

Sick days

Sharing candy

Sharing secrets

So many choices

Playing games

More hugs

xoxo

Thursday, September 10, 2015

Our Nightly Visitor

Every night, Jeff and I have a visitor. She pitter patters into our bedroom with a glowing toy seahorse to light her way. She drops off three small stuffed animals in my bed. She pitters over to the bathroom and patters back, hops into my bed, pulls on the covers, and falls fast asleep.

She sleeps on the side of my bed nearest to Jeff's bed. So, in a way, it's like she's sleeping right in the middle between Jeff and me.

She is our Evie.

And we love it.

I especially treasure these nightly visits.

But I didn't always.

Let me back up a little, back to when Evie was a brand new baby ...

When Evie was born, Jeff and I followed the BabyWise method of helping her to sleep through the night. (Let's be honest here ... I read the book and implemented the schedule. Jeff followed along.) By the time Evie was 8 weeks old, she was sleeping through the night. In her own bed.

Baby got good sleep.

Mom and Dad got good sleep.

That's a recipe for happiness.

Evie has always been a good sleeper, and she rarely slept with me and Jeff - only when she was sick would she spend the night in our bed. Or when we would visit Jeff's parents in Vegas.

I remember one Christmas in Vegas (back when we were visitors, not yet residents) when Evie was two years old. She slept in the middle between me and Jeff in the guest room king-size bed. The key phrase in this sentence is "Evie slept" because Jeff and I surely did not. It was like having a baby alligator thrashing and rolling around between us all night. How could a king-size bed feel so small? And the moaning - where does that come from? She moaned from midnight to 6 am!

Here's a visual representation I found on Pinterest that shows what that experience was like - and thus why Jeff and I were never big proponents of co-sleeping with the alligator baby.



But in 2013, everything changed.

When Jeff spent nearly 7 months in various hospitals following his injury, I stayed most nights with him. He was terrified of his ventilator popping off in the middle of the night and nurses not coming quickly enough to put it back on before he blacked out. The vent did, in fact, pop off several times in those early days before we learned to rig it with rubber bands to hold it in place (which we still use today). Jeff needed me there with him. To get him through those terrifying nights. To wipe his head with a cool cloth when he had raging fevers. To be the runner to get the nurses when he needed suction because he had no way to push a call button and no voice to call them. To stand next to his bed, half dead with exhaustion, rubbing his forehead with my hands to let him know I was there and that we were somehow going to make it through this.

I loved being there with him.

But I missed Evie. We both did.

Evie was in very good hands back then with my Mom. They would sleep together in my mom's bed, safe and sound.

And on the rare nights that I stayed home, I would let Evie bend the rules and sleep with me in my bed - which seemed so vast and empty without Jeff in it. Together Evie and I would snuggle, reading a book by flashlight or playing a game on my phone before we would fall asleep. Some nights I would wake in a panic, my arms frantically searching for Evie. My mind was so mired with stress that I would dream she wasn't breathing. I would find her next to me, pull her sleepy little four-year-old body onto mine, and hold her while I cried. Her rhythmic breathing would lull me back to sleep.

Those early days were so hard.

Once Jeff transitioned home, Evie was back to starting off the night in her own bed, but she usually made her way into Nana's room in the middle of the night. Both Nana and Evie knew they had to fess up in the morning and let me and Jeff know how the sleeping arrangement played out each night. We tried to get Evie to sleep all night in her own bed, but honestly, she was still getting plenty of sleep each night, even with bed swapping, and because of that, we eased up on the sleeping rules.

Once we transitioned to our current home in Vegas, Evie continued the same pattern of starting off in her bed, and ending up in Nana's. Jeff and I continued to weakly enforce the "stay in your bed all night" rule. But everyone was getting plenty of sleep, and no one was complaining.

Then in early summer, my mom left to visit family in another state for many weeks, and Jeff and I thought - this is it - our chance to get Evie back to sleeping in her own bed! We had bent the rules long enough. It was time to straighten them out.

Jeff and I talked to Evie about sleeping in her own bed - THE WHOLE NIGHT. She was fine with the new rule. She didn't mind sleeping in her own bed - she never has.

So we were a little surprised when, on the first night Nana was gone, Evie wobbled into our room at 1 am. She was whiny and groggy. She was also very hot. She had a fever of 102.

I was torn. I couldn't go back to her bed with her. I have to sleep in the same room as Jeff in case he needs me. But she needed me too.

I immediately opened my bed and she climbed in.

This nighttime ritual lasted the duration of her fever, which was about 3 days.

And during those three days, I discovered something ...

I liked when she came in. I found myself looking forward to it. So much so that I upsized my bed from a twin to a full to accommodate those nightly visits.

Jeff liked them too. He said he loves when she walks in with her little seahorse fired up, playing soft lullaby music. He listens as she hops into my bed, and a comfort comes over him as he knows his girls are safely tucked in next to him - even if they are in another bed.

Sometimes when she floats into our room, he whispers to her and asks her to raise the head of his bed up. She knows the buttons on his bed by heart, and in the darkness, she pushes the up arrow and raises his head slightly. Whispers of "Thanks, Sweetheart" and "Welcome, Daddy" follow.

So now, each night, we repeat this routine. And each night we find we love it more and more. I love feeling her little body snuggle up next to mine. Yes, sometimes I get an elbow in the back, and more than once she's been a bed hog (thankfully she's outgrown the alligator phase), but having her next to me - having her and Jeff and me all in the same room - creates a level of peace I haven't felt in a long time.

Every morning I get to wake up to her sleepy smile and fuzzy hair floating all around her head. She usually doesn't linger in the bed long though. Now that Nana is back, she jumps out of my bed, abandoning the motley crew of stuffed toys she brought with her in the night, and skedaddles down the hall to snuggle with Nana before getting up to welcome the day.



* * * * * * *

And so we've found ourselves breaking a once rigid rule. If you know me at all, you know I am a play-by-the-rules kind of gal, so this one was a challenge for me. But if there's one thing I've learned throughout the last two years, it's that life has a way of changing. Priorities shift. And rules often have to be broken and re-forged to better accommodate a new way of life.

This sleeping arrangement works for us right now in our life. For seven months, the three of us were forced to sleep under separate roofs, dictated by circumstances we had no control over. Now that we are getting settled into our new home, the nights are no longer stressful or scary. They are peaceful once again. We just have a new setup.

I know that one day Evie will grow out of wanting to snuggle in my bed. And that's okay. Growth and transition are necessary parts of life. But for now, I am loving this phase. The one where Mama and Daddy's bedroom is the center of love, safety, and comfort.

Where I get to spend a restful night with the two most important creatures in my world.


Here's to a good night's sleep - for everyone.

Wednesday, August 26, 2015

The Terrible, Horrible, No Good, Very Bad Day

It started out perfectly fine. Evie was excited about her second day of school. Jeff slept well and felt good in the morning. Nana and Evie got off to school just fine, and Jeff and I ate breakfast together. It was all just lovely.

Things went downhill from there.

I found myself with some extra time yesterday (huh? what's that?). So I decided to look for some part time job opportunities online. When we moved to a new state four months ago, I had to quit my full time job as a technical writer to focus on getting our family established in our new city and taking full-time care of Jeff. And now that summer is over and Evie is back in school, I am finding that I just may have the time for a part-time, flexible, work-from-home job. So I began looking.

I found an editing job that looked like just the ticket. I had all of the qualifications and necessary experience. I clicked my way through the application, then landed upon a test. It was about 20 questions, and I had 40 minutes to take it. So I started.

The questions were grammar based, and while many were tricky, I felt I did fairly well.

I submitted my test and the screen told me I would receive my results immediately in an email.

I hurriedly clicked on the email and was met with the jarring first word:

"Unfortunately ..."

I didn't pass.

I couldn't believe it.

The letter didn't say if I was even close to the mark. So I have no idea if I was just one wrong answer away from moving to the next stage or if I'd bombed the whole test! All I know is the very nicely-worded rejection letter sounded like this in my head, "Sorry, but your skills suck, and we can't possibly work with a loser like you."

I felt horrible.

Words are my thing. Grammar is my strong point. How could this happen?

I went into the bedroom with hunched shoulders and told Jeff of my failure. I told him I feel like caregiving and managing our house and keeping our family's life running smoothly are consuming so much of who I am that I am no longer good at what I used to do for a living.

He told me maybe I need to spend some more time studying before I apply for other jobs. Great, now I have to spend what little time I DO have to myself studying something I should already know! But really, he's right - even if I didn't admit that to his face.

It was a very deflating moment for me.

I used to love working. I was good at my job. I made decent money. I provided financially for my family.

Now I work harder that I ever have in my life, but I don't receive any of those benefits. And though I have developed new skills over the last two years, they aren't skills I can put on my resume. The work I do now is completely different than the work I used to do. I simply can't bullet point that I dress and feed my paralyzed husband each day with efficiency. That I maintain a complex inventory of medical supplies and communicate monthly with the vendor ensuring supplies are accurate and stock isn't running low. Or that my troubleshooting and quick thinking skills have increased tenfold - like the time when changing my husband's trach, a flap of skin prevented me from putting the new one correctly into place. With my heartbeat rising steadily and my husband looking at me wide eyed, his breath labored because the thing that keeps him alive wouldn't go into his throat, I calmly told him, "You're fine. I need to get a new trach because this one isn't going in. You can breathe for a minute just fine." I flew into the closet and grabbed an extra trach. By this time there was blood on my hands from trying to force the first trach in with the flap of skin bleeding all over the place. With the second trach still meeting resistance, I finally reached my finger into the hole in his throat, held the flap firmly in place against the side of the hole, and with my other hand, guided the new trach into its proper place and gave him air again.

How exactly do I put that on a resume? Successfully performed a life-saving procedure on a quadriplegic under strenuous circumstances all while maintaining a professional composure.

Yeah, I don't think so.

I feel like I'm disappearing in all this. Like the person I used to be is fading away. Like that picture of Marty McFly in Back to the Future. If I don't do something quick, I'll be gone for good. (Where DID I park that DeLorean?)

Or maybe I'm just morphing into someone new. I think that's probably what's really going on. Still, I really was not happy with my dwindling academic skills.

BUT ... I didn't have time to throw a proper pity party. Instead, it was time to get Jeff out of bed and into his chair so we could continue this terrible, horrible, no good, very bad day.

Yesterday afternoon we had an appointment with a pulmonologist. We were really looking forward to this. It was a first meeting - a "getting to know you" appointment. Jeff needs a pulmonologist (for obvious, ventilator-related reasons), and the truth is, he's never actually had one - besides the ones in the hospital. We had a bad experience with one back in California where during our first meeting the doctor was so shocked to see someone on a ventilator outside of a clinical setting that he immediately wanted to put Jeff back into the hospital. Jeff was not sick at the time, so we were equally shocked by this doctor's vehement suggestion. The pulmonologist went so far to tell us that if he had been Jeff's doctor at the rehab hospital, he would have never released Jeff to go home. He said the home is very unsafe for someone on a ventilator. That's when Caregiver Kristen wanted to leap at the doctor and put HIM on a ventilator - but instead we left and never went back.

So needless to say, we were very much looking forward to teaming up with a new pulmonologist. In fact, I worked with several people to find a good fit for Jeff. We need a doctor who is going to work with Jeff long term. And evidently this one was essentially hand picked for Jeff. Or at least that was the indication we got.

Jeff and I talked about the topics we wanted to discuss with the doctor like managing ventilator settings and options for the future - perhaps a discussion on weaning procedures or testing his phrenic nerve to see if he might be a candidate for a diaphragm pacemaker. Pretty big stuff.

At 1pm I started getting Jeff dressed and ready for the appointment (which wasn't till 4). We left the house in plenty of time, and we arrived 30 minutes early. We stayed in the car until 3:40, then headed in.

Jeff trying to hide from me in the bushes, 
just before the doctor appointment that concluded our 
terrible, horrible, no good, very bad day.

At 4 pm, our appointment time, the front office gal called us up to fill out paperwork. I completed it quickly, having come prepared with a list of all Jeff's medications and all surgical history.

A nurse called us in, and at 4:15 we were in the exam room. The nurse was pleasant - made chit chat about the weather and took Jeff's vitals. She avoided the topic of "how did you end up in a wheelchair and on a ventilator" - I guess she was waiting on the doctor to cover that.

She left the room, and we eagerly awaited the doctor's arrival. I had my notebook in hand, ready with questions and topics to cover. We were finally on our way to getting Jeff connected with a pulmonologist.

After 30 minutes, we figured the doctor was busy and running late. Maybe there was an emergency.

After 1 hour, we were pretty sour. The nurse lightly knocked on the door, slowly opened it, and told us in low tones how sorry she was. How the doctor takes a lot of time with his patients since he is so dedicated to them. He had several new patients before us. We asked her how much longer. She estimated another 30 minutes.

We decided to wait. We didn't want to have to reschedule. Sometimes these appointments have to be made months in advance.

And so we waited. After another 30 mintues, Jeff looked at me and said he'd lost all the fire we came in with. He no longer had the interest in asking questions or the energy to discuss options.

After another 30 minutes, 2 hours total in the exam room, I opened the door, and Jeff sped out. The halls were empty. For a second I thought everyone had left and we were locked in. But we turned the corner, and there was the nurse ... looking like she got caught with her hand in the cookie jar.

"He's with the patient right before you," she said, trying to persuade us to stay.

"This is unacceptable," Jeff told her. He knew it wasn't her fault, but someone had to know this.

I have a feeling it wasn't her first time. She told us that it really wasn't the doctor's fault. That if anyone is to blame, it's Scheduling - they schedule patients too closely together. By this time, all I could hear was Blah, Blah, Blah.

We asked for our co-pay back and she explained that all of the ladies in the front had left for the day, and there was no way she could help us - BUT someone from the office would call me tomorrow and refund our money (as I type this, today IS tomorrow, and no one called).

She let us out the back door, apologizing the whole time.

The door of the building closed abruptly, and we made our way to the van in silence. Jeff whizzed along on his chair, and I tried to keep up on foot. He told me gruffly, "I'll meet you there." The path for him was longer than mine, as I could easily step off the curb and make my way to the van. He had to drive to a break in the sidewalk where he could get down the path safely. He drove fast. He was probably the most angry I've seen him in a long time.

We arrived at the van at the same time. The parking lot was nearly abandoned. It was 6:15pm. I fumbled for the keys in my purse, not yet prepared to so abruptly be spit out of the office building.

In my shocked state of "what the **** just happened, I finally opened the van, loaded Jeff in, buckled him and his chair down, and slammed the driver door shut.

Then we both did something unexpected.

We started crying.

Not hysterically. Not the tears streaming, woe is me crying.

It was more tears in the eyes, exhaling in disbelief, frustration boiling over kind of crying,

"I'm so F***ing MAD!" Jeff screamed, his voice hoarse from all of the pent up anger inside him.

We looked at each other in the rear-view mirror, tears swimming in our eyes.

He continued. "And I feel so bad for you because now you have to start all over."

He knows how all-consuming and demanding it is to manage his care.

And for a few minutes, we sat in the van, alone, in complete shock at how we'd been treated. Curse words flew, tears fell, words of how this type of thing isn't helping our already difficult life were thrown around the van. We had bona fide pity party.

Then we pulled ourselves together. Jeff said, "Let's get home and see our daughter" who was happily playing with grandparents, blissfully ignorant to what we were dealing with. (We are so thankful for the help we have in our life).

We drove home in silence. Picked up dinner. Pulled in our driveway. Unloaded Jeff along with all the supplies we have to take, even to a destination only 8 miles away. Hugged our daughter. Ate dinner. And asked Evie how her second day of first grade was.

We were exhausted. We still had hours of work ahead of us that night.

But we were home and safe.

By the time my head hit the pillow, Jeff was already sawing logs.

These are they types of days I like to call Dementor Days. Harry Potter fans already know what this means. Dementors are demon-like creatures who suck the life out of you. They suck out all the good things about your life - your good memories, happy feelings, etc. and leave you feeling miserable.

Yesterday was a Dementor Day. It was truly a terrible, horrible, no good, very bad day.

And I was glad to see it come to an end.

Because Dementor Days are usually followed by better days.

And today was a better one.

Saturday, August 22, 2015

What I Signed Up For Ten Years Ago

A few years ago, before Jeff's injury, we talked about going to Hawaii for our ten-year wedding anniversary. We had honeymooned in Hawaii in 2005, then returned the next year for Jeff's parents' 40th anniversary cruise. We were never big travelers, but we did love going to Hawaii.

We even decided that we'd make a family vacation out of it and take Evie.

She'll be six by then - old enough to have fun and remember the trip for a long time.

And so we made plans.

Then everything changed. And our plans were washed away in the ocean with the setting Hawaiian sun.

Last week - August 20th - was our ten year anniversary. Jeff and I both braced ourselves as the day approached. We talked about having a Hawaiian-themed backyard party with family, highlighted by tropical music and fruity drinks, but that idea fizzled out. It's hard to plan events like that without knowing if Jeff is even going to feel good enough to get into his chair that day.

At one point Jeff told me that he didn't even want to celebrate. He didn't want to be reminded that we aren't where we had planned to be on our ten-year anniversary.

But about a week before the big day, he said he wanted to go out to a local casino and spend a couple hours there together. He doesn't often want to go out in public for extended amounts of time, and honestly, neither do I considering the amount of work involved. But I found I was pleasantly surprised with his suggestion and was really looking forward to it.

In the days leading up to our anniversary, Jeff and I shared wedding stories with Evie. She loves to hear stuff like that. We told her all the funny parts like how during the ceremony, Daddy was so nervous, and as he and I were holding hands, he nearly rubbed the skin off mine with his fidgety fingers. And how we both got dizzy during the ceremony as the yacht we were married on was doing circles in the harbor. And how we had to re-take a bunch of post-ceremony photos because the film wasn't advancing in the photographer's camera (that one actually wasn't so funny - and trying to explain what film is to Evie was a challenge).

On the morning of August 20, we were woken up by a cute little girl saying, "Happy Anniversary!" in a sleepy voice. She had gathered up a few things from around the house and presented them to us in a gift bag with "To Mama and Daddy" written in six-year-old scrawl on the front.

Later that morning, Evie and I got all nostalgic, and we pulled out my wedding dress. She had been asking to try on my "bride dress" as she calls it for a couple years now. (She dressed as a bride two Halloweens ago - thank goodness Jeff was in the hospital at the time because seeing his four year old in a wedding dress would have surely put him there anyway!) So I told her that today was the day she could actually try on my bride dress. Why not? August 20 is as good a day as any for a fancy dress.

She insisted I try it on first. Good news is that it still fit - barely. Bad news is that I could only breathe in it for about 5 minutes. But that was long enough for us to show Daddy and then take a walk around the house with Evie holding the train.

Here we are in our bride dresses

Then it was Evie's turn. I told her that if she wanted to wear the dress, there was one caveat ... she had to let me take pictures. Needless to say she was a willing participant.

We had a wedding photo shoot in her room. She posed and giggled as I snapped away.

It was like looking back into the past and ahead into the future all at the same time.





Afterward, we put the dress back in its plastic bag and hung it in the closet (it lives amongst all of Jeff's medical supplies).

Later that afternoon, I got Jeff dressed and up in his chair, Evie headed out to dinner with the grandparents, and Jeff and I headed to the casino.

I was both excited and anxious at the same time. We had been to this particular casino numerous times, but all before Jeff's injury. So whenever we go somewhere we used to go - when we lived our old life - I always wonder how it will feel to be back now that we're living our new life.

And I'm happy to say that it felt really good. 

We walked/rolled around the entire familiar casino, noting which machines had changed, the bar where we used to get drinks, and the blackjack tables Jeff used to play at. We talked about how flippin loud and obnoxious the slot machines are. We shared a beer. We spent all our allotted gambling money on the Wheel of Fortune machine. We cheered every time we got to spin the wheel and moaned in disappointment when it didn't land on the $1,000 slot. We ate dinner at a little cafe in the casino. It was deserted and quiet - totally our style.

We said we wanted to do this again. Soon.

We were happy.

And that's the point, isn't it? To be happy. Ten years married, and despite everything we've been through, we were happy.

On the way home, we picked up a cake we'd ordered a few days earlier. It was our way of adding a little tropical celebration to our anniversary. It was as close to Hawaii as we were going to get.



That night, we spent the evening doing our "normal" routine. All the stuff that comes with being a quad. We certainly didn't spend the evening the way either one of us would have imagined ten years ago. We didn't go out to a fancy candelight dinner. We didn't come home and share a bottle of wine and relax on the sofa listening to soft music. And we were very much NOT on a tropical island relaxing every stress, worry, and care away. We just can't escape like that anymore. There's simply no way to get around the demands of a spinal cord injury.

Later, as I went into the closet to grab supplies for Jeff, I noticed my wedding dress hanging there, twinkling in the light, surrounded by tubes, gauze, gloves, pills, and creams. The dichotomy hit me in the face. When I wore that dress ten years ago, I had no idea that this is where I would be right now. Like the dress, I was surrounded by stark reminders of an unplanned life.

I've often heard the expression, "I didn't sign up for this" referenced when life doesn't turn out the way you planned. When you are forced into a role you never wanted and never imagined yourself playing.

And while I certainly didn't hope for this life - for my husband to be paralyzed and for me to take care of him - I most definitely signed up for it.

Ten years ago, I vowed to be Jeff's "faithful partner in sickness and in health ... to cherish, honor, and respect him for as long as we both shall live." I made a verbal promise and I signed a marriage contract. If that isn't signing up for something, then I don't know what is.


2005

I look at this picture from ten years ago, and I almost feel sorry for us knowing what's going to happen to our family. Our smiles were so genuine. So bright. So blinded by the hope of a perfect life to come. 

But things didn't exactly turn out that way.

Still, I'm glad we didn't know what was in store for us. We've endured a most harrowing ordeal, we've clung to our vows, and somehow we've managed to still smile on the flip side. Yes, our smiles aren't as bright. Life has weathered our bodies and our spirits. We've seen beyond the blinding sun and faced the storm lurking behind. 

And we've survived.

Now that is something worth celebrating.

Happy 10 years, my Love.



2015

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...

"OHMYGOD - JEFF!"

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."

WHAT?

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.