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


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.