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



  1. Thank you for explaining more of the toll SCI causes. I hadn't realized it. That's for the education. Prayers for you all.

  2. Fantastic post. Thank you for sharing your honest insights. You are so courageous to open your life to the world. It makes a difference.