Oh, What we can Learn when we Listen to our Patients

The Case Manager

I am on a Spinal Cord Facebook Support Group. The group is designed for people who have had spinal cord injuries and are living their new normal. It is fascinating to read about their issues, the challenges they face, and also to see how resilient they are in overcoming life's changes. 

In this article, I wanted to share some of their comments and stories so you can see what it is like to live with a spinal cord injury. The posts help me realize that my role as a nurse case manager can help people set realistic expectations, better understand their conditions, and find the resources they need to live a "new normal."

Question: What would you do if presented with the opportunity to walk again? 

Answers:

I'd probably run and jump for joy, find someone to live with, and enjoy life!

I don't think I could walk after all the years and broken bones. But if I could, I would like to kick a soccer ball barefoot, run on the beach, or go rollerblading.

As an incomplete quad, I’d rather have the use of my hands and control of my bowels and bladder. Walking isn’t the end-all, be-all.

I would hike, paddleboard, and ski. I actually plan to ski this winter. It's not the same. But I did enjoy adaptive kayaking this summer. Still adjusting 15 months since my accident

I would dance again! 

Stand up and hug your partner. Knock on my son’s door, as I’ve never been able to get into his house

Dance with my wife, then go on a walk with her and our dog

If I could walk, maybe women would ‘like’ me. Other than that, I’d be happy being a better water skier.

First, I would put both feet on the ground – I have not felt the earth for a long time. I would stretch every toe and dig them into the dirt. Next, I would pick both feet off the ground - one at a time, with a decisive resound as they hit the trails and gained speed. I'm so grateful that somehow, I still run in my dreams.

I would wrap my arms around my baby. She's as tall as I am now. She was 13 when fate stole my arms and legs. I am so grateful that somehow she still loves me the same. 

Oh, if I could have that body back. Those sculpted legs that booty damn. I would be in front of the mirror the whole damn time. I am grateful that I somehow learned to love myself for my mind. 

Give me back my motor function for a day. Then put me in the water, any water - ocean, river, lake, put me behind the wheel, put me on the jobsite one more time.  I am so grateful I found new ways to feel alive.

Question: What are some of the effects of a spinal cord injury you would have never imagined until you experienced them? 

Answers: 

The lack of knowledge in the medical field about SCI. Most of the time, patients have learned more about educating themselves than the doctors they see.

What it feels like to have a body that doesn’t do what the brain tells it to do ... even when it asks nicely 

The crazy side effect for me from having a SCI. I sweat profusely from the top of my head when any food, hot or cold, is placed in front of me; occasionally, I sweat just thinking about food.

How quickly my body went through atrophy. I can't feel anything but my hair and nails still grow. 

Autonomic Dysreflexia. Mushrooms give me crazy spasms, even with a baclofen pump.

Your gut completely stops working or goes into super overdrive. Mine have stopped working 

It is my job to be more educated about my injury than most medical professionals. 

Most doctors' offices are not accessible. I haven’t been weighed a single time since leaving rehab after my injury in 2016. There are no accessible scales.

How vitally important daily stretching, standing, and exercise is. 

The importance of eating "real food" and no processed junk – to have a daily BM, and less body inflammation.

Unbearable debilitating neuropathic pain ... hurts ... all day, every day.

How little I knew. I just thought paralyzed people couldn’t walk or feel anything. It’s like a lot of things. You have to go through something to really understand

I'm still upset about my sneezes! I used to have the best, most satisfying sneezes, but with my injury level of C6/7 complete, my sneezes suck now!

I LOVED TO SNEEZE BEFORE. I could clear a room with my sneezes. Haha. Now they are like little whimpers. 

Understanding the new ways your body talks to you & understanding exactly what it’s saying

The prevalence of poverty in the SCI community. It costs so much more just to live, yet we are expected to live in poverty. The government makes it nearly impossible for us to save money.

Additionally, the need to juggle your decision on which life-sustaining medications &/or supplies you can afford due to the cost.

Learning a new way to navigate the world! Nothing is easy. 

Being paralyzed doesn't mean you don't have pain! Nerve pain is incredibly horrible! I don't care what kind of meds they give you, or how much, nothing works. Your bowels and bladder have a mind of their own. And don't want to work WITH you anymore! 

Elevator doors close too fast. Electric doors close too fast. 

People are even more rude to those who are injured. 

Nerve pain 24/7, pain all day, no sex

How amazing my wife is!

The nerve pain in my butt and left leg controls my life when it’s off the hook; I have to lie in bed. 

"Goodmares," which are the opposite of nightmares. In a "goodmare," you dream you are fine, normal, able-bodied, and everything is good. Then you wake up, and reality is a nightmare. I hate going to sleep because I don't want to have a "goodmare."

Inability to regulate body temperature. One of the weirdest aspects of higher-level SCIs, for sure. And scary when it goes too far one way or the other — too hot or too cold. I definitely would not have imagined it until I had my SCI and experienced it, for sure. And it can definitely interfere with everyday life, depending on your injury and the climate where you live.

Sepsis and kidney infections

After 40 years of living with prosthetic legs, the wrists and shoulders are now worn out. I assumed my upper body strength would always be strong.

Loneliness, as my family excludes me because of my wheelchair. Then, they go on vacation without me because they don’t want to figure out how to make it work. This is probably worse than all the horrible physical side effects

Lack of thermoregulation (tetra)

Autonomic dysreflexia - completely weird and very, very dangerous

Having to plan almost everything in advance… just to get into places like shopping, cafes, theatres, … you name it. Transporting me is an exercise in complex project management —detailed advance planning with multitudes of backup plans A, B, and C.

One of the positive side effects is being able to attend school for free, despite being paralyzed. 

The changes in relationships. Many individuals became stronger, but a few became weaker.

I knew this one already, but quadriplegia brought it home. Love is not sex. The two don't even have to be related at all. 

Being a quad is not nearly as bad as I thought it might be. Fortunately, I was insured well enough so that not only do I not have to work, but neither does my wife. This freed me from the daily stress of work life, so I'll admit it was likely easier for me to accept a forced retirement. The new challenges of learning to deal with daily disabled life with disabilities have been almost a fun experience.

How expensive the quad life is. Not only because of the need for day-to-day paraphernalia or specialized equipment, but also because of the significantly higher cost. If you put the words disability, accessible, or even medical onto an item, the price suddenly skyrockets 3 or 4 times more than when stuff is used by normies.

Never-ending further damage to your body and organs

How hard it is to take care of another human, a daunting task for sure

The attitudinal barriers are another thing that gets me. If I'm doing something and not asking for help, it's "Oh, I see, you're trying to be independent." Like it's a bad thing? Or that it's ok to leave me out of plans because I can't get into a store or someone's home. 

Or to act like I'm not able to speak for myself, so a person talks to my husband: "What will she have...? I'm still me. I want to be included and not be treated differently. If I want help, I'll ask. But please, still hold the door for me! Like you would any other person, hopefully. Just don't rush to do so (run from the other side of the room, telling me to wait! I'll get that for you!).

And finally, how often I talk about poop with complete strangers! 

To all my nurse case managers, friends, and colleagues, I hope you will read this post with your teams. The statements say a lot about how those spinal cord injuries feel, the challenges they face, and what they want from family, friends, and their communities. These comments can teach us a lot about our patients. 

Do you participate in any patient support groups in person or online? If so, what have you learned by participating, and how has it changed your practice? Let me know! Email me at allewellyn48@gmail.com 

Share This Article: