Spinal Cord Injury Super Basics

Written by Andrea

Now I understand writers block. I sit down, intent to write, as per Ri’s suggestion, about caregiving for my boyfriend while on vacation in Hawaii. I write, then erase, write, then erase- if it were the olden days I would have accumulated a thousand crumpled pieces of paper around my desk by now. Then my AhHa moment came, and I concluded- none of this makes any sense unless you understand a little more about Riley, about spinal cord injuries, about why caring for a loved one is… complicated. So, I am going to write a little bit about that as it just feels like where I need to start.

medical-specialist-foramina-cervical-spine-superior-nuchal-line-inferior-mastoid-biology-study-process-styloid-transverrse-ligamenta_fotor

It does feels weird though, starting at the beginning, probably because I wasn’t there 8 years ago when Riley dislocated his neck at C 5/6 (conveniently circled in the picture above). I could never speak to the gravity of that situation. It would be 4 years until we met, and in between the life he had back then and the life he has now was that moment, as quick as the blink of an eye, really, that changed so much.

Ri’s dislocation caused immediate injury to his spinal cord – the very important and delicate bundle of nerves that carries impulses to and from the brain to the rest of the body. When the spinal cord experiences trauma, a loss of function, such as mobility &/or feeling can occur. Unfortunately, for over 5 million (!) people in the US of A alone (including my love), the consequence of the SCI (spinal cord injury) is paralysis.

In many SCI’s, the cord remains intact, but the damage still causes a loss of function (called an incomplete injury). Riley falls into this category and, because of this, he still has a good bit of sensation below his level of injury. This threw me off at first. Example- early on, I remember him commenting to me that one sock (underneath his pants and completely out of sight) was twisted and sagging. Say what?!?! Sure enough, his diagnosis was accurate and I was super impressed. I realize that sounds promising, but the day to day reality for Ri is that most of that sensation takes the shape of pain and discomfort that he can’t just walk off. I haven’t asked lately, but I bet he would say this is one of the most challenging aspect of his life in a wheelchair.

The Christopher and Dana Reeve Foundation provides a really great summary of a C5/6 injury. Riley falls somewhere in between these 2 descriptions:

  • C5 injuries often spare the control of shoulder and biceps, but there is not much control at the wrist or hand. Those at C5 can usually feed themselves and independently handle many activities of daily living.
  • C6 injuries generally allow wrist control, enough to be able to drive adaptive vehicles and handle personal hygiene, but those affected at this level often lack fine hand function.

You can check out this handy dandy myotome/dermatome man below for a visual. Essentially, the purple C5/6 regions are the space where things start to change for Ri. Anything below those lines is affected.

dermatomes_fotor

It probably goes without saying, and it feels really bizarre for me to write this, but the majority of Riley’s body is paralyzed. I totally see the other side though- can you believe everything one can do and experience from the chest up? Think about it- see, taste, hear, smell, speak, kiss, make love, breathe, think. And move. Riley can definitely move. His shoulder dancing is legendary (I would’t dare joke). But, reality is such that Ri does require the physical assistance of caregivers/personal care assistants (PCA’s) to get up and on his way in this world.

Currently, Ri employs 4 PCA’s. Most days, our home is buzz buzz buzzing with activity. Someone arrives at our house before the sun even rises (we never set an alarm clock and instead wake to a gentle tapping on our bedroom door- a method that is 95% reliable). They first assist Ri with things that we might not even realize we do when we wake up- roll over in bed or take a sip of water, as an example. Then, this whole morning routine begins. The PCA helps Ri get up and on his commode (to do the morning business). They assist with showering, dressing and then they drive Ri off to work. In the early evening, he is picked up at work and then his PCA helps him around the house and eventually into bed. That’s 15+ hours of “being on” each day, you guys. By the end of the week, we all need a break, so I help Ri quite a bit throughout the weekend.

After much trial and error, that is our current homeostasis. It will change again soon- it always does. I have been asked, many times, what it is like always having someone around, observing your relationship and lifestyle. This has probably been an evolution, but at this point I would say we just really don’t care. We are committed to providing a solid work environment for the PCA’s, but outside of that we go about our normal home life.

I want to tell you one thing about me, though, since we are all getting to know each other. Admittedly, I have a caregiver-y side to my personality that I work to keep in check. Why? Because I NEVER EVER want Ri to wake up one morning, look left and realize that his girlfriend has transformed into his caregiver. Don’t get me wrong- I do help Riley with his care, but I am mindful not to over help, not to over insert myself into his intimate business in ways that would compromise our romantic partnership. I adore being adored by that man, and I admire how large, in charge and directive Ri is about his care and his life in general- I have no interest in stripping him of that autonomy. What I will do, though, is know his care like the back of my hand, totally step in as necessary and within my limits, and train each caregiver to the point of obsession so Ri and I can have peace of mind. I also need a lot of sleep to keep my head on straight, but that is more a side comment.

As for the Hawaii trip, my caregirlfriending was a true experiment and I really will share more about that soon.

But in the meantime, please oh please let me know-  Is any of this remotely interesting? Should I continue this blogging journey? I am feeling vulnerable and need input, ideas, whatever you got just give it to me straight!

I also want to say that this is, no doubt, an oversimplified blurb about spinal cord injuries. Good places to read more include:

christopherreeve.org   &/or   The Shepherd Center

Thanks and love!~~~~A

 

 

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18 thoughts on “Spinal Cord Injury Super Basics

  1. Please continue to write, Andrea, as you have a true gift. You know Uncle Gary suffers every day from his injury. He broke 9 bones and some in more than one place.He has rods and screws holding him together. He lives the best he can and tries to do as much as he can (often too much) We both know how fortunate he is to not be in a chair. When the Dr. put him together again, he couldn’t promise he would walk. Without drugs and shots I don’t think he can handle the pain. Only I see the real suffering and struggle to get up and going each day. At least he can get up. Although I have never met Riley, I know he must be so strong and it is so great that you found each other. I love your blog and you.

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    1. I love you too, Aunt Terry and I also understand a lot of what you are saying. Thank YOU for sharing. Your support is very much appreciated- I guess I will just keep on writing and see where this is headed!~xoxoxo

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  2. I enjoy your blog very much. I am married 40 years in Aug. this yr. Car accident in 2015 has left me paralyzed c5-6 and t11-12. I’m still trying to accept my new world. I am very humbled at the love and support of my husbsnd, siblings and kids. I hope to come out of this ??? Slump and get on with my life. Life has a lot to offer me…..grandkids and a great grand daughter. Keep writing I enjoy it.

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    1. Hi Janny! We are happy that you made your way to the blog (btw please let us know how you found us!).Thank you SO much for taking the time to comment. It sounds like your SCI injury is very new (though maybe it doesn’t feel that way). Ri would be much better at speaking to this, but I imagine it takes a long time (maybe a lifetime?) to both process such a significant trauma and also get to know and appreciate the new you and all that you really are capable of. I can tell you that from the perspective of an observer, I notice that even after 8+ years Riley is still processing and redefining what his life now looks like. Some days that is easier than others. I do notice though, that I can look back on the past 4 years of knowing Ri and definitively say he smiles and laughs more than he did when we met. I think that means things get better :).
      Take it day by day- you clearly have people in your life that love and cherish you dearly. Please follow our blog so we can get to know each other even better! Warmly, Andrea

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    1. Hi Kate,

      Thank you thank you thank you for taking the time to comment! It is deeply appreciated and provides the fuel we need to keep writing! Please follow along on our journey so we can get to know each other. Best, Andrea

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  3. I love that you are able to share your life and feelings with such grace and ease. As life rolls along and I hear about more people having SCI,, I’m grateful to be able to guide them to your blog. Not only as a very accurate and honest account of what living with SCI entails , but what beautiful magic can still come into their life’s and how full life can continue to be. You are a great writer Andrea, and I hope you continue to share. I love you both so much and am so grateful you came into our lives.

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  4. Okay, I’ve read them all….Now I’m left wanting more!! I’m so thankful to know you Andrea!!! This is such a great blog, and your writing is so factual while also being honest/sincere/funny. You two were made for each other — it shows in the way you write about Riley and the way Riley looks at you. Keep up the good work on this blog. I know it may feel like you’re exposed, but this exposure will help so many people relate to what you guys are going through. xoxoxoxox ❤

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    1. Breanne love your wish has been granted! I just published some new ramblings- I think you might enjoy :). I especially appreciate that last line of encouragement- yes indeed I do feel exposed- but for whatever reason I feel compelled to keep it going! You keep up with your creative outlets as well, my dear friend. See you soon! xoxo~~

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