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.
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.
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:
Thanks and love!~~~~A