It's the Little Things

After the accident, my hair started falling out in clumps. It got ridiculously thin and there was a big completely bald spot in the back to boot. I asked a doctor about it and she said that most likely my body was responding to the physical stress of healing from my injuries. It took months to begin to grow back in. All that time, and even after I got home for a while, I had to depend on other people to put my hair up in a ponytail, my days of French braiding officially over. Not to mention, I live in a house full of Y chromosomes whose ponytail skills are limited, at best.

I imagine most of the ladies and many of the men reading this can understand how frustrating it can be to have little control over your appearance. After a few weeks at home, I decided I'd had enough. I searched store shelves to find any kind of clip I might be able to maneuver with my limited hand function. Finally, I found one kind of clip that works better than any other and figured out how to make my hair presentable in a way that I liked.

It's such a small thing, but I know for me, when I became able to do my own hair in a style I like it was a great moment of freedom and independence. So here's me doing my own hair. I'm hoping that having this video on YouTube will help some other curly-haired quad someday. 😊

Mixed Signals - Autonomic Dysreflexia

As I've said before, I never lost all sensation after the accident. The majority of people with spinal cord injuries lose all sensation below their level of injury, so technically I shouldn't have any sensation below my chest. However, my injury is incomplete, meaning my spinal cord was not completely severed. In my case, that means I still have sensation throughout my whole body, but it's imperfect. I don't feel pain at all on my left side (below my chest) and only a nominal amount on my right. I can tell if someone is touching me, no problem, but not if someone is pricking me with a pin on my left foot. I have no sensation of hot or cold on my left side, and an odd, mildly painful perception of it on my right.

So, that doesn't sound so bad, right? Smack your leg into a wall and feel no pain. Get an ingrown toenail, but feel no discomfort. Except for...

(Dun-dun-DUUUUUUNNNNN)

Autonomic Dysreflexia

Turns out that even a paralyzed, desensitized body is a pretty astute thing. It can tell that something is wrong, even though it can't identify what it is. But it REALLY doesn't like not knowing what's wrong. So, for instance, I had an ingrown toenail at one point and I put my sneakers on -- my body FLIPPED. THE HECK. OUT.

Dysreflexia can come on in a variety of ways. With the ingrown toenail, it was intense nausea. At other times it's been an insane pounding headache that aches in waves across my head and the bones of my face, loud ringing in my ears, a flushed face, and strong tingling all through my arms, legs, hands, and feet; often a combination of 2 or more of those at once. The one thing it always does is skyrocket blood pressure.

My blood pressure has always been below 120/80, but since the accident it's been much lower. Spinal cord injury generally lowers blood pressure for a while, but then it will stabilize after a few months. Mine never has stabilized, and I continue to need medicine to raise my blood pressure before I get up in the morning. (I was curious the other day and took my blood pressure before I took the meds. 85/58, no joke. I've had a doctor suggest I ADD salt to my diet.)

ANYWAY, all that to put this into perspective: the last time I was dysreflexic, my blood pressure was 185/130. 

Dysreflexia can happen when there's anything "wrong" that your body can't identify, most commonly a full bladder or bowel issues. Big things can set it off, of course, like spilling boiling water on your legs; but, small things can do it too. For someone with a complete injury who has no sensation at all, even a wrinkle in the fabric of their shirt that their body doesn't like can get it going. Once it's started, it's then up to you to figure out what's causing it and fix the problem; as soon as you do, the dysrelexia subsides in moments. In the case of my ingrown toenail, as soon as I took off my shoe and sock, the nausea completely disappeared in about 30 seconds and my BP was normal again. It's pretty trippy.

So next time you stub your toe, try to be a little grateful for the pain! Your brain and body know exactly where and why you're hurting and are making sure you know too. It's a blessing in disguise. 😉

TMI Talk

A person with a spinal cord injury (SCI) not only loses the ability to walk, but all function and control below the level of injury. This diagram shows the levels and what is affected by an injury in each. My neck was broken at the C6/C7 level, so everything there and below was affected.

Way down there at the bottom, you'll see that it says "Bowel, bladder."

Just so you know, if you're opposed to TMI stuff, stop reading now.

Before my accident, I just assumed people in wheelchairs would just go in the handicapped stall, get onto the toilet somehow, and do their business like anybody else. Yeah, not so much.

#1. Most quadri- and paraplegics use intermittent catheters inserted into the bladder through the

urethra roughly every 4 hours. For REALLY TMI reasons I won't go into, I have a suprapubic catheter, which is a catheter tube that goes through my belly into my bladder. The other end attaches to a tube with a bag on the end that I change twice a day. During the day I use a smaller bag that I attach to my lower leg with straps. I empty it as necessary throughout the day directly into a toilet or into a bottle if we're on the road or at my mom's or aunt's where I can't fit into the bathrooms. At night, I change to a larger nighttime bag that I don't have to worry about emptying until morning.

#2. Spinal cord injury leaves a person with little to no control over when they have a bowel movement. Problematic, right? To avoid accidents, we have to do a bowel program daily or every couple of days. Daily for me. ChristopherReeve.org describes it this way:

The program usually begins with insertion of either a suppository or a mini-enema, followed by a waiting period of approximately 15-20 minutes to allow the stimulant to work. After the waiting period, digital stimulation is performed every 10-15 minutes until the rectum is empty. 

As a quad, I need tools to help me do this, namely a suppository inserter and a digital bowel stimulator. Or as Reanne, the lady who trained me on doing my bowel program independently called them, "party sticks." 😄

So now you know! There are lots of odd things about spinal cord injury, but I'm grateful that someone figured out how to manage this stuff!

Will I ever walk again?

A few weeks after the accident when I first went to TIRR, during my entrance evaluation a therapist asked me what my goals were while there. I'm pretty sure I said something like, "Uhhh, well, I mean, I want to walk again." I was still pretty fresh from the wreck, I had a neck brace and a very fractured scapula, and I had no real idea of my prognosis. I had heard of spinal cord injuries, but I couldn't really resolve it in my mind that THAT's what I had. It hadn't clicked that the thing that keeps people in wheelchairs their whole lives, THAT was what had happened. My friends and family all said they were sure I'd be up and walking soon, and I thought for sure they were right.        

In the 3 weeks I was there at TIRR, my therapists very kindly but plainly let me know that I had the kind of injury that could take up to two years to heal if it was going to, but which might never heal at all. My job was to "hope for the best, but prepare for the worst." I learned that the thing about physical therapy is that while it's awesome, it's limited. Therapists can work any muscle that has return (some function restored to it), but when there's no return naturally, there is very little a therapist can do to force it. Some research suggests that electro stimulation can help as well as bearing weight on the paralyzed muscles, but it's ridiculously far from a guarantee. After that stay at TIRR, I went to my mom's house for 4 months to give my neck and scapula time to heal enough to allow me to bear weight. While I was there, I watched my family shoulder the burden of my care, which took a great toll on everyone involved, while I sat around feeling virtually useless, unable even to sit up unsupported on my bed.

He

When I went back to TIRR, I had a very different set of goals in mind. I wanted to learn how to transfer with a slide board, dress myself, manage my own bodily functions (a subject for an upcoming post), push a manual chair, cook, and get on with the functions of daily life. I wanted to build my arm strength and practice using my hands. I wanted -- needed -- to learn how to use my  body as it was, not as I wanted or hoped it would be. My amazing occupational therapist Katie and physical therapist Adele worked their butts off with me, and though I didn't leave TIRR completely able to do everything I needed to do, I had the building blocks. I can never show them the gratitude I feel for all they did. All it took from there was practice (and a lot of patience on Ty's part!).

The question I get asked most by old friends who don't see me often is something along the lines of, "So how's physical therapy going? Can you walk yet?" The answer is no, and barring some serious medical advances, I probably never will. What's more, I'm not actively trying to do so. I am working toward getting a job and a vehicle I can drive myself. I'm looking forward to learning more and more things I can do.

I have a husband and two little boys who need me now, not just at some theoretical future time when I can walk again. If I could get all my friends and family to understand anything about me, it would be this: I am ok with my disability. There are things I miss from before and a few things I regret I won't be able to do, but overall, I know there are more possibilities than impossibilities.

So would it be great to walk again? Sure. But I've got more important things to do.

 

I'm a Spazz!

Yep, I'm a spazz. Spastic? Spasmodic? What I mean to say is my body has lots of spasms.

Imagine my surprise as I was laying in bed in the hospital a week or two after the accident when a leg I could not consciously move jerked a bit all on its own! At first we were excited, thinking it a sign of recovery. But we learned that spasms are almost always a side effect of spinal cord injury. Weird, right?

Here's an example of a couple types of spasms I get on a daily basis:

Some spasms are good, and others suck a lot. Clonus, the one that makes my legs bounce, is a serious pain in the patookis. It usually happens when the ball of my foot makes contact with the floor or my footplate before my heel, and can make transferring hard. It also sometimes kicks up when I go over bumps, which can be a real problem in parking lots. My legs can bounce so much that my feet fall off the footplate, so I have to stop in the middle of the parking lot to fix them. I have a tray I keep on my lap a lot so I can hold things there, and more than once, clonus has made me drop most of what's there, or spill water or hot coffee on myself and anything on my lap (like my phone!).

Other spasms are beneficial. I can usually trigger one in my upper abs that helps me sit up in bed. The ones in my legs I showed you in the video are great for getting my feet up onto the bar under the table just to change my position.

Here's the explanation of why these spasms happen, but boiled down, crazy things happen when you screw up your spinal cord! 😉

Do I Need Help?

How I get things off of high shelves:

Method 1: Bat my eyes at someone tall, dark, and handsome (if it's Ty; otherwise, I just ask politely).

Method 2: Give a short person a boost.

(Seriously, kids can be so USEFUL sometimes)

Method 3: Decide I don't need it that badly and grab the marshmallows from the lower shelf instead.

All three of these methods get used on a fairly regular basis.

One of the most common questions I hear when I'm out and about is, "Do you need help?" It's come to be either the best or the worst thing I can hear, depending on the situation. The short answer is, well, sometimes I do, sometimes I don't. Obviously, high shelves present a problem. Ramps that are steeper than ADA regulations are an issue. Bathroom doors so heavy that I can't hope to open them from the wonky position I have to be in to do so are a pet peeve. If you see me in any of those situations, by all means, ask if I need help. Don't let me get squished by that door. 😄

The question gets frustrating when people ask it at times I've got it covered. I'll be getting into the car and someone will walk up, unbidden, with pity in their eyes; "Do you need help, sweetie?" Uhhhh...no? Elderly church ladies, barely moving on walkers will see me sitting, minding my own business and ask. Even worse is when they don't ask and just assume. I had a lady just about break her neck to push an elevator button for me, then get on ahead of me to press the floor button too (ironically enough, she was getting off on the second floor and I was getting off on the first, so she ended up creating MORE work for me since I had to get off to let her off, then get back on before the doors closed). And I swear, I KNOW these they're are just trying to be good people, and I don't hold anything against them. However, the assumption that because I'm in a wheelchair, I obviously can't do things for myself (like push a button?!?) is, frankly, insulting. My occupational therapist at TIRR didn't work her butt off with me for 6 weeks so I could constantly let other people do everything for me. 

I may not speak for all people with disabilities, but in my case, if I need help, I'll ask. I just don't have that much pride. 😉 

To take it a step further, if you haven't seen this TED Talk by Stella Young, PLEASE go watch it. It speaks straight to my heart. ❤️

What Quadriplegia Means

I've had many people tell me that they don't think of me as a quadriplegic because I can move my arms. I'm totally there with you. During my first stint in rehab, I saw my diagnosis written down for the first time and asked my physical therapist, "I'm a quadriplegic?"

Quadriplegia simply means that a spinal cord injury (SCI) has affected all 4 limbs in some way. I'd always believed that quadriplegics couldn't move their arms at all, and some of them really cannot. Even some people with injuries at the exact same level as mine have different levels of function. In fact, at TIRR I met a successful Houston lawyer with an injury at the C6/C7 vertebrae (where mine is) who can't move or feel anything below his neck! And I met others who, like me, can move their arms, but can't feel their legs or move their fingers at all.

I'm lucky in that I am one of those who can move their arms. I've also got an incomplete injury, meaning that some of my function has been restored. I have sensation and a little movement in my legs (more movement on the left, more sensation on the right -- the right side can feel pain and sort of feel temperature, and the left can wiggle a little; I can wiggle my toes and feel touch on both sides), use of my triceps, and a little use of some of my fingers. See?

I have tools to help me do things I need to do.
These gloves are called Gloves for Life, and they help me push my chair, open jars, put on socks, and transfer (i.e. move from chair to bed, chair to car seat, etc.) more securely.

These utensils are called Dining with Dignity, and they help me eat in a much more natural position.

This is how I often hold a pen to write:

Plus, I have a whole bunch of kitchen tools with little rings on the back of them so I can peel vegetables, cut herbs quickly, and even zest a lemon or lime. I also have a knife with what looks almost like an axe handle so I can slide my hand in and chop (none of which are clean so I can take picture of them 😉).

Basically, I envy paraplegics and their hand function. But thanks to my awesome therapists at TIRR and just sheer trial and error, I can do most of the things I used to be able to do with my hands. I seriously miss French braiding, though. 😊