Being a Crip is a Full-Time Job

I was struck today by the realization that way too much of my time every week is spent doing crip-related tasks, i.e. things I wouldn’t have to do, or could take care of a of faster, if I wasn’t disabled. 

It was my meds that started this train of thought barreling down the tracks.

I take an insane amount of drugs every day -- between prescription and over-the-counter meds and supplements, it’s somewhere in the neighborhood of three dozen pills, some liquids, and a couple of puffs of inhaled breathing meds.  Somehow I’ve managed to work all this into a four-times-a-day dosing schedule, but when you add in the time it takes for me to refill the weekly pill boxes I use, get prescriptions filled, and most of all, the time I spend waiting for meds (especially pain meds) to kick-in, I spend a lot of hours dealing with drugs. (If any DEA officials, my doctors, or my pharmacist is reading this, please note that reads “dealing with drugs”, not “dealing drugs.”  Can‘t be too careful about that distinction these days.)

The big time suck, of course, is personal care.  I feel some days like I spend half my life tending to stuff that used to take me maybe an hour a day total.  Okay, make that an hour and a half -- I drink a lot of water and have a really tiny bladder, so I’ve always made more than the average number of trips to the loo every day.  In the before-chair days, I could jump in the shower, wash and condition my hair, shave the pits and legs, get out and dry off, apply lotion/makeup/deodorant, brush my hair, get dressed and be out the door in just under an hour.

These days I’m lucky if I can get in and out of the shower in 30 minutes.  The assisted transfers from my chair to my shower bench add a few minutes in each direction, as does getting some of my gimpier body parts *cough*righthandandarm*cough* to cooperate with what I need them to do.  Even taking Navy showers, necessary both because I can’t just step out of the shower spray to soap up and to conserve water, doesn’t seem to speed up the process.  One of the things I miss most about being a walkie is the ability to take a quick, unassisted shower whenever I feel like it. 

The time spent showering, however, is nothing compared to the time involved with getting dressed and taking care of non-bathing personal care and hygiene. (Did you hear that noise? That was the sound of every ’plegic reading this simultaneously saying, “No kidding!”)  The damage to my spinal cord means it takes longer for me to get dressed and undressed (even with some help), brush my hair and teeth (don‘t get me started on the subject of flossing), and putting on make up and jewelery.  And without revealing TMI, it’s geometrically increased the time I spend attending to the call of nature. 

All that’s probably intuitive.  But what most TABs (shorthand for temporarily able bodied) don’t realize how much time and effort I, and many people who use wheelchairs, put into keeping our skin healthy.  If you’re not diligent, sitting for upwards of 12 hours a day, every day, can do some serious damage to your body’s largest organ -- pressure, friction, trapped moisture, and the most-dreaded of all for me, wrinkles, bunches, seams and elastic, are all  bombs with hair triggers.  Add to that the problems that can result when you’re not able to tell if you’ve developed a blister or cut yourself, and you’ll start to get a picture of why I devote hours each week to checking for and trying to prevent skin breakdown.  It’s worth every second I spend doing it, though, because the primary treatment for pressure damage is staying off of the area until it heals.  An hour a day of shifting my weight off of this, lotioning that, and having a look at those other things beats the hell out of laying on my side in bed for weeks, months, or even years at a time.

The rest of the extra time comes from ordinary tasks like getting me and my chair in and out of the car, preparing food, etc.  Each activity may only take a few minutes longer than before, but those minutes can add up pretty quickly.

All totaled, I figure disability-related tasks eat up almost 40 extra hours of my time every week.  Who the heck knew being a crip would be a full-time job?

I stand sit in awe of all you ‘plegics out there, especially you quads, who also hold down a job and/or take care of a family.  I have no idea how you find the energy to do it all.

Quad Hands, in Haiku

Like wearing mittens
Every day, all of the time
But more frustrating.
_________________________

Trying and trying
To grasp a sheet of paper
Without crumpling it.
_________________________

With no sensation
You need to look and see if
It's still in your hand.
_________________________

“Get a grip on it”
Takes on a whole new meaning
When you have quad hands.
_________________________

I got it open
Using my own two hands. I
Didn’t need my teeth!

Spinal Cord Injury Envy

As awful as this may sound, every once and a while I get jealous of people who’ve become paraplegics and quadriplegics (‘plegics from here on in -- it’s less cumbersome to say and a whole lot easier to type) as the result of a spinal cord injury (SCI).

I’ll take a short pause here so those readers who feel the need to do so can express their disbelief and outrage that anyone would ever say such a thing before they (hopefully) continue reading.

It isn’t easy for anyone to deal with spinal cord damage, paralysis, and all of the garbage that comes with it. However, from where I sit, becoming a ‘plegic in the blink of an eye seems to have some distinct advantages over ’plegia that comes on incrementally as the result of a progressive, degenerative condition.

Advantage #1: The Possibility to Grieve and Move On
Everyone who acquires a serious disability will, at some point, go through the process of mourning what they have lost. When that disability happens in a heart beat, there exists the possibility to grieve the loss, come to accept it (even if that acceptance is uneasy), and get on with the business of living your life. This does not happen with everyone, nor does it necessarily happen quickly, but generally you only go through the grief process once.

With a degenerative condition, each new loss can start the grieving process anew. Just when you’ve finally come to accept the reality that you’ve lost your ability to walk and now need to use a wheelchair, you may find your hands have grown too weak to hold a pen, and it all begins again. When the changes occur in rapid succession, life can become one prolonged session of mourning.

Advantage #2: Things Can Always Get Better
While there are exceptions to the rule, most progressive conditions, as the name states, cause those who have them to go from their best to their worst. There may be plateaus of stability, and even time when you are able to recover some of what was lost in the last decline, but for the most part, it’s a downhill ride.

With a SCI, you pretty much start off at your rock-bottom. There’s always the possibility that over time, as the swelling of the spinal cord abates and the body tries to heal itself, that part of what was lost will come back. Working hard at maximizing what you’ve got almost always results in improving your level of functionality, which brings us to…

Advantage #3: Going to Rehab (Not the Amy Winehouse kind)
Rehab is boot camp for crips. It’s an individually-tailored crash course designed by a team of multi-disciplinary experts in SCI (including but not limited to physiatrists, nurses, urologists, therapists, mental health professionals, and even other people with disabilities) that helps prepare the newly-injured to live as independently as possible. Using a variety of therapies (physical, occupational, recreational, social, etc.), rehab teaches people with SCI how to do the activities of every day life, with or without assistance -- getting dressed, going to the bathroom, cooking, cleaning, grooming/hygiene, getting in and out of your wheelchair. It’s about building strength, endurance, and coordination, and to maximizing functional recovery, all under the guidance and direction of experts who know what you need to do, and work with you (and on you) to get ‘er done.

The vast majority of people who come into their ’plegia a little bit at a time, over a long period of time, never get the benefit of intensive rehab services. As a result, most of us end up just making it up, and making do, as we go along. We fend for ourselves, without the advice and guidance of professionals knowledgeable about SCI because we don’t know who those experts are or how to find them. Fortunately, the Internet has made it easier to find answers to our questions, but it’s a poor substitute for having direct access to a multi-disciplinary team of experts during the earliest onset of your ‘plegia and all of the challenges it brings.


I realize, of course, that seeing all these advantages isn’t really an attack by the green-eyed monster -- it’s buying into the a fantasy that the grass is always greener. I’m sure that somewhere out there is a quad survivor of an auto accident with her own list of reasons why becoming a ‘plegic in stages would be a lot better than waking up paralyzed.

The truth is that every ‘plegic, regardless of how we became that way, faces the same challenges: making -- and keeping -- ourselves as independent as possible; dealing with the “perks” of SCI/D (injury/damage) like central pain, bowel and bladder management, and spasticity; and living the life we want to live in a world that’s not always as accessible as we need it to be.

Truth be told, I’m actually quite okay with how my life’s played out. Of course there are rough patches (some rougher than another), but I always manage to get through them. I just need to stay focused on making the most of the time I have between the declines. If I can do that, I’ll be a lot less inclined to wonder if my life would be better on the other side of the fence.