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!

No, I’m Not Okay!

There’s nothing covering my left shoulder blade except a few paper-thin layers of skin.  Twenty-some odd years ago, a plastic surgeon moved the trapezius muscle that’s supposed to be there over to the center of my neck/upper back and used it to cover an incision that wouldn’t heal.  In its place is skin taken from the back of my left thigh. 

With no protective padding of any kind, that area is, to say the least, exceptionally sensitive.  Even the lightest touch hurts -- it feels as though the bone itself is being prodded and poked.  Putting pressure on the scapula is so excruciatingly painful that it nauseates me.  If the pressure lasts too long or is caused by a solid, unforgiving surface, the grafted skin will open.

Now picture this scene.  The plane has landed at my destination, and I’ve just transferred from my seat into the ancient, high-backed aisle chair -- the one with that’s got nothing but grey metal above the thinly-padded back rest.  As soon as the last strap is buckled, the airline employee who brought the hard, narrow chair to me tips it back 45 degrees, slamming my unprotected shoulder blade into the bare metal of the backrest.  My eyes fill with tears, and I utter a sharp cry as the pain-induced nausea engulfs me.  The longer he keeps me flat on my back, the worse things become for me. 

I try to let him know what the problem is, to explain that this position is unacceptable because it makes me feel as though a butcher knife has been plunged into my shoulder blade and is slowly being twisted around.  But he’s already decided that the tears and the sounds I’m making are because I’m scared, so instead of listening, he’s busy replying to what he thinks I’m going to say.

“You’re okay, you’re okay.  I understand.”

“No, you don’t understand!  I’m in pain -- severe pain.  I can’t stand to be tipped back on my…”

“I understand.  You’ll be okay,”

It infuriates me when TABs (people who are Temporarily Able-Bodied) do this.  What they intend as reassurance is actually nothing more than thinly veiled condescension -- by disregarding what I’m telling them, they’re substituting their judgment for mine and sending a clear message that I couldn’t possibly know what I’m talking about. 

I wish I could say that not being listened to was an infrequent occurrence,  but that’s not the case.  There’s a widespread perception among the general public that the wheels that I use to get around are a substitute for my brain instead of my legs.  Not only do people stop listening to you when you use a wheelchair, they also stop talking directly to you and speak to your companions about you.  When this happens, it explains a great deal about how and why people with disabilities became known as “invalids.”

Sadly, it’s not just uneducated strangers that decide they know better than I do what’s good for me.  I’ve had friends and family members to me not listen to my objections that I wasn’t in the right position to transfer.  Doctors and nurses have sworn to me that some medical device or another that I knew to be malfunctioning was working just fine.  And co-workers have told me that I really didn’t need to take a break or be on those pain meds if I would just push myself a little more. 

Having been an almost-TAB for many years, I know that my protests that I’m not okay would never be summarily dismissed the way they are now. At the first sign of my distress, everything would stop, and those around me would work with me to make sure everything was all right before proceeding.

I know I’ve changed since then, but those around me have changed too.  The difference?  It’s my body that’s changed, but it’s their attitudes toward me.  And you know what?  The way it makes me feel is not okay.

I only wish they would listen when I tell them that.

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.

An Open Letter to My (Currently) Med-Free Friends

Dear Med-Free Crips with Chronic Pain,

I truly appreciate your commitment to remaining med-free for as long as possible. Believe me, I completely understand why you don’t want to use pain medications unless absolutely necessary. As your friend, I hate it that you have to hurt at all, but at the same time, I’m happy that you’re able to avoid all of the negatives that go along with them. The stigma, cost, and side effects that come from using narcotics to manage chronic pain, while not as devastating as the pain itself, can still be heavy burdens to bear.

What’s harder for me to appreciate, however, are the arguments that being med-free is all about having a strong will, successfully using “mind over matter” techniques (e.g. positive thinking, “blocking” out the pain, distraction), and taking the more difficult path, and that it has nothing to do with how severe one‘s pain is.

Such statements are troubling not because of what they say about the people who don’t yet use pain medications, but because of what they infer about those of us who do: that we are taking the easy way out. That we are less focused and less disciplined. That we lack willpower.

I hope you can believe me when I say that I’m not trying to dismiss or make light of your pain, or how you choose to deal with it. What I am trying to do is help you understand is that it’s hurtful and insulting to have these negative, inaccurate inferences about those who need narcotics to manage pain brought up again and again, and that from my experience, the severity of the pain does affect how well those “mind over matter“ techniques work.

You see, I was once where you are now -- able to successfully cope with the pain that’s been my ever-present, unwanted companion for years without taking any medication. I kept busy, got adequate rest, and “talked” my body out of succumbing when the pain flared. I practiced all of the same things I do now -- controlled breathing, progressive relaxation, immersion in distracting tasks. And for a long time, I managed to get by.

But as time passed, the tools that I’d successfully used for so long became less and less effective -- despite spending more time practicing my breathing and relaxation techniques, and throwing myself into my work and hobbies, I was getting almost no relief, and the little bit that I did get wasn’t lasting as long. Finally, the day came when I wasn’t able to get enough relief on my own, and I had to accept that I now needed to use medication -- in my case, narcotics -- in order to have any quality of life. It was a huge hit to my self-esteem. I took great pride in my ability to use nothing but my mind to keep the pain from crippling me -- relying on pain drugs made me feel weak, angry, and embarrassed. I thought it meant I had lost my drive and determination.

But the more I thought about it, the less sense that made. My basic personality hadn’t changed -- I was still the same stubborn person with the same positive outlook on life. I was still able to use my “mind over matter” techniques to manage stress -- in fact, getting relief had become easier, not more difficult. And I knew in my heart that my decision to finally start using pain meds was anything but easy. The only possible explanation for this change was that the pain had become so severe that even my most skilled use of positive thinking or “blocking” couldn’t keep it at bay.

That’s not to say that I’ve abandoned those techniques now that I use narcotic pain meds. Quite the contrary, in fact -- it’s those very skills that now enable me to keep my use of pain drugs as low as possible.

And that’s why I have such a strong negative reaction when I hear you declare that being med-free is all about asserting mind over matter -- not because of what it says about you, but because of what it infers about me.

Butte Münsch, or How Dare You, Part Two

Well, my friends, it turns out that this HipCrip ain’t so hip after all.

Remember Mark, my friend with ALS for whom I made an impassioned defense after his doctor declared it would be a waste of resources to treat when he was admitted to the hospital in Butte, Montana? Well, it turns out that neither Mark nor the doctor really exist.

Thanks to some impressive sleuthing by some very savvy (and very real) folks at the web site where I got to know “Mark”, it was discovered that MarkPALS was just one of many fake personas created by a woman as part of an elaborate scheme to gain attention by feigning illness or a disabling condition. Disturbingly, this wasn’t the first time this twisted woman had posed as a person with a disability -- she’s pulled similar scams at this and other web sites as far back as ten years ago.

I feel more than a little naïve for not being hip to this case of Münschausen by Internet. There were signs, of course, that I can now see clearly with the advantage of hindsight but missed or disregarded at the time. But it helps ease my doubts about whether I’ve lost some of my usually spot-on gut instincts that I wasn’t the only one who fell hook, line, and sinker for the web of lies spun by this Butte Münsch -- a LOT of folks have come forward to say that they, too, had become emotionally invested in “Mark” and his “family.”

Even though the discovery that there is no such person as Mark has left me discomfited, I’m not at all embarrassed about having made my “How Dare You” post. The story of MarkPALS’ illness and hospitalization may be pure fiction, but the horrific attitude expressed by the imaginary doctor -- that there are people whose quality of life is perceived to be so poor that they should not be treated -- is all too real. I’ve experienced it personally, when, without ever discussing the issue with me, a medical professional indicated in my hospital chart that I was DNR (Do Not Resuscitate), and have had several other people with significant disabilities tell me of similar experiences. The scenario that sparked my post was fake, but my outrage over it is real. For that reason, I’m going to keep that blog entry up, but update it with an appropriate introduction.

Given that this whole situation has reignited my outrage, it’s only appropriate that I end this the way it started.

There’s a woman in Butte, Montana who’d better than whatever god she prays to that she’s several thousand miles away from me, because she is now a marked woman.  This psychic vampire pretended to be someone with a severely disabling condition, insinuated herself into the lives of a lot of good-hearted people, and preyed upon their feelings without regard for the emotional devastation her actions would cause.

To quote Eric Cartman, “I.Am.So,Pissed.Off.Right.Now.”

A psychiatrist has dubbed this Münschausen by Internet, but I call it unmitigated gall.

This woman spent years creating online characters that would garner sympathy and make her feel important, not caring how her artificial dramas affected real people. In doing so, she not only stole the time and energy that these real people invested in her fantasy world, she left in her wake an epidemic of self-doubt, sorrow, and distrust.

But it doesn’t make me sad when this happens.  It makes me angry.

So, Butte Münsch, you are on my list of those who will be the first up against the wall when the revolution comes.  And as the blindfold is tied around your eyes, you will hear my voice asking how dare you make a mockery of the real struggles faced by people with chronic or disabling conditions by faking a serious disability? How dare you come into my community to feed upon the kind and caring nature of my friends? How dare you use your utter lack of a meaningful life in the real world as justification to emotionally rape hundreds, perhaps thousands of people, using the Internet?

How dare you.

Pure Pleasure

It was a moment of bliss -- an idyllic point in time when all was right with the universe.  Past and future ceased to be as pure pleasure nourished my body, mind, and spirit. 

It’s a safe bet that there aren’t many people who feel that way about laying down in a hospital bed.

There was nothing special about the bed itself.  It was a typical “old school” twin bed -- replete with a plastic-coated mattress, side-rails that ran the full length of the bed, and a pair of well-worn hand cranks that stuck a little at the 3 o’clock position each time they were used to adjust the height of the head and foot of the bed.  Like the hundreds of other beds filling the rooms of the aging hospital, it was made up with hospital issue linens -- two white flat sheets worn thin from years of use and washing in hot water and bleach, each tattooed deliberately with the thick black letters “UMH” and inadvertently with small, faded bloodstains, ghostly reminders of the countless others who once lay between them hoping to rest, heal, and go home to their own bed.

The one thing that made this bed different from all of the others was the pillow.  Instead of the standard issue, shapeless, thin hospital pillow with the plastic casing that crinkles loudly with each movement, no matter how gently executed or subtle it was, waiting for me at the head of the bed was *my* pillow.  My boyfriend had brought it for me after slipping it into my favorite freshly laundered cotton pillow case, smooth and soft from years of use and rich with the scent of home.

I couldn’t see any of this at the time, though, even though the bed was within an arm’s length of me.  The only sights within my field of vision were the same slightly yellowing ceiling tiles I’d been staring at for the last six weeks, two hours at a time before being flipped over, like a pig on a spit, to spend two hours staring at the well-worn floor tiles and the footwear of those who ventured into the corner of the room I shared with two other patients on the neurosurgical floor of the hospital.

As I waited, my anticipation building in time with the activity that around me, I gripped the edges of the Stryker frame one last time.  After so many weeks, I’d finally become accustomed to how narrow it was -- how I needed to press my arms tightly against my sides in order to rest them on its metal edges..  I remembered the early days and how still and silent I lay, terrified that if I moved, I would crash to the floor.  I’d suffered for years from a form of vertigo that made me feel as if I was suddenly falling out of bed, no matter how much mattress stood between me and edge -- how in the hell would I ever survive my time on something so narrow and seemingly flimsy without being in a constant state of terror? But as the days passed, the width of the frame became less and less of an issue, until I somehow became acclimated to laying, and sleeping, on something barely wider than my hips.

And then it was time. 

The crew of nurses had finished all of their preparations.  The Stryker frame was pushed up next to the freshly made up hospital bed, and the complex tangle of cables and weights used to hold my spine steady as it healed were carefully disconnected from my halo. (The traction weights would be reattached to the halo once I was in the bed.)  When they were satisfied that it was at last safe to move me, my favorite nurse, Marian, leaned over me from my left, squeezed my hand (she was one of the few nurses who could remember which of my arms could still feel pressure), and, with her eyes dancing with excitement for me, asked if I was ready.

“You have no idea how ready I am.  If I never see another Stryker frame, let alone find myself doing an involuntary horizontal pirouette while sandwiched between two cheesy remnants of discarded WWII army cots, it will be way too soon.  Let’s do this.”

Marian gave a quick glance in the direction of each of the three nurses she’d recruited to help with the transfer, then counted off, “One.  Two. Three!”

After a few seconds during which I seemed to levitate, it happened.  I was in a real bed.



I sank into the mattress with a contented sigh.  After laying for so long on little more than wide strips of canvas, it felt deep and plush, and at that moment I would have sworn on my mother’s life that it was stuffed with goose down and clouds.  At long last, my head was cradled by my own pillow, soft and familiar, a small slice of heaven even though the halo and the bolts that secured it to my skull prevented me from melting into it as completely as I would have liked.  But nothing compared to the wonder of having acres of mattress on either side of me.  I couldn’t stop moving my hands over the vast expanse of cool sheets that lay between me and the edge of the bed, marveling at how big a twin-sized bed really was.

No bed has ever felt so good.

How Dare You

Addendum (March 25, 2010):  Since writing this post, it was discovered that the person I knew as Mark, about whom this was written, was nothing more than a figment of the imagination of a woman who feigned having ALS for the purpose of getting attention and sympathy.  "Mark" is apparently not her first fictional identity, nor do I believe he will be her last.

Despite the discovery that the entire scenario described below and character at the center of it are fictional, the outrage I expressed is real, so I've decided to let this entry stand.

For more about the revelation that there is no Mark, please read my follow-up post: Butte Münsch, or How Dare You, Part Two

---

There is a doctor in Butte, Montana, who’d better thank whatever god he prays to that he’s several thousand miles away from me, because he is now a marked man.  This doctor, supposedly a practitioner of the healing arts who swore an oath to “first, do no harm“, decided earlier this week that it was time for one of the loveliest, most vibrant men I have ever known, and one whom I’m truly honored to call my friend, to die.  To make the effort to prolong my friend’s life, he implied, would be “a waste of resources.”

To quote Eric Cartman, “I.Am.So,Pissed.Off.Right.Now.”

All the doctor knows of my friend Mark is that he was admitted to the hospital unconscious with raging fever from an undetermined infection, and that he has Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gehrig’s disease.  ALS is a progressive disease that robs its victims of their ability to move, to speak, to eat, and to breathe on their own.  There is no cure, nor is there a treatment that can halt the progression of ALS.  It is a fatal condition. 

The fact that Mark is in the advanced stages of ALS was all this doctor needed to know before he told my friend’s family that it wasn’t worth the effort to try to treat him and try to save his life because, in the eyes of the doctor, Mark doesn’t any semblance of a life worth saving.

It didn’t matter to this this doctor that Mark is an incredibly witty, smart, engaging man who thinks, dreams, lights up a room with his presence, loves and is loved.  The doctor judged the value of Mark’s life by what his body could not do, and found him wanting.

It’s not the first time I’ve encountered this attitude from medical professionals -- it’s something anyone with a disability will face, to one degree or another, at some point in their life.  It’s happened to me -- the worst example was when a DNR notation was slipped into my hospital chart even though no one ever discussed the subject with me.

But familiarity with this attitude that we are somehow less deserving of the best care available because our bodies are damaged in some way doesn’t ease the blow when it happens.  It’s a kick to the gut to be reminded that others, especially those charged with managing your care, have already decided that your life is so inferior that you’d really be better off dead.

But it doesn’t make me sad when this happens.  It makes me angry.

So, Dr. Butte, you are on my list of those who will be the first up against the wall when the revolution comes.  And as the blindfold is tied around your eyes, you will hear my voice asking how dare you decide who is and isn’t worthy of saving?  How dare you pass judgment about the quality of a life, or the contributions someone adds to the world, based only on their physical being?  How dare you decide someone should be left to die without ever knowing anything of who that person is?

How dare you decide that my friend Mark was worthy of anything less than the best you had to offer?

How dare you.

Post Script -- Thanks to the advocacy and tireless efforts of his wonderful family, Mark regained consciousness.  The first thing he did after waking was crack a joke.  I hope the last thing he does before leaving the hospital is to rip Dr. Butte a new one, provided there’s anything left of the “good” doctor after Mark’s sister is finished with him.

How Do They Do It?

I’ve been reading a lot of new blogs lately.  For reasons it doesn’t take Freud to figure out, I’ve long been obsessed with all things medical, and lately I’ve been getting my fix through the blogs of ER doctors and nurses.  Besides the similarity in subject matter, I’ve noticed another trend among these bloggers: more than half of them are posting more than 400 entries a year.

How do they do it?

These are people with full-time jobs.  And not just full-time jobs, but hectic, full-time jobs -- the kind that keep you on your feet the entire time you’re there, where lunch and bathroom breaks are rare.  Many have families and, if they’re not embellishing their profiles, lead active lives outside of the time they spend in the ER.  How do they manage to compose and upload more than a blog post per day when I -- unencumbered by either employment, bi-ped children, or a life outside of my house -- have to work at making a dozen posts a month?

There’s an old adage that says if you need to get something done, delegate it to someone who’s busy.  Perhaps it’s the same with blogging -- those who have the least amount of free time are the best at keeping their blogs up-to-date.

Maybe it’s because they have more to write about than I do.  They go to interesting and challenging jobs every day where they talk to coworkers and patients and their families.  My gimpy body, on the other hand, keeps me trapped at home, talking mostly to the HipHubby, the cats, and random strangers on the Internet.

It couldn’t hurt that they have two fully functioning hands with which to type, and brains (presumably) free from the fog caused by narcotic and antispasmodic medications.  I was once a clear headed, two-handed typist, and I can tell you that combination of assets greatly speeds up one’s ability to string together a series of coherent thoughts and put them in writing.

So wait -- am I really saying that the reason these other bloggers are able to publish more than one entry a day and I’m not is because they’re vibrant, clear-headed, able-bodied professionals and I’m an addle-brained, housebound gimp with no life?

Maybe some questions are better left unanswered.

I’ve Had it With…(A Collection of Mini-Rants)

…my bowels. (Nothing like starting with way too much information.)  People with spinal cord damage have to devote way too much time to making sure their bowels behave.  After a long period of trial and error, I’d finally found a perfect formula for pooing -- a delicate balance of fiber and water, probiotics, stool softeners and prunes was working brilliantly for me.  And then I started taking a new med that causes constipation, and suddenly I’m back to square one.  No one should have to spend so much time and energy on shit.

…seeing my beloved HipHubby in pain.  His back is fried because he has to help haul my dysfunctional body and heavy wheelchair all over the place.  We’re having a hell of a time trying to get him pan relief because there are so many drug seekers out there claiming back pain, and because doctors just don’t/won’t understand that taking a one hour class on proper lifting techniques won’t relieve his back spasms or help us determine if there are alternatives to the way we currently do transfers, etc. that might be less damaging to his well-being.  It kills me to see him in pain 24/7 and know I am the cause behind it.

…people who complain of being in unbearable pain who claim they’ve tried *everything* when they haven’t.  It’s getting harder and harder to hold my tongue when people go on and on in one breath about how out of control their pain levels are, and in the next tell you that they’re “just not ready to”  or “don’t want to” try opioids, or can’t take X drug because it causes an annoying side effect that they don’t like.  Seriously, if you’re really hurting that bad, you’ll be willing to try anything, or put up with the dry mouth/constipation/drowsiness some meds cause, to get even a modicum of relief from the pain. 

…the Water and Power Authority of the US Virgin Islands.  This last week, we had SEVEN power outages in four days.  SEVEN.  Thankfully, they were mostly short-lived, but there’s no reason at all the electricity should be going out that many times on bright sunny days, especially since we pay so much for the power we do get.

…people who really believe that the reason other people don’t like them is because “they’re just jealous.”  That goes double for those who think others are out to get them because they’re so beautiful.  It‘s not jealousy -- people genuinely don‘t like you, probably because you’re obnoxious in some way.  Stop relying on the self-esteem preserving excuse your Mommy used to protect her precious baby’s ego and start taking a long, hard look at yourself to find out just what it is that makes you so unlikable to so many people.  Everyone will be better for it.

…six episode cable TV seasons.  It’s annoying when a show airs its season finale the month after its season premiere, then disappears off the broadcast schedule for 10-12 months.

…writer’s block.  I have so much to say -- why the heck can’t I think of any of it when I sit down at my keyboard?

…the Medicare Prescription Drug Plan donut hole.  For those who aren’t familiar with it, this little bit of public policy BS is a gap in prescription drug benefits that requires people on Medicare to pay ~$4600 out of pocket in drug costs before catastrophic drug coverage kicks in.  I burn through my initial benefits and fall into the donut hole by mid-March, when I have to cough up close to $1700/month for my medications.  ($1100 of that pays for just two prescriptions, the OxyContin I take for pain, and Advair, which I just started on again after three good years without it after my breathing took a turn for the worse last month.)

…not being able to sleep.  I’m so tired all of the time anymore it’s ridiculous.

Please Release Me, Let Me Go

No, this isn’t a tribute to the old Eddy Arnold/Jim Reeves song that I can still sing by heart after hearing my Mom play it over and over when I was growing up.  This is a plea to the invisible python that’s coiled itself around my midsection and is slowly, but persistently, crushing my organs and making my already difficult struggle to breathe all but impossible.

The name of the reptilian constrictor is the MS Hug.  Despite its name, this evil beast doesn’t limit its prey to people with multiple sclerosis -- it can strike anyone with spinal cord damage.  It attacks without warning by constricting the band of muscles near the bottom of the rib cage and hanging on, sometimes for days and even weeks at a time.  It’s strong and relentless, and so far undeterred by the numerous attempts I’ve made to rid myself of its painful presence and prevent it from ever hunting me down again.

I’d already had some breathing problems earlier today -- after laying on my side for an hour to try and get some sleep, my lungs filled with gunk, making me rattle and wheeze with each breath -- so the arrival of this evil python was even less welcome than usual.  The Hug attacked right after I sat up, making it seem as though it had been patiently laying in wait for me, ready to strike as soon as its target was exposed.  In a matter of minutes, it was tightly coiled around my body and giving no indication that it had any intention of releasing me from its death grip any time soon.

My ability to comfort ably breathe isn’t the only casualty of a Hug attack.  By causing my abdominal and back muscles to become rigid, this monster also impedes my ability to move myself around.  It’s not as though I have the greatest range of motion in my torso on my best days -- my spinal column is fused solid from the base of my skull down to the middle of my chest, which means I can’t bend or flex my upper body above my waist at all.  It looks and feels like I’m wearing a neck brace and body cast.  The Hug makes me feel as though there’s an actual snake wrapped around me, its thick body physically impairing me from bending at the waist.  Even someone with full strength in and control f their arms and legs would be hard-pressed to move about if they couldn’t bend or twist their torso, so you can imagine how difficult it becomes for someone like me who has almost no use of her legs and extremely limited strength in her arms.

I’ve tried just about everything I can think of to force this tenacious predator to release me from its grip, but nothing has brought me any relief.   It’s unfazed by heat and cold, immune to drugs, and unaffected by physical intervention.  It’s as strong-willed and single-minded as I am, and only it will determine the moment when it’s had enough and is ready to move on to its next victim.

Until then, I wait, my breathing shallow and my body stiff, waiting for the morning when I wake to find that this insidious beast has finally let me go and returned control of my body and breath to me as quickly and unexpectedly as it stole them away.

Post Script:  I swear I wrote an entry about the MS Hug in the earlier days of this blog.  But even though I can see it clear as day in my head -- there was a picture on the Michelin Man in it near the bottom of the page on the right -- I can’t locate the post here on the blog or anywhere in my original documents.  If anyone else remembers that essay, please leave a comment and let me know that I haven’t totally lost my mind.

The Fuss Over Family Guy

I just saw yet another rant against Seth McFarland and his show Family Guy.  Parents of so-called “special needs kids” (more on why I hate that term later), including ex-Governor of Alaska and expert hand-writer Sarah Palin, are up in arms about McFarland’s portrayal of a teenage girl with Down Syndrome, calling him a “hater” for “picking on people who can’t defend themselves.”

I just don‘t get their outrage, and find many of the arguments being put forth by the McFarland bashers hypocritical at best and highly offensive at worst.

At the center of the controversy is a scene in which Chris, the oldest son in the cartoon’s Griffin family, is out on a date with a teenage girl with Down Syndrome.  She admonishes Chris for being rude to her, citing as an example that he hasn’t asked her a single personal question all evening.  Chris responds by asking her what her parents to, to which she replies that her Dad is an accountant and her mother is the ex-Governor of Alaska.

The Foes of Family Guy (FFGs) have decided that one line of dialogue is a “kick in the gut” to Sarah Palin because it somehow mocks her son Trig, who has Down Syndrome. 

To quote Chris Griffin, “WHHHHAAAAAAAUH??”

I’ve watched the whole episode -- which is more than I can say for some of the FFG spokespeople out there.  Frankly, despite the usual irreverence shown toward everyone and everything, I thought the portrayal of the girl with Down Syndrome was extremely progressive and positive, especially in the context of a show known for taking political incorrectness to new extremes.

If these FFGs would put away their pitchforks, burning torches, and angry hounds long enough to take an objective look at the character and only the character, maybe they could look past the irreverent satire and see what I saw:  a self-confident teenage girl who attends the same high school as her non-disabled peers, and goes out on a date with a teenage boy who is absolutely smitten with her and finds her beautiful.  I should be so lucky to be mocked like that.

Come on, folks, let it go.  It’s a cartoon that takes shots at EVERYONE, including my crowd -- paraplegics and quadriplegics.  In his cartoon, Seth McFarland did what I’ve heard people with developmental disabilities ask for all along -- he treated them same as he treats everybody else, by using  stereotypes and misconceptions as the basis for satire.  If you don’t like that kind of humor, don’t watch it.  But for goodness sake, please stop acting as if the show and Seth McFarland have single-handedly set the public perception of people with developmental disabilities back a hundred years.

And while I’m on my rant, I HATE the term “special needs kids.”  The needs kids with Down Syndrome have aren’t special at all.  They have the same needs as everyone else -- an education that helps them grow and develop to their maximum potential; the opportunity to get a job, play sports, eat out at restaurants and go shopping; friends and family who love them; access to quality health care; and the right to live as full participants in their communities.  IMO, continuing to refer to people with developmental disabilities as people with “special” needs further segregates them, and does far more to stigmatize them than any 30 minute cartoon show ever could.

F.U.F.*

*Fucked Up February.

It's been a pretty shitty month so far.  My body is not cooperating at all with the many, many plans my brain has made (like finishing the many blog entries I've started and answering my email backlog), and I'm pretty discouraged by the whole bloody affair.

At the core of it all is exhaustion.  My prescription insurance plan made my never-ending battle to get adequate rest all the more difficult by deciding that it will no longer cover Ambien CR, the only thing that's enabled me to get even a few hours of sleep each night.  At $550 a month, there's no way I can afford to pay for it out of pocket, so I've been forced to use regular Ambien instead.  It's been a disaster.   Last night, I took 10 mg of regular Ambien at bedtime.  I was quite sleepy before taking it, so I was very hopeful that a good night's sleep would finally be mine.  I slept for just under 30 minutes.  Several hours later, still wide awake, I took two Advil PMs, and got another whopping 30 minutes of sleep.  If I'm lucky, I'll be able to lay down and catch a couple hour nap in the afternoon, but three hours of sleep  day isn't nearly enough to be functional or to keep my pain levels in check.  The exhaustion hits me in rogue waves, knocking me down, disorienting me, and sucking me down into momentary unconsciousness multiple times every day.  

After being remarkably stable for the last few years, my pain situation is getting worse, too, and it scares me.  There's several new forms of severe central pain that have been making regular appearances on the areas of my body that were the most affected by neuropathic pain after my second tumor surgery -- my upper left arm, shoulder, and arm pit, and right hip, thigh, and butt cheek.  These pains started out as intermittent, but are now constant and are not responding to the pain meds I take.  The worst is the raw, burning pain in my arm pit.  I confused it at first with a severe reaction to a clinical strength antiperspirant, but there's no irritation present and the pain gets much worse when anything touches that area.  I'm fearful that these are going to get worse, possibly even progressing to the level of severity I experienced after that second surgery -- what's now my benchmark for level 10 pain.  

As if all this wasn't enough to fuck me up enough to keep me from doing the things I want to do, my lungs have gone to hell for the first time since coming to the USVI.  I'm severely short of breath, my lungs are tight, and even though they sound clear, I'm still having frequent bouts of rattling, wheezing, and bringing up a lot of green gunk (without a fever or any other signs of being sick).  Getting air became so hard that I was hitting my rescue inhaler five or six times a day at two puff per, which is not only a poor management strategy, it can be downright dangerous.  It doesn't help that I'm also dealing with more frequent occurrences of the MS Hug, a spasm of the band of abdominal muscles at the bottom of the rib cage that makes you feel as though an anaconda is wrapped around your midsection and squeezing the life out of you.  After being off of it for the last few years, I've started using the strongest formulation of Advair again in the hope that I'll be able to breathe more easily without being permanently attached to an inhaler or a nebulizer.  I was a little relieved to know that I'm not the only one having breathing problems as of late.  My pharmacist was sold out of Advair when we went to fill the prescription -- he'd sold a month's supply in less than a week. 

Something's gotta give, and soon.  I can't keep going like this.

Even Two Bitchy Flight Attendants Didn't Ruin a Perfect Trip

It was bright and sunny in Puerto Rico on Saturday.  In fact, the only dark clouds that crossed my path during my visit to my physiatrist wore American Airlines flight attendant uniforms.

This trip made up for all of the problems we had during my last two visits to my physiatrist, and then some.  Great weather, no long waits anywhere, and we were in and out of the doctor’s office so fast (I was his only patient that day) that we were able to get back to the airport in time to catch an earlier flight back home!  Making that flight cut two hours of waiting time off of our trip and got us home before dark  You can‘t beat that with a stick.

Everything would have been perfect had we not been forced to deal with two obnoxious flight attendants -- one working the flight to PR, and the other deadheading our flight home.

Bitchy Flight Attendant Number One (BFA1, for brevity) was no stranger to me -- she worked a flight I took six months ago, and earned her moniker then.  On that trip, she and I engaged in a battle of wills over where I would sit -- she was adamant that airline policy dictated I sit in the window seat (so my gimpy body doesn't keep my able-bodied husband from accessing the aisle and saving himself in the event of an emergency).  I knew that was not policy, and I refused to move from my aisle seat (partly in principle, but mostly because it's not physically possible for me to drag myself in and out of window seats).  I stayed put, and she's been pissed about it ever since -- she hasn't even made eye contact with me since she stormed off down the aisle when it was clear she'd lost the battle. 

BFA1 recognized me as soon as I boarded the flight last Saturday, but continued to ignore me -- until it was time for me to get off the plane.

The aisle chair escort in San Juan was the evil opposite of the woman who helped me board the flight.  He didn't speak with me -- he talked to my husband instead.  He didn’t listen to my protests that I wasn't seated properly before starting to strap me into the chair.  And he didn’t respect my personal space -- he kept grabbing my arms and trying to force them where he wanted them to go, even if it was physically impossible for me to move that way.  BFA1 sat a few rows up, watching intently, as if my use of the aisle chair was the latest movie release and she was Roger Ebert on a deadline.

I was getting frustrated, fast, with my aisle chair escort and it showed -- those who know me well that I don’t suffer fools, gladly or otherwise.  After my fourth attempt to make him understand he was not to force my elbows against my body, I decided that since he wasn’t listening to me when I used my normal tone of voice, I’d make sure my escort heard me.  So I raised my voice, and stated unequivocally that he needed to stop grabbing at my arm *now*.

And that’s when BFA1 said it, under her breath, yet as clear as could be.  “What a bitch.”

I let it pass.  Her crappy attitude was not going to ruin my good day.  The HipHubby wasn’t as quick to let it go -- he wanted me to report her immediately.  (I didn‘t, and don‘t intend to.)  Given how upset he was over her inappropriate comment, I really admire his restraint when he encountered Bitchy Flight Attendant - The Sequel (BFA-TS) later that afternoon.

By the time we were ready to board the flight home, our moods were positively buoyant.  We’d been taken off stand-by and guaranteed seats for the earlier flight -- the only issue now was where those seats would be.  The gate agent listened to my explanation of why I needed to sit in the second row from the rear, but refused to reassign anyone, so we decided to do what we always do in these situations -- take the seats that work best for me when we preboard, then tell the passengers assigned to those seats to take our assigned seats instead.

There was only one tiny, little flaw in this plan.  The person assigned to my preferred seat was BFA-TS, and she was already settled in to it by the time The Hubby got on board to help me transfer when I made it onto the plane a few minutes later.

Although I didn’t know about this until we arrived back in St. Croix, it seems The HH had quite the encounter with BFA-TS.  After getting past the shock of seeing someone already sitting where I needed to be, my DH asked BFA-TS if she would please move a few rows up so his disabled wife could sit here.  She said no.  The HH explained that sitting in this row would allow me to avoid the long, painful trip up and down the aisle on the poorly-driven people dolly.  She continued to refuse, and no argument or appeal to her compassion would sway her.  After all. she already had already taken out her papers.  So I wedged my way into the very back row, and my DH wedged himself in next to me, and BFA-TS and her paper sat all alone, directly in front of us, where she could hear every whimper and word that left my lips.

I got a good laugh out of it when we landed and my DH filled me in on how self-centered BFA-TS had been.  I had mentioned to The HH several times during that flight home that this was a perfect day except for that bitch of a flight attendant, and I know BFA-TS heard it all.  Even though we both knew I was talking about BFA1, I’m really hopeful she thought I was talking about her.

Oh No, It Might Rain in San Juan Tomorrow

While I never really look forward to going to get my Baclofen pump refilled, I’m absolutely dreading tomorrow’s trip to Puerto Rico to see my physiatrist. It’s not because I’m worried that the airline will cancel our flight again, or because it’s an incredibly long day with a lot of exhausting transfers to and from my chair (which it is -- I average 26 transfers during every trip).  It’s because the weather forecast says there there’s a chance of rain in San Juan tomorrow evening.

During my last trip to this doctor, I had the worst experience with boarding a plane I've ever had, all because it was raining.

We were waiting to board the flight home.  A taxi to wheelchair transfer a few hours before had gone bad, and recovering from it had wiped me out physically and sent my pain levels soaring. Just as the airline staff member came to escort to the elevator that would take us downstairs for pre-boarding, the skies open up into an unrelenting downpour.

Boarding these island hopper prop jets involves walking/rolling across a couple hundred yards of  tarmac to reach the waiting plane, then climbing the stairs or using an aisle chair and a hand-cranked lift to board the plane, so the airline ground personnel decided to delay boarding in an attempt to wait out the rain. This decision to wait it out made the ground crew -- the only people clothed head to toe in heavy rain gear, by the way -- feel great, but left us "special needs" passengers and our traveling companions grow increasingly antsy to get to our final destination.

Finally, the ground crew reluctantly acknowledge that the rain isn't going to ease up, so it's time to go for it. Even though passengers like me who need to use their hand-cranked lift to get on the plane are usually allowed to board before the able-bodied passengers, for some reason the crew decide that tonight, I’ll be the last one allowed to take my seat.

When it’s finally my turn to head out to the aircraft, the crew member assigned to be our escort hands me an oversized umbrella to hold while another airline employee pushes me. Since I have to hold the umbrella high enough that it won't poke the person pushing me in the eye or obscure her vision, it's pretty much useless in terms of  keeping me dry.  And wouldn't you know it, lightning starts flashing across the sky as we're walking to the ift. I'm thinking, "Great, I'm about to get loaded into an all metal cage and slowly cranked toward the sky in the middle of a thunderstorm. Yeah, this sounds safe."  By the time we traverse the 150 yards between the terminal and the plane, I'm soaking wet and the night‘s being lit up by lightning every 90 seconds or so.

We arrive plane side to find that the aisle chair has been sitting out in pouring rain the whole time the rest of the passengers were boarding, and it is soaked. Since there's no way for the HipHubby and I to do a pivot transfer from my chair to the aisle chair under umbrella cover, we have to do it out in the rain.   I land square in the puddle that's formed on the seat. The whole time we're doing the transfer, we're being told by the our airline escort to hurry up -- not because of the lightning, mind you, but because he's worried about my wheelchair cushion getting wet!

The rushed transfer causes me to land askew in the aisle chair, which was not only uncomfortable, it ended up biting me in the ass -- er, elbow.

As soon as my bottom hit the seat, the crew jump into action to strap me in the narrow aisle chair.  Once I’m secured, the HipHubby scurries up the stairs to prepare to help me transfer while my escort tries to push me forward onto the lift. His aim is bad and the right front wheel of the chair drives off the lift’s access ramp, causing my right knee to bang into the edge of the lift gate. The airline crew member decides that since it's dangerous for us to be exposed to the lightning, he's going to turn me around, tilt the chair back almost 60 degrees, and load me onto the plane backward. As he does, airline employee #2 grabs me and forcefully attempts to tuck my right arm across my body, a position that it will not go into because that shoulder is dislocated. All the while, the airline staff are talking back and forth to each other in Spanish and not listening to anything I'm saying. The rain keeps coming down, and with me laying almost on my back in the aisle chair, I need to keep exhaling hard out of my nose to keep the rain water from entering my nostrils.

Sitting in the cold rain, strapped awkwardly into the hard, narrow aisle chair, it seemed to take forever for them to hand crank the lift up to the level of the plane door. The airline escort finally starts pulling me backwards onto the plane, but my right thigh, knee, and arm are scraped along the metal railings of the lift the whole way because I'm not sitting straight in the aisle chair. Cold and soaked to the skin now becomes cold, soaked to the skin and in pain.

The guy from the ground crew continued to drag me backwards onto the plane, and even tried to start up the aisle that way until he finally decided to listen to what I'd been telling him all along -- that I can't transfer to the seat if I'm facing the rear of the plane. After a lot of finagling between the tight corners at the back of the plane (it loads from the rear), including a lot of smashing my knees and feet into the walls and sharp corners despite theHipHubby's best efforts to protect me, I was finally able to head up the narrow aisle facing the right direction.

We're always seated in the second row from the rear, so it's a very short trip from the rear of the aircraft to my seat. Even so, I notice that I am the main attraction  -- more than a few passengers have turned around in their seats to watch the spectacle unfold. That sense of forced exhibitionism is the main reason I hate being the last person allowed to board.

After the HH helps me transfer to my seat, we notice that there is blood on his hand and shirt, and on the wall of the plane across the aisle from my seat. Turns out that the source of that blood is a gash near my right elbow that's bleeding pretty profusely. Time to update my status to cold, soaked to the skin, in pain, and bleeding.

God bless the flight attendants, who somehow managed to wrangle me a blanket and some first aid supplies while we waited still longer to depart (we had to sit on the tarmac for another half hour
waiting for the inclement weather to clear), despite the airline's efforts to eliminate all amenities as part of their cost cutting measures. Thankfully it was not raining when we landed on St. Croix an hour after we took off from San Juan, and getting off the plane went without a hitch.  American Airlines let me keep the blanket as a consolation prize. Whoop dee doo.

Wish me luck tomorrow.  And a precipitation-free day.

Silver Linings and Serendipity (Part 3 of ?)

The five years I spent helping to launch this new cross-disability advocacy organization were amazing and intense -- I learned so much (sometimes as the result of serious mistakes I made); met incredible people who continue to inspire and humble me; benefited from the guidance of several very wise, accomplished women; and truly contributed to improving the quality of life for people with all types of disabilities.

As had already happened so many times in my life, I found myself in the right place at the right time and benefited greatly from it.  My tenure as the executive director of this organization coincided with the heyday of Dr. Jack.  I was chosen to represent my organization and the disability community on the Michigan Commission on Death and Dying, which was created by the state legislature for the purpose of making policy recommendations about the issue of physician-assisted suicide, and co-authored the Commission‘s subcommittee report on procedural safeguards.  (The Procedural Safeguards proposal for decriminalizing assisted suicide received the majority of votes cast, although not a majority vote from the 22 members of the Commission.)  Several years later, I was one of 300 people with disabilities from across the country selected to participate in the National Council on Disabilities Summit on Disability Policy to help develop recommendations on how to change national health care policies to better meet the needs of individuals with disabilities.   My most enduring achievement came as one of the leaders of the coalition that lobbied for the introduction and passage of Michigan’s Wheelchair Lemon Law.

Interestingly enough, the experience during that time that had the greatest influence on my future didn’t take place on the job.  In early 1995, I developed a severe case of pneumonia and was off work for more than a month.  While out sick, I was inspired to log on for the first time to the still relatively new World Wide Web after reading article in “Mother Jones” magazine about the best sites online.  After my first hour of surfing, I was hooked, and I spent the remainder of my recovery time teaching myself HTML and building my first web site (a one page monstrosity loaded with links, graphics, and an appalling amount of annoying, blinking text).  I had no idea at the time just how beneficial this early exposure to this new online world would be.

After five years at the head of this small advocacy organization, the ever present stress from raising enough money to keep the staff paid and the programs running was taking its toll on my mental and physical health.  I missed being directly being involved in program work -- I wanted to get back to creating and implementing advocacy strategies and working on the front lines to get people to take action on the issues that directly affect their lives.  So when a prominent national consumer health care advocacy organization offered me a job working with state groups to improve their advocacy skills and strategies, I seized the opportunity and moved to Washington DC.

Silver Linings and Serendipity (Part 2 of ?)

One of my mentors at DMB and my roommate were both involved with an organization call The Michigan Citizen’s Lobby, which was an affiliate of Citizen Action. My work with the state student association got me involved with the national student association, which used a grassroots organizing strategy tool developed by -- you guessed it -- Citizen Action. The state student association gave me real practical experience with issue advocacy, and my connection with the folks at Citizen Action showed me that political organizing was a legitimate career choice.

It wasn’t long after that when my daytime role as mild-mannered number cruncher and my alter ego as a political activist clashed -- I took a day off of work to lead and speak at a state student association rally on the steps of the state capitol. When my picture made the newspapers the next day, my boss at DMB told me I needed to decide whether I wanted to work on the inside of the government, or on the outside.

That’s when everything changed. I just couldn’t see myself being happy making a career out of being a public administrator if it meant giving up my right to speak out, to do more than just vote to shape public policy and advance the causes in which I believe. It was at that moment that I didn’t just want to be on the outside, I needed to be on the outside. And with a little help from my mentor, I landed my first paid gig as a full-time activist and grassroots organizer and moved to Pittsburgh, Pennsylvania.

At that first job, I worked mostly on single payer health care and environmental issues. That work, along with the help of another incredible mentor, led to an appointment by the Governor of Pennsylvania to the Coalition of Northeastern Governors’ Source Reduction Council, where I helped develop and promote model legislation to reduce the use of toxic heavy metal in packaging and other environmental issues. But far and away the greatest opportunity afforded me by that job was going through an intensive training by the Midwest Academy’s Steve Max on organizing for social change (also the title of their bestselling organizer's manual).

After a few years in Pittsburgh, I got homesick for Michigan and started looking for a way to move back. Some long-time activists in the disability community there had received funding to launch a cross-disability (physical, mental, and psychiatric) advocacy organization, and flew me up to interview for the job of Executive Director. I was their first choice and was offered the job but turned them down, a decision I quickly came to regret when, only two weeks later, the conditions at my job in Pittsburgh took a huge turn for the worse. I was miserable, and I wondered out loud what the odds were that the person who accepted that job would suddenly drop dead so I could have a second chance at it.

Well, he didn’t drop dead, but he did decide to leave for a higher paying position only six weeks after starting work. Fortunately for me, one of the board members who interviewed me suggested they call me back to see if I’d change my mind. (Already had.) I couldn’t imagine that this could get any better, but it did -- in an attempt to convince that guy to stay on, the board offered him a 25 percent increase in pay and an additional week of paid vacation, and felt it was only fair to offer me the same(!) plus $500 to help defray the cost of my move, further proving that I am one of the luckiest people on earth. So back to Lansing I went.

Silver Linings and Serendipity (Part 1 of ?)

I am a true believer in the old adage that every black cloud has a silver lining.  The bigger the cloud, the bigger the lining.  I made a resolution this year to never lose sight of that.  This is the (somewhat long) story of how the tumor that was supposed to kill me instead led me live a most extraordinary and wonderful life.

In order to get at the spinal cord and remove the tumor, my surgeons first had to remove the backs of the ten vertebrae where the tumor was growing.  (This procedure is called a laminectomy.)  The laminectomies and radiation treatments I had after the first tumor excision weakened my spinal column and caused me to develop a severe (90 degree) front to back curvature of my neck and upper back.  The operation to stabilize the curvature and associated complications caused a four year gap between my junior and senior years of college. 

By the time I went back to school, the cost of tuition was way up and my eligibility for financial aid was way down.  My frustration with and anger about this led me to get involved in student politics at the university level.  I was elected Student Government (SG) Treasurer and during my term in office, I became active in the state student association.  At the end of my term as SG Treasurer, I ran for SG President.  I lost that election, but one week later was elected President of the state student association.

At the same time, the Governor of Michigan launched an Executive Intern Program.  The students chosen would spend ten weeks working directly with one of the members of the Governor’s Cabinet during the day and attending special classes with political leaders at night.  I beat out over 500 other applicants for one of these 22 full-time, paid positions and moved that summer to the state capital, Lansing, to work with the director of Michigan‘s Department of Management and Budget (DMB). 

The internship was an amazing opportunity.  Not only did it provide me with the opportunity to get a first class education is my first love, state politics, being in Lansing full time allowed me to immerse myself in the state student association, the office of which was located just down the street from the Capitol Building.  I really didn’t want my time in Lansing to end.  Luckily for me, it didn’t have to.  A permanent employee at the DMB decided to extended her leave of absence, and my bosses there offered me the chance to stay on.  Since the six credits I could get for the experience would give me enough to finish my degree in Public Administration and graduate, I jumped at the chance and made the move to Lansing permanent.

And then, serendipity. 

An Open Letter to Care Givers

As some who needs help with some of life’s most basic, and personal, tasks -- like bathing and getting dressed -- I want to thank you for providing me with the assistance I need to get these things done. For most able-bodied people, those are mundane activities, but to me, they would be impossible to accomplish without your help. I can’t tell you how grateful I am that you are here to help me accomplish the things I’d ordinarily do for myself.

That said, we need to talk.

Just because I am no longer able to do these things myself does not mean that I have forfeited the right to decide how they will be done. When it comes to anything that involves my body, I’m in charge. You may be the one who is performing the task, but that doesn’t mean you get to decide how that task is carried out.

It doesn’t matter if you understand why I want or need you to do things a certain way. I have very specific preferences about how things are to be done. My way may not make sense to you, but you know what? I doesn’t have to in order for you to get the job done the way I like it. It’s not important why I want you to open up the wash cloth and hold in in a certain way instead of crumpling it into a ball when you wash my neck -- what’s important is that you do it they way I want.

Yes, I realize that you may have always done it your way, that your way seems easier, and/or that your way may even work just as well as mine. But the fact of the matter is that this isn’t about you. It’s about me -- my health, my safety, my well-being, my comfort, my happiness. I don’t care if you think my requests seem strange, or that you think your way is better. This is not about you.

I realize you’re not a mindless automaton without valuable experience or knowledge of your own. Feel free to suggest other options, but don’t give me attitude if I reject your ideas. You’re also free to ask me questions about why I’m asking you to do things a certain way, but don’t get frustrated or angry if my answers don’t make sense. That kind of negative reaction makes for good sitcom material (the Archie Bunker-Mike Stivik “sock and a sock and a shoe and shoe” bit is one of my favorite television moments ever), but there’s no place for it in real life. I should not be made to feel bad about wanting things done the way I like, nor should I be asked to defend my preferences just because I need help doing them.

When it comes to the type of activities you help me with, there is no right way or wrong way to get them done. So when you assist me with anything I‘d normally do for myself -- whether you’re doing it because it’s your job or as an act of love -- show me the respect I deserve by doing it my way.

Paying the Price

One of the aspects of having multiple medical issues that I just can’t seem to come to terms with is that I now have to pay a price for doing normal everyday activities.

After being cooped up for the last two weeks battling an infection, I’d reached my tolerance of staring at the same walls all the time and needed to get out and see something -- anything -- different.

The HipHubby and I had been talking about going down to check out the Boardwalk in downtown Christiansted, so we headed there first. It’s not a bad place to take a stroll and look at the boats, but it’s definitely geared to tourist trade -- unless you’re interested in getting a meal or doing shopping for souvenirs or jewelry, there isn’t much else to do. We did spend quite a bit of time watching the critters that live in a shallow reef adjacent to the boardwalk -- there were some gorgeous, brightly colored crabs and oodles of tropical fish, including a pair of stunning bright blue fish that looked like a saltwater version of carp that were at least three feet long. Although the HH pushed me a great deal of the time (the power-assist aspect of my chair is dead, making it a 70 pound manual chair), I did self-propel quite a bit across the bumpy boards

After our stroll on the Boardwalk, I decided we should hit the “good” KMart and pick up a few things we need to put the house on the market. So across the island we went, where I proceeded to wheel myself around the store while we shopped. Fortunately, there wasn’t much on our list, so we were in and out in under an hour and then on our way home.

This little outing, which only lasted a few hours, has now cost me two days of extra sleep and more pain than I’ve had in the last two months.

It’s frustrating that just being normal comes with such a high price tag attached. It’s embarrassing and annoying to have to figure in large recovery periods for simply taking part if your own life. Not only can one activity -- especially if it’s any outing that involves transfers from my wheelchair in and out of the car -- cost you the better part of a week once you’ve accounted for the extra time you spend sleeping and nursing your body through the increased pain level, it can cost you relationships. Even your loved ones can get tired of having you go comatose for two days just so they could go out to dinner with you, and it takes a very rare and special friend to understand why you fall off the radar screen just because you decided to go to the grocery store.

I don’t mind paying with my body But paying the price with relationships -- that’s just too much to charge for leading a pseudo-normal life.