Tuesday, March 30, 2010

Oh My God, Did *We* Kill Kenny?

The HipHubby and I played around with the South Park Character Creator this week.  Here's our South Parkian self-portrait.

Unfortunately, the program didn't offer wheelchairs as a character accessory, so I had to settle for standing next to a Timmy doll to represent my crip-ness.

Cute couple, aren't we?

(Can you tell from the HipHubby's costuming that he's an avid MMORPG* player?


**MMORPG = Massive Multiplayer Online Role Playing Game

Thursday, March 25, 2010

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.

Monday, March 22, 2010

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.

A patient being flipped on a Stryker frame.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.

Pure Pleasure

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.

Monday, March 15, 2010

Nine Times

Ms. Powerco:  “Good Morning, WAPA Outages.” That’s short for the Water and Power Authority, the Virgin Island’s utility company.

Me:  “Good morning.  Our power has just gone out for the ninth time in the last 24 hours.”

Ms. Powerco:  “I’m sorry, how many times did you say?”

Me:  “Nine.  Nine times.”

Ms. Powerco:  “Nine times?”

Me:  "Niyine times.”   Despite my best Ed Rooney imitation, the tribute to quintessential 80’s movie Ferris Bueller’s Day Off went right over her head.  “What’s the problem?”

Ms. Powerco:  “The whole feeder line is down.  They‘re working on it now.”

Me:  “Have you identified the problems yet?  Isn’t there something that can be done to prevent this?”

Ms. Powerco:  “I wouldn’t know.  We’re not responsible for the physical plant.”

Me:  “Excuse me?”

Ms. Powerco:  “This is a physical plant problem.  We’re not responsible for the physical plant.”

Me:  “Well, if you’re not responsible for the physical plant, who is?”

Ms. Powerco:  “The plant manager.  You’d have to call him to find out what the problem is.”

Me:  “But I don’t have the plant phone number -- I have *this* number.  Don’t you think it would be helpful if you and the others who answer the outages line called the plant when the feeders go down so you could provide some actual answers to the people who call?”

Ms. Powerco:  (Hangs up on me) *CLICK*

Ah, customer service, Virgin Islands style.  There’s nothing like it anywhere.

Sunday, March 14, 2010

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.

Monday, March 08, 2010

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.

Friday, March 05, 2010

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.