Sunday, May 30, 2010

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!

Friday, May 28, 2010


I am officially charging both of my arms and my right leg with High Treason.

As sources of unrelenting pain (left arm and right leg) and agonizing bouts of spasticity (right arm), they are aiding and abetting my sworn enemy, spinal cord damage, and causing grievous harm to their Sovereign.  In addition, my right arm and leg have exacerbated their traitorous behavior by refusing to obey my direct orders.

These blatant acts of disloyalty will not be tolerated.

Ideas on how to deal with the traitors are welcome. 

The traditional punishment for the crime of High Treason was drawing and quartering.  But I can’t see making my (mostly) innocent internal organs pay the price for the misdeeds of my limbs by burning them, and since I already feel like I’ve been cut into quarters…Well, you get the picture.

Saturday, May 22, 2010

Let’s Talk About Pain, Baby

This post is dedicated to dejerine, who has taught me more about pain and pain management in a year than the medical profession has in 30, and whose humor and keen observations about the lack of real understanding about central pain make me think, laugh and cry, often all at the same time.

There’s an old saying, “You don’t know what you don’t know.“ 

After living with chronic pain for most of my life, I’m can say with certainty that doctors and researchers have no idea that they’re absolutely clueless about pain and pain management.  The reason behind the problem?  The doctors and scientists we rely on for help do a terrible job of communicating with us about the problem of pain and the solutions.

Let me illustrate with my story.

In scientific terms, I suffer from two very different kinds of chronic pain: nociceptive and central.  Nociceptive pain is the typical kind of pain people feel when their organs, soft tissues, or bones are damaged.  Central pain, in the most simplistic terms, occurs when nerves in the brain and spinal cord are damaged.  These injured nerves amplify their signals (and drag their healthy neighbors along for the ride), and the brain interprets this barrage of amplified nerve signals as a variety of obnoxious sensations: cold, metallic burning (dysesthesia); stabbing (lancinating); pins and needles; electrical shocks; pressure/swelling; and even itching, to name a few.  Spasticity (involuntary muscle spasms and rigidity) are also a form of central pain, although I think of it as a separate symptom.

I was able to cope with my pain (both kinds) and spasticity on my own for almost 20 years.  When I finally reached the point at which I needed help, I had no idea how to tell my doctors about how I hurt in “science speak”.  But I could do what I thought was the next best thing -- describe exactly what I was feeling.  I (naively, as it turned out) assumed that the specialists at the pain management clinic would both want and need to know, in as much detail as possible, what kinds of pain I had, where it hurt, how bad it hurt, how often each kind of pain occurred, how long each type of pain lasted, what triggered the pain (if anything), and finally, what relieved the pain (if anything).  Logic dictated that the better my doctors understood what I meant when I said I was in pain, the better they’d be able to come up with treatments that would help me manage it.

The clinic’s intake questionnaire seemed like the perfect opportunity for me to provide the specialists with a record of how pain affected my body and my life.  There were page after page filled with questions about the ways in which pain encroached on my ability to sleep, eat, work, and the other activities of every day life.  But to my great surprise, there were only a handful of questions about the pain itself.  The best opportunity I had to describe the types of pain I was dealing with was rough outline of the front and back of the body. 

Although the instructions said only to mark where I felt pain, I went a step beyond by mapping both where I hurt and the kind of pain that affected each area of my body.  It took me the better part of an hour to fill in the illustration and create a key that explained what type of pain was represented by each pattern: polka dots represented problems with spasticity and tone even though I already had a Baclofen pump.  Left-leaning hash marks indicated (I thought rather cleverly and appropriately) the butcher knife that would randomly plunge into my left shoulder blade and other lancinating pains.  Jagged Zs showed where electrical shocks raced through me, while tear drops revealed the acid that pooled just under the skin of my left arm and right leg when anything touched them -- even a tear drop or a puff of air would set me to burn.  And a series of squiggles marked the nociceptive pain that plagued me, including the persistent ache in the middle of my back  where the side-to-side and front-to-back curvatures of my spine intersected. 

The finished product was the most accurate representation of my pain that ever existed.  It was also a mess  -- there were so many different patterns overlapping in areas like the left shoulder and arm that the drawing appeared to be colored black.  (To this day, I can’t help but wish I had taken a set of colored pencils with me that day -- color coding would have been so much easier to distinguish than multiple designs.)

Only one question remained, and I thought the most difficult part of the questionnaire was behind me.  Then I read the question.

“On a scale of one to ten, with ten being the worst, how bad is your pain on a typical day?”

What?!?  You have to be kidding.  I had no idea how to answer that question. 

When you’re in pain, there’s no such thing as a “typical” day.  Anything and everything can trigger a flare up -- the wrong clothes, lack of sleep, stress, changes in temperature and/or barometric pressure, having scrambled eggs instead of sunny side up.  (I‘m only half-kidding about the eggs.  Blending the whites and the yolks with a little water to make them fluffy as they cook has triggered stabbing pains in my shoulder on more than one occasion.)  Should I consider today typical, or should I find the average of the highest scores from the last three? seven? ten? days and write that number down?

“On a scale of one to ten, with ten being the worst, how bad is your pain on a typical day?”  Reading it again only made it worse. 

At any given time, I’m under siege from multiple types of pain.  Which of them am I supposed to measure against that scale -- the worst one?  Or should I take the score for each kind of pain I have and come up with an average?  Should the average be derived from the “typical” score for all the pains or the highest flare up for each type of pain?  Maybe I should give one score for the nerve pain, another for the “regular” kinds of pain, and a third for the spasticity.

I sat and stared at the question for almost five minutes, trying to figure out the answer.   Nothing came, so I left it blank.

I spent an hour and fifteen minutes on the pain questionnaire.  The pain management specialist never looked at it once -- well, at least not while I was with him.  We talked about the tumor, the surgeries and the radiation that caused the damage to my spinal cord.  We talked about how the pain affected my sleep and my work.  We talked about my expectations for pain management.  We talked about how well my Baclofen pump was working.

The only thing we didn’t talk about, except in the most general terms, was the pain. 

It’s been the same with every doctor since.  Specialist or general practitioner, they all behave as though my pain is a single, homogenous entity.  They act as though I can adequately describe how pain affects my life by assigning it a numerical score at a random moment in time.  And they prescribe and evaluate the effectiveness of treatments without ever understanding the specifics of the problem.

And we let them. 

If we, the people who hurt, ever hope to get the relief we need, we must change the way we talk about pain, and force the doctors and researchers to change, too.  Instead of conversations about “the pain”, we need to talk about the burning, the stabbing, the spasms, the pins and needles, and the pressure.  We need to insist that our doctors stop talking in general about pain and start talking specifically about the kinds of pain we have and how well -- or poorly -- the treatments they’ve prescribed affect each one.  And we need to challenge the scientists who study new treatments to use the most specific definitions of pain possible when they perform their research and evaluate the results.

So let’s talk about pain, baby, just not about “the pain.”  They don't know what they don't know, so it's our job to tell them.

Sunday, May 16, 2010

ED Visits Gone Wrong - Georgetown Edition

I’ve mentioned before that I follow a lot of medical blogs, more than a few of which are written by folks who work in the ED (Emergency Department -- not Emergency Room, thank you very much).  After reading hundreds of tales in which doctors and nurses complain about the problematic patients they’ve encountered over the years, I’ve decided that the blogosphere is long overdue for stories about ED nightmares told from the patients’ point of view.

This is one of those stories.

I was a mess, physically, emotionally, mentally.

A month before, I’d started taking an anti-seizure medication with the hope that it would be the one that finally gave me some relief from the unrelenting central pain I’d endured for the last 25 years .  The experiment was a disaster.  Not only did the drug do nothing to quiet the pain, I suffered almost every severe side effect possible: nausea and loss of appetite, problems with short-term memory and concentration, insomnia, depression, dramatic weight loss, anxiety, exhaustion, tinnitus, and problems with my vision.  I couldn’t eat, sleep, focus, or stop crying, nor could I get a single moment’s relief from the lancinating and electrical pain tearing at my left shoulder and right leg.

I took the medication for 21 days in the hope that my body would adjust and the miserable side-effects would diminish, but that didn’t happen.  Magnified through the twin lenses of total exhaustion and unbearable pain, the symptoms actually got worse with each passing day. 

When I couldn’t take a minute more, I called my pain clinic for help.  My doctor was out, so I ended up talking to a resident who didn’t know me.  I patiently explained that I’d been working with Dr. X to find a protocol that managed my central pain, why I had taken myself off of the latest med, and asked if they could see me sooner than my next scheduled appointment (still two long weeks away) or prescribe something to help me cope with the pain until then.  The resident refused to do either, telling me that they “had to find the source of my pain before they could treat it.”  My response -- that the reason I was in pain was because a large tumor had been cut out of my central nervous system and took a significant chunk of my spinal cord along with it -- failed to impress him, and he continued to refuse to help.  When I tearfully asked how I was supposed to make it until my appointment, I was told to go to my local ED if my pain got “really bad.”  And then he hung up on me.

As you might imagine, this did little to help alleviate my depression.

Four days later, I was still crying my eyes out and still in agony.  I’d not left the master suite in our condo for close to a month, had no pain meds on hand, and saw very little hope for making it another ten days until my appointment with the pain clinic.  After listening to an impassioned plea from the HipHubby to seek some help, I reluctantly agreed to do as the pain clinic instructed and go to the emergency department at Georgetown Hospital.  Great idea in theory but a nightmare in real life.

The HipHubby and I arrived at the ED at 6:30 pm, and sat in the waiting room for the next four hours.  When I finally got called back at 10:30 pm, the resident on duty that night all but ignored my explanation that I was there because I felt I was losing my battles against chronic pain and depression and hoped to get enough pain relief to get a few hours sleep and talk to a psych resident about starting antidepressants. 

Instead, he became fixated on the fact that I was running a low-grade fever, and decided that tracking down and treating the cause of it was more important than dealing with my primary complaints.  Telling this resident that my general practitioner had already run a full battery of diagnostic tests during the last month that ruled out the usual types of infections -- urinary and lung -- didn’t dissuade him of his resolve.  As soon as his order to start an IV was completed, off I went, without the benefit of any pain medication, to have chest x-rays taken and urine samples collected.  He even ordered blood cultures, in addition to the standard diagnostic tests like a complete blood count (CBC), to rule out sepsis.  Only after another four hours had passed and the tests came back negative did he finally get around to giving me some Demerol for the pain and request a consult from the psych department.

It was 3 am -- eight and a half hours after I arrived in the ED -- before the third year resident from the psych department appeared at my bedside.  I shared with her my terrible experience with the most recent pain drug, but let her know there was more than that fueling my depression.  Dr. X, I told her, had promised me that he had “lots” of things to try that could help with my pain, but I was still without any relief after seeing him at the pain clinic for more than a year.  I made certain she understood that Dr. X was not the first to fail to deliver on his promises -- he was just the most recent.  And I confided in her that I felt adrift and alone, which was made all the worse when the pain clinic doctor whom I’d begged for help earlier today refused.  I was emotionally exhausted because doctors would give me their word that they’d help me, and then renege on their promises.

The psych resident listened with interest and, when I’d finished, assured me with a warm smile and the “I care about you, really I do” pat on the hand that there’d be no problem getting me started on some anti-depressants before I left.  But before she could write that prescription, I would need to submit to a complete psychiatric evaluation.  I agreed, and with the Demerol finally easing some of the physical pain away, felt for the first time in weeks that I might be okay after all.

The psych exam took almost two full hours to complete.  During that time, she explored my medical, social, and family histories.  She assessed my cognitive functions and perceptions.  And she evaluated my ability to care for myself and navigate the ins and outs of daily life, which included interviewing the HipHubby about my daily routines.

But the majority of the resident’s inquiries focused on the coping mechanisms I use and my ability to “appropriately” express my emotions.  The latter is always tricky terrain to navigate because it’s so subjective -- doctors and I have been known to have very different opinions about what constitutes a suitable reaction to certain situations.  For example, I think it’s perfectly natural to respond to the suggestion that I pursue in-patient psychiatric care with a sharp, succinct, and immediate “Fuck no!”  Doctors, however, seem to disagree, and have even made a permanent note in my chart about how strongly they disapprove of that reaction.

Fortunately, there were no such differences of opinion that night, and shortly after 5 am the psych resident announced she was going to call her attending to ask about which antidepressant she should prescribe.  It felt as though my release from the emotional prison in which I was being held was imminent.

It didn’t happen.  It took the attending psychiatrist less than two minutes to decide that prescribing antidepressants and referring me for outpatient care would be inappropriate.  If I wished, he said, he would admit me to their psych unit, but otherwise they would do nothing for me. 

I was devastated that the same problem that had brought me to seek help that night had just happened again -- a doctor had promised to help me, and then failed to deliver on that promise.  The psych resident  wouldn’t acknowledge that she’d just become she vowed to help me fix, and refused to call her attending back to appeal his decision.  She simply said she’d done all she could do, and walked away.

After almost twelve long hours in the ED, I’d had enough.  I took out my IV and, without waiting to see the ED resident who‘d taken charge on my care, we left.  No one seemed to notice -- we never got a second glance from any of the ED staff as I rolled out the door, nor did the hospital attempt any follow-up to my visit.  It should go without saying that my experiences that night made me more than a little reluctant to ever set foot in an emergency department again.

Sunday, May 09, 2010

Gifts My Mother Gave Me

Happy Mothers’ Day, Mom.

Sure wish you were here with me so I could give you a hug and tell you all this in person instead of writing it down in a letter. 

I’ve been thinking of you a lot lately (Mothers’ Day does that to a person, you know), and I want to take a minute to thank you for everything you’ve given me.

Unconditional and Unending Love.
  I don’t remember even one second in which I didn’t feel how much you loved me, although I can think of more than a few times when I felt less than worthy of it.  (Sorry again for those times in my teens when I lashed out at you in anger when you tried to make sure I got to medical appointments.)  You stayed with me during my darkest hours and believed in me when no one else did.  If everyone could experience the kind of love you gave me, Mom, the world would be a very different place.

Laughter.  Oh my goodness, have we laughed hard together.  There was the Christmas we spent in Florida when I was just getting sick.  We were playing the “Godfather” board game and when you just couldn’t catch a break, you got so frustrated you blurted out what became the only swear word I ever heard you comfortably utter, “Oh, poopshit!”  I thought Dad and I were going to throw up we laughed so hard.  And the time I came home from college, and you and I got flat out silly from dressing the dog (a mini-poodle) up in my baby jammies and old doll clothes.  Dressing up the dogBuffy didn’t see the humor in it all, but we sure did.  Even though we’ve shed far too many tears together, we’ve spent far more time laughing than crying.

Time and Attention.  You were the best “room mother” ever to walk the halls of Union Lake Elementary School.  You made hand-sewn Halloween costumes for me (and dressed up with me, too), and sand sculptures with me at the beach.  Going as a mouse for
HalloweenMy lunch bags were works of art, and there was a note from you wishing me a great day in each one.  You were poetry in motion as you sailed past my gangly teenage friends at the roller rink when you took us skating.  When my hands didn’t work after the second tumor surgery, I made it through my 10th grade Accounting class because you spent dozens of hours entering the numbers I dictated into tiny boxes on ledger paper.

Stability and Security.
  It felt like a pain some times when I was growing up, but I’m so grateful that we sat down together for dinner every night at five.  I could always count on you being there to pick me up from school in bad weather so I didn’t have to walk home in the pouring rain or heavy snow.  I never doubted for a moment that we’d be fine after you and Dad divorced even though I knew our financial situation was very different than it was when you were married.  You were always there when I needed you, whether I called to you in the next room because I was going to “fro up” or phoned you from thousands of miles away because I was scared of some new change my body was going through.

Money Management Skills.  As a Depression-era child who grew up poor, you knew better than anyone the importance of budgeting your money and never spending more than you earned, and you made sure I knew it too.  Because of what you taught me when I was growing up, I’ve never been in debt and have always paid all my bills on time and in full every month.  And you made sure I’d never have to go through the problems you had with establishing your own credit history when you divorced after thirty-plus years of marriage by co-signing for a Marathon Oil gas credit card in my name the day I turned 18.

And there’s so much more.  I was lucky enough to inherit your intuition and compassion for others, and blessed that you insisted I have good manners like Mom and her sand sculpture sending hand-written thank you notes.  You taught me everything from a strong work ethic to how to get ink out of a shirt.  You gave me life once, and kept me alive when I wanted to give up twice. 

I can’t ever thank you enough for being so good to, and for me, but I hope that this is a good start.  Happy Mothers’ Day, Mom.  I’ve got a big kiss and hug waiting for you the next time we’re together.

All my love always,
Author’s note:  I lost my Mom five years ago.  She suffered multiple brain bleeds, lapsed into a coma, and passed away a little more than 12 hours later after her doctor continued to prescribed high doses of blood thinners even though he had already treated her for internal bleeding.  It all happened so quickly I wasn't even able to get on a plane to go to her before she died, and I never got the chance to say goodbye.   Although I told her at every opportunity how much I loved her, and said thank you to her often for so many things, this is the first time I’ve told her in such detail why I am so glad she’s my Mom.  I wish I’d done it a lot sooner.

Friday, May 07, 2010

Things I’ve Learned from Reading Blogs

Pharmacists are as just as pissed off as postal workers, but are a lot better at not acting on it.

It’s not a good idea to install an automatic shower cleaner without warning your spouse.

A lot of nurses hate National Nurses Week and being portrayed as warm, fuzzy huggers.

This woman is more clever before she has her first cup of coffee than most people are at the high point of their day.

The First and Last Patient of the Day/Night is a popular topic for doctors and nurses who blog.

There are extraordinary people out there who somehow manage to keep going in the face of problems that would make most people pull the covers over their heads and give up.

There are some truly twisted little old ladies out there.

Some doctors don't know crap about crap. (Colace, a stool softener, will only help prevent constipation, not cure it.)

Other doctors know way too much about other crap having to do with rectums and colons.

Other peoples' kids and cows rarely tire of a guy who can do a good, loud Moo.  The same cannot be said of his spouse and kids.

There's money and fame to be had by studying and publishing the obvious.

Thursday, May 06, 2010

It’s All In Your Head

It seems that just about every one I know who has chronic pain or a condition that’s not immediately evident to a first year med student with a copy of Grey’s Anatomy has been sent off by one doctor or another to see a psychiatrist.  The last words the patient hears before being handed the referral to the MD’s shrink of choice: “It’s all in your head.”

Not literally, of course.  What the doctors actually say to their patients is, “I was unable to find anything wrong.” Or “There’s no clinical evidence of disease.”  Or the worst one of all, “You have a condition called somatization disorder/Briquet’s syndrome.”  Whatever the words that are used, the message the patient hears is clear -- I don’t believe you.  You’re making it all up.  You’re crazy.

Until you -- or your mother, son, husband -- have heard these words firsthand, you can’t possibly understand how devastating they are.

I was thirteen the first time a doctor told me that my physical problems were psychosomatic.  During a weekend trip to Toronto the year before, I developed a stiff neck that was so that I was unable to turn my head at all, and so painful that I had to sleep sitting up.  At first, my Mom thought it was the result of tramping around the city during a late season blizzard, and that it would resolve itself with the aid of time and a good heating pad.  But when I was no better after three weeks, she took me to see an orthopedic surgeon.  Dr. Ortho prescribed muscle relaxers and over-the-door traction but was unable to find the reason my neck muscles were so tight.  (He did, however, diagnose me with both scoliosis and hemihypertrophy, the latter probably being the cause of the former.)

After about six weeks of treatment, the stiff neck resolved itself.  But as soon as it did, it was replaced with a new set of problems: malaise, nausea/loss of appetite, and vomiting that resulted in dangerously rapid weight loss (30 percent of my body weight in less than three months).  Close to a dozen consultations with my pediatrician, internists, neurologists, neurosurgeons, and a gastroenterologist turned up nothing that would explain why I was throwing up every day, couldn’t eat, and had barely enough energy to drag myself to junior high every day.  The last doctor we saw told my parents in no uncertain terms that he believed my problems were mental, not physical, and recommended that they take me to a psychiatrist.

I wasn’t in the room when the doctor gave my parents his assessment, but that didn’t make it any less painful.  Being sent to a psychiatrist meant the doctors thought I was crazy or a liar (or both).  It meant that no one believed me (except my Mom, who never wavered from her insistence that there was a physical cause for my misery).  It meant that my Mom and I were now on our own.

Even though I wasn’t trying to lose weight, the psychiatrist, who I’ll call Dr. Ahab, diagnosed me with anorexia nervosa.  He put me on a high dose of Mellaril (a drug used to treat schizophrenia, a severe loss of contact with reality), and subjected me to weekly discussions about why I feared growing up and becoming a woman (I didn’t).  I was so physically sick that I was hospitalized for dehydration four different times.  At one point, Dr. Ahab tried unsuccessfully to convince my parents that the combination of outpatient therapy and antipsychotic medication was no longer enough, so I should be admitted to an inpatient psych hospital for children as soon as I was medically stable.

The message was hammered home: your body may be sick, but the problem is all in your head.  Inpatient treatment meant the doctor didn’t just think I was making things up, he thought I was crazy with a capital C.

That was one of the lowest points in my life.  Word got out at my school that I had been sent to a shrink and almost “put away” because I was faking my illness.  I was relentlessly bullied by some of my classmates, and singled out and embarrassed by my PE teacher.  And although my body temporarily healed itself during that time, my spirit became progressively more wounded.  A year and a half later, Dr. Ahab finally decided I was ready to be released from his treatment.  But by that time, the damage was done.

I enjoyed six trouble-free, psychiatrist-free months before I lost the use of my hands.  At first, I noticed that it was getting harder to play my viola because I couldn’t keep my fingers in the right place on the fingerboard or hold the bow correctly. Within a month, both hands were curled into fists and I was using my wrists to open doors and lift food and beverages to my mouth (I ate a lot of hot dogs).  And sure enough, when I showed my parents how bad things had gotten, my Dad whisked me straight away to a new psychiatrist, who handed me a pencil and paper and told me to draw the objects she’d posted on her wall.

My first thought was, “I’m so screwed.“  I couldn’t extend my fingers from where they curled into my palms, and my hands were so weak I had no grip.  Even if I did manage to hold the pencil tight enough to draw, the lack of control I had over my hands was sure to produce shapes that would make it appear  as though I had no grasp on reality.  I was sure before I started that this was game over, and I’d be heading straight to the psych hospital after this appointment. 

Thank goodness this wasn’t Dr. Ahab, or even someone who shared his mindset.  This new psychiatrist recognized that there really was something physically wrong, and referred me to a new neurologist (number six, if anyone‘s counting).  After two more months of doctors and diagnostic tests (including an electromyogram and myelogram), I was diagnosed with an astrocytoma, grade III (anaplastic astrocytoma) , of the cervical and upper thoracic spinal cord, my Mom and I were finally able to prove that all of problems were physical, not psychiatric, in nature.  As strange as it sounds, hearing that I had cancer was, for a brief moment in time, a huge relief because it was real.

This experience changed how I thought about doctors.  Primary care physicians and specialists are viewed with suspicion.  I no longer believed that they will listen to or really understand what I told them, or that they would make every effort possible to figure out what was wrong with me.  Psychiatrists and other mental health professionals are adversaries who are not to be trusted. 

I wish I could tell you that my experiences in the 30 plus years that have passed since then have convinced me otherwise.  I wish I could tell you that I was the only one who’s experienced this.  And I really wish I could tell you that I believed no one would ever tell me again that something I know to be real isn’t.

I may sound cynical, but I believe that's probably typical of anyone who's been repeatedly told he/she's crazy. But based on my experiences, the best I can hope for is to have what I do right now -- something that I didn’t have when this first happened: other people who been there and done that, and who understand why I get so angry when a doctor even suggests that my pain, or anything else I’m experiencing, is all in my head.

Sunday, May 02, 2010

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.