Tuesday, October 18, 2016

Judge Not Lest ...Ye Know the Rest


“JUDGE NOT, and you will not be judged; CONDEMN NOT, and you will not be condemned; FORGIVE, and you will be forgiven; GIVE, and it will be given to you. Good measure, pressed down, shaken together, running over, will be put into your lap. For with the MEASURE you use it will be measured BACK to you.” (Luke 6:37-38)

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Invisible chronic pain and the use of narcotic pain medication to control it is one of the most difficult realities we sufferers have to defend in our current medical system, if not thee most difficult. I was treated with less personal judgment when I was a smoker. No joke. But my latest trip to the ER has led me to shine a light on the way those of us with invisible chronic pain who are on prescribed narcotic pain medication are not sometimes, not once in awhile, but usually treated by medical staff. I can give you two perspectives because I used to be on the ER staff.

I used to be one of the judges; now I am the judged.

You might think I would be in no state to follow and evaluate the events that transpired in the ER if I was indeed sick enough to need in the ER, but in this particular case I was as hyper-aware as I have ever been, and while the treatment by the medical staff during my most desperate trip to the ER was sadly nothing new, it did sting me more than all the other times put together because this time, I needed kindness and understanding more than I ever had before because I felt so much worse than I ever had before. I honestly thought I was dying.

The Outcast du Jour: Here but for the Grace of God Retches You.

To make a long story short, my Ulcerative Colitis (UC) was at the time being treated with nothing but a few milligrams of steroids and pain medication while I waited for my insurance company to approve a new and expensive treatment, and so my UC symptoms obviously continued to get worse the longer my insurance company took to okay my doctor's newest course of action. Then I took a new time-release medication that, due to the several feet of ulcers and rawness in my intestines, was absorbed with much more rapidity and entirety than the doctor who'd prescribed it had anticipated. It reacted with the other medication already in my system, and I honestly had never been so sick and so scared in all my life. As the convulsions began, I thought for sure I was going to die from this reaction.

But that wasn't what the ER staff seemed to see when I came in that day,
and that wasn't how I was treated.

Society's list of accepted outcasts and rejects changes over the decades (not that long ago it included people of color and the Irish. At another time it included homosexual men and women and people who didn't attend a Christian church. Now it includes people who do attend a Christian church and people using narcotic pain medication). Every generation has their own self-defined cast of characters who don't deserve the help of the virtuous and are ripe for harsh judgment, unkindness and being left out, to put it mildly. In terms of the current accepted unworthy, I'd pulled a quadruple-whammy in the ER that day:
1) I am a young Social Security Disability and Medicare recipient.
2) I am currently taking daily prescribed narcotic pain medication.
3) I am in intense invisible and chronic pain.
4) I had been in that same ER several times before that same year for the same uncontrolled invisible chronic pain problem.
Charge: Inability to effectively fight a serious chronic disease without the use (or as many who just met you will judge: the overuse) of narcotic pain medication.

Verdict: Guilty. Lazy. Wimp. Drug Seeker. Addict. Unworthy of medical resources.

Sentence: Hereby sentenced to treatment by medical staff with impatience and unkindness whenever possible. Critical and suspicious judgment of your life and behavior will be constant. Doubts as to whether or not you truly need pain medication, regardless of what your primary care physician of 5 years believes, will likewise be constant and will affect the amount of medication you receive and the time that you are forced to wait to receive it. Certain questions regarding your treatment will not be answered, certain information about your treatment will be withheld from you (such as what kind of medication you are getting and how much) and certain claims that you make regarding your pain level will automatically be dismissed as "drug seeking behavior."

As I said before, this type of treatment for someone with my condition and medication list is nothing new and certainly not unique to me. And I get it. I've been on the other side of that fence. Resources and time in an ER are scarce, and it's hard to believe that a young, unemployed, screaming, vomit-covered person with a medical record and medication list the size of Canada is in real pain so severe that she can't even begin to control it much less rate it on a scale of 1 to 10. It's hard to keep in mind that this pathetic human being lying there naked, soiled, and exposed to all in every way on your cold, unfeeling table has struggled (and failed) to control a serious disease and its symptoms, and its medications and their side effects for A DECADE before an ambulance dropped her off at your automatic doors. I guess I should have been wearing a t-shirt that said:
...and was signed by my doctor, of course. I know it's easier to forget that obediently following my doctor's orders is what landed my undeserving body so disruptively in the middle of your ER. I know it's easier to forget the fact that this sobbing, unrecognizable person retching over the side of the bed is the wife of a popular local minister, a loving and beloved mother, a cherished daughter, a really real person just like you as she loses control of every one of her bodily functions right in front of you. I understand that it's easier to forget that there is just one tiny, little difference between YOU and ME: for reasons no doctor can seem to figure out, my body stopped working properly long ago while yours has kept right on working like it was meant to do. Aren't you the lucky one. Who would want to replay the famous quote"There but for the grace of God, go I," in their minds and hearts while working on the pitiable mess of a human being that was me? It's easier to see me as some drug-seeking good-for-nothing than yourself under different circumstances.

So, my doctors prescribe me medication to make my days tolerable since they can't cure my disease. I can't blame them. You don't blame them. You blame ME.
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BUT NOTHING ABOUT THIS IS MY FAULT!
I didn't give myself this disease: no one knows what did.
I always do what my doctors say and that loyalty has nearly killed me more than once.
I take all my medications as prescribed, which has given me at least as much trouble as relief.
I am doing the best I can with what God has given me.
ARE YOU??
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In that ER room on that day, no one would even tell me what medications they were giving me: something you would think would be a basic right of knowledge, especially considering that taking a new, unknown medication is what got me into this mess in the first place. When I asked, they simply told me, "You're doctor knows what they are," as though what they were pumping into my body was some kind of secret to be kept from me. I have no idea what they thought I would do with that information if I'd had it: no one explained their reasons for not telling me what they were giving me. (Incidentally, when the doctor did arrive, he told me **without reservation** exactly what medication I was being given and how much, and he said he had no idea why the ER staff hadn't told me when I'd asked). I think it's clear the big secret here isn't the medication being used.

So PLEASE for the love of God and/or mankind STOP JUDGING ME.
It comes out in all manner of nasty ways, and I do NOT deserve it.

Don't add insult to my injury with cold indifference and self-awarded superiority. Be just a little bit kind to me in my darkest hour. Even though I seem to have too many darkest hours to be real, I promise, THEY ARE ALL TOO REAL. Still, if all I look like to you is a waste of time, energy and bed space that could be put to better use for someone who is "really sick," then look for Christ in me. Care for the Christ who is lying in this filthy bed in my place, looking just as disgusting and unworthy of your compassion: cold, hurting, scared, confused, wronged, naked, unfairly judged and in desperate need of help. (see Matthew 25:31-46)

"Therefore let us not pass judgment on one another any longer, but rather DECIDE never to put a stumbling block or hindrance in the way of a brother." (Romans 14:13)

Would Jesus Eat Supper With Me? Living & Dying Alone

And so, with as horrible as I was feeling, it was little surprising when all of a sudden my ER room was empty and I found myself completely alone with all that bright beeping and without a call button in reach of my undeserving fingers, without a way to communicate with anyone except for trying to shout through closed doors (and no shouting could have been done through my throat which had been ravaged by hours of uninterrupted-vomiting). I knew the staff expected me to sleep, and I was exhausted, but I was still more scared than ever and oh, so horribly sick. No one had explained what was happening to me yet, no one told me when I could expect to feel better, or how they were working on getting this terrible medication out of me, or what I could expect to happen next. All they kept saying was that "my doctor knew," and I hadn't even seen him yet by the time everyone felt else felt confident enough to leave me alone in my misery.

I assumed that since no one was with me, I wasn't going to die after all, but no one had yet told me what was happening to me exactly. There were so many tubes going in and out of me that I couldn't turn onto my side much less get up and find someone. I felt trapped. How could I get someone's attention? The doors were closed and the curtains were drawn. I knew everyone had other things to do, but the (hopefully unintended) result of their unspoken abandonment was...


...devastating.

Couldn't someone have explained that they all had to go but would be back every half-an-hour or whatever to check on me? Couldn't they have given me a call button? Couldn't they have reassured me before they left? Couldn't someone have simply said goodbye?

It was that moment in that sterile ER in which I began to feel obligated to apologize for being there, for taking up space, time, medicine and other resources meant for the truly needy. So I began to apologize to anyone who happened to be nearby, thinking that if I admitted I was wrong (even though I wasn't), they might be nicer to me, maybe answer my questions with more than, "Your doctor knows," maybe not find me so intolerable and disgusting and stay with me for a few minutes or find a chaplain or someone else to hold my hand for a while.

I told everyone that I was sorry for being there, that I was sorry for wasting their time. I told them I was sorry for my medical history, for my invisible, chronic pain and my long, long list of unmentionable and bad medications, for my failure to beat my disease after so many years of trying so hard, for my intense fear of dying and leaving my daughter without her mother, and for the fact that I took this latest new medication as prescribed and that I had reacted so badly to it. I actually apologized for what was happening to me: I apologized for what had been done to me and for what was being done to me, I apologized for my doctor's oversight and my broken body's overreaction even though I did nothing to cause either. I might as well have been apologizing for having freckles and green eyes, but to be honest, if it would have stopped all the harsh judgment, I would have apologized for that, too.

While strapped to that bed by more tangled tubes and wires than I could even count, the medical staff's treatment of me led me to feel like I ought to apologize for being a sick person who needed help in a hospital.

...like I was an inconvenience to this institution instead of the reason for its existence, like I was an interruption to the  staff's day instead of my medication reaction being an interruption to mine. I felt like I ought to thank the ER staff every time they took a second to glance my way, and I did. I felt like I was 100% in the wrong and that might be one of the reasons God chose to give me such an awful reaction to my medication.

Judgment, especially when help is so desperately needed and the subject is judged to be unworthy of that help, is contagious. If we are told and shown how worthless we are over and over again in word and in deed, we will begin to believe it. Like the ER staff, when I offered apologies that should never have been offered, I'd forgotten that compassion is not meant to be earned. It's the Law (God's Law, that is, not man's). It's mandatory. It has to be, or else we'd never offer it to anyone because no one apart from Christ could ever truly earn it.
Reason's Last StopI'll Take That Impossible Path Instead of the Paved One with All the Signs and Friendly Passersby.

What we all can say with 100% certainty is that even if ER patients are not dying, even if they are on every drug--legal and illegal and in between--they are still in agony (with a few who are living in an even deeper agony of exaggerating their suffering in order to achieve some brief high that has sadly what they live for, a worse agony than I can imagine). Yes, drug seeking happens, and yes, drug seekers still deserve our compassion BUT like with the Disability fraud, the majority of people seem to think it is so easy to perpetrate, that most people on narcotics are drug seekers and not genuinely sick, when in reality, it's the other way around.

Why? Because who in the world would ever want to be treated so poorly
if they didn't really need the help??

The unending piles of confusing paperwork, the personal and nasty snap-judgments of total strangers, the rudeness and inexcusable incompetence of the people involved and the hatred by all that is thrown the way of the disabled with billboards and Facebook posts calling us "users" and "liars" and "lazy" and "drug-seekers" and "frequent-flyers" and worse. All this hatred and judgment on top of being so ungodly sick is just too much to endure.

It is far less work and far less painful to be healthy and have a full time job, and it is far less work and far less painful to NOT need pain medication on a daily basis.

I have been in both places and I promise you, THAT IS A TRUE STATEMENT. One that I cannot believe isn't so blatantly obvious it isn't glowing above my head Vegas-style. Who wouldn't choose to be healthy over being unhealthy? Really? Who wouldn't choose to take their kid to the park on a nice day? To go to a job they spent years in college and graduate school learning to do and make $4000 a month instead of $800? Who wouldn't choose to feel good and have energy over feeling blah and tired and woozy all the time??

Do you really think I chose this life??
Do you really think my life is easy??
Then let's trade for a day. Or even 5 minutes.

The next time you meet someone who is on disability, or on pain medication, and you decide for yourself within a few minutes of conversation that she just doesn't want to work or he just wants to get high, and all their doctors are liars and all the judges are idiots and the system is so easy to fool, turn back (Acts 3:19). This time, use the kind heart that Jesus gave you in your baptism and ignore the one your politician has implanted in you with all of his or her nasty, hateful tirades. Pray that the truth will out, if it has not already, thank God for your own good health, err on the side of grace and just BE KIND. Leave it at that. Those snap judgments and sinful criticisms are bad enough to endure coming from talk radio and TV news and from my Facebook "friends"...

But few things in this sick, sad, unfair world can compare to being judged as some lazy drug-seeking addict in the walls of a hospital when all you are is a seriously ill human being in extreme pain who can't get anyone to listen to you.

No sane person in their right mind would subject themselves to this level of contempt and misunderstanding if there was any way to avoid it. Yes, some people manage to manipulate doctors and the paperwork and the system and really are "faking it." But most are not. As for the few people who are faking it, you don't know who they are. You wouldn't want a banker treating you like you had bad credit the second you walk in the doors for a loan, would you? You would want him to give you the benefit of the doubt until he has good reason to dismiss you. That's what we all would want.

The fakers are still people, and they are most certainly ill in a different way. They are still created by God and are still loved and redeemed by that same God, and that alone makes them worthy of our compassion (albeit not the kind of compassion that ends in enabling, but rather a much more difficult compassion that ends in a rehabilitation or perhaps even jail). (Matthew 18:21-22)

No level of compassion can ever be reached by a cold shoulder.

The fear of enabling an addict is perhaps where some of this common mistreatment of chronic pain sufferers finds its inception, but from where I'm laying, there is very small merit in the good intentions of erring on the side of caution when it means treating an innocent, truly ill person like dirt. Everyone who comes through your ER doors ought to be treated with respect and kindness, in the spirit of "first do no harm," if you wish, or in the spirit of "innocent until proven guilty" if you wish to look at it that way, or by the call and command of Christ to treat others as you would want to be treated (Luke 6:27-36), to not judge one another (Luke 6:37-42), and to be kind to the least of society's members (Matthew 25:31-40), if you wish to look at it in any of those ways. If any of these assumptions could underlie the judgment and subsequent treatment of people with invisible chronic pain as patients who are as worthy as all others, the problem might be abated a bit.

And yet there I laid, alone in your cold bed, shaking from closest I've ever been to real death while conscious, the call button too far away and myself too afraid of your hate to ask for a simple glass of water.

Is that how you would want to be treated, how you would want your child to be treated,
if by the grace of God, you (or they) were in my shoes?

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"Jesus also told them a parable: “Can a blind man lead a blind man? Will they not both fall into a pit? A disciple is not above his teacher, but everyone when he is fully trained will be like his teacher. Why do you see the speck that is in your brother's eye, but do not notice the log that is in your own eye? How can you say to your brother, ‘Brother, let me take out the speck that is in your eye,’ when you yourself do not see the log that is in your own eye? You hypocrite, first take the log out of your own eye, and then you will see clearly to take out the speck that is in your brother's eye." (Luke 6:39-42)