ow, my pride.
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Complain
Speculate
2012/08/##

Doc,

You are my favorite doctor, ever. You understand me, you are always there, you do what's best and proper and decent. The support-staff belonging to your parent (and competitor) companies, not so much. I shall, with dramatic flair, haltingly, dictate this true tale of misery and woe [leaving you and H-Bomb (your Nurse) blameless, praised, deservedly] encountered along my unfortunate series of medical maladventures.. Enjoy.

This tale of torture began with the 'SYMPTOM.EMBARRASSING scare' of a few months ago.. I told you I was concerned, you understood, you called for a test. [Regardless of my nonexistent health insurance, billing at your lowest rate.] Life got distracting, I filed SYMPTOM.EMBARRASSING under the 'nothing you can do, they always call' category ..apparently, so did your records-staff.. A month later, when I got a bill [not even slightly discounted] I remembered, I called, "Everything's a-ok, thanks for reminding us." ..Something about that bothered me.. Misplaced.

Then, trouble. You saw me right away, you heard me, you understood. H-Bomb made me promise. That promise, alone, may well have saved my life ..Thank You.. Injury, Triumph.

Aside: PROVIDER.SOUTH gave me their greenest, pimple-faced Intern, fresh out of technical 'college' to help me work through my tough time.. Insult.

Then, for a long scary day, my progeny tested positive for DISEASE.PANIC.ALL and everybody we knew had to be inoculated. [Instinct, call my favorite doctor: unavailable.] "I've been away for a while, do I need to be treated, is there a test I can take to avoid taking DOSE.SKETCHY unnecessarily?" Phone-staff: "I can squeeze you in, two days, maybe three.".. Fail.

I ran to Urgent Care ..because..well.. DISEASE.PANIC.ALL is BAD, right? [The news media loves to scare us with that one.] They explained that a PROCEDURE.RISK.9 is the only True Test ..fine, give me DOSE.SKETCHY.. The CDC eventually weighed in.. False Alarm.

Then, I started having SYMPTOM.DANGER, one of the universal BAD side effects you read about, warned to watch for with most every other DOSE.SKETCHY. Having recently lost faith in your phone-staff, I called Urgent Care. I explained that I had taken DOSE.SKETCHY. They said the ER had to test SYMPTOM.DANGER. I went, tested, waited, nothing wrong. My Port-a-Doc said, "That's not a listed side effect." He had to check again with his free smartphone app. Turns out [after a quick search] that it is perfectly safe, and often expected, to experience SYMPTOM.DANGER for a few days after taking a potent dose of that DOSE.SKETCHY.. Fail.

Somewhere, in the midst of all this, when I recognized my life was shaping up to be a Tragedy, I applied for financial assistance, got it, after only two months. Thank you PROVIDER.PREFERRED, truly. I owed significantly for your quality services which are provided in good faith. It was uplifting to watch debt evaporate rather than condense.. Appreciation.

Then, memory grows a little fuzzy as I dealt again with my old nemesis: AFFLICTION. This time it went all out: AFFLICTION.WORSE with SYMPTOM.BAD, SYMPTOM.WORSE, and SYMPTOM.HORRIBLE [nothing funny about that last symptom].. Injury.

I remember going to the hospital, clearly exhibiting SYMPTOM.WORSE. I was seen, properly, when it was my turn. [Emergency Room: I get it, priority.] The Port-a-Doc came in, performed EXAM.INDELICATE for AFFLICTION.WORSE, asked a few questions, left. A previously AFFLICTION.WORSE.PAIN.8, rocked all the way up to AFFLICTION.WORSE.PAIN.11. An indeterminable interval of time passed, reality was foggy. Next thing I knew, it was amateur hour in the SCAN.VISUAL lab. I was the puppet for two children, hanging me this way, that, not clear enough, take it again, relax, hold still, hold still ..all of which were potentially dangerous, excruciating positions for a person with AFFLICTION.WORSE, alongside lowering any hope for further progeny with each, bad, SCAN.VISUAL taken.. for far too long. The rest of that visit was lost to the ethers.. Spectacular Fail.

PILLS.CAUTION were, and have continued to be, offered, [freely, always, pressing] which is appreciated, [a little disconcerting] but, well, frankly, dangerous. I represent the clinical-perfect scenario to breed yet another pill addict awaiting actual treatment ..no thanks, I have plenty-enough problems already.. Temptation.

I went back, a few nights later.. (somehow) it'd gotten worse. I'd had enough, mercy, surrender, give me the PILLS.CAUTION. I sat in the ER again, exhibiting SYMPTOM.HORRIBLE, for longer than it probably should have taken, this time. I received the 'faker' treatment. My nurse, during the long walk to a supply-less room, clearly, indiscreetly, mouthed "junky" to another. Ouch. I explained, honestly, AFFLICTION.WORSE.PAIN.10, was given an injection in the butt, not gently, while being told it would help with the pain, immediately, it didn't. I can only speculate as to the actual content received.. Insult.

The SCAN.VISUALs came out fuzzy, you sent me for a SCAN.VISUAL.BETTER, quick. Result: I actually have AFFLICTION.WORSE, not just faking for drugs ..referral to PROVIDER.NORTH.SPECIALIST, an agonizing one month wait.. They presented their own particular brand of displeasure: violation of Privacy Rights, public embarrassment. [That's a whole other letter.] They pushed for a barbaric TREATMENT.NEVER cure ..pass, next.. TREATMENT.PREFERRED.ALPHA, perfect. Earliest is eight days away ..I can do this.. 8,7,6,5,4, "Our most sincere apologies..beyond our control..three more weeks.".. Sucker Punch.

I voiced my despair ..to all that would hear, to some that were tired of my weary voice.. I hunted for another provider, sooner, nada. [No insurance..no money..no thanks.] I am now [thank you H-Bomb] on the 'exclusive' short-list for cancellations. Unfortunately.. since my stomach has to be empty, nothing but clear liquids, for TREATMENT.PREFERRED.ALPHA, and that I don't know when it will be, as little as one-hour-notice, dietary protocol is severely disrupted until/if they call.. I've already lost WEIGHT.DISCONCERTING pounds due to AFFLICTION.WORSE ..Two more anvils to juggle in my already un-balancing act.. Haunting the phone, hurt, angry, [hungry,] praying, just waiting for that one call, to tell you it's over.. Cruel.

I was provided a book, which I finally cracked, outlining [photographs with circles & arrows & a paragraph] precisely how I could make AFFLICTION.WORSE suck less.. Special-Doc had made me swear that I would not attempt any of it until after my first TREATMENT.PREFERRED.BETA session ..three weeks away.. Surrender.

I barely survived a severe bout of ‘magnificent medical malfunction,’ a prevalent condition these days, so I hear, growing worse. My experience is an obvious symptom, I do not pretend to know the cure. You and H-Bomb are awesome though, I love you guys, truly. It is the company you keep that I am forced to question…

Be well.

Complain
2018/08/##

Doc,

I am writing to explain why I have canceled my upcoming appointments…

It all began a year and a half ago, after surgery. That solved the CONFIDENTIAL. Yet, problems remained. You sent me to PT. Unfortunately, the referral stated "CONFIDENTIAL," which has plagued me ever since. It took two more referrals for the PT to finally lay hands upon me from neck to fingertips. Months later, I was only up to five-pound freeweights. Beyond their capabilities, time for more referrals.

I have been to see half a dozen specialists, and been administered as many tests. The first recommendation was: "Have some pills." The second: "Have more surgery." All the others: "Not my area. Have a referral."

I am tired of being examined a few inches at a time, a few months apart. Referrals to the other doctors have all been filled out same as the original, unhelpful "CONFIDENTIAL," no matter what I asked for. That is merely a symptom, not the problem (area). I then had to submit my request for a referral modification after it went through, often pushing me further back in the queue.

My upcoming appointments were re-referrals to retake painful tests, that had yielded inconclusive results. Third time's the charm? Don't think so. Still without insurance, I have relied upon the kindness of hospital financial assistance. Since surgery, that has accomplished nothing but waste everyone's time. I still hurt, I am still weak, still without diagnoses, still cannot perform my original profession.

Healthcare has been looking (and referring) for a convenient, single point of failure, in all the wrong places. The(ir) issues are clearly systemic in nature.

The fact that your (and your internationally renowned competitor) hospital doesn't offer any form of massage or acupuncture is discouraging. These practices, with millennia of proven results for pain relief and easing systemic problems, seem to have no place within your modern facilities.

I am disappointed with Western medicine, the latest is not (always) the greatest.

Thanks for trying.
Be well.

Complain
2023/01/##

Doc,

PROVIDER is still processing Referrals from October. They received yours on December ## (25+ days after our palaver, when I requested the referral). They will call me when they (finally) get around to me. They are currently booking appointments 6+ months out, after processing referrals. Any chance you could light a fire under their asses? I was hoping to get in more than just an Initial Consultation within the year… I would really like to know what is wrong with me.

ow, my pride.
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Question
2023/01/##

Hospital Medical Group,

I submitted what's below to those addressed. No response.

Is it your policy to ignore a (disabled) patient's cry for help?

You have an opportunity here to do some good, don't blow it (off) like everyone else…

Please, help me.

----

PCP Office, Doc,

I feel it is important that someone in your office read (all of) My Story [Attached; To the point, pages: ##] about the difficulties/ pratfalls of Surviving Disability. Lack of (proper) healthcare is a common theme/ cause throughout.

I cannot do this on my own anymore, nor should I have (had) to.

Surrender
2023/01/##

Hospital Medical Group,

I am reluctant to dissect my ebook PDF just to make it easier to get to ‘the point,’ thereby ensuring it is taken completely out of context. [If it is too much effort for the reader to scroll to the indicated pages, then that is the wrong reader I seek.] The whole story is the whole point: everything that is wrong with me (/my life) is covered within (intentionally or not). What I need is someone (preferably, a Doctor) who can/ will take the time to see the Whole Picture, not just zero in on a few symptoms (/keywords) to reach their determination (of elsewhere to banish me). [Failure to see more than (/past) a quick referral opportunity (to no longer be their problem) is what has led to my disastrous disabled decade (not just medically).]

I asked Doc if there were other avenues we should be pursuing, rather than ‘all eggs’ waiting (/rotting) in one Referral ‘basket’ to see me, maybe later [but which never happened]: No Response (again). My Financial Assistance expires later this year. [I likely will not qualify again; yet still I cannot afford Medicare B.] My situation is more dire than can be solved with just one referral within the year. I seek that someone (under your healthcare umbrella) who recognizes this and can (/has the authority to) fast-track getting me the Help I require that has for far too long been out-of-reach/ delayed/ denied/ ignored.

Inspire
2023/02/##

Hospital Leaders and Trustees,

It appears I must cast a wider net…

Two weeks have now passed and still a six-pack of your Chiefs have failed to (order a subordinate to) do anything to Help Me (or even to reach out), despite how precarious they consider my situation to be.

As such, I am preparing another entry (below). Is this how My Story ends… With another cowardly duck and cover? Couldn't be bothered to (actually) help the poor cripple? Abandoned, again?

[You should be embarrassed, professionally.]

Could we please work on a better ending, together?

Along the lines of– ‘Somebody Finally Saved Me?’

[Better than– ‘Disabled, Abandoned, Endangered.’]

Be well.

----

["afterthought"] [Speculate] 2023/02/##

Hospital Chiefs,

Kindly, pull your heads out of your bureaucracies for just a moment and take a good look at what ‘your people’ are doing wrong… MedicalMaladventures.org [One chapter of my true story.]

Must my peril become more tangible/ tragic simply to be taken seriously, treated humanely?

How many other lost souls have been waved off, by your organizations, into Oblivion?

Try Harder. Please.

Lives depend upon it.

ps. This isn't a Tier One/ Two Support problem, they just do what they're told to. Blame Higher.

[One Week Later…]

And still, nobody has gotten back to me, anywhere in your organization(s).

Not your Fault/ Problem/ Concern (/Patient/ Department): Do Not Respond/ Act.

Thanks for Nothing.

[Later…]

Regarding the Welfare Check you called in on me… Problems:

1) That you dispatched the cops, rather than calling/ emailing/ texting (to check in on) me first, is troubling.

2) That a police officer pounded on my door, shining a light through my windows at ‘late-thirty’ last night, scaring the hell out of everyone here, is not okay. [Having then to explain why they came a-knocking…]

3) Worst of all, that it took (you) 30+ hours to perform a Welfare Check, when clearly you were concerned enough about my Safety (/your potential liability) to get ‘the law’ involved, is an Outright Failure.

4) If just one among your horde had bothered to give a damn anywhere along the way, it would never have come to this…

Try Harder to Get It Right, next time.

Too often, lives depend upon it.

[Fortunately, not this time.]

Shall you now resume ignoring me?

Or perhaps instead: Help Me?

Please. I insist.

[ps. Rhetorical: Were I to set myself on fire on your front lawn, would you bother to put me out or instead call/ wait for the fire department to do it (for you)?]

[reply:0]

power-ups
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Complain
2023/05/##

Hospital,

Something was Wrong, I contacted my PCP's nurse, described my troubling symptoms: it was suggested I proceed to the ER, posthaste. I arrived about an hour before the place started filling up.

The Waiting Room: More than a few people with wracking coughs were not wearing masks. Most patients were on their phones, which is not unusual, but several were without earbuds and the volumes way up. Rude, period. One poor woman was lying on the floor near the bathroom for at least four hours (last time I peed), occasionally sobbing, clearly disconcerting to all other patients (who had to step over/ around her). I overheard a mother threaten to beat her kid if she didn't sit quietly, in a room full of sick people (coughing/ moaning/ crying/ puking) with no distractions/ toys/ books/ daycare provided by you for the (healthy/ sick) kids stuck there. [No option offered/ allowed to wait in our cars instead, either.]

About two hours after arrival, I was summoned by the vampires. It was never explained what they were checking for, asked whether I would even agree to such privacy-invading searches. Nor was I provided with an IV tap, which would have been the appropriate time/ place for such a thing… [Though, props to the one who stuck me: did it better than any other vamp I have encountered; didn't miss, stab through the back of the vein, jiggle it around while (un)plugging stuff (five vials worth), like most others do. Neat, clean and quick.]

About thirty minutes later, I was moved out of the waiting room into the adjacent hallway. There were paper dividers between the chairs which provided zero privacy between us, and all passersby from/to the food court. It was eventually my turn to be asked personal/ private questions, most of which were nobody's business but mine and the doctor/ nurse/ whomever(?) asking. Questions about: weight, diet, medication(s), urination/ defecation (frequency/ consistency/ color/ odor), fornication (or precisely how long without), genitals, booze/ drugs, abuse, self-harm… I withheld (perhaps pertinent) info during the inquiry as I did not feel safe to speak, (having been unable not to overhear the ‘private concerns’ of those already interrogated,) instead indicating everything was fine/ normal, when some such matters were certainly not. [So much for your Patients' Bill of Rights… (By my reckoning you flubbed #1-4,10,15.) It would appear providing appropriate information/ privacy/ safety/ dignity wastes too much (of your) precious time.]

A few hours after that, it was noticed I had not yet received my IV tap. A busy hallway, sitting on a regular (non-bloodletting) chair being not the ideal place to attempt such… It took two tries and multiple walking-aways to (again) procure all the requisite gear, rather than having a tray/ tacklebox with everything that might be needed (for mobile, multiple attempts)… The first failure resulting in repeated stab-throughs, significant seepage and bruising [pic below], and as there was no tray, the bloody bits being placed on the fabric seat beside me, which was wet-wiped after. [Prior to that, it was the prematurely unpackaged needle sitting upon that unsterile surface.]

At least four hours in, I was finally visited by the paperwork bureaucrat. Loudly verified was my personal information: full name, address, phone, email, (lacks-of:) insurance, employment; which everyone overheard. I was then asked the “Religious Preference” question, which, best I can tell, they didn't bother to record my nonstandard answer. [And why, after decades of being a patient of (the various practices affiliated with) your hospital, was this the first time anyone bothered to check?] A tablet was handed to me with no explanation of what I was signing, just a Sign Here box on the screen. I asked what I was agreeing to, can I read it? Seemingly unable to bring up the agreement, apparently having never been asked to allow a patient to read what they sign, first… I said forget it, signed your infernal contract. [Knowing if I didn't agree to whatever (legal, billing, bureaucratic bs) it stated that immediately would I be shown the door.]

Some point thereafter, I was led to my CT scan. Props to the person who did the leading (down several hallways packed with patients ‘parked’ alongside the way), having recognized the dour look on my face upon approach and applying the appropriate level of sarcasm to compliment my mood. [Give that aide a raise: the only one to make me smile.] In the CT room, I was unceremoniously told to drop my pants, but not remove them, with no concern/ regard for the four-to-five people looking at me just behind the slightly tinted glass, or the (still) wide-open hallway door. The scan went fine, quick, although thrice was explained it would feel like I peed my (polkadot) underpants upon injecting the radioactive dye… Yeah, I got it the first time. [Also, no concern/ regard given for any electronics/ jewelry/ food/ meds on my person or in my ankle-pants getting an unnecessary dose of radiation.] Then, it was back to the Waiting Hallway.

Later, I was provided my diagnosis, handed a pill, and informed that I had to inform my doctor's office of my diagnosis and to schedule a follow-up should I fail to improve. [Rather than you digitally informing my doctor, it was left to me such that should anything go wrong (after I left) it would be not your/ their fault for failure of follow-through…]

By the time I signed my discharge paperwork, was pointed vaguely in the direction of the exit, seven hours (and ~500 pages of my paperback) had passed since first I entered.

Shame on you.

bloody fail
Reply: “Our review has been determined that all medical care and treatment was appropriate and administered appropriately.”
ow, my pride.
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Concern
2023/06/##

Hospital Medical Group ("You"), VP,

To summarize the past two-or-so months, going backwards…

+ [The non-reply to this message (from this disabled still-your-patient) makes it four-in-a-row.]

– That would be a No Comment as to whether you passed along my concerns/ complaints to the VP specializing in Behavioral Health/Wellness.

– I expressed my frustrations; you again sent the police to my door, citing: nonspecific ‘concern.’ [Thereby henceforth should anything happen to me: Not Your Problem (/Fault), anymore.]

– Your P.C.Provider's Office informed me that I am no longer to be a patient of theirs (come the end of the month), knowing that means I am screwed out of any hope of getting better. [Nobody wants to take on new patients in their #0s with disabilities and no insurance…] I can rarely even get a proper referral processed anymore. [7 months later: no appointment.]

– I informed your Provider that I no longer Trust their/ my doctor, after getting nowhere pointing out to Doc, them, you the many reasons/ failures why. [Your Reply: “…Doc has made every effort…”]

– Nobody once mentioned PROVIDER2, a nearby affiliate/ partner supposed to handle mental/ emotional health issues that you/ yours were unwilling/ unable to discuss in writing: forbidden by your policies… I can only presume, as nobody would address/ acknowledge my repeated upbringing of such concerns. [Instead, playing liability dodge-ball/ hot-potato/ musical-chairs with my emotional health/ safety.]

– I questioned Doc's commitment/ compassion, to which most everything that followed was self-defensive, patient-faulting, system-blaming.

– Doc ignored my requests to see the content of the Referrals submitted: having failed to properly fill them out in the past, leading to months+ wasted, several times, causing me to more-than-once lose hope in ever getting Diagnoses.

– I repeatedly asked my Doc, Nurse, Provider if I should be concerned about my blood, having received several abnormal/ elevated readings across months-apart draws/ tests: No Response.

– Doc dodged content in those (first) few messages to which were poorly responded, having Ignored significant Concerns.

– There was that whole ER debacle. A matter which you consider resolved, appropriately.

– Your patient portal lacks proper two-way conversational capabilities, was clearly not designed to accommodate disabled patients.

Please acknowledge, if nothing else, receipt of this message.
Where do We go from here?

 
Fail
2023/09/##

HOSPITAL.PROVIDER.3,

SYMPTOMS.HORRIBLE are often indicative of a (far worse) Problem. Rather than addressing the potential Cause(s) further, merely a referral (to treat Symptoms) was sent by you to PROVIDER.ALT.2: who cannot see me until Next Year.

Could you please find me someone, anywhere, who will see me somewhen far sooner: whom offer full disability-financial coverage? Perhaps also/ instead (in the meantime) procure for me a provider/ specialist to rule in/ out anything Worse I/ you might/ should possibly be Concerned to have afflicted me so (suddenly)?

How the request is worded matters, allow me to reiterate: "CONFIDENTIAL" would be helpful knowledge to include (this time), such that they shall understand the severity of my situation, and perhaps try harder to help.

I had already lived with whatever this ‘something new’ really is for two months awaiting my first appointment. [Having begun the same time I failed to seek help after nearly dropping dead, unexpectedly: concerned more with the cost it would inflict for an ambulance ride: which wound up being called for me anyway, a week later.] SITUATIONS.UNTENABLE: but that is not living, and certainly should not be my (uncertain) life for another four+ months awaiting yet another appointment (to address effect, not cause), as the days grow darker…

Merely passing me off as a Referral (into the void) has unfailingly yet again failed to help me. Instead: Be Helpful. Track down for me someone who Will Help, gives a damn, soon. Please. [And thereby shall I no longer be your patient/ problem: same as how I came to be unloaded upon you.]

I question how well I will handle yet another ‘chronic’ condition: undiagnosed, untreated, unassisted.

Concernedly,
Your Patient

React: “Unfortunately, we cannot influence the wait time.”
 
Ticking
2023/10/##

Hospital Medical Group,

(another) Something (different) was Wrong. I went to Urgent Care. They got only some of The Problem(s) right: CONFIDENTIAL. The doctor failed to properly/ thoroughly EXAM.STANDARD, and missed something obvious. Further, nothing was done to address the AFFLICTION.CURABLE, which I made clear to mention, repeatedly.

Three days later, in (preventable) excruciating pain and delirium, I (dangerously) drove myself to the ER. Wait and wait for the SCAN.STANDARD. Then wait and wait and wait and wait… all the while I was silently tweaking out: your waiting room is disturbing/ distressing to the (not-just hypersensitive) senses. Four hours later, surrounded/ boxed-in by sickness/ suffering, I was (already) about to lose my shit, when someone bumped into my wheelchair, nearly dumping me out of it. I had a panic attack, alongside a rather public freak-out… Humiliated, I left.

Four hours later, a nurse called to check on the status of my IV tap: was it still in and who had taken it out? I was rude in answering the question and hung up. One minute later, another someone else called again to check on the status of your missing equipment, but not the status/ safety of your missing patient. Before I could get the chance to ask what my Diagnosis was, they had already hung up. (Rude.) Mind you, that means it was Eight Hours after the scan before anybody sought To Examine/ Inform The Patient, only to find them (and clearly more importantly: your potential-liability equipment) Missing.

Twenty-four hours later, nobody had bothered to call/ email to let me know what The Problems/ Results, for which I went to the ER, were… If a (disabled) patient cannot withstand the impatient/ inhospitable conditions of your hospital waiting room, (endlessly) awaiting an Answer, then they do not deserve one? [One week later: Nothing.]

Would it help make (/force) you (to be) a better provider if I were to drag you to court/ press to detail your embarrassing lack of professionalism experienced during this year (alone), over all your departments and affiliates I have encountered: persistently/ negligently having failed to help your (disabled) patient? Your every attempt to dodge liability/ responsibility has only accomplished digging the hole deeper and deeper. Rather than me throwing you in, perhaps instead you might give me a hand climbing out of my own nearly-dug grave?

I will be sure to name/ blame you in my obituary if you believe remaining silent/ avoidant/ unhelpful to be the optimal/ safest approach to (continue to mis)handle Your {undiagnosed, untreated, unassisted, unaccounted-for, uninformed, unresolved, uninsured} Patients.

Get your shit together, please.
Lives Depend Upon You.

Certified Letter: Patient Behavior Agreement:
“…repeated violations of this agreement may result in
dismissal from All Hospital Medical Group locations.”
power-ups
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Question
Policy
2024/03/##

Hospital Medical Group II (HMG2: North),

Before I give up (hope) again, please take a look at all the ways your policies/ procedures failed to help this person with disabilities. [Attached: 2+ months, 20 pages] Please, stop treating me/us as ‘potential liability’ to be avoided. Instead, consider (those like) me as a learning experience: worthy of a second chance (to not do so poorly), to try harder (to not abandon out in the cold) next time.

1) Failure to Provide Reasonable Modifications– Forcing people with disabilities to accommodate your too-many phone-only (next-level) departments/ contacts. [If we cannot use the phone (ourselves), there is nothing your employees can/ will do to escalate/ further our case/ cause, as demonstrated.]

2) Mental Health Issues are a No Comment Subject– Cannot even be acknowledged that they were brought up, nor even other places suggested that such matters could/ should be taken, instead… [Overcompensating for potential liability, at the expense of the ‘endangered,’ (repeatedly) asking for help…] Not Acceptable.

3) Failure to acknowledge message(s)-received– If your employees feel the need to upfront declare your spam filters make communication unreliable, time to adjust your settings. [That, or it is just a pre-excuse to non-reply when ‘forbidden’ (or uncertain how-to-respond) topics arise: like Emotional Welfare.] Providing non-responses to (repeated) ‘near-crisis’ declarations is (so very) far from encouraging, nor is it the responsible behavior (expected/ required of healthcare providers). [Even TV episodes now provide us ‘hotline’ contacts.]

4) Suspicious Messages– What was going on with those financial-assistance links I received (weeks later)? The (no-reply, wrong-domain, non-portal-delivered) emails with their blind-link-buttons (to not-your-website, domained-differently than their banner logo) provided no context, explanation, instead jumping straight into: "Upload your identity/ financial documents here." [I never got an answer as to whether they were legitimate: it was left to me to pick up the phone (and dial the number the emails provided).] *Klaxons Blaring*

5) Blind Hand-Offs to other (unnamed) people/ departments– Without an assigned point-person/ place, when the referral goes wrong, or goes unacknowledged, there is no way to follow-up with them. [A common tactic to shirk responsibility: divert ‘the problem’ out into the void, and then ask us to be patient.]

6) Patient Portal– Provides insufficient space for us to write. Had to shorten, and even break-into-parts, some of my messages to send them. [This was before I had to come in to your local office just to procure an email address, rather than giving up, long before (/without ever) being informed…]

7) “We do not have any available PCPs accepting new patients.” As my nearby provider is ‘unavailable,’ perhaps then there's some/ anyone (else) among your extensive network of healthcare professionals who can help me?

None of these issues were in any way the fault of those I interacted with.

They were dutifully adhering to Your Policies/ Procedures/ Limitations.

Bureaucracy is proving to be the Death of Compassion/ Progress (/us).

Please, Help Me.

<ADDENDUM01>
[Months Later…]
[Re: Financial Assistance]

DHHS,

For the Final Time: over-the-phone is incompatible with my disabilities.

This was acknowledged by your Bosses, last year. Talk to REG.ADMIN and/or COMMISSIONER.

Further, "Patient Advocacy Co." is my Authorized Representative. Yet still, here you are, engaging directly with me, instead. [Disrespecting my disabilities, registered accommodations, legal rights, again.]

Hand my case over to the bosses before someone gets the whole department in trouble…

----

Patient Advocacy (sub)Co.,

Sorry to waste your time by taking a stand, fighting against bureaucratic stupidity/ inequity, directly confronting (those who erect/ accept) the obstacles to efficiency/ disability, proposing alternative pathways (around their carefully/ callously constructed gambit of disqualifiers).

I thought the point here was Advocacy. My mistake.

I'm still not answering the phone…

</ADDENDUM01>

Free (in-network) Healthcare

<ADDENDUM02>
[Re: Failed Accommodations]

HMG2 Patient Relations,

[To summarize my 75-page transcript/ complaint letter, as requested…]

Isn't it frustrating when you do not understand what another person wants/ means? When you are confused by the way/ why they do what they do? When what you need from them they are unable/ unwilling to provide? (Or simply avoid the topic/ request/ problem altogether?) When, to get what you want/ need, you have to instead do it their way, being unfamiliar/ uncomfortable/ incomprehensible? (Or downright counter to your (dis)abilities/ process?) When there are no shortcuts, when there is no cheat-sheet, when what is asked/ expected of you is unclear? When there is an overwhelming amount of data, in a lingo/ style/ process you barely comprehend, you must navigate (unaided)? When you must-have followed their path of A leads to B leads to C leads to D, when what you want/need is just D? (When repeated requests for ‘Skip to D’ are denied, wasting (y)our/ their time?)

Suggestion: Have two(+) people at HMG2 (from different departments/ levels: please include a psychologist) follow my journey (of the past dozen years), take notes, and then compare/ contrast their takeaways from taking the long way around, same as I had to. How different were their assumptions/ conclusions from reading the (compounding) frustrations of a person with (communication) disabilities, over the course of months (/years)? Start with: How many times did I have to repeat myself, on how many topics, that only eventually/ never got any ‘acceptable’ answers/ remedy/ response? How discouraging that all must be, again and again and again, when your life/ health/ future depends upon it?

</ADDENDUM02>

No Response

<ADDENDUM03>
[Elsewhere, Later…]

PCP, HMG2.2,

Weeks having passed, patient repeatedly requesting Psychological Consultation: ignore, avoid, evade, miscommunication, bumble, fumble, stumble, excommunication, delay, delay, delay, Request Denied.

Your Emotional Welfare Support System is (dangerously) deficient in its (failures of) design/ deployment.

How does HMG2 feel about how this has all been (mis)handled by your facility, under their letterhead?

ps. Doc, I could really use an Advocate right about now, rather than yet another rejection…

</ADDENDUM03>

Discharged From Care; No Trespass Order Issued

<ADDENDUM04>
[Invariably…]

Most of the Above,

Your Refusal(s) to Accept/ Escalate Disability Concerns (as valid) always the Final Insult.

Your Failure(s) to Accommodate topping the list of Complaints.

Anyone able/ care to do ‘the right thing’ here?

Take Me To Your (HMG2) Leader(ship).

This is a Demand for Parley.

“Silent.,” Esquire
~ Justice of the Peace

</ADDENDUM04>

No Response; Free Healthcare Disapparated

<ADDENDUM05>
[Re: Potential Cause(s)?]

TOWN,

Thrice asked. Thrice ignored?

Would you rather I take this matter up with NEWSPAPER: such to follow-up on their previous article, to show how the Town has since ignored/ dodged the problem, to the detriment of your (poorer) citizenry? The near-to-me Town Dump is a Registered Contaminated Site, for which I am in the projected ‘seepage’ pathway. Their article is how I (eventually) became informed, rather than by you.

Had I been informed by you (long ago) that there is a problem, perhaps I wouldn't have been sick for quite so long. As explained, the standard free/ basic water/ medical tests do not look for those particular contaminants that may well be affecting me and my neighborhood's ground/ drinking water. Again, I hereby request of you to conduct the requisite tests, I cannot afford. This is a Public Health Issue (for which You Are Responsible).

Burying your head in the (contaminated) sand will never remedy ‘the problem.’

Please, Help Us.

ps. Happy Independence Day.

</ADDENDUM05>

Free Standard Water Test

<ADDENDUM06>
[Re: Side Note…]

Town Administrator, Tax Collector,

Concerning (again) your Assessment Values, without having set foot upon my (decrepit) land, being determined to more-than-triple my Property Taxes… Please, do not just (again) dismiss my request for a Review, without comment. That magnitude of a tax-hike could/ would cost me My Home…

</ADDENDUM06>

No Response

<ADDENDUM07>
[Re: Knock Three Times (Part 2)]

Select Board,

Please acknowledge receipt of my messages.

Or is ignore/avoid/evade how this whole town runs (away)?

A sick/poor/disabled neighbor again requesting your assistance.

Is this how/where/why my ‘disability quest’ ends?

My home/health/future are in your hands…

Have Mercy?

ps. Happy Labor Day.

</ADDENDUM07>

<ADDENDUM08>
[Re: Part 4]

Select Board,

Being ‘interrogated’ by a quorum (of politicians, live online) would be impossible for me to handle, therefore I must politely refuse your offer to palaver (publicly). I instead request Accommodations be considered: Privacy being important to me.

If after everything I have written (these past few months) it remains “unclear” to you what I want/need/ask: time (for you) to call in a disability specialist/ advocate, as it would appear I am incapable of expressing myself clearly enough to be Understood (by the honorable ‘Village Elders’). Tried though I have…

Simply stated: I Seek the Help of My Village.

[Having already failed everywhere else.]

Context: alpha.InspirationalAgony.pdf

[Hint: it's not about the website(s).]

Please Advise.

</ADDENDUM08>

No Response

<ADDENDUM09>

Village Leaders,

Yes, that would be the typical reaction to reading (/discovering your part in) My Disability Quest: turn out the lights, pretend you're not home, hope/ pray I'll go away, tell no one. That hurts, unfailingly.

How many times have you had to beg for help? How often do you get turned down/ away, ignored, avoided, evaded? Doors endlessly slammed in your face? Try barely surviving that way for a dozen years.

Someone(s) here in Our Village can/ will Help Me.

Clearly, you won't take any Responsibility.

Please, find me those who can/ will Care.

I beg you.

</ADDENDUM09>

“We cannot take any further action without knowing what exactly you're requesting.”

<ADDENDUM10>

State/Federal(-funded/ run, 3x) Disability Advocacy Groups,

I am uncomfortable being more specific (with a gatekeeper) about my disabilities than I already was ‘in general’ (over the course of 150+ pages, covering multiple town/ state/ federal, gov/ med/ health/ enviro agency transcripts, I have provided you) so far. If nothing in any of all that has merited your ‘interest,’ then nothing else I could say would convince you otherwise… Legalities/ lawsuits aren't the only way to help (/hurt) people with disabilities.

Consider:

• Are you (presently) confused?

• Having trouble understanding me?

• Did I fail to properly fill out your form(s)?

• ‘Does Not Compute’ equate any of my answers?

• ‘D) None of the Above’ auto-disqualified me, again?

• Did I somehow trigger a ‘potential liability’ (red) flag?

• Are you (now) unsure how and thereby unable to proceed?

• For any of the above/ other/ undeclared reasons?

• And therefore cannot (ever) help me?

• Offering me the door, instead?

Be better than (y)our opposition.

Being unlike them is how to defeat them.

Please, point me in the direction of (/preferably, provide a direct introduction to) those who Can/ Will Help Me, without (first) requiring actionable litigious concerns, whether they be in your organization/ network or elsewhere. [You aren't the only one who works here, right?]

Websites Quotes:

[Abbreviated: “protection and advocacy; authorized by federal/ state statute; pursue other appropriate remedies; proud partners with; eliminate the barriers; integrated lives; free from abuse, neglect, discrimination; ensuring your rights; with dignity, respect; accessible healthcare; improving mental health services…”]

Look to your own Barriers, and Mission/ Vision Statements. Try Harder. Try Again.

ps. I again asked the Town for the PFAS Test Kit (having now thrice offered/ failed to deliver, since July). There has been no response. Happy Halloween.

</ADDENDUM10>

1) Search Links 2) “Our office cannot assist you.” 3) No Response

<THOTS>

– This is the way the world ends… smothered by bureaucracy (in our sleep, for the insurance/ tax money).

– Leadership finally found the cure for having to care: remaining unreachable.

– (death by) Neglect is cheap(er), giving a shit costs.

– Does not compute = does not pass (along).

</THOTS>

life, disabled.
samples
 
Question
Faith
2024/09-11

(Local) Churches, Faithful,

I have lived in TOWN/ VILLAGE most of my life, my daughter for her entirety [whom I brought to your Mommy&Me playgroup, back in the day. She has volunteered for your Homeless Charity, a few times]. I respect your Faith. I believe in the Teachings of NAME, alongside others.

I have been struggling with Disability for a dozen years now (/for longer than I can remember). The futility of fighting alone (in silence) has taken its toll. Forefront among other concerns: I seek an advocate who can ‘speak’ for me(/us).

I figure, if anyone can better converse with Authority, it would be the ‘Better Angels’ just down the road… Please read through the attached [25+page] confidential transcript of my latest attempts/ failures to Communicate. Then please send me any initial thoughts, questions, concerns. Then let's meet, palaver (one-to-one, preferably).

[If you know anyone who might enjoy (disliking) a mystery/ puzzle/ tragedy, and/or could do something productive/ educational with my (failure of) ‘Inspirational Agony’: pass only that along. Appreciated.]

I humbly(/clumsily) request your help.
Be well.

power-ups
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