Poland Syndrome Support

My Poland Syndrome Story

Poland Syndrome Story Doctor

This is my Poland Syndrome story……by Mike Denney

Anyone who knows anyone in their local medical community, might well have overheard a doctor they know, at some point, share their own opinions of anyone walking in, having been ‘self-diagnosed’ with any kind of ailment. The distresses actual physicians must share over that experience must be as common as single drops of rain on any rainy day (and—even more likely, their collective disdain for such stuff).

Even worse, imagine you were that doctor, and the patient ‘pulling’ such sheer nonsense, was the 12-year-old child in a family who’d been in your family practice, for literal decades.

I, of course, was never that doctor.

No—I was the little twerp who’d always been just smart enough to be trouble for several local authorities, from teachers to our local minister, and I’ll never forget my doctor’s somewhat dubious reaction when I told him I’d found an article in the local university library that seemed to describe the exact, precise, symptoms I’d laid claim to, at my tender age.

In twelfth grade, an elementary health screening had determined I had Scoliosis, and I was overly-concerned I’d begin to be the target of cruel jokes and even bullying, if diagnosed with it. I argued briefly with the school nursing crew that had administered the tests, realized quickly how ridiculous that was (there being basically no treatment for such they’d deemed such a ‘light’ case of Scoliosis anyway), and left it alone.

The potential that my schoolmates would remember this the next year at Jr. High, as well as my own growing suspicions in front of the mirror at home that ‘something just wasn’t right’, nagged at me, though, until I actually volunteered to accompany my mom while she studied over that Summer for a degree in Library Science at our local Western Kentucky University.

Poland Syndrome Story Microfiche

Realizing she had lucked into the ultimate ‘out’ as far as ‘supervision’ for me for the entire Summer, she relented fairly quickly (parents note: not so quickly it spooked me from going through with my plan), and so, I spent many long, tedious hours in the local Helm (Reference) Library at WKU that year, running around, learning how the term ‘nude’ was cataloged in a mainstream reference university library, and eventually delving far enough into the old 2nd-level microfiche resources to find a single, revelatory article which appealed to my sense of self-importance, uniqueness, and having something really inexplicably wrong with me (if the catch-phrase had existed in this form in 1979, my expression would’ve surely been a loud, hush-worthy, “YESSSSSss”!).

What I’d ‘fiched’ out for myself was fairly heavy reading for most 12-year-olds—an article taken from a scientific researcher’s (in retrospect, most likely Patrick Clarkson’s) published work on a ‘condition’ known as Poland’s Syndrome, which, in turn, cited the original studies and notes made by Alfred Poland.

As the kid of a High School English teaching mom who was already returning to school for her ‘3rd‘ teaching certificate, I’d always relied on reading as a way to survive other subjects, based solely on my very high aptitudes in reading comprehension (also helped me sound more intelligent and mature than I’d ever deserved). My reading skills helped me get through the exceedingly high number of footnotes and extraneous (for my admittedly selfish purposes) superscripted references in the article, until I felt I had a fairly adequate grasp of what was wrong with me.

I’ve always thought that this intimate understanding of the scientific, physical aspect of Polands helped me cope with the next few years I spent, like many teens, in front of a mirror, looking for all the same ‘socially-unacceptable’ and undesirable traits foisted upon us all during youth. Knowing was all that battle, even if knowing meant accepting myself as ‘so very’ different (later downgraded to ‘somewhat’ different, as age makes me consider the larger pictures of life, health, and what is ‘social’ to me now).

Poland Syndrome Story Research Books

The more I learned about this condition, the more I have come to see it as something of a rarity among rarities, a condition with many ‘sufferers’, or those affected, but which has not really gleaned the favors of a large enough medical fraternity to produce the research necessary to bring to light enough knowledge about it to answer the questions of those currently suffering, before we pass on. Very strange, even in the phraseology…so much like the old nursery rhyme about ‘the old lady who swallowed a fly’, the cause-and-effect nature of this ailment spans many fields of knowledge, yet still seems to evade any real causation itself…or even categorization!

So, now that you’re up to speed (and going nowhere fast) about my little bout with ‘self-determination’…here’s how it affected me, how it still does, and the nagging questions I still have about Polands Syndrome.

First—briefly as possible, I’ll confide in readers that I was diagnosed with some mental depression during my later teen years. My mother had seen it in me since I entered puberty, thought it was almost normal during those difficult years, and had noted that it had seemed to progressively worsen as I neared age 20.

This was very true, except I’d never felt these progressive changes—I was still stuck in the teenage angst and personal mire that everyone naturally outgrows during the normal advancing stages of life, bound so closely with social stages, that some still take for granted (and many are paid to research and treat!). So I saw a psychiatrist from age 20 until just under 10 years ago, when—ironically–I found myself hearing only the same aches and pains of others my age, to the point I dropped all my seemingly self-imposed, at times even magnified, ‘mental anguish’, depression, and outright self-hate, began realizing I was entering into the phase of life where noone can afford the time to be so emotionally self-immolating, since basically we’re all running out of it so damn quickly!

Until that point, though, I was a wreck, an absolute wreck—whether it’s my ‘star sign’ (which I’ve never lent credence to, but actually does indicate a tendency towards perfectionism…yes, ‘Virgo‘), or possibly even my other excessive personality traits (a little megalomania here, some acridly sardonic wit there, a dash of self-deprecating ire…jeez, no wonder I’ve felt ‘left out’ for nearly 3 decades)…all these traits have always seemed to amplify the simple, societally-induced, yet entirely self-ascribed, notions of an unsettling, overall BDD (body dysmorphia) that indeed haunted the finer aspects of who I became, to this very day.

Poland Syndrome Story Quote

Those last paragraphs still combine my first two outlined points—how this disorder affected me, and how it persists in doing so; but I’m doting on my last point that Polands Syndrome does indeed affect those with it, at very different levels, but mostly that it’s all related to our views of who we are. I could draw any number of comparisons, from those living with physical differences due to birth, to those who met this fate later in life, due to accident, or even military service…but those are self-apparent, and all too numerous, and I’ve already droned on far too long for this little article, so I’ll jump ahead to making a few more nagging assertions in closing here. Hey, I promised—just read back to the end of the 3rd paragraph prior to this one! Oh—and I’ll throw in some interesting observations, as well (aren’t we ALL lucky now!).

My first nagging, interesting point is that—now, as we near the bicentennial of Alfred Polands initial observations, and certainly hundreds, if not thousands of years of historical accounts of those having ‘defects’ that surely could be related to Polands…we’re only into the most basic understanding of the cause of it, today. I myself will never go without furthering my own interests in it, as it ‘claimed’ my teenage years (today we’d say ‘PWND’ or ‘owned’ them), and many of the ensuing years where I felt I surely would have been better off without it. I felt my early aptitudes in sports were muted by this problem…certainly I felt it ‘PWNING’ me during the entry ‘PT’ (physical training) test that would result in my being barred from military service. After learning that 2 years of ‘Jr. ROTC’ (Reserve Officer Training Corps) in high school would let me avoid ‘boot camp’ (where I had no doubt I’d fail), I took the time to enter those classes, participate in every extracurricular activity required by those classes, and many additional credit ones, as well. I enjoyed those, did fairly well in them, and learned to get around my physical defects in the required fitness routines (building up my triceps instead of my missing right pectoralis muscles, to easily perform the required number of pushups in way under time).

Poland Syndrome Story army pull ups

Always a very slow runner (yet avid cyclist!), I virtually transformed myself into a runner just before the PT test, and came in third in overall tests held the day of mine…yet the physical constraints made me by Polands came back to haunt me in the one test I failed that day—the pull-ups, and I’ll never outlive the words of the drill Sgt., just as I’ll never forget them: “Can’t you do a pull-up for your country, boy!?”

My answer, after nailing every other test that day with excellence, still haunts me today: “Not for God OR country, Sir”. I was already into the explanation of what Polands was, to this loud, obnoxious, yet overly patriotic drill sgt., before I realized very quickly how little he really cared…that, after all (stressing all while keeping in mind how much I’d planned and lived to serve in the Air Force)…after all that, his job that day was merely to weed out the weaklings…which I still was, no matter how hard I’d tried to enforce sheer will on my own physical condition…my life.

So many things I feel were destroyed by this problem, Polands…yet not only can I not hate it, obviously…I have to realize that, to my knowledge (consumer-grade to many), I’m really very lucky. ‘Mine’ only affects me in having missing some muscles (pec major/minor, lats, and the ‘shoulder harness’ muscles, all on my right side)…and, in lieu of so much common knowledge of Polands, I often conjecture that it has something to do with some fairly rare asthma symptoms I have, some of which have me struggling for a single full breath of air, however. My ‘conjecture’ here is that Polands essentially leaves some of those affected with it, with ‘residual’ muscles actually inside our rib cages instead of having grown outside them, so…affecting our air intake the same way not being able to reach across our chest might affect us lunging after a ball of some sort in a sport…so, essentially, the muscles left inside my right rib cage might actually be working against my breathing apparatus…instead of expanding, they contract, and vice verse.

Actually, the biggest thing I’ve noticed absolutely hating about having Polands, as I’ve passed middle age, is that somehow everything I love eating makes me absolutely sick much of the time (especially fried chicken, which I never knew I’ve loved enough to marry, forever!). Yeah,right, join the club, you say, as any sane middle-aged person 40 should. However, I’ve noticed only a few foods that routinely cause normal gastric issues with otherwise ‘normal’ people, causing me such major issues I’ve had to stop eating them, and I’m not seeing this repeated among everyone else I know. Also, gastric issues were listed among the top secondary symptoms reported by those with other, primary symptoms of Polands Syndrone.

Finally, one major bit of conjecture, which often has me beside myself, and probably should set me apart as some kind of ‘nut-job’. My dad’s vocation during my own conception involved handling literal tons of toluene-based ink, in his job as a press operator at a local printing company. His daily routine involved ‘patting out’ (with putty knives of various kinds) this ink, constantly keeping the printer rolling pads well-inked…all right out of the can.

Poland Syndrome Story chemicals link

Since it’s well-known that our awareness of the dangers of various commercial, industrial, and even consumer-grade chemicals, has increased regularly, resulting in warning labels, and sometimes even campaigns against these chemicals, maybe we should just comprise a list of the chemicals handled by parents of those with symptoms of the small collection of birth defects that have come under the Polands Syndrome nomenclature? It would be a start, and I can’t help but think we might begin seeing patterns, or even families and classes of chemicals, that might even lead us to some real answers, sooner than later (surely the new phenomenon of social-network-based cloud-sourcing might serve us well).

Until then, as for the body dysmorphia, I hope age truly is the ‘cure-all’ it’s rumored to be, by so many who ‘suffer’ from it.

Thanks to the fine people—my new ‘Facebook friends’–at PIP UK…who encouraged me to write this, because…well, obviously I’m not bereft of verbiage, but opening up on Polands isn’t necessarily my favorite topic, no matter how much it might extend public awareness of it.

Mike Denney

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