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losing priveledge
You are losing somethingThe extra you have isn’t yoursIt was unfair when was given to youDistributed unequally at birthAnd now it feels unfair to loose itLike you’re being stolen fromBut you are returning stolen goodsThe fair part is you sharingGiving up the extra you haveSo that everyone can have some.
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health I never had
I see health in othersAnd miss a life I can’t knowAn imagined experienceI grieve for what I never gotI morn the life I’m missingThe freedom I don’t haveSettling into a compromiseWith my imperfect bodyI’m frustrated by new symptomsTrapped in this tightening trapAs my body betrays meI adjust to the new normalBut I can’t live in griefSo I give myself space to feelLight a candle for my lossAnd then turn back to the life I have.
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I want a wife
Wish I could find a man to be my wifeWho’s totally devoted to my needsGives me endless free laborAsks for the bare minimum in returnA man focused on my desireTo be on display when I chooseWho’s aware I can replace himWith a younger, more eager versionIs happily barefoot in the kitchenMaking our house a homeSacrifices his own needsBecause my needs come firstAnd he would know his placeBecause I gave him my nameA wife is the reward I deserveMy prize and proof I won at life.
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cleave people from the herd
We’re your sickly and old
The ones that can’t keep upFalling behind in the raceThe ones you sacrificeYou see us as disposableOr you choose to be blindExcept you are setting yourself upFor a future of being culled, tooWhen you forget compassion and careYou ignore that we’re in your herdYou may choose to see usBut we can’t help but see you.
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a moderated life
I was a active kid and also sickly
I played rough and then later suffered
Never fit in school so I was a loner
But my family friends played with meI had a social group as a teenager
And I matched their social energy
I stated up all night and partied
And then crashed when I went homeIt was in my 30s that I saw the pattern
When I act like other people I pay
And the cost is tripple the fun
More days lost than fun gatheredI learned to live a moderate life
Chose stability in my symptoms
I grieved that life wasn’t like others
Gave up on a life I can’t have.
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not trying to blend
What if I am cringyA background playerThat everyone laughs atSelf aware that I don’t fit inBut also comfortable in myselfAnd that confidence shines throughBecause I don’t hate myselfI’d rather embrace my awkwardThan chase someone else’s idealAnd maybe some people mock meBut that tells me who they areIt doesn’t affect who I choose to be.
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not dying today
My symptoms aren’t acuteThey’re persistent and uncomfortableJust not urgent or life threateningI have treatements that workNot a cure but a way to manageAnd succesfull lifestyle changesThat make my symptoms lessBut you can’t call me healthyI live with symptoms everydayI’m surviving, not thrivingSome days are less painBut I can’t imagine pain freeI’m not well but I’m also not dying today.
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not a brave face
In a culture where tough is praised
And showing pain is weakThen I’m considered a whinerBecause sometimes I name itInstead of living in painful silenceI defy loneliness and issolationTake comfort from those around meBy bravely sharing my vulnerabilityAdmitting that living sometimes hurtsSpeaking up can’t remove painBut it can make it more bearable.
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not about you
My house is my comfortIt should fit my needsI keep it up to my standardsI don’t clean for guestsI live in my bodyMy asthetic is for meAnd clothe it as I pleaseI don’t dress for strangersMy behavior is my choiceMy choices may not work for youI have to live with my consequencesAnd I don’t require your approvalSometimes my actions effect youAnd that is when you get to careBut I still keep these boundariesMy life choices don’t disrespect you.
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decenter
Why do you center yourselfSpeaking for us but not to usGive me back my wordsDon’t talk about me or for meYour ignorance is quickly seenBut only by those in the knowYou try to gatekeep what I sayMake up words to avoid what I amMy learned experience rings trueEven when you suppress my story.
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living my truth
I’m not willing to lie anymoreThey like me hiding the real meIt allowed them to be comfortableBut it made me feel worseYou don’t want to hear about my dayBecause my day involves painYou don’t want to hear what I feelMy good attitude is back lit by painIf the real me was hatefulThen maybe I’d understandBut this is about social discomfortThis is about disturbing truthI’m outspoken but introvertedI’m employed and disabledI’m authentic with mental illnessI’m not looking to fit your mold.
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wife left in the hospital
In sickness and in health they sayBut it’s often a one sided promiseWe all agree boys run awayEager to escape emotional burdenBut men are no better at sticking it outWhen a woman needs supportMen feel they’re in the right to leaveIf a woman can’t serve her roleHusbands don’t stay to be caregiversIf a wife becomes a burdenChronic illness is a dealbreaker.
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skewed by suspicion
Why do you have expectationsOf how health should look or actYou don’t live in my symptomsHealth isn’t linear and we aren’t twinsWho taught you to doubt meTo question a wheelchair or caneEager to catch me in the actOf some malingering performanceWhy am I guilty until proven innocentYour view is skewed by suspicionOutright assuming I must be lyingMaking it up to gain attentionWho wants to living in this picturePutting on a long con for strangersGetting all this negative attentionLiving outside socially acceptableWhy do you think you are specialThat I’m makings it up for youThat you know the ultimate truthThat you know me better than me.
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Medicine exists for healthy people
Doctors goal is to get people healthySo when faced with chronic illnessA complicated patient they can’t fixOnce their diagnosis is completeAnd they’ve handed out treatmentEven if the symptoms are still presentThey wash their hands of usDoctors aren’t here for wholistic careFew are excited by a long term puzzleThe puzzle of confusing symptomsAnd rounds of inconclusive testsThey default to psychosomaticThey outsource the care of emotionThat is the role of a psychiatristDoctors want to conquer healthNot hear a frustrated patientWith never ending symptomsThey want to be the heroBut after multiple appointmentsIt’s easier to label malaiseThan admit their failure.
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not up or down
My morality isn’t vertical
You are not better than meAnd I am not better than youWe are both worthyAnd no one is undeservingNo onehad to tell me thisI was born knowing itMy ethics are horizontal.
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crazy cat lady
In a roundabout wayI traded my married lifeFor the title crazy cat ladyThe traditional roleWas sold as happinessBut didn’t give me securitySo understand, I don’t regretGiving up my faithless husbandAs marriage was no guaranteeI am more myselfThriving as a spinsterBecause I didn’t give up on me.
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only the old and sick die
A global pandemic comes
And the takeaway is eugenicsLong as the masses can surviveIt’s okay for the old and sick to dieThe public prefers simple comfortDon’t want to hear downer statisticsDon’t want a mask or a vaccineSure, you might get long covidYou might kill your family or friendsBut a party is worth the gambleMass spreader events are more fun.
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external judgement
Carrying around all that judgmentIt has to be a weighty burdenSo much to disapprove and disdainMust be a heavy arsenal to bearI’m sorry the dagger in your eyesBounce off of my lack of caringHate leaking from your gazeWill never be able to touch meBecause I’m not invested in youThe same as you’re effected by me.
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quiet quit is my baseline
The way they exploit you
Is the reason they won’t hire meWhen you work all those unpaid hoursWhen you give above and beyondI can’t live up to that expectationYou hustle to get a possible raiseI’m struggling to give what’s requiredYou network with all the right peopleI stand out because of my limitationsExploitation isn’t fair to either of usOur worth isn’t in dollars and centsYou can quiet quit and still have a jobI’m lucky they’re not looking for causeI wish you would act your wage.
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approval after the fact
If you hear my story
And then you feel for meWhere was your compassionWhen you saw me as the villain?Why do I have to explainThat life is hard and traumaticFor you to try and understand meWhat does that say about you?If you think strange is awfulAnd difference is unacceptableYou are always going to judge meYou will still want to change meIf I haven’t hurt youAnd I’m not out to harm youThen I’m not the one who’s wrongMy compassion isn’t conditional.
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burnt flavor
Idle lips seek my ears
An exchange of vicious banterCringe isn’t just in what you doIt’s also in what you splatterI avoid the burnt flavor you bringAs you season the world bitterI can seek a sweeter tasteAvoid the twisted taste you deliverYour art can be a saucy critiqueA smug feeling that you’re betterWhile I enjoy my grateful lifeWriten in a complimentary letter.
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resigned to pride
My frenemy, disabilityThis is my uninvited guestA squatter in my bodyMy long term companionIt can come at any timeAnd no one is safeYou may not know it’s thereAnd it’s rarely predictableNearly impossible to get rid ofEven making it behave is a struggleSo we adjust where we canAn suffer through the restYes I’ve come to accept itI’m even proud I love with itBut that doesn’t mean I like itOr that anyone else should want it.
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not the real you
I don’t know youBecause you don’t want me toYou hide away the real youBehind what others expectYour performance is perfectedThe person you think I wantYou were trained well to hideBut I can see your walls are upIt’s not for lack of my tryingShowing an active interestGrilling you like an interviewTrying to coax you outYou’re not evading my disdainIf you were to be real with meIt’d be no different than nowI definitely don’t like the fake you.
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mythical money monster
How can you have a billion dollarsAnd still claim to be humanYou are more a mythical creatureHoarding multiple lifetimes of moneyTrading our lives as commoditiesThey say absolute power corruptsIt’s cliche how you prove this trueYou con us to do more for lessRent us property on stollen landCharge extra for our necessitiesTrade our livelihood like collectiblesYou wear our skin, looking like us,As you disconnect yourself from usYou can’t own us if you know our painAs you desensitize yourself from usYou don’t feel compassion as you winBeing a billionaire isn’t ethicalMy words punch up at your moralityYou make yourself separate from usHoarding a mountain of gold, a throne,A dragon kills with its breathLike a billionaire steals without effortYour mythic existence exploits us.
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replace guns with therapy
Mass murderers are mostly men
They use guns to speak their feelingsAnger being the feeling they’re allowedThey take out their disapointmentTheir frustration and resentmentPunishing the world as they leave itDestroying any chance of escapeIn an act of violent suicide.
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accessibility for all
What if we had equanimityAnd accessibility was for allWhat if cost was never an argumentWe got what we need to do our jobWhat if productivity was not a valueAnd they forced us to self careWhat if they prioritized our lifeAnd made space for workers needsWhat if they didn’t make us competeAnd they created a spot for anyoneWhat if they saw us as irreplaceableThey were eager to keep us aroundWhat if they saw us as people firstNot dollars and cents on a bottom lineWhat if we could exist without themSo they never got to exploit usWhat if these weren’t “what if’s”They were rights instead of wishes.
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Self Advocate
You call me an armchair expertI call me a patient advocateMy persistent researchAnd being active in my careIs my superpower, not a faultYou have years of educationBut I’m an expert on my bodyI know what I’m feelingMy medical history is memoryI don’t get to ignore my symptomsYou can run standard testsAnd give up if they failYou can tell me nothing’s wrongBut your failure to diagnoseDoesn’t change things for meSo let’s agree to disagreeWhen you decide to dismiss meEven if you’ve given upI still live in this bodyThis puzzle comes with me.
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why the questions?
What does disability look like?
What does a faker look like?Why are you so suspicious?Why is your nose in my business?Why do you demand an explination?What is the value of your judgement?Who said I care what you think?Who made you think you know me?Why am I even talking to you?
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the price of mental health
Remeber that permanent recordThe lie parents told us in schoolWell your medical record is realAnd it will follow you in lifeIn order for a therapist to treat
Insurance requires a diagnosisTherapists put down an answerAn answer from one appointmentTrue or not, the diagnosis is on recordAnd medicine perscribed on recordA medical record that goes with youAnd when your general physician seesIf any symptom can be psycologicalIt can trigger them to dismiss youBecause you’re labeled mentally illThe price of seeking mental wellnessIs more that the cost of insuranceIt can be the curse of medical bias.
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don't know what they think
I’m battling a false ghostTelling myself horror storiesMy perception of their perceptionAn apparition of my own makingWriting dialog of what they thinkInserting my worst thoughts in themPulling preconceptions from the worldImagining them as monstrousBehind their mask of silenceBelieving they judge meWhen I have no proofIf only I could stopMy preconception.
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Aging into disability
Most people become disabledI don’t mean it as a threatIt’s just an unavoidable factInevitably we all get oldAnd old comes with more sickAnd medicine can keep us aliveBut treatment isn’t always a cureSo most of us age into disabilityLife goes on when we aren’t youngWe can survive without perfect healthWe can live a life not able-bodiedAnd the wisdom I’d like to offer y’allIf you notice a person with a disabilityIs that we all end up there eventually.
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no longer desired
As a girl I was susceptibleThe promise of princess fantasyOf a man to take care of meI romanticized my gender roleMy young mind rejected the dourWhat my elder women saidA prediction I would regretA promise that girlishness is fleetingI don’t choose to resent my youthAs I lapped up the male gazeAs I took care of my manAs I believed in foreverNo, I wont condemn my child selfFor falling prey to tainted fruitIt’s men that saw an expiration dateThat thought me better compliantI prefer to be angry at themResentful at their dismissalAs I aged out of male desireAge gave me the person I want to be.
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respectful, not patronizing
I don’t need to tell someone
That I don’t believe what they doIf that belief isn’t harming meAnd it isn’t an act of intimacyI aim for compassion and respectAnd sometimes that means agnosticIf they find comfort in their beliefWhy would I challenge that worldviewLong as they aren’t pushing it on meI don’t need to tout my skepticisBy explaining their belief to themBecause belief doesn’t work for me.
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at least some men
I’m not looking to date a man
Or invest into some grown boyGo ahead and call it man hateBut it’s really self-preservationSearching for an exception to all menMeans we have to roll the diceInvite the risk of real traumaThe feminist in me is repelledI would consider gender fluidOr some sort of non-binaryBut even then I’m doubtfulMy new romantic ideal is a rebelRejecting gender expectationsEager for reversal of rolesSomeone who wants to know meAnd all my wierd and flawed.
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abled accommodation
If you’re able bodiedYou receive accommodationYou just don’t know itThose of us disabledPresent ourselves as palatableOur silence is accommodationWe edit out the uncomfortable partsHiding the differences we canYou don’t have our lived experienceAnd always explaining is exhaustingOur patience is an accommodationNot asking or expecting too muchPutting up with nosy questionsExcusing the demands of explanationAccepting that compassion is rareEven being open is an accommodationWe put ourselves at risk of disgustSeen as entertainment or a curiosityTreated like an inspiration, an infantAnd not the expert of our own storySo we accommodate the worldWe make due with what we haveWe certainly don’t expect betterExpectation leads to disappointmentAnd fair treatment is rare to find.
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peace for me
Actuary tables don’t see my worthThey see an unimportant complainerAt what point am I flailing madlySuffering my sanity to a fruitless fightHow much life am I losingFighting a system that ignores meMy everyday has always sufferedThe burden of my ill healthSo you might understandHow I value the time I gainEmbracing peace over a battleI already lost the genetic lotteryNot choosing a war against medicine.
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no longer baby making machine
My nether parts stopped workingThey gave upon their ownDidn’t have to convince a doctorOr get any man on boardRetired from procreationI aged out of the assembly lineNo more questioning my choiceOr urging my submissionNo chance I’ll ever be a mammaI’ve gone men-on-pause.
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the lie of inadequacy
Sold a bill of goods
They say I’m imperfectThey promise a cureIf I buy this productI will surely get betterBut it’s a never ending loopA plate of false promisesA goal out of reachSelf hatred, doubt, and shameThat is what they taught meWhile I aim for the goal of betterAnother dollar spent to be perfectBut it’s mirrors and snake oilThey have no fix for my brokenThey made up the lie that I’m broken.
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Support from the sideline
Your voice has powerSpeaking with the best of intentionsBut if you are not one of usDon’t speak for usYou are easier to seeYour existence isn’t challengingBut they need to feel that discomfortThey need to put eyes on usYou are easier to hearBecause your voice is palatableYou don’t mean to hide our voiceWe need them to hear from usIt isn’t easy sitting on the sidelinesPassively supporting our protestBut that what we need from youStep asside and let us shine.
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considered expendable
Not considered in strategyOur lives considered less worthyForgotten during a tragedyNot as valuable as healthyLeft behind in an emergencyInconvenient to protect my safetyDon’t tell me you honor my disabilityWhen you risk my life so freelyAcceptable loss for the communityA burden discarded for the many.
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capitalism isn't romantic
There is a false narrative
That hard work will winThat poverty is by choiceThat productivity is a moral goodThat you can defy statisticsThat classism doesn’t existThat people aren’t biasedAnd that anyone can be on the topBut the truth isn’t romanticLife is more important than workThere are things we can’t controlMost of us aren’t exceptionalThe wealthy benefit from the poorThe system keeps you in your placeAnd work isn’t why you are valuable.
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nothing special about my needs
Don’t squirm awayFrom language you don’t likeConvincing yourself it’s rightTo paint me in a different lightYou can’t fix what’s wrongBy giving it another nameAnd when you demand I conformWhen you tell me what to sayThose words are not for meMaybe you feel powerful and safeWith a new set of termsBut your euphemism is in the wayOf my hard-won identityI don’t let you gatekeepWhat I choose to describe me.
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getting along at work
Mental illness doesn’t fit in
Sometimes a subtle odd behaviorIs enough to be labeled an outsiderBias others against your favorWork expects us to be the sameAnd to become a part of the teamMeaning acceptance from othersWe are graded on belongingSkills and productivity are the goalBut neither guarantee retentionIf you can’t find a way to blendWork will seek someone better.
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what you can do
Venting to vent doesn’t work
If you want steam to subsideRemove flame, water, or pressureOnly you can alter your reactionWhen fighting fire with fireYou lead to a bigger fireYou are likely to burn yourselfBe willing to give up the flameIf you never replenish the waterThe water will dissipateYou burn the bottom of the panLack of action has consequenceIf you decide to ignore itBy plugging up the steamEventually it will explodeTake action now, not laterYou want to make it stopYou have to change the systemYou have to decide to do differentYou have the power to change.
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suffocating lies
Your lies hurt me
Like a slow growing moldHidden in the walls of my houseMaybe you think you are saving usFrom the harm of conflictBut I know something is not rightThe dank smell of what’s unsaidChokes me as I try to breatheMaybe you’re protecting yourselfFrom the sting of my disappointmentBut you’re infecting our worldI’m woozy from the inconsistancyThink of how nice an open door isSharing vulnerability is a calm breezeGive me a chance to forgive youInstead suffocating in shame.
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your ugly is showing
It’s hard to see you
Going back to your lifeAs if the world is normalWhile a pandemic is thrivingWe don’t need those old Ugly LawsTo force us undesirables insideAll we need is your disinterestAnd a mass disabling eventSo I wear my mask and stay insideWhile you celebrate a return to lifeAn hope I never meet that fated dayWhen your disinterest will infect me.
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unreliable
Despite my best intentions
All my effort to be organizedMy body is unreliableYou can’t count on meNever know when my health will failOr when I won’t remember detailCan’t say what days I won’t be presentOr predict how many hours I can offerIf there were a habit I could cultivateI’ve spent a lifetime searching for itI do the best with what I’m givenAnd aim to be as reliable as I can.
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keeping it to myself
If I share my discomfort
With someone unfamiliarThen I end up comforting themBecause their uncomfortableThey can say terrible thingsLike, “I’d die if I were you.”I’m burdened with educating themThat may people live like I doIt’s easier to fib with, “I’m good.”Than to convince them, “I’m fine.”I’ve learned to survive and acceptMy flawed body and mind.
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no "just me"
How many lives do we live
The different titles and namesPrivate yearing and defiant thoughtsA chameleon in different backdropsA work life, Family life, Private lifeAn inner life and hidden true natureI am not one but manyIf you mix the colors they get murkySo we keep them separateOnly open the paint we needTo paint the person they seeBecause all the colors are me
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aesthetically pleasing
Does frumpy have to be badCan it also be cute and colorfulCan I be put together and confidentWithout form fitting clothesCan I attain aestheticly pleasingAvoiding attractive and alluringAs I sprint away from sexyDefying the male gazeI’m not performing for anotherMy goal is not to be perceivedI want to look in the mirrorSee a picture I find appealingAnd smile happily for me.