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A Personal Perspective on Disability

A Personal Perspective on Disability Opinion ON MY MIND Between the Words Forty-five-year-oldwomanwithlipomyelomeningocele, cies.Ihavesincecounselledcountlessfamiliesaboutpreg- Paige Terrien Church, MD neurogenicbladderrequiringcleanintermittentcatheter- nancies affected by potentially disabling conditions, with Department of ization,neurogenicbowelstatuspostappendicocecostomy, totalconfidenceinmyobjectivedetachment.Increasingly, Paediatrics, University tethered cord syndrome with detethering complicated however,Ihaveexperiencedoverwhelmingambivalence. of Toronto, Sunnybrook bymeningitis,ArnoldChiarimalformationtype2,multiple ItisthesameambivalenceIexperienceeveryday.Ongood Health Sciences Centre, Toronto, Ontario, orthopedic procedures, and lower extremity weakness. days, I have the clarity to appreciate the perspective that Canada. That is my medical record. I have had 11 surgeries. theseexperiencesprovide.Icanappreciatethatthesechal- I require catheterization and medication to maintain re- lengesselectedafantastichusbandwhosestrengthoflove nalintegrity.Nightly,Iflushtheappendicocecostomy.De- amazesme.Ithasbroughtusourbeautifulgirlwhoseem- spite this, I have a fragile grasp on continence, exacer- pathyandkindnessstartleme.Onbaddays,whenthe“chal- bated by any change to my routine. I became pregnant lenges”provideadoseofhumility,Iamleftfeelingisolated once with an early miscarriage, precipitating uterine pro- and frustrated, slinking off to conceal some unexpected lapse. Further pregnancies were discouraged as any loss accident.Thelowestistoseemydaughtercomplicitinthe of pelvic integrity jeopardized my continence. We ad- deception, never questioning her role, which is amazing opted a beautiful girl. I exercise and stretch daily and at- but sad at the same time. tend physiotherapy weekly. Without this, climbing stairs As I transitioned from trainee to staff physician, is challenging. Recently, my hands have become weaker. I started to articulate ambivalence on “black and white” The etiology is unclear http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JAMA Pediatrics American Medical Association

A Personal Perspective on Disability

Church, Paige Terrien
JAMA Pediatrics , Volume 171 (10) – Oct 7, 2017
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A Personal Perspective on Disability

Abstract

Opinion ON MY MIND Between the Words Forty-five-year-oldwomanwithlipomyelomeningocele, cies.Ihavesincecounselledcountlessfamiliesaboutpreg- Paige Terrien Church, MD neurogenicbladderrequiringcleanintermittentcatheter- nancies affected by potentially disabling conditions, with Department of ization,neurogenicbowelstatuspostappendicocecostomy, totalconfidenceinmyobjectivedetachment.Increasingly, Paediatrics, University tethered cord syndrome with detethering complicated...
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Publisher
American Medical Association
Copyright
Copyright 2017 American Medical Association. All Rights Reserved.
ISSN
2168-6203
eISSN
2168-6211
DOI
10.1001/jamapediatrics.2017.2242
Publisher site
See Article on Publisher Site

Abstract

Opinion ON MY MIND Between the Words Forty-five-year-oldwomanwithlipomyelomeningocele, cies.Ihavesincecounselledcountlessfamiliesaboutpreg- Paige Terrien Church, MD neurogenicbladderrequiringcleanintermittentcatheter- nancies affected by potentially disabling conditions, with Department of ization,neurogenicbowelstatuspostappendicocecostomy, totalconfidenceinmyobjectivedetachment.Increasingly, Paediatrics, University tethered cord syndrome with detethering complicated however,Ihaveexperiencedoverwhelmingambivalence. of Toronto, Sunnybrook bymeningitis,ArnoldChiarimalformationtype2,multiple ItisthesameambivalenceIexperienceeveryday.Ongood Health Sciences Centre, Toronto, Ontario, orthopedic procedures, and lower extremity weakness. days, I have the clarity to appreciate the perspective that Canada. That is my medical record. I have had 11 surgeries. theseexperiencesprovide.Icanappreciatethatthesechal- I require catheterization and medication to maintain re- lengesselectedafantastichusbandwhosestrengthoflove nalintegrity.Nightly,Iflushtheappendicocecostomy.De- amazesme.Ithasbroughtusourbeautifulgirlwhoseem- spite this, I have a fragile grasp on continence, exacer- pathyandkindnessstartleme.Onbaddays,whenthe“chal- bated by any change to my routine. I became pregnant lenges”provideadoseofhumility,Iamleftfeelingisolated once with an early miscarriage, precipitating uterine pro- and frustrated, slinking off to conceal some unexpected lapse. Further pregnancies were discouraged as any loss accident.Thelowestistoseemydaughtercomplicitinthe of pelvic integrity jeopardized my continence. We ad- deception, never questioning her role, which is amazing opted a beautiful girl. I exercise and stretch daily and at- but sad at the same time. tend physiotherapy weekly. Without this, climbing stairs As I transitioned from trainee to staff physician, is challenging. Recently, my hands have become weaker. I started to articulate ambivalence on “black and white” The etiology is unclear

Journal

JAMA Pediatrics – American Medical Association

Published: Oct 7, 2017

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