When you come into my hospital room, you need to know the facts of my lifethat there is information not contained in my hospital chartthat I am a historian and a writerthat I wanted to teach when I graduated collegethat I love life, beauty, travel, eating, Horatio Hornblower, Sherlock Holmes, the theater, movies, walking, my dog, and my parentsthat I have been a member of a chronic illness group for four yearsthat I once thought I was the only one with a heart defect, or one of a very small numberthat my girlfriend is someone just like me, because we automatically understand each otherWhen You come into my room, you need to know the losses of my lifethat I was born with a defective heart and no one thought I would live this longthat I have been hospitalized more than a dozen timesthat I am chronically ill, and am seeking healing, not curethat I have to limit my sodium and keep track of how much I drinkthat I can “fake it ’till I make it” but sometimes have no energy left at the end of the daythat I have a certain item of clothing I wear to every doctor’s appointment because I think it brings good luckthat I look up area hospitals before I travel… just in caseWhen You come into my room, you need to know my bodythat I am afraid of medical procedures done at night …I can’t sleep in a hospital, I often wake up cryingthat I know when something just isn’t right, even if it isn’t recorded in my chart …that I am on more than 10 pills each daythat I hate doctors who confer outside of my room; I worry that they are talking about me and the news is grimthat sometimes this body seems battered, old, vulnerable, tired … but still methat I live by medicationthat I live by technologyWhen You come into my room, you need to know my fearsthat I am emotional … a fully functioning feeling personthat I am scared of the word “surgery”that I once felt I could not breathe in recoverythat I have occasionally lost confidence in my bodythat any new symptom scares methat I am occasionally angry at life’s unfairnessthat I worry about the futurethat I am anxious about aging and how I will copethat I long for one perfect day, only one symptom-free 24 hoursthat there are times I want to give upWhen You come into my room, you need to know my mind and my spiritthat I sometimes wonder “Why me?”that I sometimes wonder what my life would be like if I were “normal”That I sometimes wonder if I would be who I am if not for my bad heartthat I have faith, lose it, and regain it – all in a few momentsWhen You come into my room, you need to sustain my hopeYou need to know that I believe love wins over hate; hope over despair; life over deaththat I hope against hopethat I pray and believe prayer healsthat some days I am able to make meaning of sufferingthat I am more gentle, more compassionate, better with dying, more loving, more sensitive, deeper in grief and in joyWhen you come into my hospital room, promise me presenceSit at my ‘mourning bench” if you are my physicianlisten to me, talk truthfully to meyou need to know all this if you want to heal meAnd always tell me the truth – unvarnishedbecause I know that I will never be curedand support my hopethat tomorrow there may be new medicines and new surgeriesand that today you care deeplythat you will do your bestpromise me a healing partnershipkeep hope aliveit is all I have to fight with.
Posts Tagged ‘living’
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This post is not mine – I found it over at Life in the Fast Lane, a medical blog based in Australia. Also, in the original, the patient suffers from Crohn’s Disease. I’ve changed parts of it to reflect the thinking of someone living with a Congenital Heart Defect.
Amen, and Amen;