Posts Tagged ‘living’

It’s not in my chart

June 8, 2010
REMEMBER: Grand Rounds hosted here on June 15! Entry guidelines are HERE
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.
When you come into my hospital room, you need to know the facts of my life
that there is information not contained in my hospital chart
that I am a historian and a writer
that I wanted to teach when I graduated college
that I love life, beauty, travel, eating, Horatio Hornblower, Sherlock Holmes, the theater, movies, walking, my dog, and my parents
that I have been a member of a chronic illness group for four years
that I once thought I was the only one with a heart defect, or one of a very small number
that my girlfriend is someone just like me, because we automatically understand each other
When You come into my room, you need to know the losses of my life
that I was born with a defective heart and no one thought I would live this long
that I have been hospitalized more than a dozen times
that I am chronically ill, and am seeking healing, not cure
that I have to limit my sodium and keep track of how much I drink
that I can “fake it ’till I make it” but sometimes have no energy left at the end of the day
that I have a certain item of clothing I wear to every doctor’s appointment because I think it brings good luck
that I look up area hospitals before I travel… just in case
When You come into my room, you need to know my body
that I am afraid of medical procedures done at night …
I can’t sleep in a hospital, I often wake up crying
that 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 day
that I hate doctors who confer outside of my room; I worry that they are talking about me and the news is grim
that sometimes this body seems battered, old, vulnerable, tired … but still me
that I live by medication
that I live by technology
When You come into my room, you need to know my fears
that I am emotional … a fully functioning feeling person
that I am scared of the word “surgery”
that I once felt I could not breathe in recovery
that I have occasionally lost confidence in my body
that any new symptom scares me
that I am occasionally angry at life’s unfairness
that I worry about the future
that I am anxious about aging and how I will cope
that I long for one perfect day, only one symptom-free 24 hours
that there are times I want to give up
When You come into my room, you need to know my mind and my spirit
that 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 heart
that I have faith, lose it, and regain it – all in a few moments
When You come into my room, you need to sustain my hope
You need to know that I believe love wins over hate; hope over despair; life over death
that I hope against hope
that I pray and believe prayer heals
that some days I am able to make meaning of suffering
that I am more gentle, more compassionate, better with dying, more loving, more sensitive, deeper in grief and in joy
When you come into my hospital room, promise me presence
Sit at my ‘mourning bench” if you are my physician
listen to me, talk truthfully to me
you need to know all this if you want to heal me
And always tell me the truth – unvarnished
because I know that I will never be cured
and support my hope
that tomorrow there may be new medicines and new surgeries
and that today you care deeply
that you will do your best
promise me a healing partnership
keep hope alive
it is all I have to fight with.
Amen, and Amen;