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Thankful for HPN

Jana Daigle

Jana and her dog enjoying what she
describes as one of her “normal, ordinary,

glorious days.”

               I don’t know another street to march down other than gratitude when it comes to my connection to parenteral nutrition. I’m writing this to draw attention to Home Parenteral Nutrition (HPN) Awareness Week. HPN is the intravenous food that has pumped into my body since I was a month old. For thirty-five years, I have been given this every day.

               In relation to the illness or disability community, we often praise and spotlight grand feats accomplished despite limitations. There is a surge of optimism (and rightly so) that comes from seeing someone climb a mountain or receive an award or live a prestigious life overcoming physical hurdles. Those things deserve celebration for the remarkable achievements they are. Today I want to speak to a different side of this life of tubes and infusions.

               We get the everyday.

               Because of HPN, we get the in-between stuff. We get to wake up and brush our teeth. We get to make a recipe we found online, and eat a bowl of Fruity Pebbles when it fails. To throw the ball in the backyard for our golden retriever. We get to register to vote. We get to sit in the grass on a summer day and listen to bird song, and get bitten by ants. We get to finish a library book, realize we forgot milk at the grocery store, pay an electricity bill. We fix beds and hold doors for strangers and smell gardenias in full bloom.

               We forget how to spell a certain word, google how to spell it, and somehow end up watching YouTube videos of cats and cucumbers. We get to take naps during rainstorms, check the mail, wonder what is in our Amazon box. We are able to experience forgiveness, loss, grief, and the tension that comes from the three dots that show up in an open text, then disappear without a response. We get the remarkable and mundane miracle of the everyday.

               Many of us live with conditions or systems that would be life-limiting, life-threatening were it not for the availability of parenteral nutrition. Something about the daily rhythm of lifting this cold, milky bag of sustenance from the fridge in the morning reminds me and connects me to my dependence, my fragility, my awareness of things that are beyond control. I am still here. I get another day.

               I don’t always stay in that place of wide-eyed understanding and gratitude, but that deep knowing is never far removed. I carry it on my back and it flows in my veins. I have been given the gift of everyday, and it is a gift beyond what I could ever say thank you for, so I will try to live thankful instead. Good days, hard days, quiet days, busy days, sick days. Every day.

Adapted from a Facebook post and reused with permission.


LifelineLetter, November/December 2019

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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