How often do I think about my bowel bag?

How often do I think about my bowel bag?

Enough to write about it in journals for 12 years. And another 15 before that, documenting my illness, disregard of my illness, depression and exhilaration. Adventures and stories. Research and library visits (before the internet) had me reading up on all the things I’d be able to do when I got my bowel bag but I found all of that hard to believe. I didn’t find any of it funny either. Couldn’t joke about feces exiting out my belly. I’m mean how ridiculous and upsetting. And how could I ever feel safe and secure in any aspect of my life. Well, the journey is in the journal. And now, I think, I’ll give it a real go and blog some of my moments. Dig a little deeper into some more private places. I’m going to take more risks. This pile of journals is only a sampling of my books of pain and prose, joy and remembrance. Attempts to document my life in a way that would be honest. Sometimes so scary I’d start writing in one journal only to switch halfway through a thought or story to another book and not date anything. Those were years where my trust was broken. It’s all here though, in these piles. Bits and drips of my thoughts, then sudden outpourings of emotion. Not always about my body changes and medical moments, but about the feelings and fear.  The change, the resurfacing to a new normal. Me. Mine. mykarekit. The whole kit and kaboodle if you will.

So read on if you feel like it and I hope it brings you some connection you might need. Otherwise, maybe my photographs will bring a sense of whimsy or reflection. We’ll see because 2011 is going to be the year of the blog for me. I’m ready. No time like today.

What should I call my ramblings that have me typing well past midnight. Did you hear about the midnight rambler? Everybody’s got to go. I just go all the time..anytime…unannounced.

Random Pages from the Ostomy Journal

Notes from the Hospital Bed

I’m your sister’s neighbor’s aunt

“What kind of bag would you like?” Got no choice.

Should I take questions? That always works well in public talks I’ve given. Far more interesting to tell you what you want to know and answer your concerns from my perspective. It’s refreshing. Drop me a line on my About Me Page

Mercy’s video

For Positive Living shows a short film by Tim Bedingfield about artist Heidi Yssennagger’s work creating “Mercy” for OstomyAid.

I was moved by the quiet grace of this art project, along with the story about woman suffering globally. Using appliance materials, an artist with a stoma has created a piece in response to her research about women with stomas in Africa. Creativity has helped me to cope and this video shows how we can do more for one another. Like with any illness or medical setback, people relate to the personal and emotional struggles unique to our challenge. Helping others has always made me feel a little better. Let’s see what we can do together. Start by watching Mercy\’s video.

Good Form

art

When I was in the hospital recovering from ostomy surgery, I was very low emotionally. Despite my attempts to cope, some days I just couldn’t muster up a smile, and felt little comfort in the smiles of others. Some days I felt shame, dull sadness or simply felt sorry for myself.

One day, perhaps on a whim, my parents brought me an artist’s figure. This simple gift turned out to be a coping mechanism for me, helping me face the day. Not only did I spend hours bending and twisting it’s joints, this figure became a tool for communication – acting as a barometer for those that entered my life and my room. Each day I would pose it to reflect my mood. Typically the form’s head was low, or arms crossed, some days the face was in the hands or cradling it’s belly. Other days I lay it face down flat on it’s stomach – something I imaged I would never do again.

One day the fog of my misery cleared and I felt hopeful. I thought about sketching my little wooden friend and about all the other things I would do once I was released and able to restart my life anew. I’ll never forget that day my parents entered my room and saw my little figure, back arched and arms stretched – palms up to the sky. They smiled knowing I’d turned the corner. 

Get one for someone you love who’s suffering. It’s the simple things that can turn the day around.

Journal with nostalgia and move towards better days

During my time in the hospital, or when I was ill, I often found myself writing about my pain or fears in my journal. Sometimes just getting the words down on paper feels better – for me, it always does. I have always been a journal keeper, and love the feel of a fresh journal in my hands. 

Recently I spent the day at the Seattle Folklife Festival, wandering around enjoying great music, food and checking out all the crafty crafts of the local artisans. I met a delightful journal maker named Jacob in his booth teeming with funky journals made from old books.  It was a bonanza of nostalgia and I dove in searching for books from my childhood and laughing at covers from the 60s and 70s.

About the journals
EACH JOURNAL IS UNIQUE, as in one of a kind. they are all made from recycled book covers and because of it each one is a different size.  Inside the front cover and throughout every book Jacob has retained any beautiful cover pages, illustrations, library cards, maps, inscriptions, or what-have-you found in the book (they find all kinds of beautiful stuff in these old books). and it’s all held together with a black plastic spiral.

There is something so pleasing, I cannot explain it. They are delightful and I couldn’t get enough. Take a look at the amazing selection and find a surprise inside. I chose “The I Hate to Housekeep Book” and to my delight chapter 11 was left in. Chapter 11: How to Look As Good As the Lord Intended. It’s classic! Take a look at the other gems Jacob has at bookjournals.com and get journalling. Before you know it, you’ll be feeling better too.