Blogging One Photo at a Time

Studio

I often take photos with the idea of blogging a thought or experience. Seems I’ve been doing this for a couple of years and not posting anything here. Maybe life is just like that for me. I go with fits and starts. I’m actually a stellar starter.

Sometimes I’ve been completely immersed in the support of people who are facing ostomy surgery and don’t know what to expect. I’ve enjoyed being a healthy active inspiration to those who are sick. I was once very fearful not knowing what life would be like living with an ostomy and thought my life would be changed forever.

My life has been forever altered now that I have an ileostomy,  but along with the disruptive reminders of my limitations have been unexpected moments of tenderness and the powerful strength in resilience.

I’ve had countless quiet pensive times when I reflected on the decision to have the reversal of my JPouch and have a permanent ileostomy. All I can tell you is that the freedom from the daily agony and fear of the toilet was the best decision I made. It’s also one that I feel very protective over when people ask me innocent questions like, “did you try probiotics?” or some well intended inquiry into what could have been done.

Each time I’m given suggestions about what I could do to improve my health,  it tosses me into a defensive emotional place. Sometimes I feel sorry for myself. Sometimes I feel very empowered with how far I’ve come. Sometimes I’d rather not think about it at all.

When I do share my medical condition with people, I’m always delighted when they tell me they had no idea. I’m also routinely discouraged by people thinking they can help improve my colon health when I don’t have one. A colon. It’s been completely removed. Anyway – this post isn’t about frustration, it’s more about reflection after two years of no writing. I’ve documented much of my life in photos and routinely snap shots of things that represent emotion.

It’s tough to remember misery in hindsight. Especially when it’s sprinkled with fantastic days of wellness. Anyone with a chronic illness that has times of remission can relate to this. People with an illness that doesn’t show on the outside also knows how discouraging it is to be unwell and misunderstood.

So I’m gathering my photos and putting them into a writing challenge. To get back to posting regularly, I’ve decided the photos will be my topics. Typically they evoke a feeling or memory – each one of these does. It’s organic and free flowing but in somewhat chronological order from the last time I posted here.

Roses were Day 1 that I wrote about yesterday. I wonder if it will take me another two years to write about each of these photos. I’m constantly inspired and routinely struggling.

With gratitude for good days and a healthy sense of reality about the future, I will begin. Here’s the list so far:

  1. Roses – CHECK!
  2. I Miss Vegetables
  3. Fetal Position
  4. Counting
  5. Painting and the Art of Healing
  6. Did You Do Your Best Today?
  7. Human Body Coloring Book
  8. Go Big or Go Home
  9. Dock Jump
  10. Does This Pie Scare You?
  11. Meditation Malas and Healing Beads
  12. Iced Coffee
  13. Hello Spring
  14. The K Line Train and How to Keep Moving
  15. My Mum is My Strength
  16. Are You Feeling Trapped?
  17. Pain Chart
  18. IV Nurses and Other Bedside Visions
  19. The View from my Hospital Bed
  20. Hospital 2.0
  21. What’s on Your Shelf?
  22. Uranus Gas
  23. Uncertain Selfie
  24. Rest and Recovery
  25. Reflections From My Desk
  26. Wonderwoman Nail Polish and Power Stances
  27. Mother Mary in My Accessories Drawer
  28. Pebble Path to Cross
  29. From Soup to the ER
  30. Hearst out the Passenger Window
  31. Ice Cream with No Regrets
  32. How do you Measure Up?
  33. Beets at the Picnic
  34. Bleak Chair at Dusk
  35. Brick Walls
  36. My Hubs and Humor
  37. Defeated; a Self Portrait
  38. Grey Days
  39. Be Nice
  40. It’s Perfectly OK
  41. Showing Up
  42. WonderWoman Mother’s Day
  43. Sister Stash
  44. Room Service
  45. Stand Together
  46. Staying Connected with Snapchat
  47. Painting Even When You’re No Good
  48. Life & Love in Handmade Quilts
  49. Golf and WHITE SHORTS
  50. White Shorts 2.0!
  51. Swimming – Even Diving!
  52. White Pants!
  53. Collections and Reflections
  54. Tray of Treasures
  55. Swim Skirts and Bikinis Tops
  56. Milkshakes
  57. Heart to Heart
  58. Anniversary and the Fitted Dress
  59. Dog Days and Daughters
  60. Home is Where We Gather
  61. Saturday Dog Sketching
  62. Neighborhood Craft Day Q&A
  63. Road Trip Packing List
  64. Backup Wardrobe
  65. When in Doubt – Double Up
  66. Weekend in Mexico

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

A new door opens

Today I opened a new door when I spoke before a group of nursing students about living with an ostomy.  Because of my fondness for those in health care, I immediately felt a sense of safety and comfort.  After I shared my story, I answered questions ranging from diet to intimacy,  to my wardrobe and outlook on life. I felt their compassion and acceptance, and was eager to help them understand  how important their role is for the ostomy patient.

Nurses are the first to touch the lives of people post surgery and when the doors of your hospital room close, the relationship with your nurse can feel like a lifeline. It can be a very emotional time viewing your adjusted body, and in those first few days, a difficult and lonely place. You share intimately with the nurse who cares for your stoma, checks your output  and tends to your incision. When you lay exposed and vulnerable, the caring hands of your nurse and confident touch can have a profound impact.

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.

Ask for help

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Fall is here in the Northwest and as my winter pots got re-potted by some loving friends recently, I was reminded of all of the gifts in my life. It would have been easy for me to wallow in depression, I had plenty to feel low about after spending 6 days in the hospital for having a serious obstruction. After having an ostomy for so long, I feel pretty sure I know what to eat, but now and then, I’ll get thrown for a loop when my remaining intestine get kinked and refuse to allow passage. Rest, pain meds and lots of visits from my friends and family and I am home on the mend.

Ask For Help if you need it. The people in your life will feel helpless but want to reach out to nurture you. Stay close to home and allow them to tend to some chores to beautify your surroundings. After mentioning my dying summer porch plants, my dear friends arrived with warm drinks to sip as I bundled up on my deck and they winterized my plants for fall. Now when I open my front door I have a fresh outlook, more than just the flowers in my pots.

Everything is going to be all WRITE

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Allowing my feelings to flow through my pen has always been my therapy. My hospital journals often have unfinished sentences as I drifted off to sleep under the blanket of pain meds. But always, they are a place where I can spill unfiltered and later reflect when I am well. During a therapeutic weekend of de-cluttering, I pulled out my journal pile and re-read some of my hospital prose. For those of you who are still in that place, it may help to know that I am not there anymore, but I do understand it deeply. Here is one I wrote while under the recovery sheets.

Whole

There’s a hole there that could swallow me up if I let it.

  If I looked

I am not whole anymore,

  my energy leaks like a cold sweep of wind.

I am exposed there,

  no one I can express this to but these pages.

Pen dips into my rages and sooths my limitless ache.

Not arms and legs gone, but part of myself.

Forever bandaged, never to see sunshine and light, and air.

Wisps of motion, tenderly folded and tucked,

  I am displayed under white sheets amidst shudders of pain.

Coming and going, they contend for my side,

My insides are layed out and leaking,

  I wonder what they want.

Streams of visitors,

  dumbfounded and waiting for me to make them comfortable, even laugh.

Silence and sunshine are mine when no one is here.

I am alone with my pain and new wardrobe.

I am encased and submissive, swallowed up my by insecurity

Shivering with this boastful, smiling courage as I falsely move on.

The songs are silent now and I wonder how many more of my parts will go

  can be taken

My legs will carry me and my arms will reach up,

  my voice will sound the same.

My essence is contained within this body’s shield,

  inside this gasoline shimmering shell

A matchstick could ignite my fury, my sorrow,

  my aching longing to sun my belly just one more time.

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.