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

Let go a little


I took the leap a few summers ago off a dock I jumped from as a teenager. Having an ostomy makes you nervous of the adhesive coming off – let alone the impact of water! After years of avoiding doing the things I used to love and becoming far more cautious than necessary, I slowly started to let go and take chances. This dock jump is an annual summer tradition at the end of a long, hot day at the island fair. It was thrilling to take the jump, and my parents and daughters were proud of me. That felt wonderful too. Being a strong role model for my daughters is important to me so pushing past my fear is something I have to do.

Let go a little. Be prepared for anything of course – but as life proves over and over again, it’s not usually the things we fear that toss us – it’s the unexpected. And this day was unexpectedly exhilarating!

The road to resilience

I recently lost a very dear friend to brain cancer. I watched her health deteriorate, she maintained the strength to fight. Because of my own experience with my body letting me down, I initially was able to identify with her discouraging moments. After a while though, death approached and although I was not able to know what she was feeling, I was there to be with her. I promised to meet her where she was and be honest. I’ve been able to be resilient with my own physical challenges, but losing a loved one is taking me to new lows and reminding me I have to move forward. I found a helpful article that many of you might identify with as you face your low days and disappointments. When we feel depressed, it’s important to feel those feelings and be true to the down times. We also must try to be resilient.

What is resilience?

Resilience is the process of adapting well in the face of adversity, trauma, tragedy, threats, or even significant sources of stress — such as family and relationship problems, serious health problems, or workplace and financial stressors. It means “bouncing back” from difficult experiences.

Here is an interesting read on resilience from the American Psychological Association:

From The Road to Resilience: Factors in Resilience

A combination of factors contributes to resilience. Many studies show that the primary factor in resilience is having caring and supportive relationships within and outside the family. Relationships that create love and trust, provide role models, and offer encouragement and reassurance help bolster a person’s resilience.

Several additional factors are associated with resilience, including:

  • The capacity to make realistic plans and take steps to carry them out
  • A positive view of yourself and confidence in your strengths and abilities
  • Skills in communication and problem solving
  • The capacity to manage strong feelings and impulses

All of these are factors that people can develop in themselves.

Strategies For Building Resilience

Developing resilience is a personal journey. People do not all react the same to traumatic and stressful life events. An approach to building resilience that works for one person might not work for another. People use varying strategies.

Some variation may reflect cultural differences. A person’s culture might have an impact on how he or she communicates feelings and deals with adversity — for example, whether and how a person connects with significant others, including extended family members and community resources. With growing cultural diversity, the public has greater access to a number of different approaches to building resilience.

Some or many of the ways to build resilience in the following pages may be appropriate to consider in developing your personal strategy. Read full article here

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

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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.

Rain Check

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Some days even when the sun’s out, we need a little extra protection to weather the day. I tend to hibernate this time of year and call it “going underground”. When I do get up and out though, I always feel better.

Take a walk today even if it’s just into your backyard or down the block. Focus on your breathing and notice how other thoughts vanish, if only for a moment. I’ve missed some wonderful days due to illness or surgery, so I understand needing the rain check.  Sometimes, it all feels like too much. Treat yourself gently if you can’t get motivated, but consider a little fresh air. Opening the door is a good start, just take a deep breath and see where it leads you.

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.