Along with obsessing over alternatives to overalls, I spent quite a bit of time madly making aprons. After I finished a very satisfying batch made from vintage fabric, I realized I was subconsciously looking for ways to cover or protect my new appliance. They surround me in my studio office, hanging happily on hangers. I doubt they will ever see food prep, although I might toss them on friends and have an apron party someday.
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.
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.
Some would say I am an open book, but when it comes to my health challenges, I tend to go underground. I fold up and tuck myself in until my energy returns. I welcome and accept the love and support of the people who care about me, but I tend to hide out. I’d rather resurface when I feel more positive. One of the most amazing things a friend ever did for me was to suggest that people offer their support but keep their distance.
Adjusting to a new ostomy is very private, and quite honestly, nobody really wants to talk about it. They often don’t know what to say or do. Do your friends a favor and appoint someone to be your communicator – your PR Point Girl (Point Guy? Sometimes. But let’s be realistic 😉 ) Ask that friend to put a cooler on your doorstep and give a list of specific foods you can eat. Be specific about your needs and let your friend do the talking. Friends can drop off flowers, a meal or leave a note if they are nearby.