un•whole•y•ness-- a poem by maryann neblock-- about living with crohn's disease daily.

i have been very much been looking forward to sharing this poem. it is by my good friend maryann neblock who lives in chester county, pennsylvania. she's been dealing with a severe form of crohn's disease for years, and i've learned a lot about life through her experiences.

i always want things to be better for her, for more to be discovered which will help her in ways maybe nobody in the medical field necessarily expected based on current research and knowledge. i want her to have a better quality of life, which she deserves, especially for how much she puts her heart out there for others in this world. 

as much as i get upset about her circumstances, she incidentally teaches me to be a little less typically american and instead more grateful for how my life and health are, even though i am usually wrapped up in my own stress and worry. it gives some bigger picture perspective to see and know even just some of what maryann experiences.

in the past year or two, i've been encouraging maryann to dive into poetry to work through the beautiful and the difficult in life. in a matter of months, she became the bird haiku writer of my days, stirred from her affinity for watching winged ones through the windows of her home and making sure they always have enough to nibble on in her yard.

here is an eye-scene of a tank top which maryann gave to me from her husband don's bicycling efforts in raising funds to help the crohn's and colitis foundation of american. i love this tank top oddly more than i like most clothing and have worn it quite a bit lately.

and here is maryann's poem which has been continually shared, and sometimes even requested for more sharing, across the communities of medical professionals and patients who know these unique digestive and life difficulties best. 

in early june, she heard the news that the oley foundation based in albany, new york, is featuring this poem in its july & august or september & october issue of what is called the lifeline letter newsletter. it is sent out to 15,000 recipients. i love that its value in helping others know they are not alone keeps growing across different sets of people.

*

un•whole•y•ness

By MaryAnn Neblock

I lie awake in bed at night

Hoping to fall asleep

To dream..to be whole

The soft whir of the pump

ka-chunk    ka-chunk

Moving liquid nutrients into my heart

And eventually into what’s left of my gut

How did I become this creature?

This artificial being in body

While still real and whole in mind and soul

How can the body fail so as to betray

the spirit that drives me?

And how do I go on from here

To fulfill my purpose with such distraction?

Tomorrow is another day

To push through the daily rituals

Until the whir of the pump once again
Lulls me to sleep..and I become whole

*

from what i have learned, feeling understood and knowing you are not alone is everything in life, sometimes, and this certainly fits probably at a very deep body and heart-level for those who know maryann's same struggles.

she recently received a letter about this poem making rounds across different sets of eyes within her medical community connections through penn medicine. it expresses gratitude for her poem's impact. here is a copy of the letter.

and here is a photograph of maryann and don in arizona during crohn's & colitis awareness week. it spanned from december 1 through 7, 2016, last year. the paper maryann is holding shows how many years she's been working through this condition in everyday life. because of her health situation, traveling is absolutely no simple or easy feat for maryann, so it'd be easy to take for granted a trip like this for anyone who doesn't know a life like hers and those who have similar medical and bodily circumstances.