January 13, 2010

Patients For A Moment: The Down and Dirty Body

turkey-baster

Sifting through the emotional, administrative, and financial trauma of dealing with illness, being sick ultimately all comes back to the body.  So for this installment of Patients for A Moment, we asked that bloggers submit posts about the down and dirty physical world of their disease.

Ever pulled a serious MacGyver providing your own home healthcare with saline solution and a turkey baster?  Duncan Cross has and writes about it in on the Duncan Cross post Duncan 1, Hospital 0.

“I guess if I had a choice, I’d rather wake up next to some ugly guy that I don’t remember meeting – not that, that has ever happened to me before – because it’s really bad when the party you don’t want to wake up next to is yourself…”  Need I say more about Leslie Rott’s post The Ultimate Coyote Ugly on her ever fantastic blog Getting Closer to Myself.

Most glossy doctors office disease brochures describe only the short list of limitations and side effects.  In Rheumatoid Arthritis:Disability Makes Things Difficult, RA Warrior Kelly Young lists the longer version of things you can’t do when your hands don’t work. It’s shocking.

The flip side of limitation is the day dreamy, anything goes fantasy life of that Fibro Mom creates on Fibro World in her Top 10 Things in a Perfect Fibromyalgia World.

From their nose to yours? School your co-workers in why they need to stay home when they’re sick with this  excellent primer Thank You, H1N1 Swine Flu from 21 year leukemia survivor Selena of Oh My Aches and Pains!

A shovel, knapsack, bowl of candy and diaper ointment. Not just for cancer patients, check out my post from last week Your 5 Must-Have Items from Surgery & Treatment Time?, along with over 200 reader suggestions.

Limitations, daydreams, MacGyver stories?  Leave’em in the comment section.  I’d love to hear.

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October 06, 2009

Random Acts of Cancer Kindness

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During my first cancer treatment I was scared and in pain. I wanted hope and an escape, reassurance and strength. It came in the mail.

I received a hand written letter full of empathy and understanding from a guy named Brian. He had suffered from Crohn’s disease and knew what it was like to feel young and beaten down. He told me to remember often the time in my life when I felt the most proud of myself, to remember the details of that moment and how it made me feel. It would get me through the worst of times, he said. And he was right.

I remembered a dance performance I created two years before my diagnosis. I worked so hard and fiercely designing the movement, costumes, the sound score, and an intricate backdrop. I worked with an opera singer, live musicians, and dancers. I wove together their stories with historical documents. At the end of each performance the audience and performers were teary eyed.  It made people think and open up. It was the shining moment of my lifetime.

When I was my lowest during treatment, I took Brian’s suggestion and showered myself in the memories of this hard work and sense of accomplishment. It stirred in me the feeling that I could do anything. In moments when I wanted to die, these memories reminded me about the best parts of living, and that I wanted to make more work that would deeply affect people.

Here was the clincher though: I didn’t know Brian. We went to the same college. He heard about my cancer through the grapevine and went out of his way to obtain my address and send me that letter. Someone who I don’t even know played one of the biggest roles in getting me through the emotional treachery of my treatment. Years later, I’m now trying to find him. I’d like to say ‘thank you’.

Have you ever received wisdom, advice, gifts, cheering on or help from strangers?  Have you ever given it to a stranger in need?  Do you have a “most proud moment”?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about the stranger who sat with MaryAnn and got her through her hardest day of treatment.

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