“She laughed. ‘It won’t last. Nothing lasts. But I’m happy now.’

‘Happy,’ I muttered, trying to pin the word down. But it is one of those words, like Love, that I have never quite understood. Most people who deal in words don’t have much faith in them and I am no exception–especially the big ones like Happy and Love and Honest and Strong. They are too elusive and far too relative when you compare them to sharp, mean little words like Punk and Cheap and Phony. I feel at home with these, because they’re scrawny and easy to pin, but the big ones are tough and it takes either a priest or a fool to use them with any confidence.”
― Hunter S. Thompson, The Rum Diary

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The last time I wrote here, in March, I had just been accepted to all my nursing programs, but had decided on Penn for the combination BSN-Hillman PhD program. I had recently been in the hospital, which always makes me very fatalistically rethink everything and want to crawl into a little ball in the corner of a room forever. I babysat my “little one” in Pittsburgh, unhealthily worked on Doll Despair (haha), took a psychology course, traveled to Indiana to meet and see my British sickypoo email friend get married, and tried to imagine what life would be like in Philadelphia.

I traveled to DC for IBD Day on the Hill, for the first time, to meet other CCFA members and speak to Senators and Reps about Crohn’s/Colitis research/funding/Congressional caucus. I met some incredible people, including a retired Philadelphia nurse with a sick college-aged son. She told me I was a “ray of light sent straight from God” and that I was a “stoic and strong role model.” (ha)

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I went to Baltimore for the Graphic Medicine conference at Hopkins to meet my author/professor/life idol Arthur Frank, whose amazing books have probably taken up half my posts here for the last 4 years. I wrote to him last summer (2013) for the first time, with a long “thank you” note because it just felt right to do so; he and my hospital nurses had the most to do with my decision to go back to school for nursing/Hillman PhD. We became email buddies after that, so I was excited/nervous to meet him in person, at a conference at which he was a Keynote speaker. After the conference, we had a several hour breakfast and he agreed to be my “third PhD mentor” from afar. 😀 It would take me an entire blog post to properly describe this weekend. I will forever treasure and be motivated by the messages he wrote in my books that you can see below.

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I spent about two weeks babysitting in NYC, with one day off that I filled with much needed solitary time in Coney Island, Brighton Beach, and Manhattan Beach. For Memorial Day weekend I stayed in Long Island, with the girls (now 20-somethings!) I “nannied” in Brooklyn and Manhattan so long ago.

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I sat in their backyard, reading Norwegian Wood and then one of the lesser known Tennessee Williams play, thinking again about an art project of sorts that I think about a lot but can never actually begin–I don’t even have a medium in mind! It’s my broken person/pieces I alluded to in this last post, from a really brutal hospitalization where I felt my spirit (and body) breaking into a million pieces. Someone once asked me, “How did all of it not break you?” And I laughed: “It DID break me! Oh my God, trust me, it broke me. Over and over and over again.” Into so many pieces that I naively thought could be put back together like a jigsaw puzzle. But they’re altered, shattered, too different, or can’t be found.

I don’t know what this would look like because I can’t conceptualize it beyond a human figure carrying a lot of pieces/memories/experiences that will “fit” together in some way to make something else. I think of the part in Arthur Frank’s The Wounded Storyteller: is it possible to be successfully ill? What about successfully broken? (Is it the same thing?) It’s beyond the point of trying to heal those open wounds and stop the proverbial bleeding; I’m dealing with scar tissue that is never going to go away. And that scar tissue, from my surgeries? It’s what is persistently contributing to ongoing inflammation (pouchitis) and my “occult” blood loss. Which is fitting, no?

I see that human figure, me, trying to hold and balance all those pieces in some strange Rube Goldberg contortionist configuration. A Calder mobile full of seemingly patternless movements but there’s still something meaningful and beautiful there. A startling tap on my shoulder, however, and I would drop all those pieces.

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Which reminds me of another analogy: I hate that trite aphorism, “what doesn’t kill you only makes you stronger,” because I feel the opposite in terms of my health. It’s so much weaker for everything that didn’t kill me! I imagine a common object like a glass precariously sitting on the edge of a cliff. A small tap or a large shove results in the same outcome: it falls over the cliff and shatters. I sometimes think that if I broke a finger and had to go to the hospital, I would totally lose my mind in a “last straw just can’t handle anymore” kind of way. There’s a threshold but I can’t know where it is exactly until I’ve crossed it.

Related to that aphorism but in a pathophysiology way because science and nursing are my entire life right now: heart failure can occur after many years of increased workload. The heart muscle actually gets bigger and technically “stronger” if you are just considering sheer muscle mass, squeezing out the proper amount of space once taken up by the chambers. More of this muscle tissue and pumping are needed for survival. The heart is working so hard! Too hard. But it “works” for a while. Until it completely wears out. All those extra muscle cells, that you would think =STRENGTH, don’t matter. And the heart just stops. So, sometimes what makes you stronger just ends up killing you nonetheless, and somewhat suddenly at that.

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This program is one of the most challenging endeavors I’ve ever undertaken and I thought about quitting 3X/week this summer just b/c of exhaustion and reaching a saturation point for knowledge. It’s hard to explain what it’s like to learn about so many of the illness-related things I’ve been through, in a classroom setting, where the instructor is always talking about “the patient” as some anthropological “other.” I am that patient and that “other.” There were many lecture slides I didn’t have to study at all–lists of drug side effects, symptoms, GI/anemia/pharmacology lingo–because it’s either burned into my memory from “living it” too many times or I’m still living it now.

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While I had tears behind my eyes during the colitis/Crohn’s lecture, I didn’t cry; but I totally cried my eyes out when I read this in one of my textbooks: “GI disorders may have profound effects on the psychosocial functioning of the affected individual. The stress of coping with a chronic, disabling illness may result in psychological trauma; in addition, any type of illness represents a threat to the integrity of the person. Individuals experiencing a chronic GI disorder may exhibit the psychological effects of such threats.”

“In life man commits himself and draws his own portrait, outside of which there is nothing. No doubt this thought may seem harsh to someone who has not made a success of his life. But on the other hand, it helps people to understand that reality alone counts, and that dreams, expectations and hopes only serve to define a man as a broken dream, aborted hopes, and futile expectations.”
— Jean-Paul Sartre