Spoonie under the Microscope

The Hope Hygieia/

There are a lot of Spoonie/Chronic Illness blogs out there in Internet Land. I mix mine up with food, travel, and utter nonsense, because (1) I can only talk about my health for so long (2) I’m not terribly decisive and (3) I have a deep mental block when it comes to being openly vulnerable, especially on the internet.

The unwillingness to be vulnerable is not an enigma, but the stuff of psych 101: Due to my health, I was forcibly placed in repeated vulnerable situations, so when confronted with the choice to be vulnerable willingly, an internal wall builds itself around me, deflecting my efforts. Typically, I resort to humor, or bombastic anger. I’ve toted this dog and pony show out many-a time to amuse my friends, my medical team, and my fellow Spoonies. It’s my own personal Olympic sport, and like any mere mortal attempting the Olympian, I can only perform for so long before I will keel from sheer exhaustion. This is, ideally, the moment when I ought to allow raw vulnerability to show through. So I’ll give it a shot.

Recently, I finally set the wheels in motion to realize a long-time goal of mine to volunteer with hospitalized children. I’m not there quite yet, but in the process of all of the legalities that come along with being side by side minors in a compromised state of health. For obvious reasons, I will never be going into detail about the work itself, but I can at least attempt this whole openness…thing.

I’m not exactly a greenhorn; my first career and my education revolved around the care and development of children. Even when I ceased to work with them and had to abandon my studies due to conflicts with health and work, I never stopped volunteering with them. So with this leg-up, you can imagine the confidence I’ve been strutting around with during this initial screening process. However, when I crossed the threshold and stepped into the world of a children’s hospital, it was like the last twenty-five (plus) years completely melted and I was suddenly a little girl on the 5th Floor West Wing of Children’s Hospital of Philadelphia all over again.

I faltered, and an ugly little voice in the depths of my consciousness piped up, “Can you really do this?”

I remembered the full-lunged hysteria as I was pinned down and subjected to insurmountable physical pain. There is no pain that can compare to medical pain when it carries the echos of a lifetime of trauma. I recalled the late nights of insomnia I suffered, coping by pulling up a rocking chair outside of the room I shared with 2 to 5 other kids and watching a video, a blanket wrapped around my shoulders. Worst of all, I remembered the impersonal prodding and poking from med students and equally repugnant residents, talking at me rather than to me. CHOP is a university hospital, and brow-beating doctor-patient etiquette and empathy was not yet part of the curriculum – especially for children. I was a particularly prized specimen because my second and third open-heart surgeries were performed by a world-renowned surgeon whose methods are still taught to this day. I felt like a sideshow freak on display and thus my animosity charming Spoonie personality was born.

But it was in the recollection of the god complex plagued white coats that shook me from my reverie. While this kind of behavior has been dramatically reduced within the last decade or so, and the hospital I will be volunteering at goes to great lengths to ensure each child is treated with the respect and empathy they deserve, I realized that I needed to not only witness this revolution in care, but be a part of it as well. As I recently wrote to one of my dear friends, If I am to see the change I want, I need to be the change I want to see.


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