“I’ve been absolutely terrified every moment of my life and I’ve never let it keep me from doing a single thing that I wanted to do.” -Georgia O’Keeffe


Iron Lion Zion-Portlandia Zoo

Good, bad or otherwise there was no time for fear growing up in my family. Poverty doesn’t give you the space to pause; maybe that’s true for other kinds of harsh conditions or expectations, like blizzards or being an heir to a trust fund. You learn to make quick assessments of what’s wanted or needed, quiet your inner moral conflicts, personal doubts about shortcomings and go, fight, win. I don’t know about you, but eventually I got tired of the excessive, pretend courage I’d felt forced to wear and came wholly undone in my late twenties after a divorce dredged my heart out through my belly button. Honesty, vulnerability, transparency; those things are easier to wear from within the safety of self-possession. At first there are a multitude of reasons we might avoid adopting all the parts of ourselves. In the baggage claim of life I can attest to declaring on more than one occasion that the smelly, duct taped garbage bag on the carousel was definitely not mine. It wasn’t until I was standing in my own entrails that I finally said ‘hello good morning’ and did the work of waking up. A little compassion in your coffee goes a long way.

One of my mother’s jobs was working at a group home for adults with spastic paraplegia and co-occurring cognitive delays. As she explained it, Nancy and her roommates drooled a little, would never drive a car and needed help with eating and getting dressed but they were just like you and me. She said because the residents needed special medical care their families had to send them to homes equipped with trained staff. She explained some residents’ family members felt ashamed for different reasons, so they never came to visit, never sent birthday cards or holiday gifts and rarely called. My father worked for 30 years at one of the last remaining resident facilities for differently-abled people, having started as a janitor. Both he and my mother told stories of bed sores, physical abuse, social expulsion, humiliation, theft by employees, the discovery of wounds stuffed with baby powder and the violent, powerful forces of ignorance. It was the 80’s so people still said ‘retard’. My father tenderly favored the phrase ‘poor bastard’. My stepfather was known to exploit his own passability to score good seats at McCoy stadium with or without the residents. He was my mother’s boss at the group home. Looking back it’s hard to say if we were on outings with the residents or pre-date dates with my mom and future stepdad. This is the one root of our family tree story that remains deeply and inextricably bound; complex, but good fruit, I think. All three of my eventual and sometimes parents, despite whatever love triangles, drug charges, missed DUI’s and teen pregnancies, care deeply about people the rest of the world might’ve tried to throw away. As one of their, all together, six able-bodied kids I cringe while admitting I sometimes wondered where I fit into the mix. We were all encouraged to do our best or even better which sometimes meant blatantly ignoring the concrete limitations of our reality. Earlier I mentioned a smelly garbage bag and that’s exactly what I used to pack for college, two of them actually. Thank God for Patti immobilizing my doubt with a joint and her record player. I’d had every intention of hitch hiking to Belize with my crush from the Rubber Rose Ranch after graduation. College was for normal kids with collared shirts and parents who wore pleated khakis and probably drove Volvos. What did I know? There was only one movie about a poor kid going to college and technically I hadn’t been homeless long enough to qualify for Lifetime. My mother insisted the only way her children would ever escape a life of “washing floors and wiping butts” was to get an education. It wasn’t that she didn’t care about the people she was serving, it was that she and my father shared the belief, in all the ways their efforts would never be enough. She brought us to the front line of one kind of reality by making us work and see right alongside her. There was no going back. Then, there was nothing to go back to. Right after my baby sister graduated high school my mom and step dad moved off the island into a double-wide custom built trailer on 4 acres of family land next to a goat farm in a scary foreign country called ‘the south’. Poverty and trauma could never be any kind of excuse to quit or cop out on life. My mother still rolls her eyes at what she considers ‘run of the mill problems’. From the top of her lungs amidst my, I thought rational, high school rebuttals she would remind me of Norman who could only move one finger and by her estimation lived his almost completely paralyzed life to the absolute fullest and that I had ten fingers and ten toes and they all worked so that was that.

Nancy’s favorite color was purple. When she saw anything purple, she screamed. Once you hung out with her enough times the screaming became normal because you knew it just meant she’s excited. Part of my mother’s job was to take Nancy clothes shopping. Lincoln Mall was actually cool back then and for those of you who remember had the greatest,  weirdest most mushroomy smelling fake indoor fountain. I was at a conference this past Spring and wandered into the free post-event lunch buffet which I had no intention of eating; sometimes I like to see the food I’m choosing to pass up and at the bottom of the stairs I smelled Lincoln Mall. Sure enough, there was a fantastically fake indoor fountain. I hung around for a minute to feast on the memory of that smell. Sometimes I didn’t know who or what we were serving. People would point, laugh, make inaccurate, though wildly confident accusations, then cover the faces of their children in abhorrent disgust and horror. It was our job to protect and support Nancy while she picked out the outfit she wanted. My mother would say people didn’t know any better and sometimes loudly explain to the entire store that our friend had just found the shirt she wanted in her size and couldn’t we all relate to that good feeling. Occasionally a curious enough shopper would step closer and ask questions, express pity or ‘god bless us’. Nancy didn’t want anyone’s pity, curiosity or blessing. I don’t recall her ever sharing her religious beliefs. She just wanted new clothes. Donna was quieter, shy and made a long crying sound when she felt appreciative or content. She and Nancy came over for dinner sometimes since my mother thought there was something medicinal about eating with what she called “a real  family.” It was an unspoken tradition in my mother’s Catholic upbringing to take people in. My father appeared to silently agree and my stepfather had no problem sharing our broken couch with a friend who needed a warm spot for the winter. We called him the Bible guy. He was nice.Years later in graduate school my supervisor would gently clarify this as a boundary violation and advise I not invite clients home. Taking in strangers or otherwise would be up to me. Not surprising, prior to my education in verbal protective barriers, there lives at least one lodger in my historical closet. I know I’m not a parent and never will be by choice but if I could offer one tiny piece of sound, clinical advice: don’t let your children hitchhike. That whole soccer-mom-jeans-chauffeur-in-a-mini-van-Hi-C-organic-snacks persona, I think I might’ve loved her just a little bit. Then again, she probably wouldn’t have let me smoke in her car so the jury might be out.

I remember my father describing the time he walked in on a resident being beaten with a sneaker. He took off his own shoe to show us the treads on the bottom explaining the shape of the marks he’d found all over the residents back and how it took all his strength not to turn his New Balance on the staff. (He did once take a belt to a former friend after he caught that friend taking a belt to our beloved black lab, Duke. That night we all huddled on the bed giving Duke every ounce of every feeling we had to give which I believe helped heal him.) For some reason, whenever I recall my father telling that particular story I see him as the resident. The hitting paralleled parts of his life yet I’d only ever heard him become enraged about the injustice done to others. Similarly, my mother had been overweight when she was little. She said Nana gave her a pixie haircut and was often mistaken for a boy. “The only way anyone knew I was girl was because of my pink, Coke bottle glasses.”  As for my stepfather, he’d been made to play the accordion. I don’t know how the motivation for compassionate action gets born within a persons’ heart but I lean towards the notion that love, fear, courage and pain are foundational ingredients in the recipe. Whatever weakness we might possess is something we decide to care for or crush in ourselves or someone else. Whatever strength or resource we might presume in someone else, we might flaunt or mute within ourselves. At least, that’s what we do while we’re sleeping and living various kinds of recurring nightmares or ineffectual dreams. Some of us pray. Some of us prey. I was a short person being told to push the reclining wheelchair of a grown man who required assistance, while trying not to allow my effort to determine my worth in my mother’s eyes, or his. I think I cared about our mutual dignity, especially since we both needed my mom and probably felt equally mixed about that too. One time Norman, who was admittedly my favorite (he liked classic rock and used his one finger to turn up the volume on Led Zeppelin and even though he was strapped to this perpetual bed, was kind of a rebellious bad ass) was with our whole, giant extended family at some park for the 4th of July. My godmother cried during At&T commercials so it wasn’t strange to see her weeping at the sight of pyrotechnics. My godfather, who prefers loud ‘wooing’ to boo-hooing at patriotic events asked “What the heck are ya crying for?”  and she said “I was just imagining what it must be like to see this through their eyes.” 

Rocky Dennis was a real person who lived for 16 years with a rare condition called Lionitis. The condition is named after the effect the illness has of making a person’s head very big. His mom was played by Cher when they made a movie about his life. The movie is called Mask. My mom was mildly obsessed with it when it came out so we watched it more than once. I thought my mom looked like Cher then; they both had curly hair, deep set eyes, loved a man with thick feathered bangs who hung out with motorcycle guys and were passionately pushy. My mother says to this day “I always root for the underdog.” Except Rocky wasn’t a dog, he was a Lion. I wonder if he ever got tired of being brave? Throughout the film you see him facing the social, emotional, relational challenges of acute differentness, abject physical pain, grim medical prognosis but setting goals and living life kindly, vibrantly and with a sense of humor in spite of everything. He never made excuses for himself and didn’t seem to let fear or pain stop him. He kept a map of the country on his wall pinned with hopeful destinations. He even apologizes for his mother in one scene after she bursts into the principle’s office demanding her son be admitted. His battle cry was for equal not special treatment. Gar, his father explains, “sometimes your mom does the wrong thing for the right reasons.” Most of the adults around him are kind of a beautiful mess, just like real life. He falls in love with a blind girl who turns out to be possibly the only person who ever truly sees him. Rocky summed up all his lessons in a poem which made sense then and even more sense now:

These things are good: ice cream and cake, a ride on a Harley, seeing monkeys in the trees, the rain on my tongue, and the sun shining on my face. These things are a drag: dust in my hair, holes in my shoes, no money in my pocket, and the sun shining on my face.



7 thoughts on “Lionitis

  1. You hav a wonderful ability to tell a story. So much said so economically. Thank you for the glimpse into a universe extremely diffierent than any I’ve inhabited.

    One tiny stylistic nit. Do you hate paragraphs? I am the opposite and over do it with the paragraph thing.

    Perhaps together, it would be just right.

    Thanks for sharing!


    Liked by 1 person

  2. It’s interesting, when I do technical writing I tend to have paragraphs within the “normal range” but when it’s creative / descriptive, the paragraphs often get longer, especially if there’s a lot of stream-of-consciousness, where one thing flows into another and there are no clear “topic sentences” and “supporting paragraphs”. I think the most beautiful writing is often that kind of writing, whether I do it or whether I read what others have written. I think that this blog has exceptionally beautiful, evocative writing, thanks for sharing this! It makes me go, “Oooh, aaah” like standing in front of an original Turner painting. 🙂 Just while I think of it, we did “Great Expectations” in high school literature class and I noticed that Dickens tends to have very long paragraphs too, especially when he gets all evocative or contemplative.

    By the way, spelling mistakes in anything tend to leap out at me before I even properly read a page, it’s a bit like someone else’s inborn ability for perfect pitch, which I don’t have. Your spelling is really above average, from what I’ve read so far you only get the odd typo and homophone error – you know, principal vs principle, that kind of thing. The thing about typos or other little slips like that, in my experience, is that they don’t usually make themselves apparent to the author until after a comment has already been posted, or a manuscript has been sent to the editor. And then, then, you’ll see them *all* on your very next reading. It’s probably Murphy!

    Liked by 1 person

    • Thank you Sophie. My grammar is a beast. Haha. Every now and then pieces come out of me which are more like poems. And yes I’ve seen the odd typos and the rambling paragraphs. Editing, Murphy and Grace are best friends somewhere, laughing. I’ll laugh too. 😉


  3. I’m quite a fan of rambling, it’s the “scenic route” rather than the freeway, no? 🙂 I wouldn’t personally edit that out. Sometimes what is technical imperfection or rule-breaking or anarchy to one person is, when you really look at it, unique and resonant and valuable. Like Frank McCourt using no quotation marks in “Angela’s Ashes” etc, it really felt right for his work. And of course the famous ee cummings from your shores used lack of conformity to certain grammatical and even logical rules to great advantage for his poetry, and for actually making meaning that couldn’t otherwise have been made. And to give a musical example, I actually liked U2’s work best when they were really young and technically imperfect and kind of improvising, they had a uniqueness to them back then (before 1988) where they really sounded like noone else. Learning the rules of music as they got older at times made them really indistinguishable from the general universal cacophony. Technical brilliance to me is no substitute for authenticity. But that’s just my own preferences, others see it differently of course! 🙂

    Liked by 1 person

    • I love ee Cummings and breaking the grammar rules. Such a rebel haha 😉 My husband related my writing to the music industry too- he said the first albums always the best. Ha! 😉


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