Friendship

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Hello All –

I’m hoping you have a bit of time on your hands because I’ve got a sneaking feeling that this post will be of the long-form variety. In a good way, of course. At least, I hope.

I just zipped through (delightedly, I might add!) the uber thoughtful and insightful Sitting Pretty: The View from My Ordinary Resilient Disabled Body by Rebekah Taussig. Though we haven’t actually met in person, her writing, (which I cannot recall how I discovered it) makes me feel as though we are friends. Rebekah writes with an honesty, fierceness, and passion that invokes the same in me, from a perspective similar (we both have beautiful and flawed bodies!) and different – hers ambulates primarily via wheelchair.

Her book examines the ways in which disabled people experience the world and how improving our collective thinking about their bodies and access (my goodness the workarounds of the wheelchair bound!) utlitmately benefits us all.

When I was in college, yakking it up among a group of male friends, a blind woman and her dog approached to ask me where she could find the bathroom. I gave the most succinct directions I could and received the loudest tongue lashing imaginable about her blindness and how dare I expect her to understand. The vitriol parted the group as though the Red Sea, and I shamefully guided her by the elbow along the path I so carefully described.

Decades later, I remain peeved by the interaction, for two reasons. 1. had she clearly communicated with me that she needed my physical guidance, I would have done it. I was and remain that person. 2. More importantly, why wasn’t this something our school provided? The reason for her rage certainly justified, though there is still no excuse for her berating me. I was not about to insult the intelligence of someone without my same abilities.

But now, as I do some foggy math, I wonder, was this in the fall of 1989, my first semester of college and before the Americans With Disabilities Act (ADA) was passed in 1990 (If you want to see the marvelous story of many of the people instrumental to the legistlation, watch Crip Camp: A Disability Revolution)? Before something as simple as someone guiding a woman to all the necessary (or even frivolous!) places on campus seemed logical? Before the inevitable stress of isolation and an urgent need to pee(!!) in an unfamiliar environment caused her to lash out at me. And after which, whenever I saw her, I immediately shut my trap for fear of it happening again. I mean, really, how simple it all could have been.

That interaction, as it goes with the most painful, taught me some valuable lessons of clarity in communication and how to be truly helpful. In times since, when I encounter someone with a disability, I ask: “I know this isn’t your first rodeo, but if you need help with that door, let me know.” Or others in wheelchairs, shorter than me, or otherwise hindered, “I’m not the tallest person around, but if there’s something you can’t reach, I’m happy to try.”

What is even more important, and what Rebekah emphasizes, is how we can make this a seamless process for everyone. Which reminds me of another woman, who rode her wheelchair, sometimes with a child on her lap, on the busiest of roads in Portland. My initial feeling was of horror and rage. How dare she put herself and a child in danger like that?! A car could easily hit her. Then the realization hit me, after remembering walking those same streets. There were no wheelchair ramps! She, to get from point A to point B, was left with little choice.

So the question remains — How do we make all spaces more accesible to all? Wouldn’t it be great if there were solutions everywhere, without anyone feeling impotent, or forced into dangerous situations, or hoping for some stranger to offer aid?

Rebekah also discusses bodies that don’t appear disabled, like mine when I am severely depressed, or when I lived with the chronic and debilitating pain of endometriosis. The lousy feeling of being other. How my cheerful demeanor, because, despite how awful I felt, life was still good, made doctors and others doubt me, brush me off, act as though it was only an attention grab. “You just need to learn to relax.” (In actuality my insides were ripping apart. Literally.) “Write a list to make you feel happy!” These responses made me fear telling anyone, because they had the solution to my very simple problem (grrrr….), and I was just a weak and defective idiot, unworthy of love or trust.

She also writes about the common fear (one I share) of a job loss that would deprive us of insurance and critical care. The threat of bankruptcy and outrageous premiums for a pre-existing condition laden body.

What might be most striking about Rebekah’s book, is when she encounters people with the belief that a life without disability is the only one worth living. I can say with certainty, based on my own experience, and witnessing that of my cousin, whose genetic disorder has delayed her walking and speech, lives mostly in a world of her making, one in which she scoots and crawls about, shouting and flapping her arms in laughter and raucous joy, is, quite possibly, one of the happiest people I know. I am enriched and enlightened by her, more thoughtful and clear of purpose in her presence. More joyful, too.

A new coat for Juniper, in one of my favorite colors (teal!) and with a useless and utterly adorable faux fur hood. I feel sort of lame buying her such things, but our girl’s genetics did not prepare her for our weather, and so I must or watch her shiver.

A couple of Greg’s favorite eats: red chile and chocolate cake! I also tried my hand at pupusas because 1. I never had, and 2. They are filled with cheese. A duh if ever there was. I also like them because they are far easier than homemade corn tortillas. I know my way around the kitchen, but dang, do I have a difficult time keeping them from sticking.

I made his favorites, not just because I love him, which would be enough, but also because my best love had hernia surgery last week. He deserved extra special treatment!

It was a nice role reversal, with me the one waiting and hoping and uttering every little prayer the surgery would be as uncomplicated as the doctor had foreseen. Thankfully, it was.

He was and remains a good patient, utterly silly while the drugs wore off, rejoicing in the complex flavors of ginger ale and saltines (the best ever), wielding them like precious metals, giggling (and grimacing – ouch my tummy hurts!) and making me do the same. It only took a few days before he could walk at his normal pace on our Juniper jaunts, but he’s still got a way to go in terms of pain. Please think good thoughts for him.

Makings for a rhubarb apple crisp on our regularly scheduled dessert day (Sunday). As I peeled the apple in one long go, I thought of how I marveled at adults who could do the same when I was a child, how it seemed so impossible to keep the peeler going, going, going. How lovely it is to learn and grow and mature, the impossible made simple and everyday. Life is a wonder…

We spent a wonderful, laughter-filled evening with the cousins Wednesday, at the super fun downtown Holiday Stroll. We love our time together!

We also love Colorado Springs! It’s a little weird, but it’s beautiful and full of heart. There were stands with free hot chocolate and cookies, while Santa (no photo, sadly), carolers, and a brass quartet strolled along with us.

We even got lucky a second time at Jack Quinn’s, scoring one of the special booths for a delicious dinner beforehand. I got my favorite Blarney Stone, and Greg is showing his goofball side with dessert. I love him so much!

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Hello friends! Happy day after Thanksgiving to you! It was a non-traditional feast for us this holiday, celebrating with our cousin Zach. We enjoyed each other’s very fine company, along with margaritas, guacamole, green & red chile, pork & three kinds of wee sweet tamales. All made by yours truly, which was quite the endeavor! I started on Tuesday, so I wouldn’t be a manic maniac Thursday.

Grandpa would be super proud, especially noting the pork to masa ratio, as he nearly always lamented a lack of meat. It was my first time making tamales on my own. The last time was in high school, helping my mom. Much thanks to Tamales 101 for all the history (did you know they were among the first MREs?) and helpful advice! Greg and I decided that they’re the best we’ve ever had, which is wonderful, when Moreno’s and La Choza set such a high bar.

It was also the first time we’d ever had sweet tamales, more out of necessity than forethought truth be told, because there was SO much masa. Seriously. I didn’t have enough ingredients to fill them savory style, even when improvising with green chiles and cheese. I flavored the masa with vanilla and sugar in one batch, cinnamon and sugar in another, and sugar and chocolate chips in the third. You’d think our resident chocoholic would have been most excited about those, but he was dubious. They turned out to be our favorite, which was rather sad, as I made the fewest of them. Next time! The chocolate laden one is our final incarnation, made with leftovers and a sauce on the fly this afternoon. Delicious.

Finally to Zach’s creme brulee! It was egg nog flavored and muy muy delicioso. He and Greg did a fine job on the brulee portion. FIRE!

Oh, and here is my “recipe” for margaritas – my favorite in the land. Make a single glass or enough for a party. The sparkling water makes it slightly unconventional, but it is muy potente without it. Besides, bubbles are fun! If you are lucky enough to have some prickly pear syrup on hand, add it to your liking and be glad. The flavor and color are fabulous.

  • 3 parts sparkling lemon, lime, or lemon-lime sparkling water
  • Two parts tequila
  • 1.5 parts lime juice, fresh squeezed or bottled
  • One part orange liqueur (I like Gran Gala)
  • 1/2 part agave nectar
  • salt

Stir everything but the sparkling water together in a glass or pitcher, and taste to see how you feel about it. Add whatever it needs before adding the water. Sometimes the lime isn’t as flavorful, and I end up having it in equal proportion to the tequila. Maybe you like it sweeter. It’s your margarita. Do what you like! Another way I let go of convention is by adding salt directly to the glass. Salting the rim is a major pain. Sprinkle some nice sea salt in, stir, and taste. Add more, if you want. Enjoy!

With all their favorite flowers in full blossom, our hummingbird friends are in a frenzy, with Rufous, Calliope, and Broad Tails zooming for garden domination!

New mushroom sculptures – aren’t they sweet?

Breakfast delights: biscuits, jam, sausage gravy, and, of course, coffee!

To riff on the famous Jaws line, I think we’re going to need a bigger table…

a hungry fritillary (I think) on the orange echinacea

We’ve also been hosting swallowtails, monarchs, admirals, mourning cloaks, sulphurs, cabbages, and just as many moths that I don’t know what to call. If only they weren’t so camera shy.

My favorite companions in one of my favorite places!

Gooseberries! These are from the neighbors, as our bush is just getting its legs. I made jam, of course. So good!

 

 

 

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