Welcome new subscribers! Thank you for joining this hearth of inquiry and reflection as we explore living well, instead of living “fixed.” On Sundays I share chapters from my memoir and for those who are new here, I recommend starting from the beginning with the Preface. I’ve conveniently linked successive chapters at the bottom of every page so you can binge read and catch up easily. Or visit the Table of Contents to pick up where you left off. My mid-week posts explore “living unfixed” through voices in the community—videos, quotes, interviews, poetry, resources and prompts—providing opportunities to reflect on your own life experiences and cultivate strength, resiliency, solidarity and meaning from the messy and unfixable.
Soon, Syd will outgrow the public education system and “what’s next” lurks and looms. For parents of adults with intellectual disability, this million-dollar question is marred with anxiety and uncertainty and keeps SSRI pharmaceutical companies in business.
Over the last nine years, I’ve sporadically researched community-based housing options for adults with intellectual disability. I want to believe Syd’s future is bright—filled with peers, agency and dignity—but both state and private establishments are often lacking or inaccessible, so families become full-time caregivers. And Syd, while abundantly sunny, is full time—physically, mentally, emotionally. This scenario haunts me and its implication on our lives. And muffled under the fear, a mountain of guilt and shame for feeling the way I do. Many of our vetted homes have eight to ten-year wait lists. Syd’s half-sister Mac (a few years younger but wise beyond years) has expressed interest in caregiving someday and we hold onto that as a possibility, but she’s still in high school. We also explore turning Dave’s four-bedroom rental into a home with staffed aides and a few additional residents.
Possibilities are discussed but never land. We limp along with a half-baked strategy impinged by unprocessed trauma and immobilizing terror—the history of care for persons with intellectual disability is fraught with stigma, mistreatment and neglect.
When summer arrives, we’ll need a plan. But when unexpected circumstances throw more curve balls into an already flimsy arrangement, uncertainty wins. Dave — my rock, my foundation, the roots that pull me back to earth — is yanked from shore as apprehension for Syd’s future becomes all encompassing. I want to be his lifeline, but there’s nothing solid to grab ahold—I’m already unmoored. We flail together, reaching arms out to one another for salvation, but the storm is too great.
The drowning can’t save the drowning.
Disney or doom, cells respond all the same.
As the unknown erodes us from within, we grasp for the known. Meals still need to be prepared, clients still need our time, plans still need to be made. We take steps forward, however inconsequential, to ground ourselves in the imminent storm, and I grasp for any branch of hope, goodness or solidarity I can find. After the Christmas holiday, I email Carol, Janet and Rich and impulsively suggest we meet in person in the spring. Less than two hours later all three reply with a resounding Yes.
My body makes no distinction between fear and excitement. Disney or doom, cells respond all the same. I lose words, my core trembles, senses question, sleep evades. This is nothing new. Even in my youth, dad would meet my nighttime anxiety with a reassuring hand on back and teach box breathing. I was never successful at smoothing the energy that blazed through me. But eventually, nerves would reset and a semblance of calm returned. But now I can’t find my reset button. I lay in bed and imagine dad massaging my feet, drawing energy downwards, but it doesn’t work. Sometimes I ask Dave to lay his entire body’s length on top of me, shoving me into gravity. I am loose silt compressing under the heavy, certain earth of his body. My cells listen and try to remember. But they slip, I slide, fear floods.
What have I done?
*
Early January I travel to Mexico for a catalog job, arriving a day early so I can settle in, take a walk on the beach and rest. The next six days will be hot and long with little time to unwind. My friend and crew member Destiny also arrives a day early so we meet on an upstairs patio for lunch.
Over two bowls of tortilla soup, Destiny viscerally recounts one of the scariest days of her life—four months ago, this healthy, bright, twenty-six year old beauty had a stroke. I listen, breath halted in my chest , as she describes the harrowing experience of a body’s command center undone.
My cells are listening too. They hear panic, and can’t distinguish it from their own.
I go green. I recognize this sensation—I have blacked-out easily a dozen times as an adult—doctors say I have a “strong vasovagal response.” But while sitting down? Usually it’s triggered by chronic low blood pressure or diabolical menstrual cramps. I stand up instinctively, reaching for a bench a few paces away. Not a good idea. My vision closes in and I black out, face-planting on the hard concrete.
When I return to consciousness, I hear Destiny calling out for help. My leggings are wet with urine and my nose bloody. When staff and crew members surround, I casually brush it off. “I pass out a lot.” “Maybe I was dehydrated.” “Maybe I was hungry.” But when I return to the privacy and safety of my room, I tremble with worry. I can’t for the life of me figure out why this happened. Armed with food and electrolytes everywhere I go, I know for certain I wasn’t dehydrated, or hungry.
I call Eric. I need to feel something, someone solid.
He answers the phone. I adore my brother’s voice. It is sap. It is thick, dark molasses for my raw nerves. Eric is enveloping, unwavering reassurance. “Aw sis. You’re strong. You’re going to be fine. Take it easy. Eat a banana, just in case.” Two bananas later, I take a nap, join the crew for dinner and work the next six days. Other than a lingering angst about my unexplainable blackout, I feel completely normal. And thanks to Destiny’s magic make-up, careful positioning of my face to hide the swelling, and Photoshop, I look normal too.
But when I return to Portland for another week of catalog work, my body again, sounds an alarm. While driving to the photo studio—a route I’ve traveled countless times—the road suddenly undulates and flips. My stomach responds in kind. I inhale, focus, steady hands on wheel, exhale. But there’s a gymnasium inside; I slow the car and safely pull to the shoulder. What the hell is going on? I try to breathe deeply. I tell myself, I’m fine. I’m fine. I’m fine. I sit. Wait. Turn on NPR to distract escalating nerves. Eventually the tumbling routine settles, and I get back on the highway and drive to work. The car’s dash reads normal but my body’s check engine light is flashing dangerously red.
As my 40th birthday approaches, I spend days filming and editing a series of video journals for a local non-profit. When I stand up from late night editing sessions, my chest fills with ice, hypothermic jitters rattle my ribs. I take scalding baths to warm up but the heat can’t penetrate the deep freeze settling in.
My birthday comes and goes without much fanfare. I develop eye-stabbing headaches and meet anxiety’s inevitable twin: depression. Dave invites family to make a surprise birthday visit—it falls through last minute, but Eric on a whim still makes it. Our time together is brief but his effort is a lifeline. My sense of identity and how it fits into my family, my future with Dave, is unraveling. I need them. I need dad. I need Dave. I need the ground beneath my feet to feel solid. Birthday tacos and tequila make my head spin more than usual. I stay in bed after Eric leaves, numb catatonia the last option for nerves undone.
Sometimes I've just gotta sit with these for a while...
Oh, Kimberly. You are so strong, no doubt about that, but maybe that is what your body is trying to tell you...to stop being so strong and fall apart. Surrender. Let it all go so you can put yourself together again with the truth woven into your life, body, and heart. When the vibration of our life changes, the original structure that we used before cannot hold. We must tend to ourselves in a way that recalibrates our inner vibration as well. Finding out the kind of earth shattering news you received about your life/family/father is exactly the kind of monumental shift that would require an entire tear down of inner and outer worlds. We've trained ourselves to be utterly terrified of falling apart and yes, many people do not have the luxury to fall apart at the exact moment they need but that debt always gets paid one way or another. We resist, we fight, we run. I've often fantasized about opening a bed and breakfast where people could feel safe falling apart. A place where they wouldn't even have to worry about eating or hydrating. They could stay, get cozy, and completely come apart until they were able to put themselves back together again the way they needed. A lot of us fall apart in sections. Even that is a privilege because sometimes our bodies don't allow us to call those shots.
It has been incredible to witness your story here and once again I am seething with anticipation. YAY SUNDAY!!!
Sending you the biggest bear hug and please ask Dave to give it to you from me, in person :)