*Trigger warning for brief mention of Sexual Assault.
I was an “At Risk Youth.”
Not the same as being an experimental wild-child or free spirit. Coming from a dysfunctional family I was homeless, fatherless, and if you had asked me—or anyone around me—utterly fearless.
In hindsight I know that my brokenness was mistaken for bravery. I possessed (or I should say was possessed by) a swaggering bravado that hungered for approval from a place of deep insecurity and reacted to unconscious triggers without the self-awareness required to make healthy choices for myself.
I confused compulsions with instincts and paranoia with intuition; needless to say, I was a hot lil ol’ mess, and the fact that I survived that amount of belligerent bewilderment as a child, adolescent, young adult, and adult is something I never take for granted.
I went home with strange men of all ages. Sometimes groups of them, locally and out of state. I got into vans with strangers offering candy that would render me blotto and completely at their mercy. I took drugs I didn’t know the names of and got black out drunk in the middle of nowhere. It was a continual free fall, sometimes in the bygone era before cell phones and sometimes I just didn’t have a phone or any means to call for help as I stumbled along the Interstate 5.
Oh, The Places You’ll Go when you have zero self-esteem and no sense of security.
There’s no bragging here; I’m neither proud nor ashamed—anymore.
It’s just how it was for me, for a very long time.
Before I had children the decades long process of getting my act together was already well underway, and when I had them it took on even more urgency; however, not knowing it at the time, I tried to skip some key steps in the healing process and was bound to circle back and repeat them sooner or later and if not, faced certain disaster.
Time went by with many an irrepressible hiccup but not without its victories.
What really had me hung up for a while was trying to see a new horizon through the same old lens, in spite of working the 12 steps multiple times, being prescribed various psych meds, exploring in-depth everything from evangelical Bible studies to Reiki, Jungian psychoanalysis, art therapy, Buddhism, you name it, hoping and literally praying it would help stabilize my Central Nervous System and bring my life into balance.
Let’s just say, the continual disruption in my life was never for lack of effort on my part. I just didn’t know what exactly was at the root of it or what precisely to do about it.
I was the kind of person people were frequently telling to “calm down.” And I alternated my replies between a tearful “I don’t know how!” and “I am calm!”
More than one person prophesied that I would die before I turned 18, yet at 34 I was still very much alive and kicking like the battered racehorse that I was, or should I say…alive and ticking, like a time bomb—and I don’t mean that metaphorically. Unbeknownst to me I had a dormant genetic mutation that in the words of my neurosurgeon “is asymptomatic until it inevitably ruptures.”
So anyways, it inevitably ruptured.
That was nearly eight years and many Tonic Clonic (Grand Mal) seizures ago, but it feels like many lifetimes ago. My entire worldview was upended in the 10+ hours it took the medical professionals to sweep me off the sidewalk, discover that my brain was hemorrhaging and that I was in critical condition, perform an emergency craniotomy, and get me to the intensive care unit. But traveling from one state of mind to another took far longer than removing the malformation from my brain did.
I don’t take the bus.
I feel self-conscious when I inform people close to me what I do or do not do to keep myself safe.
I had internalized the patriarchal, capitalistic belief system of modern society just like everyone else I know, the “divide and conquer,” “take no prisoners,” “mess around and find out,” “win at any cost” approach to life that thrives on competition, conquest, and ambition and turns a deaf ear and blind, condescending eye to the needs of our own bodies and psyches.
I don’t take the bus.
The humility it requires to practice the “An ounce of prevention is worth a pound of cure” philosophy was brutal at first.
I used to take greyhound busses to states I’d never been to and counties where I didn’t know a single soul—alone and penniless.
Now I try to resist the urge to explain my reasoning when I announce that I don’t feel safe on the local bus in daylight as an adult woman, because I don’t owe anyone an explanation. Nevertheless, sometimes I get the feeling that people assume I’m letting epilepsy control my life, especially in a disability culture that mirrors, well, everywhere else in Western civilization’s culture by treating disability like a foe that is to be heroically vanquished.
“Don’t let (fill in the disability) stop you!”
“You can still do anything!”
“You are not defined by your disability!”
And more and more frequently:
“(Expletive deleted) __________ (Insert disability)!” is the constant rhetoric “championed” in every group I’m in, along with people applauding weddings, graduations, promotions, and the usual lifetime achievements that they have accomplished “In spite of” said disability.
So much anger, so much hostility directed toward what is essentially a faultless condition of the human body.
I’m here for celebrating anyone overcoming adversity; however, I’m also here to celebrate anyone else living with adversity and making peace with it in a way that honors the fact that, being disabled, by definition, for many of us means we actually can’t do anything we want or everything that an able-bodied person can do, and that’s okay and important and our lives are worth celebrating as well.
The typical narrative for disabled people that people are comfortable hearing about adheres to an able-bodied storyline with the disability cast in the role of antagonist and the moral of the story being that you overcame it.
A lot of us are living with—and adapting to living with—incurable diseases, conditions, and disorders that we do not foil at the end like some fire-breathing dragon.
For as many traditional “success” stories as there are, there are the less spoken about and just as common stories of pain and loss and heartache, because, who wants to hear those?
I want to hear the truth to honor the fallen who never got back up as much as the ones who keep getting up as well as to properly equip myself with the information I need to keep myself safe, which also comes from lived experience.
I get how it could look to the uninitiated when I haven’t had a Tonic Clonic/Grand Mal seizure in nine months, yet I still don’t take the bus; I’m up no later than 5:20 a.m. every morning to take my medication; I avoid caffeine, sugar, MSG, food dyes and alcohol, even grocery stores and other places with florescent lighting, staying up past 10 p.m. and so forth.
It could look like I’m just curled up in fetal position, afraid of my own shadow.
When I hear things like:
“So&So has epilepsy and it doesn’t stop So&So from international travel!”
It’s tempting for me to reply with things like:
So&So also has a caregiver in the form of a spouse or parent or an actual professional.
When I travel, be it on a bus or plane, I’m completely on my own, therefore more vulnerable.
Is So&So also an SA survivor? Because I am, multiple times over.
I also have two grown children who already almost lost their mother.
I also have a completely different form of epilepsy than So&So.
The kind that could be fatal.
Or I could add:
So&So had a seizure on the subway and came to with someone kicking their head in on the platform.
So&So had a seizure and was sexually abused in the confusing black out “postictal” period that follows a seizure.
So&So and So&So and So&So were mistaken for addicts during epileptic seizures and wrongfully administered Narcan or tazed and arrested.
Or So&So and So&So and So&So were determined to not let their epilepsy stop them and they all died what could be considered preventable, premature deaths.
Or I could say:
Once I had a year seizure free and I got so comfortable I let my guard down and had a seizure where I almost fell down three flights of concrete steps in the nude.
I came to on the floor after being unconscious following a seizure with the door to my apartment wide open.
But I don’t say that; instead I comfort myself with the knowledge that ableism is a social, rather than personal problem.
I don’t have to justify the reasons I choose to protect myself or the way I go about it to anyone who’s eager to see me get back in the saddle or back on the bus just because that’s how they define living life to the fullest without facing the exact same obstacles I have encountered.
I’m no more fearful now than I was fearless way back when.
I was reckless and destructive because I didn’t value myself or life and engaged in high risk behaviors for temporary gratification to impress other people or flee from my feelings.
I now find taking unnecessary risks a waste of precious time and energy, and I will do whatever it takes to protect myself from further harm by admitting that I am in fact playing with a handicap that absolutely does not define me yet is an undeniable part of my reality. After nearly losing my life on more than one occasion, I truly value life now more than I could have ever imagined.
I don’t want pity, nor do I have any use for egocentric pride because I have nothing to prove anymore.
I now believe inner peace is the greatest accomplishment anyone on earth can hope to achieve.