There’s a reason I didn’t go into the medical field besides the fact that I faint if I look at a needle. I don’t do well with illness, disease, or sickness of any sorts, or thoughts of being attacked by a killer species. I do fine with driving my car, walking down dark alleys, crossing bridges, and climbing high places, just can’t deal with physical health conditions—well at least not rationally. The common cold sends me into a tailspin: worse case scenario, worser case scenario, worsest case scenario.
In the course of my four decades plus of living, I was certain of my imminent death at least five times a year. Looming demise total equals 200 times, give or take a death or two. And I’m not talking a passing thought. I’m saying a good two- to three-week sickness-induced death-terror cycle. And with the invention of Google God, the all-knowing search engine, I’ve also had hours of adrenaline-pumped investigative research.
Last year, about this time, I was certain, dead certain, that my heart was going to explode from a genetic disorder. I was so convinced I had the syndrome that I was continually analyzing myself for symptoms, even in my dream state. In fact, in a comical attempt to self-diagnose, I compared my attached earlobes to others’ attached earlobes and even wondered if my large Italian nose could feasible be considered pinched.
When I was younger, rabies was my big fear. I never ever should have watched the depressing classic Old Yeller in third grade. Why?! Afterwards, my hamster-bit finger led me to check my mouth for foaming saliva hourly, for a month! Watching Hitchcock’s The Birds was another faux pas. Remember the killer bees? Well I do. I believed for years the bees were approaching in swarm.
Bloody noses are notorious fear-buttons, ever since I saw that character on a television show with a bloody nose bleed-out and die.
My fear of the C word started after my kindergarten teacher died; and I still can’t write the word out on paper. Which ironically-sucks because it’s my astrological zodiac sign. Four times during my life, twice as a teenager, and twice as a young mother, doctors suspected I had C or pre-C. No cause for alarm in all four cases, but the panic that ensued during the waiting period was insurmountable.
You know what really bites? Working at a homeless shelter and having a child infected with AIDS bite my leg through my jeans. The doctors assured me my chances of contracting AIDS was almost zero; still they wanted to be certain. I checked my tongue for a white-coat and my skin for sores for a good year.
My most laughable approaching-doom-fear happened when I was nursing my firstborn in the late hours of the night, and I’d stare down at the dirt in the corner of my toenail, and know I was going to die of toe fungus. If you bring in the big guns like MRSA, I so freak out. Any infection is MRSA. Hives? I’m certain I’ll suffocate from severe allergic reaction. Menstrual cycle off a day—I have growths on my ovaries.
To make matters worse, doctors have wanted to remove my uterus and my gallbladder, and to biopsy my kidney. None of which happened. But the fact of their recommending such procedures makes me think I have bad parts to begin with.
If you’ve got your wits about you, you’ve probably gathered I have a wee bit of a phobia to illness in any form—real, made up, imagined, or non-existent.
What many do not understand about this illness phobia is that no amount of exposure makes a dang difference. With exposure therapy, if someone is afraid of bridges, you can slowly and decisively assist him or her in overcoming the bridge fear. A common therapy strategy might be first showing pictures of bridges, next playing with toy bridges, later taking photos of bridges from afar, and then crossing a small bridge over a creek. If therapy is effective, then the person eventually will cross a bridge as a passenger, then drive assisted, and later cross alone. Sounds logical.
Doesn’t apply to illness: First look at pictures of people who are sick, next play in filthy area, later… not helping! And getting sick and sick over and over again, doesn’t help either. Done that.
I haven’t been feeling myself, lately. Which is significant. Generally speaking my self, due to a host of syndromes and conditions, is relatively fatigued, a little melancholic, and a bit sore in the muscles. So, I hadn’t taken too much note of my intense fatigue, until I could barely function most of the day. My doctor had in the meanwhile sent me my annual blood test forms in the mail (twice), which I avoided like the plague (or in my case the common cold). I finally dragged myself to the doc when the heart palpitations and shortness of breath kicked in. By the day I got my stubborn self to the doc’s office, my forehead was peeling like a rattlesnake sheds.
The good news is it turns out those eight extra pounds are not my fault! And either is this depressions cloud I blamed on the Washington winter weather. Turns out I have hypothyroid.
Guess what this hypothyroid reckoning does to my mind. Here’s the conversation I had with my doctor. I kid you not.
Me: “Well, now that I know I have hypothyroid, I guess I should mention that I’ve been having trouble swallowing. I read that’s a symptom, too.”
Dr. “Oh.” She pulls out a lab slip. “Well then we better get an ultrasound for nodules.”
Me: “Nodules? Can I die from nodules?”
“No”
“I can’t?”
“No.”
“What is the worse case scenario?”
“If they find nodules, the protocol is to keep a watchful eye on them. If they grow, they’ll likely drain them. But nodules are not deadly.”
“Oh, good, but what about cancer? Could I have cancer? Or did my blood tests rule that out?”
“No. Your blood tests didn’t rule that out. But thyroid cancer is very, very rare.”
My eyes grew super big and I swallowed hard.
Dr. added: “And the cure rate for thyroid cancer is 100%.”
“Oh!” Huge sigh. “Thank you so much for adding that. How long will I have to take the pills?”
“For the rest of your life.”
Long pause.
Me: “But what if the end of the world comes? How will I get my pills?”
Side Note: (euphemism for I can’t stop babbling)
Taking into consideration the four types of thyroid cancers, I recently researched, the combined cure rate is only 95%. For better effect, in the writing above, you’ll note, I fearlessly overcame my fear of the word cancer. The title Me in Parts means I feel as if I’ve sorted myself into parts with all my constant sickness analysis. The good news is, I always live like I’m dying.
I awoke with an awful anxiety. This I recognize as a pressure that cries to be released. Though there remains this fine line in what I truly want to pour out on these pages and what society expects, accepts, and wants.
In some ways I’ve turned this blog into another player in my game. This game I’ve played since I was old enough to know that if I was nice enough, funny enough, and interesting enough, people would pay attention to me. And in turn, if I exhibited too much honesty, was too revealing, or too straightforward, people would reject me, or worse, simply disappear.
A woman with Aspergers remains a constant actress. There is no escaping this. And to me this is the thorn of having Aspergers. I continually scope and evaluate. I look at others’ actions and responses, more so than many can phantom. Some of the observations breed questions, a continual whirlwind in my mind. I wonder the simplest of thoughts, such as what was the motivation behind that person’s comment to more complex thoughts of what is the motivation behind my writing.
My mind forms a tumble weed of sorts, spinning and rounding the field, pushing up dust and debris. The child in me watches in fascination, the driver, the one avoiding the tumbling of thoughts, tries best to steer away. Still in the distant, regardless of my view, the tumbleweed remains spinning.
Some might think: Write what you want. Who cares what people think.
If only I were so simple. If my mind worked in the aforementioned fashion, this blog wouldn’t be a blog about a woman with Aspergers. I guarantee that.
With Aspergers one of the biggest burdens is: Thinking about what you are thinking about me. It’s not narcissistic or selfish. It stems from wanting to be seen, be valued, be loved, and be recognized for who I am. It stems from not wanting to be misjudged, misinterpreted, misunderstood, ostracized, dejected, alienated, stabbed in the back and persecuted. It stems from a lifetime of recognizing I don’t quite fit in with the mainstream, and if I don’t learn the norms, the unspoken rules, and then pretend to a degree and assimilate, I never will fit in.
It comes down to the options of fake a little or break a little. And I’ve been broken. The little bit of faking leads to a little bit of guilt, and continued self-analysis and reasoning of how to be a better person.
In a lot of ways I am in a perpetual state of figuring out how to be a better person. I recognize I’m good enough. I recognize I’m beneficial. I love me. Those aren’t the issues. The issue at hand is trying to be seen by you in the same way I see myself. This barrier remains, this veil that divides us all, and how I long to merge with others and be entirely one.
At times, having Aspergers is a feeling liken to being an ugly duckling that transforms into the beauty of swan, only swan is wondering why ugly duckling was not good enough for the world. Why ugly duckling has to be swan to be loved.
I extrapolate there is much shame inside of me. This shame is a part of me. I don’t see shame as wrong or needing fixing. I don’t’ see any part of my life as wrong, wasted, or unnecessary, and certainly not bad.
The shame stems from wanting to be as authentic and real as humanly possible. Only in being human, I have a mind that wants to protect me.
I want to be a ship in the night that sails with all the other ships in a forging fleet across the ocean waters; I don’t want to be a lone ship. But if I am myself in total, I will likely be cast out to the rough waters, banished from the refuge of loving souls.
The fear arising today is a fear based on the future—a fear of not knowing which route to take, how to steer, where to go. I recognize this fear. I wave to it. I speak to it. And in so doing, I lessen fear. But the specks that remain speak volumes and still haunt me.
I have this spirit inside of me that both longs to share her soul and light but that also longs to retreat into a hovel where no one can penetrate my skin.
This fear rises in thought of where my writings are traveling. Who reads these words. And what is to become of these words.
My dream is to publish, whether through self-publishing or a literary agent. But this, I am certain is many writers’ dreams. I feel guilt in dreaming. A concept I don’t quite grasp.
Still I dream.
And in my dreaming I do find hope. In another reading these words, I find hope. And so I sail on; whether lone ship or in the company of masses, I sail on.
If I was to turn back the pages of my life, to the first calm months at my stepfather’s house, my days would appear wonderfully simple and sweet, and in truth they were. It was a time when a gentle thread of calm and security weaved through my days. A brief moment I fondly remember and continually reflect back upon, perhaps in an attempt to regain some semblance of normalcy or to remind myself there was some good.
There weren’t any worries about money. My stepfather Drake was an attorney and helped the city officials acquire land for approved projects, which sometimes meant property owners had to give up their homes. It was rumored much later, when I was an adult, that Drake’s firm was actually responsible for my great-grandmother having to abandon her house in Monterey, California for demolition, to make way for a multi-level parking garage for tourists…
The rest of this story is in the book Everyday Aspergers
Everyday Asperger's 