People like to celebrate firsts.
First birthday, anniversary. First time we are kissed, first time we get our heart-broken. We use these firsts as emotional markers in our histories. They act as signposts. A place to look up from, a place to look down on.
I do things a bit differently though. I always have.
“Walks to the beat of her own drum” was often said.
My Grandmother declared me a special type of stubborn.
Indeed I was. Am.
I was born on a Tuesday (Tuesdays child is full of grace. It’s Tuesday today! Full circle ) in March of 1969, which is the 3rd month and I’m not sure if this is the reason for my deep and abiding love of the number 3 – but I am more likely to take note of threes and use them as guides. Or maybe it’s because of something I read one time,
“Three is the first odd prime number”
A first I could get behind. The first to not following along, the first to be different, odd.
I have always known I was different. Not simply in the way that all humans are different from one another. But in how my senses and my brain seemed to be at some sort of odds, there was always an inner turmoil which would come screaming out, literally. And I just saw things,,,differently.
I was potty trained and walking by 10 months. I would scream and thrash continuously with clothes and diapers on. So the people in my life adapted and I went naked a lot in the safety of my Grandparents home. I never crawled, I still can’t. I can’t jump either. Or snap my fingers.
At 18 months my Grandmother in an attempt to stop my over the top sensory seeking behaviours gave me an empty vicks container to try to satisfy my unrelenting need to smell and taste the vicks. I was obsessed with it. Dangerously obsessed. So trying to work with my ever-increasing different ways of acting, she tried compromise. An empty container and on a shelf far out of the reach of a “normal” child the one she needed for colds. She tightened it. A grown women versus 18 month old me.
Who do you think won?
She found me in the crib the full container, emptied. I had eaten the entire greasy contents. I know why I did it. Vicks is an obsession that took me 20 years after that to get some control over.
Rushed to the hospital. I had to have my stomach pumped. I always loved that story. My Grandmother, not so much. Wait till I tell you the lengths she went to so I stopped obsessively seeking out vinegar to drink!
As I write this I am perched between the worlds of the third anniversary of my 2nd and 3rd seizure. The 3rd one was the deal breaker. My three. It always comes back to three. And so that’s why I am choosing today to launch my website and say, “I’m here!”
You have to go through one and two though, to get to three. And so…
1 – Monday December 12th, 2011 – after 17 hours of relentless vomiting I had my 1st seizure.
2 – Thursday January 12th, 2012 – I had my 2nd seizure at At 11:42pm. (look at those 2’s!!)
3 – Friday January 13th, 2012 – I had my 3rd seizure at 1:29am. The Doctor was bedside to witness it.
(clicking picture below will open the full-sized version to make it easier to read) ↓
Of note: He wrote the report at 3:13am on the 13th about my 3rd seizure.
I was in the coma for 3 days. I had a 50% chance of ever waking up again and I only had a 25% chance of coming through with no damage at all. As I write this I have lost appropriately 30%+ of all of my memories.
I died for a period of time while I was in the coma. I flatlined. My insulin decided to just disappear and running nurses and doctors and beeping machines happened while I went somewhere I always knew existed, though not understood like I do now. Even still, my understanding is dwarfed by the reality. I’m aware of that now though, which is a part of this life learning process. The part where we face our physical death but then move beyond that. Kinda heavy stuff.
From my journal – January 21, 2012
“Determined to get out of there I started my fight back to full consciousness. But it was a fight. When I first woke up and for quite some time I had things backwards, words wrong, double vision and a host of other little things. The Nurse would give me a small drink of water to see if I could swallow and tell me to swallow and I’d spit it out. I had seemingly lost half of my vocabulary as well, though some of my words substitutions were kinda funny.”
(clicking picture below will open the full-sized version)
When I heard the words “Status Epileptics” I didn’t know if it was my scrambled brain or just what a mouthful it is, but I didn’t really comprehend how big what had happened to me was. I knew it was going to take me places that I needed to go. I knew I was terrified but I was also anxious to get going. I went through a lot to get that far, I did not want to stop or be stopped.
I feel sorry for that Patricia. She only exists as a place so deep within me now that no one will ever, ever see her again. She had pure, unconditional love in her heart. She was new-born. She was talked back from leaving, no sung back from leaving by a sound I will never be able to explain. It is a song only for me I believe now. It has gotten me through things worse than that 50 minute seizure – since then. It will let me know when it is time to move on.
And something else which is quite remarkable. I have *always* known I would develop Epilepsy. There are people who can confirm this. (Dr. Penfield, I smell Burnt Toast)
Despite the sometimes simply unbelievable events to happen even after the harrowing journey to being diagnosed as having Epilepsy, in the midst of it all was an answer I had been searching for my entire life. It came first as a simple, yet life changing question from the Doctor who had helped save my life,
“Have you ever been diagnosed as on the Spectrum?” That was Monday January 16th, 2012.
More words between us followed, but they are the most important ones.
I care how and why but it is all too scary to take in for a few more months yet. It will take me about 4-6 months of exhaustive researching to let that question factor into the equation.
It took finding out that Autism Spectrum Disorder is in my family both paternally and maternally and that dyslexia and sensory processing issues are a part of this Spectrum to make that spark grow. I was diagnosed as Dyslexic in Grade 10 and much earlier for severe Sensory processing issues. I had to wear special glasses for years. My limitations were many, though not respected if reconsigned.
I was also diagnosed with a few other things along the way. The most life impacting was Manic Depression. That was 1984. We now know that more commonly as bipolar. In 1986, I was diagnosed with an eating disorder that was later understood to be anorexia. In 1987 I was diagnosed with a type of traumatic anxiety disorder related to extreme and long-term abuse that became known as PTSD. I totally rebuffed any suggestion of depression. It took till 2013 for me to accept that diagnosis. This is all so common for young women who are different, like me. I am typical in my atypicalness.
When I finally let the key open the lock for me, it all came flooding in like nothing I ever experienced before, and I’ve had some pretty heady experiences. It couldn’t have happened without the seizures and the coma though. Heck of a way to get the answers. I do like to do it my way though.
The moment you accept on a level that is indescribable that you are Autistic when it comes after so much life lived in struggle and turmoil, it is like a tidal wave. And when that wave was finished washing over me and I stood there gloriously wet, it all made sense. Every bit of it.
(some of you are nodding 🙂 )
And so that’s the point from which my online journey in my home here, “Echoes of Mermaids” at persnicketypatricia.ca begins. That intrinsic understanding that happens when we get a key to our universe on a cellular level.
In the coming weeks and years I plan to create a full, lasting but ever evolving picture of my Autistic journey. It will be in many forms of communication. Audio, visual, with poetry, art, in all the ways I know how to reach out from here. I want to become a resource but also stay in a state of learning. I want my need to advocate to finally be met with the confidence I need to do it. I want to take my experiences and use them not only to pave my journey forward, but to help make that journey more understandable for those on the Autism Spectrum who are just starting out.
I think Autistic adults are one of the greatest untapped resources there are in the world. I’m here to stake my place.
My name is Patricia, and I’m Autistic 🙂 Welcome. Namaste.
Coming up next?! I share my artwork for the first time, which is the inspiration for the name of the website, Echoes of Mermaids. It’s going to be a pretty big “first” for me. I’m nervous and excited.