Monthly Archives: June 2014

Everything In!

As I’m getting closer to leaving for my Midwest adventures, I’m getting more and more back into my groove. The funny thing is I never really had a groove to begin with, so this is quite entertaining.

On Tuesday morning (ish), I’ll begin my trek to Ohio where I’ll be teaching a short summer film camp. At this camp, the instructors are all on the autism spectrum and they will be teaching people on the spectrum. How amazing is that! I’m still a bit in shock that in less than 2 weeks I’m going to be an instructor. I’ll also be speaking at two Autism conferences before making my way back to Maine to spin fire, of course.

So the next few days Tuesday I’ll load up my car and relocate myself for a month.

I’m not sure how some people would react to this, uprooting their life and completely shifting everything for a month, but it’s not the worst thing in the world for me. The worst thing for me really is a 9-5 steady job doing the same thing every single day. So this is the adventure path I’m on.

I’m not afraid, except of all my plants dying in my absence, I’m actually very excited.

I’m on this career path and my biggest struggle is not to get too overwhelmed. I addition to all of my fun work related activities, I’m also still a full-time graduate student. In fact, I’m writing this blog instead of one of my papers.

I’m trying to get better at not swamping myself with work, but it is a learning process. It takes times and I need to learn to be more patient with myself. So the next few weeks I get to hermit myself away for a bit, when I’m not having lots of fun, and work on some big things.

Make sure to stay tuned for lots of awesome updates!

(Don’t) Panic

I don’t have many memories of when I was younger.

They all tend to blur together in a random mess of connections. It’s interesting because sometimes memories will be triggered by a specific sense. The smell of Florida is one that always stays in my mind. My mother, father, and little brother would vacation down there in the winter. We staying with my grandfather in his retirement village. We drove down from Chicago some years and I think in there lies some of the reason why I love to travel by car. One time, I managed to back all my barbie gear and can almost remember how things looked out on the porch when everything was assembled. I can almost remember the book I was reading that dropped in the water, or it got dropped in a pool, or it somehow got wet. 

I almost remember which book.

So when I did my Midwest/Southern road trip: Escapism Is Cheaper than Therapy, I only briefly passed through Florida. I say briefly because it takes about ten hours on I10 to cross the top of the state. That was the only time I really paid for a hotel/motel. I needed to rest. That’s when the smell triggered me back to my childhood. I remember an ice cream stand in the shape of an ice cream and a mini golf course.

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When I was younger, my parents and doctors thought I had a heart defect. I don’t know how long, but I know I wore a electrodes attached to a bulky electrical box. Once I week we would connect this box to our telephone and it would transmit things to the doctors at the other end of the line. This was in Chicago and since my father knew so many medical people, I remember these guys had a fancy office.

It turns out it was not a defect, but panic attacks.

My panic attacks are very well defined and they have become even more refined as I get older. They still mimic some of the same characteristics, however there are new more devastating results.

When I was in College, I started experiencing some very bad health problems my freshman year. This was after have a very difficult transition to College because I was still physically recovering from my Traumatic Brain Injury and taking tons of medication to control, in part, anxiety. The worsening health problems came from Lyme disease which I had contracted but never experience a ‘target mark’ so it went undiagnosed for years. As an autoimmune disease, Lyme really can be devastating when I have a bad habit of getting myself so stressed out that I become physically ill.

I miss 279 days of my high-school career due to medical issues. I still managed to get on the honor roll a few times, much to the dismay of several people who did not take my medical issues seriously. I’d love to one day receive an apology for how I was treated by some, but it does no good to stay fully in the past. I’d like to say I’ve forgiven many of them who said horrible things to/about me, however the truth is simply I’ve forgotten about them. The only benefit to some of my TBI is I’ve been able to forget some of the bullying I’ve endured, at least most of the time. Being a survivor of many types of abuse, being treated certain ways can induce a Post-Traumatic Stress Disorder (PTSD) Panic Attack.

Part of my complete health overhaul has been getting myself in a place where I can remove extraneous anxiety from my life. I have the skills now to know how to remove myself from situations which will induce a panic attack. It’s taken me a bit of time to spot some of my triggers and it is still a work in progress.

My biggest problem lately has been my stress load. It has been getting very stressful in my life and this has compromised my health. I’ve been having non-epileptic seizures recently, which I have not had since the end of September. My lyme disease has acted up because I’ve been so stressed and this is causing me to be tired, thirsty, nauseous, not hungry, as well as increasingly difficult to swallow. My anxiety also is directly connected to my sensory system causing everything to be hyperactive. This means I can hear things from far away, see very well in virtually any condition, smell things stronger or lingering odors, tastes are stronger or sometimes taste completely different, and every spot on my body has a painful sharp needle feeling similar to when a body part has fallen asleep resulting in one limb being paralyzed for an indeterminate amount of time.

This is my life now.

This is crippling and debilitating feeling. It is on these days when the world swallows me whole that I get the most messed up feeling of optimism. I have no idea where it came from except my mother takes credit. It is on these darkest days when I know the good days will mean so much more. I know those days are filled with laughter and happiness. Those are waiting for me on the other side of this cloud.

I’ve known what it’s like to get lost in this anxiety cloud. I know all too well what toll this is as it’s one a pay every few months. Normally, it’s just a weekend break or something and I pick up the pieces and move on.

This time it’s different?

I’m not use to letting people see the vulnerable side of me. Sometimes when I show the breaking, people run away. I break loudly and ‘suddenly’ all because some straw finally broke the camel’s back. I’m pretty sure this is an autism thing, too. The world gets too loud for us and instead of people helping us quiet it down their voices get louder, too. The anxiety causes me to distance myself from some people out of….self-preservation. Some people it takes a lot out of me to interact with them. Those are the people who move and think very quickly while I’m still lost in the corner. The speed at which they move and talk actually increases my anxiety.

I remember in college interacting with people and it triggering me at times when it seemed like their words fit seamlessly together or moved too quickly. Unfortunately, I hung out with debaters, performers, and campus leaders. These are all pretty loud groups and often I would end up overwhelmed.

It’s been said multiple times by multiple people; nobody is ever neutral to me. People either enjoy my company and like me or else they find me frustrating and rude. It’s in large part because I don’t know how to interact with people in every situation and sometimes I say things which come out just ‘wrong’. I’m still actively trying to work on the interaction part, but as I’ve mentioned earlier it is a work in progress.

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Last night I remembered somethings.
I was triggered back to younger days in different paces. These were memories from when I was much younger and but even more recent. The seemingly random pieces of memories, a view of an elevator or a feeling of the carpet in-between my fingers, again share a sensory trigger.
This trigger is the same panic attack long thought of as a false memory or a bad dream. Trying to convince myself it was only a story I once read, I know this feeling too well in my body.

Even as I move around to new states and grow up, this lump in my chest still feels like home.

This is living with anxiety.

Let the floods come in

There’s a snap that happens. Maybe it’s just me, but I doubt it’s only me. My snaps just ring silently under the skin until they leak out.
This is the peak when overwhelmed greets anxious.
It’s these times when I wonder how something so loud can be so silent.
These are the days where the last stone finally slips out of place and the floods race in.
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This snap is very familiar to me and I’ve experienced it since I was a child. It’s the snap of anxiety when it finally takes your breath away. As a former friend once said, it can reduce me to “a crying ball of useless-ness on the floor“. Yeah, I’ll forever remember those words as a warning to stay away from a person who I once considered a dear friend.

As much as I try to manage my anxiety, yesterday was the breaking point.

I’d been seeing my warning signs written on the walls, but I had been trying to ignore them. I’ve been too forgetful. I’d walk into rooms and not even know why I was there and forgetting important things. My appetite has been non-existent while leaving me with a nausea feeling. Bruises have once again randomly appeared because I have not been paying enough attention to my body and I don’t always realize something is wrong physically. And then there’s the emotions which just cap off the everything.

My overwhelm sessions don’t scare me any more because I know what they mean now.

Some people come home from a stressful day and they take a hot bath or have a drink to unwind. I don’t do that. I just keep going. I process my stress and anxiety internally so it affects me physically. This leads to the number one thing I’ve heard for my entire life and I heard it again yesterday.

This seemed to come out of no where. One minute you were fine and the next you were crying.”

THIS is anxiety on the spectrum. It’s not just that there is a difficulty separating ourselves from anxiety, we literally get stuck in an anxiety loop. It’s a real thing and terribly ironic that I had to grade an assignment on it this morning.

I’ve stopped looking at my crashes as a negative thing or as if there is something wrong with me. The jerk who thought he could make me feel worse about my own mental health issues underestimated me. I am vulnerable, but not useless. I am fragile, but not delicate. I am strong and I am also weak. Unfortunately, I need to reach my crash point when enough things aren’t working in my life. For me, this is just a sign to rebuild and make things stronger.

I’ve been slipping into ‘unhealthy’ the past few months and it’s time for a bit of a reboot. I’m not ashamed of my struggles because I know other people face them. When I posted the poetry/reality at the top of the page, 3 of the 4 people who responded with messages are on the spectrum. This type of anxiety and meltdown is something we know all too well.

Trauma-Rama

Last week began my summer session. I headed off to Colorado to help out at the Autistic Global Initiative (AGI) retreat. AGI is a program part of the Autism Research Institute (ARI) run by autistic self-advocates to create dialogue and promote positive change in the world. When I went, I was an on deck leader to their youth program and was also going to help out with shuttling participants.

There was a theme to the retreat which is very special to me and the reason I was invited: Trauma and Survivorship.

I’ve spoken about and made allusions to different types of trauma on my blog so far. I’ve openly spoken about my head injury, which still can be difficult to talk about, and have also talked about some of the toxic relationships I’ve found myself in. So this past week I relived some of my trauma in order to get a better understanding of how I have healed.

It was an intense week for me because I had to expose a still vulnerable part of myself to better help others never have to go through what I have been through. If one person can get out of a negative relationship, learn to heal, or prevent trauma from happening the emotional toll will be worthwhile.

On Sunday, the last full day of the retreat was designed to the Youth Leaders. We had a facilitator come in to help create a visual representation of how trauma affects a person. I’ve attached the photograph below so you can get an idea how our conversations went. The AGI Youth Leaders are a diverse group with many different life experiences, but unfortunately we have some traumatic things in common. Although this project was specific to the Autism Community, many if not most of these feelings or reactions are universal to the human condition.

Visual Graph of Trauma from the AGI Youth Leaders, 2014. Photo by Chantal Sicile-Kira.

It was an amazing experience to participate in this Think Tank and there will be some amazing things to come out of our hard work. While at the retreat, we were also being filmed for a few video project relating to survivorship and sensory needs. This material, as well as a great art project designed by my amazing mother, will be put together into a Think Tank packet other groups can use to have their own conversations.

I’m also very proud to announce I was made an AGI partner after the retreat and will be working to help affect lots of positive change with the other partners. Although I will not have an active role in the work the Youth Leaders are doing related to the Think Tank work, I am so excited to see what these amazing self-advocates create. The world is ready for these young leaders to make their voices heard and I’m very happy AGI will be helping make their voices heard to a wider audience.

If you would like to find out more about AGI, please visit their website at http://www.autism.com/AGIFAQ where you can sign up for their free newsletter with lots of useful information.