I'm not (completely) coming back

Before this trip I'm on now, I've spent the past few months working 60+ hour weeks to keep my head above water and afford this month away from home.

I'm not going back to that.

There are literally not enough hours in the day to get all the work done as well as take care of myself and plan for my future. Certain things, like my health and projects I've wanted to do, were put on hold as I simply put one foot in front of the other. This trip was the light at the end of the tunnel and there is no way I plan to go back into the darkness.

I've been offered a few jobs that will allow me to work smarter, not harder. These opportunities are based on my skill set, experience in the autism field, and my passion of helping others. I'll be able to continue living the life I have, but with "free time" and even *gasp* weekends off. Yes, the concept of a 'day off' is something that has eluded me for the past 2 years. I'm so happy that I'll also be able to put time and energy into creating the movement based programing. Hey, I'll actually have energy!

I realized the life I had been leading was nothing I could maintain after sleeping an average of 14 hours a day all last week. It also wasn't making me fully happy. In many ways, I was going through the motions because it was easier than trying to change things in the midst of chaos. Colorado gave me the must needed distance to look at my priorities and how to achieve those.

The other thing that needs to change, which I was told about by my friends on multiple occasions, is I need to start valuing myself. I work really hard, I help others, and I do a bunch of really awesome things with my life. It takes energy to to these things and in some ways my humility of thinking "well, anyone would do what I do" has gotten me into trouble. It's lead to people taking advantage of me and has put an unhealthy reliance on external validation.

It's not about comparing my own personal achievements to those of anyone else, it's that standing alone my life speaks volumes. For too many years people told me I can't do things or things would never be possible for me. I've ingrained some of those thoughts and it's time I realize I've proven them, and more importantly myself, wrong. I'm strong, powerful, and talented.

It's time I remember who I am as I work towards the bright future.

Me and my people

Currently, I'm relaxing in Boulder and doing my best to figure out the next steps of this wacky thing called 'life'. The greatest part of all this is I'm surrounded by one of my mentors and still feeling the effects of the Autism Society of America conference.

The joke came up several times last week about how several of us go to the Autism Society of America conference to be social. It's a once a year trip most of us make to unite us from across the country. Navigating the whirlwind of meetings and presentations, either giving or attending, we still manage to reconnect in the hallways or in the evening.

On the last night of the conference, what was only going to be a brief dinner with an old friend and my mother turned into something so much better. It started by inviting new friends to join us. That quickly turned to other friends showing up and soon we were taking over a large section of comfy couches. The evening was spent talking about everything as we watched lightning dance across the Denver skyline.

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That last night before the end of the conference, I was stressed and very nervous about my early morning presentation looming the next morning. My topic for the Sisterhood of the Spectrum panel was "Authenticity". At 8:30 in the morning, still adjusting to Mountain Standard Time compared to Eastern Standard Time, I would speak about the importance of embracing who you are and knowing others have walked the similar path.

One of the greatest things I have come to understand and accept is that I have people in my life who truly care about me. There are people in the world who genuinely want to support others and wish the best for them. I am one of those people and am very thankful for being surrounded by the same type of people. My people are kind and care about each other. This is something very special I was able to be reminded of at the conference.

Sometimes the best parts of the conference are not covered in the program guide.

Anatomy of a meltdown

A child's resting heartbeat can be as low as 60 beats per minute.

One of my earliest medical memories is standing in a cold white room learning how to attach electrodes to my skin with words like ”heart defect ” hanging in the air. Doctors had no idea how a young child could go from a very low resting heart rate to over 240 beats per minute while simply sitting in a chair. Walking across the room at home, I'd simply drop to the ground with pain shooting up my left arm. This happened seemingly randomly and later on these carried the simple label of "panic attack" so it was just a part of my life. This was years before my Autism diagnosis when I was simply referred to then as a "hypersensitive child".

As I grew up, these panic attacks began to take a shape and a clear pattern emerged.

The word meltdown sometimes gets thrown around with people thinking it is equivalent to a temper tantrum. That could not be more wrong. Children (and adults) throw tantrums to get something. Meltdowns are your body's way of saying it is overloaded. The human body is capable of taking in millions of pieces of sensory information a day, however there is a limit. This limit changes based on a myriad of variables and can be different from day to day.

Even years later, I'm still trying to figure out my warning signs of a meltdown before I'm in one. The biggest warning sign I've been trying to push past is exhaustion. It doesn't matter if I eat well, hydrate, am in limited physical pain, or anything else as there is a clear tipping point for me. The tipping point is related to my Achilles's heel.

Social skills.

I've spent my entire life trying to study social skills through movies, TV shows, books, observation, and imitation. Inside my head lives hundreds of social scripts for thousands of life situations other people simply experience. It's only very recently I've felt comfortable enough to build my own scripts in public or with people I don't know too well. People who do know me well have a better idea of how my mind works and know I sometimes "cycle" or repeat conversations without intending to. They also know my conversations can jump around from topic to topic seemingly randomly.

My meltdowns look like that scene in the remake of Stepford Wives when Faith Hill starts misfiring and sparking on the dancefloor. My emotions bring me to an anxiety loop where I go from calm to crying repeatedly. My left arm  stops behaving like an arm and my heart races. My hearing sharpens and so does my sense of smell. My eyes become very sensitive to light. The worst part is feeling trapped unable to speak.

My words tend to fail me and often I can only mutter "help, please help." My mind races, but perseverates on either real or imaginary flaws. It's my own personal torture and one I strive to keep behind closed doors. It's a combination of fear that has me try to hide these struggles. I am afraid of others seeing my weakness in moments where I am my most vulnerable. In these moments of being completely overwhelmed in the world, there is a thought floating in my mind that this is The End.

My meltdowns pass and I always survive, even though I never think I will at the time. When I was a kid, the heart monitor I wore would upload the recordings over the phone line once a week when it was plugged in. I would sit next to the machine for almost an hour as meltdowns were a frequent part of my life. Now they are further apart, but are still a part of who I am.

Life has struggles and everyone goes through them differently. The kindness shown to me by friends when I'm struggling with meltdowns is overwhelming to me. Even something as simple as a smile or asking if I am okay helps me. I am so thankful for having kind people in my life who understand I do get overwhelmed. I do try to hide my weaknesses, but I'm lucky enough to have people not who don't run away when they see me looking like a hot mess.

I remind myself tomorrow is always a new day and a day to try again. A meltdown one day simply means I need to change something the next day. I will survive and be stronger, personally and in my relationships with others, the next day.

Our Own Personal Fears

For those of you following the lunar cycle, you know yesterday was a full moon. I've mentioned it before but it can be repeated; I measure my life in moons. This last one was a very VERY wild ride.

Although I can freely share my business, I'm not one to disclose the crisis of those close to me in such a public venue. That's a clear boundary I have as I have had others respect my privacy for so many years. I can say, this past month has brought me closer to some people because of the fiery path they have found themselves walking. Sometimes, it really takes someone who has been burned by the flames to remind you the burn will fade into a just a scar and a story with time.

Related News: I learned how to breath fire about two weeks ago.

I've actually spent the better part of the past few weeks at Fire events in New England learning skills and hanging out with wonderful people. I've been looking forward to these intense weeks for months and with them firmly in the past (except the pile of laundry), I'm still collecting my thoughts as well as planning my next moves. These events gave me both ample time to think and not enough time to collect my thoughts. Things are still buzzing around my head as I try to coerce them to settle into an order.

This past month I confronted my own greatest fears. For the majority of the time, my fears were directly in front of my face. Mere inches separated me from both destruction and triumph. Looking at the people around me I have been faced with how far I have come and how far I have yet to go. It has taken a great amount of personal strength to muzzle my own insecurities knowing some people choose to attack others behind the safety of a keyboard and mob mentality can run rampant with a simple keystroke.

A piece of bathroom graffiti I see semi-frequently says something along the lines of "give me the strength to know the difference between my fears and your reality."

My reality has dragons, princess who ride into battle, good stories shared with friends, a place where dreams come true, people who are lift each other up to their best, and celebrations for the little things in life. My reality is beautiful.
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There was a photo taken of me the first night of my adventures. Tired and emotionally drained from the lack of sleep/chaos of the week; I knew I needed to burn my fans. Fire was my therapy. The sound, the movement, the smell, the feel; It was needed. The photo below is the best photo I've ever seen of me at peace. In this moment there were no worries or fears. It was just me completely in the flow of things with not a care in the world.
This is the state I hope to continue living in.

Photo by Brett Walker

A Road To Me: Acceptance. Love, and Self-care: #AutismPositivity2015

Fridays are normally a "social" night. However, the upcoming weeks will be breaking my brain a little bit with all the social. Starting right now, the next and last free day I'll have until June 4th is this upcoming Thursday. I'll be traveling to 4 different states for multiple events.

Yes, I'm very glad I recently purchased new tires.

I'm willing to drive hundreds of miles in the upcoming weeks with loads of social interactions and new experiences for one simple reason.

I found communities where I can be myself 100%.

My trips will take me to two major flow events. For these weekends, I can spin my props until I can't feel my hands anymore. Then I'll spin using other body parts just to keep spinning. Reconnecting with amazing people who don't flinch at my obscure pop culture references allows me to be social in my own special way. I literally get to talk about or indulge my special interests almost non-stop and it's so liberating.


I'm free to be me.

Self Love is a work in progress for me. There have been deep dark holes in my past where I didn't like myself. I fell into the spiral of negativity; which has ALWAYS been around my social interactions with people. Saying the wrong thing, doing something awkward, laughing at the wrong time, getting lost in the conversation: those little things other people never paid attention to or noticed ate me up from the inside.

Then one day I woke up and realized who I am.
I'm Brigid.
There is no one else exactly like me in the entire world.

Every day is a new change to play and explore the world around me. The first steps to fully embracing myself involve not being so judgmental or holding myself to lofty expectations. My apartment will never be spotless and my laundry will only be fully put away when it decides to communicate with me. "Perfect" is an illusion we create of some imaginary life we think we are supposed to have.

Instead of being social tonight, I'm taking it easy at home. I've defrosted a pizza and have a bottle of wine. It's an Eternal Sunshine of the Spotless Mind type of night as I get things prepared for an active weekend in front of me. Tonight needs to be restful so I'm on top of my game for this weekend. Take it easy on yourselves and treat each other well.

And maybe it's funniest of all
To think I'll die before I actually see
That I am exactly the person that I want to be

Amanda Palmer- In My Mind

Food Stamps and Ableism

I live in Maine.

Recently, our state has gotten more nationwide attention because our Governor has made statements and policy changes about the use of Food Stamps. In the past year, our state has required photo identifications on EBT (electronic benefit transfer) cards to reduce fraud. Maine has also implemented a policy requiring "able-bodied adults without dependents" to work, volunteer, or be part of a vocational training program for at least 20 hours per week in order to continue receiving food stamps. In a state with marijuana legalized for medicinal purposes, he also is trying to push for universal drug testing.  Even Fox News has described our Governor's plan as one of the "boldest welfare reforms". Governor Paul LePage has also recently issued statements about wanting to prevent EBT users from purchasing items like soda or chips.

If you have never gone through the process of applying for food stamps, I'm not sure you understand what it is like. It's not as if you walk into a building and they hand you a preloaded card with thousands of dollars and tell you to run wild. It's a process taking a minimum of months if all the bureaucratic wheels are running smoothly. You need to demonstrate your continued need for assistance by paystubs, bills, leases, ect. Even then, you may be lucky to get 17 dollars a month for a  household.

Recently, there has been a surge of "outrage" by fellow nosy shoppers who are judging what EBT users are purchasing. I have a few HUGE issues with this.

1. Why do you care what other people purchase?! (I literally NEVER notice what other people are buying in line because I always have a momentary panic thinking I forgot my wallet once I've arrived at the register.)

2. How does what anyone else chooses to put into their body affect you or your life?

3. What makes you think you know what someone's life is like based on the few moments of their life you observe reflected in the items on a conveyer belt?

Invisible disabilities exist all around us including those affecting us mentally and/or physically. I've been told I don't "look" disabled, however those wonderful employees who work at the grocery store near me may have a different opinion. Sometimes there is not the energy to cook a meal from scratch. Other times we need to get nutrients ASAP or else something not good may happen to us. Other times my sensory system will prevent me from eating anything other than a restricted number of foods.

Don't judge what people buy.
Period.
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Earlier this year I was very sick. I lost 9 pounds in just 5 days because I could not eat anything and my survival was solely based on 100% fruit juice popsicles. When I could finally stomach food, my body was craving red meat. This is a family trait and one we identify as "turning the corner" to recovery. I used my debit card for my purchase and I'm not sure if anyone noticed my payment method.

Did they see the graduate student who presents internationally on Autism and part of an award winning performance troupe?
Did they only saw the girl with the messy hair in sweatpants buying a steak and make the assumption she was a "welfare queen"?

I know they didn't see the face I made while eating my first meal in almost a week or my face as I fell asleep with a nutritious meal in my stomach, instead of with the hunger pains I know all too well.

All the Doors

After 8 months, today I walked out of therapy with no appointment for next week. We talked about my progress and acknowledged the door was always open.

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 With the warmer weather, my cats have been enjoying the sunshine. They go out in the morning and come in for food. As humans, our responsibilities are to make sure the bowls are full and open the door as needed. My cats hate closed doors. If we open it before they are ready, our furry overloads just look at us in bewilderment.

"Silly human, I don't want to go inside yet. I want to drop in this spot and have you to rub my belly"

Feline in many ways, I have trouble with some doors. When relationship doors close, for the myriad of reasons relationships end, I'm sometimes left standing there in confusion. What did I do? What didn't I do? Should I have done something differently? Is it me?! These questions and more ring through my head.

Or they use to ring through my head.

These insecurities are not unknown to other people. However, being autistic does cause me to view communication or lack of communication through a different lens. It is not just through words do we communicate so silences hanging the the air have a weight to them.

But that is not my concern anymore.

People, the people who matter to me, know I'm disabled. I've trusted them to be straightforward and honest in their interactions with me. The people who have been two-faced are people I no longer wish to associate with. It is much less painful for me to hear my actions are disruptive to someone from their own mouth than catch it on the gossip vine. I'm choosing not to live second guessing my communications and relationships any more.

That is an achievement.
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My calender is filled with color coded dates of events for May. Flipping the page reveals June is equally covered with markings. Sitting next to the front door of my apartment is gear for tomorrow's gig. I'll load things into the car later today so I'll be able to hit the road bright and early in the morning. In the next few weeks I'll be interacting with hundreds of people and showcasing my talents. It's a busy month, but plans to be very rewarding.

When one door closes, another one is always open. We just have to be brave enough to walk through it.