Category Archives: Life

(Self) Awareness

I remember sitting in the brightly lit room talking to my new Primary Care Physician (PCP). After a very negative experience with my previous provider, I had waited months to meet with this new doctor who came highly recommended. My hopes were being pinned to a white lab coat of a  person I hadn’t yet met, but a doctor who everyone said ” truly understands” and doesn’t judge. Since my last doctor wasn’t able to even address my disabilities or how they impacted me there was still nervous apprehension.

 

I talked about the challenges of being able to care for myself lately and how I felt like a failure for not being able to work as much as my non-disabled peers.

“Your worth is not measured in the ability to work an arbitrary number of hours per week,” was her first response to me.

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The biggest thing I’ve been struggling with is being kind to myself.  I am aware I hold myself to higher standards than anyone else does and I don’t even hold others to the standards I make for myself. That’s an issue I’ve even faced with this blog. There are times when content does not come out because it’s not “perfect”, yet “perfect” is an illusion. Especially to an artist like myself.

 

There’s still a huge amount of internalized ableism that comes from being “passing” as not disabled and not receiving the appropriate services at a younger age. There’s a pressure, mainly ones we place on ourselves, to meet the same milestones at the same time as our peers or do things the way they do. The harm of using functioning labels is one that has been addressed multiple times by my peers. Those considered “lower functioning” have their strengths ignored while those “higher functioning” have their challenges ignored. This is a very real problem facing our disability community and one that advocates are trying to address.

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2017 has not been an easy year so far by any stretch, but it has also already been an amazing experience. The only way for me to move forward and continue to thrive is to chip away at what has not been working. Sometimes we need to dig up the foundations in order to make the building more solid. Being kind and putting myself first is one of the ways I can start to take better care of myself.

Big thoughts on a blank page

I miss your blog.
You should write more.
You have so much to say.

I need to hold onto those statements by friends and colleagues as I, as well as many others, get occasionally trapped thinking we are impostors. I see this happen to many of my artistic friends and it’s only when we allow ourselves to be authentic do we get to the places we need to go or the results we are seeking. There are so many people in the disability field with different voices, yet each of us has a different story unique to ourselves. Our triumphs, tribulations, strengths, flaws, and so many other pieces are what provides the whole picture. I get stuck in my head at times and as entertaining as it is there, it’s important for me to connect with others. It’s important to remind myself my flaws are part of my whole picture.

I do have something to say.
My voice can impact change.
The fact that I can’t fold my own laundry in a timely fashion has no impact on my ability to help others.

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For those of you who’ve seen this website before you may realize I’ve tweaked it a bit and will be doing some more soon. I’ve also been silent here because it’s taken time getting all my ducks in a row as my dreams are becoming a reality. This fall, I am beginning to offer movement classes for children and adults in the Southern Maine area. Although the intention is for these classes to geared towards the disability community, all are welcomed to attend. The dates, times, and signups will be on this site and my FaceBook page when they become public.

I’ve also begun the first baby steps of creating a non profit on this same area. The Way We Move, based on the title of the Fringe Show I created this past spring, will work to create accessible Movement and Arts programs, performances, and eventually an artistic vocational track. Although the base of operations will be in Maine, there is already interest in bringing this to Colorado, Chicago, and other places around the country.

Right now, I’m currently teach the 3 week Film Camp at S.P.E.A.K.S. for the third year in a row. It’s so wonderful here and the campers are all great. We have already filmed our commercials and this week are creating great group films on the theme of Nature. Some of these kids have been in the camp for all 3 years and to see how they have grown into themselves is wonderful. I was lucky enough to have an artistic mother who supported me and I’m so happy these campers can embrace the arts in their own ways.

What would you do?

There is a question I ask friends who come to me with existential questions about their life.

“If money was no object, what would you wake up every day and do?”

Today I got a rejection letter for a job I applied for. It actually was my first job rejection and for that I am grateful. A part of me knew I may not get it, but there was a sting at a different level in the e-mail. It hurt me because I almost threw away everything I’ve been building.

My job as an in-home support worker can be tough at times, but it is one of the most rewarding things I have ever been a part of. During the summer, I also have the privilege to teach a film camp with members of the autism community. Things are going very well for me with performing and, weather permitting, I have a few gigs already booked for this year.

I applied to the job on a whim. The pay wasn’t the best and it would have meant I would have needed to give up some of the travel and conferences already planned for this year. It’s also not a job I would have stayed in for the rest of my life.

After getting the rejection email, I had a conference call about the online classes, arranged another conference call for an upcoming writing project, and finished a posting for a class. Soon, I’ll work on playing with my levi-wand and filming myself for a short fan video.

It takes some perspective to remember I’m not interested in the 9-5 life. A life of adventure is more my speed. Next month is my birthday and I am gifting myself a tattoo which is a very fitting reminder. It’s the phrase Hannibal said while crossing the Alps and it’s also a quote on my business cards.

Aut inveniam viam aut faciam
I will find a way or make one.

Show me and Grow Me

 I’ve already begun to think about a presentation I am doing at OCALI this year. It is a poster presentation (SPOILERS: It’ll be interactive!!!) about How to Grow A Healthy Person. I made it not only Autism-centric because one thing I’ve learned is what works for one person can work for many.

I have a plant named Henrietta, I’ve mentioned her before. Some people may also know I’ve been growing lots of things this summer, or trying to at least, with mixed results. Being the Garden Witch and going traveling leaves (hehe) my babies anxious. Coming back in August, I had to do some serious Tender Leafy Care to see what could be saved. I grew a potato! For those who don’t think that is impressive, my relatives struggled with growing potatoes  in Ireland a while ago and they were much better at gardening than I am.

My proudest thing right now is of this, my Lemon Balm. I only really identified it yesterday because it was not labeled. It was not labeled because when I first planted it, it did not look like things were going to make it. Growing thriving plants from seeds is difficult for even experienced gardeners at times and this is seriously the first time I have tried to grow things. As a child, my mother would have a section of the garden which was mine and I know if she had not watered it it would have been mulch. 

You can never see how tall our plants will grow until they are finished growing. We never know how mighty we will grow until we are given the chance to fully thrive. If I had given up on this little cutie, I never would have seen him bloom. It just wasn’t his time to spring up until I got back. He waited for me and knew I needed to see him. We needed each other.

In some cultures, Lemon Balm represents the balance of Yin and Yang energies. We cannot fully have the light if we do not know the darkness. From the little seed I planted, he is almost all that remains of the original 200+ seedlings in April. He is the balance I needed to show me I have done good. I have brought life into this world. Hearing so much negativity, anger, hostility, gossip and pain causes me to falter. It would make anyone question what is real and what are just hushed stories people tell each other.

I know what is real.
This lemon balm is real.

It takes time.

I want to be social… but I’m not really social all the time

This weekend I went to preform at an amazing festival. It was filled with amazing and friendly people. I love these types of events, but after my Month of Autism (as July of this year shall now be known as) I was getting very quickly overwhelmed with people.

At the Autism events I went to, going up to someone and saying “nice bracelet” or exchanging random quotes from obscure movies can establish a friendship. When people were nice to my face,  I had no reason to believe they were not being nice behind my back. My hearing senses can get turned up and I heard people making snap judgements about me and my friends. Not cool.

Since I wanted to be social and had to take responsibility to pull myself out of a funk, I made up my mind to have fun. In my little cave of Brigid (also known as my tent) I regrouped, regulated, and headed out to socialize.

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I’ve talked about spinning, or flow arts, quite a bit lately and I don’t know if I’ve communicated it clearly. By finding spinning, I’ve found a part of myself. Even surrounded by people who I don’t know, it was comforting to be known as “The Fire-spinner”. I can spin things and relax in a way I’ve never done before. I had the opportunity to meet amazing fire spinners this weekend who elevate the art to a level I wish to one day achieve, and they complimented me on my spinning.

After a very stressful social encounter last month with someone who retracted a huge Autism leadership opportunity because I don’t fit in with their value system, I must admit I felt crushed. It caused me to doubt myself, my values, and my mission in life.

My mission is to spread happiness.

Spending some time surrounded by loving and friendly people, I realized I need to remember to love myself. The path I’ve walked is one that could only have been walked by me. It takes a lot out of me sometimes just to be me, but I’m proud of everything I’ve done. I can be social doing the things I love as long as I don’t let the negative people affect me. There will always be negative people around me, I just need to shrug it off.

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When people ask me how their child or adult can be social, I often want to talk directly to the person and not about them. All people have their own comfort bubble and for some people we like to talk about our special interests. My special interests are movies, autism, animals, and flow arts. I’ve talked to people who like dirt, cars, architecture, and very many different things.

Being social can sometimes be a challenge. It can be scary, intimidating, and very anxious. However, the rewards far outweigh the stress. I met a lot of amazing people and I am really excited to get to know my new friends even better and share our successes with each other.

From the Whispers

I’ll readily admit I’ve been missing online most of this month. It has both been a conscious effort and an unintentional consequence of anxiety.

As far as things go, I will say it has not been a slow month in any respect for me. I’ve gotten so big news and am proud to share it with all you lovely people. I’ve been accepted to speak at TWO (2) separate conferences this summer into fall. I’ll be at AACC (Association for Autistic Community Conference) and at OCALICON (Ohio Center for Low Incidence and Autism Conference).

I’ve also been busy spinning fire and getting back into the swing of grad school. I’ll be bringing back a lot more to this blog (including some guest bloggers) in future weeks as I’ll be getting ready for an epic summer.

For more information on my AACC presentation, check out the link below!
http://autisticcommunity.org/2014/05/04/aacc-2014-presenter-list/

The Grieving Archeologist

This is the hardest week of the year for me. This is the week where as hard as I try, the creeping depression looms its head. Depression zaps my energy and steals time I would rather be spending working or hanging out with people. This also bites because this week always is always before my birthday and prevents me from looking forward to it. On March 2nd 2005, I sustained a Traumatic Brain Injury that stole my life from me. Not only did I have months of occupational therapy, physical therapy, medical issues, and no support from my school; I lost my memories.

Yes. Everything in my life before March 2nd in 2005 is now lumped as the scattered images in my head. School years, friends, major life events are all blurred together with no real details and only vague shapes of space where things may fit.

I lost it all.

When things first happened, people thought I was exaggerating. Even now, people don’t understand and can’t wrap their heads around the idea. I looked the same, but there were things I didn’t know or didn’t know that I didn’t know. Even know, I’m never going to know everything I’ve missed. I’ve spent the past few years relearning everyone other people learn in grade school about the world around them and I still have more to learn. It’s not like there is a checklist I could go through for memories and see if things are there. Some memories I glimpse scattered in dreams and others take a random trigger to get a peek at what once was.

There sits in my room, wherever that may be in the world, a small box. In this box there are notes and letters and photographs. When my family had to leave our last house, we couldn’t take everything. Most of my childhood drawings, photos, and childhood memories were left and destroyed in the house. In some ways it makes it easier to have my old life confined to the size of a shoebox.

This time of year I take out the box and try to look through things; searching for who I once was.

Like any good anthropologist, I look at the clues and try to make connections based on what is in-front of me and the resources at my disposal. I look at pictures of a little blonde girl playing with some friends and I don’t know who they are or where the picture was taken. Guess can be made, but finding the answers of names or places only gives small details of the story of her life. Was she happy that day? Were these her close friends? Why was she there that day with those people? These are just some of the eternally unanswered questions about the life I use to have.

My accident came 8 days before my 16th birthday and my birthday was spent in a full body CAT scan. When other people celebrate the life they have had on their birthday, I spent mine in unimaginable pain. This year I turn 25 years old, a quarter of a century, and I only remember the last 9 years. People tell me how young I am and my only response to them is “you have no idea.”

It is true, I still grieve for the life I’ll never remember. For years after my injury, I spent my time just trying to survive while hiding the emotional and physical pain I felt. It was only after asking those people who knew me both before and after the injury did I realize what was truly lost. My middle-school and high-school career was filled with anxiety and being bullied. I lived in a home more like a warzone where I was hostage to an abuser others denied existed. My self-esteem was crushed and I felt hopeless in my life many days.

 I can’t leave this post on a negative note, lest you think I dislike the life I have now.

I’ve been told after my injury, I became “Brigid” again. I once again became the strong blonde girl who didn’t let bullies hurt others, who cares about people she may never meet again, who stands up for what she believes in even if she stand alone, and I’ve found the happiness years of abuse from many people took away from me. It’s true I have remembered some of the worst things that happened to me, but it never feels like it was me living those moments. It was all just a girl who looked like me and shared my name. I’ve become stronger because I the things I’ve had to live through have helped make me this way when I didn’t let them break me.

This is the hardest post I’ve written and tears have been streaming down my face the whole time. Part of the reason I write so much now is an ingrown fear I’ll forget. I want a record of my life somewhere because I am missing 16 years of records. Thank you all for joining me on this journey and I am very hopeful of what is next for me. Not everyone gets a second chance to lead their life and I work hard to never feel like I’m wasting a second.

I’m Brigid 2.0: the new and improved version. (Now with 2 Birthday Cakes)