Category Archives: Uncategorized

Teamwork!

I met with my new PCP (Primary Care Provider) yesterday. She came highly recommended from people online and other people who had worked with her. We discussed my ongoing health issues, that’s for another post, but we also talked about my team and how she can help make things run effectively. As of right now, this is the first time in my entire life I have a fully functional “team”.

It’s always been a dream of mine to have a group of medical specialists who understand what is going on with me and can work together to help me be the best possible me. There are a lot of different parts to my health that need to be monitored and addressed, so it is really good to have people who understand some of the weirder aspects of my diagnosis like Ehlers-Danos. My current team is comprised of a Physical Therapist, Acupuncturist, Therapist, and Chiropractor. That’s a lot and averaging at least 2 appointments a week it does take a solid emphasis to keep me in working order.

I let my health slip a bit this winter and have been slowly working to try to get better and develop healthier habits so I can continue to live my life on my own terms. Things are changing in my personal life and job, but I’m very excited about the future and everything I’ve been working on. New things are being unveiled soon!

A Spectator Sport

I don’t really enjoy watching most sports. There’s something about the action that doesn’t fully engage me. Now, I have played a fair amount of sports in my life. As a tall child, I was always on Basketball teams until I realized it had lost all interest for me. Even when I was on sport teams, I would never go out of my way to watch the events and could not get too bothered to have opinions on the many teams.

However, I do like to watch people playing video games.

To me, when people play video games there’s an interactive element. Some video games really scare me and make me jump. Other games make me laugh right along with the characters. As a spectator, I do my best to also help the player by pointing out some things I’m seeing on the screen they might be missing as they are paying attention to something different. Some games are very beautiful and with the advanced graphics it can almost be like watching a movie.

I’ve also discovered as an interesting side effect that there are now conversations I can be a part of purely by watching other people play games. When I do play games, I play them on my Mac which limits the choices of what I can play. However, there are opinions I’ve gathered based on different styles of games and finding out what I enjoy watching or playing. There are so many different types of games out there and most people are very interested in sharing what they enjoy with others. So even though I may not be the most skilled video game player, it has still helped me have to conversation topics and it a very entertaining thing to watch.

Fresh Starts

So this will be my new home for the foreseeable future. My facebook page is still going to be active over Here.In fact, I hope to make that page even more active in the upcoming weeks/months.

 

I’m still adjusting to this new platform and editing this page, but I figured today was as good a day as any to do the big unveil. This site will continue to grow as I discover how to fully use this site and there will be some great things popping up here.

 

Now, I’m going to take a good solid break from business things for the rest of the day due to it being my Birthday but things will be improving here very soon.

Point and Click Social Life

When I was growing up, I played a series of computer games by a company called Purple Moon. These games were interactive social stories where the main character, Rocket, would have to navigate difficult social situations. If you made a mistake, there were options to go back and try to correct your actions. One thing I did learn, it was actually impossible in the game to make friends with everyone.

Honestly, there is no downplaying how important those games were to my development.
Now, I’m enjoying playing puzzle games and ones that are visually stunning (like Bioshock:Infinite).

I do however wish there were speech bubbles in my real life to select what to say at certain times. It’s continuing to be a combination of balancing act and detective work to figure out how to be my personal version of healthy. As some people know from personal experience, you may want to be social but not have the energy to put into the social activity. Last night I pushed myself a bit to hard after a week of physical exertion, sinus infection, and deadlines. I will say, even though I’m spending most the day in recovery mode, it was an amazing evening for a good cause.

Social skills are not my area of expertise because they are not formulaic. A friend of mine is working as a political canvasser and has a “hook” they say to try to people walking by to attract interest in signing the petitions. They see first hand the same line doesn’t work on everyone. Some people won’t respond to you, no matter how hard you try. To me, being authentic is more important than being well liked.  In life there is no “back” button, only the ability to make a different choice every second of our 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

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.

Legacy

Leonard Nimoy passed away last week and it affected so many people. He was a great man who left a positive mark on the world. Many people have reflected on what his passing means to them and how he touched their lives. I am not a “Trekie” by any stretch of the imagination, but I admired everything the man stood for.

People who knew him spoke of him as a great man who cared about others. He was kind to his fans and I do feel that is something special considering how large his fan base is. From psychology to the arts, Nimoy was a multifaceted individual who exemplified what I consider “professional”. He truely was an inspiration to me and many others.

I look at the legacy he has left behind and I’m filled with a sense of comfort. I firmly believe it is possible for one person to make a positive impact on the world. The world can be dark at times, but there are opportunities to act as a force of light to touch the lives of people. This is something I’m actively working towards and Leonard Nimoy was able to accomplish this. Even in my personal moments of confusion and hesitation, I know one person can make a difference.

Priorities bite

So this is my last semester of Graduate school. I’m taking 2 classes now and working on the incomplete class from the previous semester. All this is going on as I’m working to support myself, getting ready for a stage show, acting in a film, and doing a bunch of freelance work.

For the next couple of months, I’m going into hibernate mode to get things done.

My classes are my top priority right now, very quickly followed by the commitments I have already made.

This is easier said than done for me because I am ALWAYS looking for new things to do. I think life is too short to not enjoy yourself and I enjoy a wide variety of activities. I still plan to keep myself busy with my extra curricular, but I am making an oath (here with you all as witnesses) to not take on any more commitments.

With the way classes are going, and my extension for the incomplete class coming to an end in the next month, I need to buckle down. I’m not overly concerned about not getting everything done, it’s really just the knowledge that for the next 10 weeks I’ll be living and breathing from my laptop with breaks at work or getting food. Luckily, my Master’s thesis is on creating a Circus and Flow Arts program for Autistic individuals. This is something I’m REALLY interested in and it will be fun throwing myself into things.

Executive Functioning Failures

Executive functioning (EF) difficulties are a trademark characteristic of autism spectrum disorders. Over the past couple of weeks, my energy has been spent on taking care of me and not trying to get my EF skills in order. It’s been a struggle for me because I get so overwhelmed with what needs to be done I can’t even get started! Yup, it’s a vicious cycle.

One of the greatest things about this little trip I’m on is that I get to hit a “reset” button in a way. A change of space is exactly what I need in order to get me back on track. For me, removing myself from my comfort zone briefly shocks my system into working again. It works to place myself in a new situation and to reconnect with important people in my life.

I actually work very well under pressure. I have set aside all tomorrow to catch up on things I need to get done before OCALI this week. These things vary from school work to freelance work to personal work. It’s been very devastating for me to have fallen behind in things that mean so much to me. I absolutely love the work I do; it makes my day when I get positive feedback from my peers or students. As I’ve mentioned things related to trauma and energy levels recently, I’ve had to learn to be kind to myself.

I have always been my own worst enemy. I’ve held myself to unrealistic expectations because I don’t always accept my own limitations. One of my classmates actually wrote to me expressing her concern because we’ve been in every class together so far and she has never seen me fall behind. Her, and others close to me, know I do my best to act professionally. I may be young, but I am working on my career right now.

Tomorrow is set aside to get so much done. Yes, there is a phrase about procrastinators. No, I don’t need to be reminded of it.

100!

So I honestly did not think I was ever going to get to 100 blog posts. This is not the first blog I have done, but it is the first one I have taken very seriously. Over the past couple of months, I’ve found it as a platform to discuss important topics and connect with people from all over the world. I have learned we all share some of the same struggles regardless of disability. It is these unifying characteristics which make us all connected to each other, even if we have never met in person.

So today is also a pretty big day because I began my road trip to the Midwest to present at OCALI. This is my second year attending the conference and this will be my first time presenting. My poster presentation is not yet assembled, but there will totally be arts and crafts time here on my first leg of the journey in New York. For now, I get to enjoy the company of friends and focus on catching up on school work.

One of the great things about driving across country, yes I may be a little nuts to drive INTO a Polar Vortex, is it really gives you time to think and reflect. So my wonderful and loyal readers, I will leave you will the questions I pondered listening to podcasts and burned CDs on my first leg of my travels.

Road Ramblings:

If they really wanted to make luxury cars look fancy, they should include penguins in the advertisements. Penguins are already wearing suits and look very fancy.

Pomegranates are wonderful because you can use violence to gain access to food.

I’d imagine the first person in the world who discovered they could not eat gluten felt really left out.   

Cats may one day try to rule the world, but they would be such adorable overlords I’m not sure anyone would think they were a menace.