(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.

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!

The last moon

Tonight is the last full moon of 2016.

For me, that’s a time of reflection and to see how far I have come this past year. I’m honestly sure the distance I’ve traveled cannot be measured in miles, time, or a length of unit I’m familiar with. This year has seen so much interpersonal and professional growth in multiple forms. At most times, I was not fully navigating my course but instead holding on for the ride. And what a splendid ride it was.

Most recently I arrived back home from a trip to Iceland by myself. It was a beautiful country with lots of adventures around every corner. I’ll be working on some “Autistic Abroad” posts in the future based on some of my observations and accommodations. I do love to travel and sometimes need a “proper adventure” where the entire day is up to you with no obligations at all.

As I prepare myself for 2017, I do it quite simply with a little notebook. It’s the same notebook I’ve had for years and it is only written in every few months. It’s a combination of goal book, dream journal, and road map to success. It’s where I very carefully plan out the things I want to accomplish. I say very carefully because, as I’ve proven to myself countless times, when I have my mind set to something there is nothing in the world that can truly stop me.

So here I will sit under the winter moon and plan for my future. I’ll be looking at performing, teaching, and presenting. Those are the three professional areas I’m looking to develop. There will be lots of overlap and other things may arise, but it’s good to begin to have a solid plan. My interpersonal developmental goals revolve around health/wellness, relationships, exploration, and self-care. I’ve begun to learn the valuable importance this year of not working too hard and I plan to improve on that in the coming year. Exploration refers to learning new skills, like cheese making and welding, or recovering some old ones like working on my French skills.

People make resolutions once a year, but honestly anytime is a good time to reflect and look for improvements. I’ve already actively begun to reshape things for myself and am look forward to what 2017 can bring me with a clear focus.

Airport misadventures

So this past week I was at OCALICON in Columbus, Ohio. It was a few very busy days and long hours, which is why the posts were missing. I will say, if you want to see what I was up to head on over to my Facebook Page to get a quick video at http://Http://www.facebook.com/ARoadToMe . More will be updated from this past week and I’ll be talking about some next steps and offerings.

Now for my current state. I’m working on my 4th (or 5th) bowl of soup in the United Club of Newark Airport. I’ve been here since about 9:30am. My flights started at 7:40 am. The past 9 hours have been spent in various states of panic, fear, resignation, and about a half hour of elation as I watched the most recent episode of Speechless. There is finally hope as I am going to be on a flight this evening back to Maine.

I know Maine is totally out of the way and many people forget we exist, but there should be more flights there.

The big question many people have been asking me as I’ve been relating my saga on my social media is “How am I doing?”  Truthfully, I’m hanging on by a chocolate pretzel. I’ve spun my Levitation wand until my shoulders are sore and my fingers are not cooperating. I’m anxious, restless, and tired beyond belief. I can’t focus enough to read anything complicated. Even my new default to relax myself, playing Civilization 5 on my computer, is unable to help me. More than anything I want to be somewhere dimly lit so I can sleep. It’s getting to that sensory point where my sense of hearing is extremely heightened and certain smells will cause horrible reactions.

Translation: I’m hitting critical mass.

This is why I am doing my best to eat well, hydrate, and am constantly listening to some form of music.

My only solace is that before I hit my critical limit I had most of my upcoming trip planned and thankfully took notes.

Now I’m needing to only watch TV as even writing this took a large amount of energy and many uses of spell check.

What has the year brought?

As we can see, life tends to get in my way about as much as I get in my own way. Maybe a post a day is a little much for me, but I will continue to try. Trying does count in my world.

The prompt for today is about how 2016 has been for me. Overall, this year has been a complete roller coaster.

I started the year very unsure of myself and my abilities. I’m ending the year as a leader in the local Flow Arts community working with larger organizations to make significant improvements.

I think the greatest thing this year as brought me is confidence. Confidence in my skills and confidence in myself to take care of whatever life throws my way. Even this past weekend a conversation with a dear friend helped promote my confidence and allowed me to see myself in a different light. Confidence is one of those things I’ve always thought is “fake it till you make it” and in some ways I have made it.

2016 has most importantly brought me the chance to try out different things to see what I like. Truthfully, I enjoy a quiet lifestyle. Nights spent with close friends watching movies is preferred over going out to noisy clubs. I’m learning to slow down more and I hope to carry the skill of mindfulness into the future year.

Hopeful views through the windows

I’m coming off of working a combined 30 hours worth of shifts over the past 36 hours. I strongly debated putting up a draft blog I’ve been working on, but made the commitment to write a post every day so I’ll do it.

Like almost everyone in America, the past day has been saturated with coverage of the election. Both local and national elections have sparked huge division among friends, colleagues, and even family members. Through the magic of social media, we’ve all been given windows into each other’s microcosms to see how people deal with certain issues. For many on my Facebook feed, a Trump election was not only not foreseen but brings with it a sense of fear. Yes, many people have been making it very know they are afraid because of their skin color, their disability, their heritage, their religion, or even who they love. Although it use to be a low-stress mind clearing activity between work sessions, browsing social media today left me more connected to some friends I don’t often communicate with and with different perspectives.

There were people who posted snippets of conversations they overheard on the streets dripping with hate speech.

There were people who expressed their pride in their heritage and stated they would refuse to hide.

There were people who stated their political goals in hopes of continuing to be the voice of change into the future.

There were posts of people who wanted to know what messages or life lessons they needed to tell/promote to the young white males of America they had the chance to connect with.

There were people who announced their spontaneous wedding plans for next weekend because they don’t know if same sex marriage will be allowed under the future president and couldn’t imagine not being with the person they love.

I think, at least on some level, we all knew the results from this election would change things. I don’t think we fully understand the grasp of what the change would be and I don’t think we will completely understand until after January 20th. I do think we are already witnessing a change in people who want to help create a world for the future generations to be proud of. Change is coming and there are things we each can do to help make our voices heard. Voting helps to make our voice known in one fashion, but there are so many more ways we can promote activism in our daily lives.


When I was in college, I went to school in Iowa. During the 2008 election Iowa was a caucus state which resulted in politicians visiting us all the time. Going to a small liberal arts school, these speaking engagements were often very personal as our space was reasonably small. The biggest thing I still remember from when Obama came to spoke was his message of Hope. He spoke of the Hope of the people and the Hope we had for the future. I, and many of my friends, still have a Hope. We hope to continue to marry who we love, to access medical care, to have opportunities not predetermined on where we were born or the color of our skin, and hope for the future. We can choose to act as a catalyst for change if we unite, yes ALL of us, and work hard. It won’t be easy, but truthfully nothing ever is.

“Hope is not blind optimism. It’s not ignoring the enormity of the task ahead or the roadblocks that stand in our path. It’s not sitting on the sidelines or shirking from a fight. Hope is that thing inside us that insists, despite all evidence to the contrary, that something better awaits us if we have the courage to reach for it, and to work for it, and to fight for it. Hope is the belief that destiny will not be written for us, but by us, by the men and women who are not content to settle for the world as it is, who have the courage to remake the world as it should be.”

Barack Obama

One thing different

The writing prompt for today’s blog seemed like an interesting one so I decided to use it as a jumping off point.

The prompt given was “If you could relive one moment in your life, what would it be and why?”

For me, there are many moments in time I can now tell changed things on a larger scale than I could have ever imagined. To be a dork for a second, it’s very much like a episode of Doctor Who entitled “Turn Left” in which the protagonist discovers the fate of the universe was completely altered one day when she decided to talk a left turn instead of a right turn while driving. In that same vane, it was the smallest moments that have made the most difference for me. As per usual, the significance of these moments went by almost unnoticed until much later with lots of reflection. At the time I did what my heart told me to do given the information I had at the time.

My biggest issues have always been relating to sacrificing my own comfort for the sake of appeasing others. I’ll put myself second in order to try to maintain relationships because I, foolishly thought, if I didn’t do things correctly people wouldn’t be friends with me. It has taken way too long for me to realize some people don’t deserve my friendship. There are, unfortunately, some people who will use good people because of interpersonal issues they have. There’s nothing wrong with me and it’s nothing I can change, so the healthiest thing is to keep my distance. Can you tell I’m been a series of unhealthy relationships?

I think the past year or so has given me a distance from some of my more recent trauma to more clearly examine some of the warning signs in order to prevent similar things happening in the future. I’m a person who has been systematically abused by friends, educators, people in positions of authority, and family members which wore me down for so long. It’s only since reclaiming my power by embracing authenticity have things changed for me. So my answer to this prompt is one I’ve recently been promoting to some of my younger friends.

Boundaries are healthy. If someone feels your boundary is restricting their behavior, especially towards you, it’s because they most likely have been violating your boundaries all along.

The moment itself is burned in my memories, but the edges have become softer with time. Like most burns, after time the pain lessens and there may remain a scar in the place of the trauma. The scar in my mind is the voice trapped in my throat wanting to say “No. I don’t deserve to be treated this way.” That moment in time has long since past with the other participants most likely not even remembering it. The significance however is not lost on me in those frozen moments. Since I was unable to use my voice then, I choose to use my voice now to help those who have trouble speaking for themselves. No one should have to go through what I went through and no one should be treated so poorly in their own home. I think home should be a safe haven from the rocky outside world.

Would anything have really changed back then if I had been able to speak up? Honestly, I highly doubt it. Things would have reached their natural conclusions in time and it’s possible friendships would have been maintained, but I don’t feel those people deserve my friendship for how they treated me. I’ve had someone ask me how one of the parties is and truthfully I haven’t spoken to them in over a year. It’s sad when people you thought you’d always be friends with are no longer part of your life, but there is a plus side. It does make room in your life and your heart for those who do care about you.

What seems to bring you in?

So my newest adventure in employment is a very interesting one. It stated a few weeks ago when I found a flyer at a local art gallery looking for standardized patients at the local university. Taking a tap, I forgot about it for a few days until cleaning out my purse. Again, I saw the information and decided to put in an email asking what it was all about. It turns out, it’s a very interesting program.

There’s a medical program at a nearby university that uses people in the community to demonstrate medical cases in order to provide doctoral students the chance to work on their bedside skills. Today was my second day orientating as we talked about communicating and did some role playing. Going into this job opportunity, I new I’d be bringing a difference  perspective to the entire activity as I pick up on different things in a social interaction. I’ve also been, unfortunately, on the receiving end of doctors who don’t really want to listen to me or who think I’m making things up.

As a disabled woman, I’ve had to learn the hard way how to navigate medical situations so I am taken seriously. Those pain scales never made sense to me and since communication can be a strain at some times, communicating complicated information such as infrequent radiating pain gets even more difficult. Medical attention while being disabled is a very complicated issue because we cannot be viewed separately from our disabilities and sometimes accommodations need to be made for us. Pre-planning for meetings and getting detailed notes from the meetings are especially important for us to remain on the same page as our medical team.  I know of some women who are in their 20’s who have never had a well woman checkup because of their sensory needs and that’s scary.

Some of us also have entire medical teams who need to remain in communication in order to properly follow a treatment plan. Every few months I have to take a day or so to call everyone and let them know what is going on and who they need to talk to. This year was the first year I had my own insurance and that adds a WHOLE new level of complicated communication. I still struggle with my health and I know it’s going to be an ongoing issue for me so it is very important I have a team working with me who understands all my needs. Unfortunately, as I may be finding out again, finding new people who fit in well with your team is not an easy process at all.

Be Prepared

For me, the biggest challenge in my life comes down to a lack of preparation. Sometimes I underestimate how long things will take. Other times I overestimate my energy level going into a busy week. Over the past few months, taking Sundays to prepare for the busy work week has saved me time and energy in the long run. It’s become part of my mantra of “self-care Sunday”. Now with the time change making the evening darker sooner, I’m getting firmly into my hibernation mode which gives me more time to relax.

Meal preparation for the week has been my downfall in the past. It has lead to unhealthy eating choices and spending money I don’t really have. My new every-other Tuesday work schedule involves me working 10am to 5pm and then 6pm to 8am. Yes… you read that correctly. So this means I need to be able to eat healthy while not spending too much time the day of getting food ready. The theme of this week is “salads” because I’ve been craving a good hearty salad. Almost everything is chopped up in containers waiting for me to combine things when I want. Tupperware containers are so much of a lifesaver I can’t even rave about them enough.

The other big preparation thing for me going into the busy week is cleaning my space up before things get hectic. Laundry is all done and now I just need to fold things. Normally clothing waits to be folded for a LONG time until it begins to form sentience, but not this week. My personal space tends to be a reflection of my inner mind so during hectic times things get really messy. A way for me to address that is taking care of the already existing mess while trying to instill some order to things. Things will still get messy, this is a fact of life, however learning how to maintain and equilibrium of mess is important. Mess is like energy, it is neither created nor destroyed; it only changes shape.

I’ll be off to OCALI Conference in Ohio next week so I’m focusing on finishing up my poster presentation this week and getting everything in order.

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.