Impossible to Label: That’s Me

In Columns, Features, My Life: Straight Up with a Twist by Tashauna Swanson

Audacity Magazine Impossible

Tashauna Swanson

Editor’s note: Tashauna’s post will be filed under the name of her column . She was a contributor to Audacity Magazine many years ago so it is only fitting that it goes there.

My name is Tashauna, or “T,” and I am from rural Southwest Minnesota.

My disability is muscular,

sort of like Muscular Dystrophy. The general term applied to it is Chronic Muscular Myopathy even though an official diagnosis can’t be made. I really can be considered impossible to label!

How do you describe the city/town in which you live in with regard to access for the physically disabled community?

I would describe the town in rural that I live in as pretty accessible. I rarely run into a situation where I cannot get into a public building. My town is a rural, college town of a little over 13,000 people not counting the students that are here for college during the school year. The college here is described as being extremely accessible and includes a very good Learning Resources Department that provides an array of accommodations for whatever needs a person might have (note takers, test proctors, accessible technology, etc). Additionally, there are a few home care companies in the area to choose from for anyone who may need nursing or PCA services. I grew up in another community nearby, but have lived here since I went to college in 2001. I’d say this area is lucky for its size to be as accessible and have as many resources as it does!

As a person with a physical disability, what’s your biggest peeve from the non- disabled community?

Can I tell you two? Haha! First off, I can’t stand when people talk to me as if I am a child. Their voice gets louder, they enunciate slightly better, they slow down what they say. Strangers have done it, family has done it…I am 32 years old! I have a college degree. I can get a decent score on Jeopardy most of the time. Inside my head I want to respond in some kind of witty, cocky, sharp way, but I usually try to ignore how I am being talked to (being cocky really isn’t in my nature anyway). I have never understood why people do this. This is tied with my peeve of people just being rude in general. I feel over time that society has increasingly become more rude and inconsiderate. A simple “excuse me,” or “I’m sorry,” goes a long way.

What was the best part of your childhood? What was the worse part? Did it have anything to do with your physical disability?

My parents were the best part of my childhood–and still are the best part of my life. I wasn’t a sheltered kid; my parents wanted me to be aware of what the world was about so throughout life I could make educated choices and handle various situations. They taught me how to be a good human being. I always am supported by their encouragement and they are always there for me.

The worst part of my childhood was being excluded from doing things with my peers. I had some good friends growing up, but yet I wasn’t included in a lot of things they did. I walked until I was about ten years old. I remember going to a few birthday parties when I was really young, but as I got weaker and my friends began to have sleepovers, I wasn’t invited. I think I spent quite a bit of high school in a cloud of frustration which led to some fights and misunderstandings. But what do we know in high school anyway? When you get older, you realize those years weren’t that important and you move on to totally different things.

What’s your greatest strength? How are you using it to make your life better?

I think my greatest strength has simply been to keep my life in a mostly optimistic perspective. We all have low moments, but knowing that life can always be worse, and having a sense of humor through stressful situations really makes a difference.

In 2008, I nearly lost my life to aspiration pneumonia. I stopped breathing and was air lifted to a larger hospital where I underwent surgery to repair my damaged trachea after a few intubation attempts gone wrong, and to insert a trach tube. Doctors there told my parents I might have brain damage, would never talk, breathe, eat, drink, or live in my own home again if I survived. When I woke up, my mom told me what happened…and then I dropped the F-bomb (okay, I mouthed it). Clearly, no brain damage! Somewhere inside of me I knew I’d be just fine.

What really got me was one of the doctors bombarding me with all of the “professional predictions” they had for me–while I was alone. It might be the professional thing to do in order to inform the patient of the negative outcomes, but really, who wants to hear that? Doctors make bad judgments too. I don’t think they can see the future. This woman had no idea what I was capable of. She even insinuated that if I couldn’t do the things she listed, there would be no quality of life. She clearly doesn’t understand my opinion of life very well. I don’t give in to that nonsense. I was out of that hospital in two months doing everything I was told I may never be able to do again. It’s because I was optimistic (and didn’t believe her), that I healed and got through it.

So, her smarty pants self can eat her words!

What’s your greatest weakness? How are you working on improving it?

I have always been way too introverted and this does hold me back socially. It is hard for me to approach people, but if they approach me I am open to conversation. I am also not that great with small talk. I feel more comfortable when the subject matter gets a bit more in depth than making comments about the weather.

Um, how am I improving it? Well, I guess I am working on meeting more people online. Over the past few years my introversion somehow wheedled its way into the online realm too! I have been starting to get into blogging, so that is a tool I am hoping will help me. Also, I try socializing in the virtual world of Second Life. I have some friends there I have known for years so that is another tool as well.

What’s your thought process when obstacles get in your way?

First, I wonder who I need to yell at to get it out of the way! Kidding! Really though, I assess the situation. I don’t flip out about it until I know what can or can’t be done. Sure, I may get annoyed because these things don’t make life any easier, but until you know if nothing can be done, you shouldn’t sweat it!

What do you do for fun? Tell us what a typical day in your life is like.

I have a crazy schedule by most people’s standards, unless you work a night shift somewhere! I am a night owl, and stay up way into the early AM usually. I get up around noon, have some tea, check email and social media before getting ready for the day. I then eat a little something before getting back online. At that time I might work on tweaking the blog I am trying to get started, read a book, watch some Netflix or YouTube (I watch a lot of tech videos, product reviews, and tutorials), work on clothing designs for the virtual world of Second Life, take online classes, chat, search new recipes to make, get groceries, sit out on my patio with my dog…my days vary! I usually experiment with new recipes at supper time, then the rest of the night I do most of the things I already listed.

What are your favorite websites for people with physical disabilities?

New Mobility and Audacity Magazine!

What long-term goals are you working on achieving? If you are not working on them, is there a reason?

I would like to possibly make blogging a part time job (or have a cool part time job in general). I am trying to get started and be more focused on it than I was when I first tried it. It is scary in a couple of ways because I feel like I had lost my writer’s voice. When you don’t feel like yourself, it is hard to be confident in what you do. I also need assistance with taking photos and cooking if I plan on doing posts like that. I had to get over not being able to do everything myself in order to blog the content I want to produce.

Also, if you are on SSI you will understand a bit of the fear that comes with working as well. When you have health that can be unpredictable, you don’t want to be without SSI to fall back on if you can’t work. However, what a person gets with SSI isn’t really that much so you want to work to earn a little extra. We only get one life, so I want to be able to earn money to travel and enjoy the things I like. SSI is a double edged sword—it keeps us able to live life, but not as fully as we might want.

So tell us, what’s your story?

My story…I am truly unique. Everyone is, but I say this about myself because I have never really been a textbook case with anything in my life. I have no definitive diagnosis, and it doesn’t bother me to be without an official label. I don’t need anyone to give me a life expectancy, or tell me what they think will happen. I will be me no matter what I have and my days will unfold how they are meant to unfold. I just want to enjoy life while I can, try to have a good attitude along the way, and find satisfaction in simple things.

Please include any social media sites you would like others to know that are yours.

My blog: Rangeelichick

Twitter: @rangeelichick

If you’d like to read some of Tashauna’s articles, check out her column, My Life: Straight Up with a Twist! Comment and share with your community.