Inspiration of the Day: Getting Personal

Four Agreements

I saw this on my Facebook news feed mere moments ago and it practically jumped off the page and smacked me right in the face (ok, maybe a little extreme but you get the idea). I am totally and completely the queen of taking everything personally and have been for most of my life, though I like to think I’ve improved some with age…like a fine wine. When I was in high school and even college, if I walked past a group of people and they started laughing, I was sure they were laughing at my limp. I sat in the back of the classroom always so I didn’t have to worry about hearing whispers behind me and thinking they were about me.

Today this issue manifests itself in kind of a different way. When people make remarks that seem insensitive or correct me, or argue something I’ve said, I take it personally because I assume they’re doing it because they think I’m stupid (the fear of being seen as stupid is something that just completely rules my life sometimes, it’s not good). Taking stuff personally just seeps into every facet of my life in one way or another. Which is why I found this excerpt from a book I’d actually already heard about from one of my many stints with online dating so completely powerful. What an amazing way to go through life that would be; to not take anything personally. Obviously this isn’t something achievable for anyone all the time, we are human after all. But what if I could change the lens with which I view certain comments or reactions through? Instead of seeing it as something directed towards me, even if it is directed at me, at something that’s merely someone’s response because of their own fears, insecurities, background or upbringing? If I realize that in fact, it has nothing to do with me or what someone might or might not think of me.

I still think we should defend certain beliefs in life. If people didn’t do that, we wouldn’t have the Civil Rights moment, the end of segregation, or be seeing the legalization of gay marriage around the globe. But I see complete value and validity in just not letting the actions of others affect you personally. In the end, doing that is only making you miserable and I can attest to it being a truly miserable way to live sometimes. It makes it very hard to be compassionate towards yourself when you’re constantly beating yourself up because someone said this to you or that, so you wish you wouldn’t have said or done that thing.

The whole need to be right and make others wrong is a topic for a whole separate blog and I’ve been experiencing it a lot with people lately, people who I don’t think even realize they’re doing it when they constantly correct or argue with what I say, even about the simplest of things. But I guess I shouldn’t take that personally :)

What a great light bulb moment. I may just have to add this to my list of reading!

What I Don’t Accept

I know I said 2015 was going to be the year of acceptance, but after a repeat of an earlier discriminatory event at Disneyland last night (this time at California Adventure), I have a few things I’d like to share that don’t accept:

  • I don’t accept people’s ignorance of the different types of disabilities
  • I don’t accept constantly having to justify my MD, especially not to places I’m a paying customer at
  • I don’t accept that the world isn’t set up for people with disabilities…something none of us choose to be born with or affected by
  • I don’t accept the idea that a disability only looks one way
  • I don’t accept that if I had a cane, walker or wheelchair, people would believe I have a disability more often
  • I don’t accept that because of other people’s ignorance, this is something I’ll have to deal with my whole life
  • I don’t accept I constantly have to walk around waving my awareness flag just so people get it
  • I don’t accept that I (or any of us) have to get mad, hurt or upset because of some else’s ignorance
  • I don’t accept that people can’t simply pick up a book, watch TV or learn about the world on their own time to realize that people with disabilities do exist in this world and we are entitled to whatever assistance we need
  • I don’t accept that I even needed to write this blog in the first place

I’m tired of myself and others having to be an advocate for the disability and MD communities because people are too ignorant to figure it out for themselves in this country. It’s not my job to stand there and take condescension and judgement from some 20 year old girl who’s reading off her script from corporate but making sure to add talking to me like I’m stupid. I will no longer be a victim of an always changing system…a system that thinks that I’m just lying to try to get to the front of the line. I refuse to be “evaluated” by people are not doctors and I refuse to leave a place I pay to get away or to be happy at crying ever again.

I will not justify my disability to anyone even once a year. And I’m taking a break from being an activist, even if means not blogging for a while. I’m tired and I’m drained and it’s not my responsibility America or Disney to make you informed anymore. You have all the resources to be able to do it yourself. Figure it out and let me know when you have your shit together.

Friendship Revisited

I find myself struggling with the topic of friendship a lot, even at the age I’m at. I think it’s probably something everyone struggles with at any age but I keep asking myself the questions when it’s time to give up and when I’m just being oversensitive. I’m certainly not a perfect friend by any means and I could always put more effort in with certain people I think and I do flake sometimes. But then there’s moments when I feel like all I’m doing is putting in effort. When I’m doing all the contacting and asking about plans with certain people. Then I make the mistake of going on social media and I see those same people doing things together and I was never even told about them. It just makes you wonder. They were able to get a plan together for themselves, so why wasn’t I included? I’ve never even been on a trip with my closest friends but they’ve all been on trips with other people. What am I not doing to make more things happen?

It’s really quite exhausting as I’m sure you can tell just by reading that last paragraph. Maybe I just expect too much, I don’t know. These past couple of years I’ve really grown and redefined what I’ve thought about a lot of things, including friendship. I realize that it’s much more about quality than quantity. Do I wish I had a huge group of friends to pull from on those weekend nights when I don’t have anything going on? Of course. So all of these feelings I’m having make me kind of just want to say screw it. I know I’m worth spending time with and I know I really am a good friend, flaws and all. I don’t think I should have to try this hard all the time. Little one-off things are one thing, other people are flawed too and some people just aren’t crazy OCD planners like I am and I get that. But I also think there needs to be some give and take. I can’t keep trying and texting and trying to get stuff to come together when the people on the other end don’t try at all. It’s just not fair to me. If I’m not even a thought that occurs in their head, then that’s ok. We’re not meant to be best friends or close friends with everyone and people come and go in our lives.

The only thing I can control is myself and if I’m draining everything out of myself, feeling like I’m jumping up and down going “I’m here! Like me! Invite me! Pick me!” like a little girl, then I think it’s time to move on. Even if it means I don’t have the same quantity of friends. I don’t want to discount the amazing friends I do have in my life either, that do make the effort no matter what they have going on in their life. I’m so extremely grateful even to have a few of those kinds of friends. It’s a tough thing…adulthood and growing up and at the same time, I feel that insecure little girl creep up on me in situations like these. The scared shy girl in middle and high school that just wanted to be liked and to be accepted. The difference now though is I know I’m the only one that truly needs to like me or accept me.

Teachable Moments

So I think it’s probably abundantly clear by now that I do a lot of reflecting. Sometimes maybe to a fault. But I also think there’s those select few moments in our lives that really stand out, no matter how much older we might get. Sometimes those might be amazingly awesome moments and sometimes they might be really painful ones.

I had a teacher in high school. Her name was Ms. Manzano and she taught Algebra. I took her class in the beginning of my high school career. She explained things extremely well and clearly for my particular style of learning and I finished with the highest grade in the class.

Ms. Manzano was also the head of the scholarship club that I was in so we often had lunch time meetings with her even after I was finished with her class. There was one day we all had to grab an application or flyer of some sort from her classroom. I got in the long line that was forming adjacent to her desk. I watched as student after student grabbed a sheet of paper from the stack that was on the edge of her desk while she sat in her desk chair. When I got to her desk, I put my hand on the sheet of paper. She immediately turned in her chair and said in a seething tone, “Do you always just take things off people’s desks without asking?” I don’t remember what my response was anymore. I know I was completely stunned so I might have mustered an awkward laugh or just said “No” and turned around and did the walk of shame past all of my classmates that were waiting in line behind with mortified looks on their faces. I’m pretty sure I either went to the bathroom and cried and I know for a fact I cried at home that night and probably even several nights after that.

You’re probably wondering why I’m sharing this story. It’s not just to call out someone that I genuinely feel wronged me (though not going to lie, that is satisfying), it’s to point out that even those people we trust, the people that we look up to or are supposed to be our mentors, are flawed and can make wrong decisions. I was a scared, extremely insecure and extremely unhappy person for most of high school. I was overwhelmed trying to navigate the world of teenage angst while also having muscular dystrophy. I was reminded on a daily basis how different I was from my peers and because of that I hardly spoke and was very introverted. But I was always…and I mean always…polite and nice. My parents didn’t raise me to be any other way. So when my teacher that, up until that point I had respected greatly, even when everyone else bad mouthed her, belittled me like that when I hadn’t even done anything wrong, and right in front of my peers, I was absolutely crushed. Even if I had done something wrong, as a teacher her job was to foster my success and not tear me down for not being perfect, especially over something as dumb as a piece of paper and especially after she knew how hard I had worked in her class.

I’ll never know why she acted that way towards me that day. She might have been having a tough time herself. I’m sure she was acutely aware she wasn’t winning any popularity contests with her tough class and tough attitude. It’s also sad because I lost respect for her that day too, and it never came back. That’s probably largely my ego talking but to this day, when I think about that memory, it hits me right in the gut. I was too young and insecure back then to realize that I hadn’t actually done anything wrong. I beat myself up for years for doing something so stupid when I shouldn’t have because it wasn’t stupid.

We all make mistakes, even those who are much older and supposed to be much wiser than us. From our parents, to our teachers, to our Presidents, to doctors, and police officers. Just because people are in a position of authority doesn’t mean they’re always going to be right or do the right thing. Perfection doesn’t exist at any level, nor should it. Flaws are what make us human. But I wanted to share this story for those other scared, insecure high school girls out there. For people who have ever been belittled by someone they looked up to or was supposed to be their support system. To let you know I’ve been there and to say that it’s ok. That it wasn’t your fault and it doesn’t mean you’re weak or stupid or did something wrong. It’s funny when you go through life feeling one way about a memory then all of a sudden you grow up and say “Wait! I don’t have to feel bad about that anymore because it wasn’t my fault.”

I don’t know if Ms. Manzano is still teaching but I hope that along the way, she’s grown up a little too just like I have. I hope that maybe she’s had some of her own teachable moments that have given her more compassion. I really did learn a lot in her class and though that moment was really rough for me, it gave me my own teachable moment and for that, I’m thankful.

Inspiration of the Day: The Parking Problem

I came across these two articles last week and I think they really sum up the spectrum of feelings I have being a disabled person who uses handicapped parking stalls. They also inspired me to think more on the topic as well.

This first one was written by a girl who became wheelchair-bound later in life and realized how much abuse there is with the use of handicapped placards. I can’t tell you how many Hummers or lifted trucks I’ve seen in handicapped spots or how many times people have parked there, even at work, “real quick” just to drop something off. Or how many times people have stood to have conversations in handicapped parking stalls.

http://blog.themobilityresource.com/blog/post/an-open-letter-to-handicap-parking-violators-just-stop

That brings me to the next article though. Conversely, I’ve also experienced many accusations from other people when I’ve parked in these spots because I don’t “look” disabled. Oftentimes, this can be more frustrating for me than people potentially abusing their parking privileges. But it makes an excellent point also, a point that one of the commentors in the first article actually made. It goes to show that you can’t always judge people parking in the handicapped spots, no matter how much they might not look like they need it and no matter what kind of car they drive. I admittedly have no idea what the requirements are to even get a handicapped placard. I’ve just always had mine.

http://blog.themobilityresource.com/blog/post/i-would-love-to-see-your-wheelchair-angry-note-left-on-a-mans-bmw-in-handicapped-parking-spot

I do still think there’s a terrible abuse of the handicapped placard system across the country. I had a guy in college fully admit he kept renewing his temporary placard after he had knee surgery, even when he didn’t need it anymore, because he didn’t feel like having to drive around and look for a parking spot before class. I want people to be more aware when they choose wear to stand or think they’re just going to be parked there for a minute. But I also have to work myself on not jumping to judgement when it comes to other people. Just like I don’t want people to assume things about me, I can’t assume things about them. You never know what kind of disability someone may have. My jumping to conclusions about other people makes me no better than those who jump to conclusions about me. Just because I have a disability doesn’t give me the right to assume things about other people. So I thank these two authors for illuminating two very important parts of this issue.

Inspiration of the Day: Living on One Dollar

Before the weekend rolled around, a coworker recommended a documentary on Netflix for me to watch. It was called Living on One Dollar. Without even reading the description, I booted up my computer and launched Netflix. To give you a description of it though so you know the context of this post…it’s about 2 college guys (Zach and Chris) and 2 videographers from Southern California who decide to spend their summer in a remote and very impoverished area in Guatemala to find out what happens when people stop being polite…and start getting real. Whoops sorry, wrong show. They decided to do this in order to experience what it’s like for people who barely make $1 a day, don’t always know where their next paycheck is going to come from and can’t even afford the basic medical care their country has to offer.

Through the first 15 minutes or so, I was admittedly a little skeptical. I thought, “here we go, a show about 2 middle class white guys that are going to spend their summer vacation seeing how some of the world’s poorest people live and then they’ll go back to their hoity toity house and forget all about it, while these people don’t have that option.” But it actually turned out to be much more than that. Yes, they did leave at the end of their summer and resume their lives in California…a fact they were more than willing to cop to at the end. The greatest part of the documentary though wasn’t even really about them or their experience in Pena Blanca (though poor Chris did get pretty sick a few weeks in and they all looked pretty scarce by the end). The greatest part though were the people they interviewed that lived in the town. Beautiful, vibrant people who welcomed these complete strangers into their home. Who cooked for them when they barely had enough to feed their own families. They lived in houses without even fully functioning roofs in most cases and dirt floors. They didn’t have beds. They didn’t have running water or any source for warmth or air conditioning. Anthony, the only man in the town who had a steady job, is 24 years old with a 20 year old wife and several kids of their own. When the wife of their neighbor, who hadn’t been able to find work even as a day laborer out in the fields, fell ill and very nearly died, Anthony lent them the money to be able to buy her the life saving medicine she needed even though he still had very little money himself.

I live in the U.S., a place I feel very lucky to live in. But it is also a capitalistic society often driven by the need to consume and to buy buy buy. To always want more more more. Advertising bombards us from all sides telling us we need that new car, that those clothes will make people love us, that stuff will somehow fill the void. I’m just as guilty of consuming myself. I always feel like if I had that one thing for my room, then I would be content. If I have the cutest clothes, then I’ll be set. I always want want want. At the same time, I’m also always aware that there are people right here in our very own country that don’t know where their next meal is going to come from, that don’t have even a leaky roof over their heads. It’s never lost on me that I’m extremely grateful to have all that I have, right down to being able to take a shower every day.

This documentary really gave me an even bigger change of heart though. There are really so few things that I actually need in my life. Water, food, shelter, friends and family…that’s pretty much it. Am I still going to shop sometimes? Yes. I think it would be unrealistic to say I’ll never buy another piece of clothing again. But now, every time I go to buy something, or get that feeling that starts to bubble inside of me that I “need” this or that, I remind myself of those smiling faces in Guatemala. I remind myself that I have everything I need and plenty to be thankful for. It sounds arrogant to say that the plight of impoverished families in a remote area of Guatemala woke me up to my own spending habits or what I really need and don’t need, but I reveal this revelation only with the utmost love and respect.

The guys even set up a webpage where we can all learn how to help the families in the documentary and the cause as a whole. I’m on the list to buy a shirt for Rosa so she can go to nursing school just like she always dreamed of before she had to start working in the fields as a young girl to support her family.

To check out the documentary on Netflix and to find out how you can help, check out these links:

https://www.facebook.com/LivingonOne

http://livingonone.org

Inspiration of the Day (and Life): Mattie Stepanek

This is Mattie Stepanek. He was one of the most amazing, wise, compassionate and caring people to grace this planet. Mattie also had muscular dystrophy and lost his battle with the disease when he was only 13 years old. I wanted to share a clip of Mattie on Oprah, when I and the world were introduced to this incredible little boy, not just because he was and continues to be a remarkable influence but because after what I wrote last night, I felt a little selfish. I never apologize for what I write here or for what I feel at any given moment. It’s my blog and I have to be true to myself, even the bad and the not so pleasant stuff. But after I hit the “Post” button yesterday, I was immediately reminded of all those struggling with MD who don’t have the luxury to say “I don’t want to live a long time.” They don’t have that luxury because the type that they have is fatal. They won’t have a choice in the matter. Life might take them when they’re much too young, just like it did with Mattie. My body and I are still not getting along right now (I may have to file for formal separation) but I did realize I need to be more grateful and take out a little more of “me” in the equation. I’m not the only one on the planet with MD and there are others suffering so much more than I am.

Anyway, I’ll stop rambling about myself and let you watch this amazing boy. Thank you Mattie for living with so much love and being an inspiration not to just those of us with MD, but to the world. You are truly missed.