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August 1, 2013 / Ang

A Little Talk about Life

But before I begin to ramble, let’s have a moment, k? I dedicate this moment to awesome music. “Little Talks” is amazing, and we’re jamming to the live session despite the fact that the music video may have better music quality for the sake of energy. You may go find a different version or covers, etc with your spare time thanks to my sparking (or reigniting or reminding you of) your love of this song and band.

In the words of my niece, “Sooooo talk.”

My mind has been ALL OVER THE PLACE today. I have a post draft just waiting for me to finish doing the research to adequately shut the article down factually, and I warn you now – it’s political. I got sick of seeing people making Obama out to be a monster and spreading lies about him, so I decided that I was going to logically tear the article someone shared on facebook to pieces, here in my “safe space” where I doubt he’ll ever see it so that I”m not starting an argument. Although I suppose one of the oh so many readers I have could try to fight me. But, you know, it’s whatever. I just feel the need to express that opinion – so it’ll be posted eventually.

I have this habit of opening like a million tabs and having a perfectly good reason for either not reading them at that exact moment, or for keeping them open after reading them. And I feel like a lot of the time lately it’s so that I can write about it for the sake of writing. Or just because I want to be able to talk about these things with someone and I’m just waiting for the right time or person.

One of these tabs is the Dysautonomia International page. Specifically, I have a page about being part of a research project up. If I lived closer to upstate New York I think I would be a part of it in a heartbeat. (See, that’s funny, because I have POTS and because one of my ventricles does its thing just fast enough to be considered irregular but just slow enough to not count diagnostically.) Seriously, I would love to be a part of it – and not just because they would be paying me $750. Although, you know, depending on housing and travel it just might be worth it even being so far away. I’m sick of not having answers and I feel like if I can help to find answers somehow I should. Oh God, I just almost talked myself into becoming a doctor again. Someone stop me.. Please.

Along the same lines as that last thought: I feel like I need to start being a part of an awareness project for invisible illnesses, and dysautonomia/POTS/syncope specifically. I’m so sick of the shock that sometimes things go wrong. It’s terrible, yes, but it’s a part of life. You do the best damn job you can of figuring out what went wrong and why, and how to fix it. And you move on. I’m withdrawing from my university for a while – the length of “a while” has yet to be determined. I assumed it would only be a semester, but right now I really don’t want to set start setting deadlines I may not meet (such as feeling healthy enough to decide to apply for readmission by December 1st). My professor seemed in shock that I didn’t have my life put back together yet when I e-mailed her. I would have to open the e-mail to be sure, but I’m almost positive her exact reaction was “Oh wow.” I get it – finding out that someone who is “so young” has serious health issues has shock value. But I can’t help but think back to the years I had her in class and it seemed like she didn’t believe me that something was wrong and I needed to leave class or go to the health center or even just go home because I felt like I might pass out. And then I remember, my illnesses are invisible. Unless I’m having a really rough day or I have marks from IVs or something like that you could make the assumption that I’m healthy based on my appearance. I’m not emaciated, I’m sometimes great at putting on a brave front, etc. Additionally – I’m stubborn as hell. I was trying valiantly for the first few months to hold on to “my life” with everything I had. I didn’t want to admit that I needed to make some changes and take a break. Even in my semester “off,” I’m considering how to become active in volunteer work that could benefit people with rare diseases and taking free online classes. I’m also still looking for employment. See? I’m not good at just taking a break.

On the online coursework front, someone posted links to a bunch of websites that you can take online classes from for free. I’m so sick of being sedentary and not knowing what to do with myself that I seriously made a pinterest board for the websites so that I could find them easily to figure out which courses I want to take and how to take them.

Back on topic: Part of what has me so fired up about wanting to do awareness work and benefit people with rare and/or invisible illness is this stupid website that someone linked to earlier. It’s all about shaming “illegals” who use the handicap parking spots that are rightfully reserved for “deserving handicaps.” I kid you not, I swear I have seen those exact phrases used to describe the situation. I want to share a few different things I read on the site just so that everyone can fully appreciate the absurdity of it.

First, someone who wants to claim that you have to be in need of a wheelchair, cane, or walker (you get the picture) in order to qualify for the handicap parking spots. Apparently the ADA has just been fighting for equal access because they’re greedy and want money. If you have an invisible illness (he specifically references heart conditions and asthma) that may make it difficult for you to walk from the outskirts of the parking lot to the doors – too damn bad for you, you can still walk. I was really proud of a girl that responded to him, though. Check out the link for her response.

“Here’s a concept. Handicap parking fraud can be practically eliminated if the person with the placard uses and depends upon the following:

Motor Chair/Wheelchair
Walker
Crutches/Cane(s)

In my book, disability means the person cannot walk freely, cannot put one foot in front of the other without the assistance of the above equipment. Asthma or a heart condition are not a handicaps – they are ailments. The absence of medical mobility equipment is a disqualification. Period. No exceptions, end of story. Invisible disabilities don’t count.

The ADA has stretched and distorted the definition of the word disabled and this issue of handicap parking for their own greed and frivolous lawsuits. This corrupt government agency mandates the installation of ramps, lifts, elevators, parking, etc., for what? For the money. It has nothing to do with helping anyone. It’s also revenue for the state; the more placards, the more cash flowing in. My mother is handicapped, she contracted polio at age 8 in 1941 and used a cane until recent years and is now confined to a motor chair. There have been times when during an outing there were no spaces available because of the sloths who consider themselves disabled in order to obtain convenient parking.

If you can walk, put one foot in front of the other without assistance, you are not handicapped. You should be grateful you can stand upright. The blue sign in front of the handicapped parking spaced shows a person in a wheelchair, not a person walking freely holding an inhaler.

That’s the way I see it and I think it’s a very sensible solution.”

Please tell me I’m not the only person who gets the absurdity of this man’s argument. I wanted to punch him in the throat for it, then realized that he used his hands to make it not his voice (most likely). So maybe I just want to slam his laptop shut on his hands so he can’t type for a while. Seriously? The ADA isn’t about protecting the rights of individuals who need accessibility measures but about making money? You’ve got to be kidding me. I would think with your complaint about how you had a hard time finding good parking for your mother that you would be more appreciative of the efforts the ADA has gone to in order to ensure that buildings are accessible to your mother, sir.

Anyway, the entire point of this site that allowed him to post such a thing is to shame people who use the handicap parking spots that whoever has decided to shame them deems “too healthy to be handicapped.” Essentially. If you think that the person is using someone else’s pass and is parking there illegally you take a picture, record details about the event, etc – and then you post them online. And at the end of each month these reports are sent to each state’s DMV so that they can be investigated. I wish I were kidding you. Some people might be nodding along agreeing going, “Well that makes sense. A lot of people misuse the parking spots and if there’s more accountability for it then maybe the people who need the spaces can have them.” The thing is: INVISIBLE illnesses. For example, my grandmother has had multiple brain surgeries. Some days, she needs her cane. Other days she does okay without it. In any case, she has and needs her placard. But apparently being able to walk to her van on the good days means that she doesn’t deserve it in some people’s minds. What if someone from my area learned about this site and then left one of the stupid sticky notes saying, “YOU’VE BEEN SHAMED” on her van? She shouldn’t have to put up with that. An even more extreme example: A lot of people with my condition get plates. Having a cardiovascular or circulatory issue can qualify you for handicap placards or plates. I “look” healthy. If you didn’t know me to see my dizzy spells and that I need to sit down sometimes, or know how high my heart rate gets, and I had one of the placards you might think that I was misusing someone’s placard because there’s no way there’s anything wrong with me. The blog that I’ve referenced before, letsfeelbetter.com, actually has a post from firsthand experience. She was having a bad day, put her placard up, and walked in to get her drink hoping that she didn’t pass out. She had to deal with some random stranger (an elderly man actually) making a rude comment to her about how she sure didn’t LOOK like she had a disability on her way in. People can’t see the struggles sometimes, that doesn’t mean that they’re not there. The worst part, to me, is that there are people on this site who literally say that they need the parking spots more than other people who, for all they know, also qualify.

“Parking illegally in handicap parking will get you reported as the rightful handicapped snaps a pic of your car and license plate. It then gets posted on handicappedfraud.org, along with a description of when the offense happened. There are many links to help the handicapped to speak up and speak out about this growing problem. There are various handicaps that basically fall into 2 categories: Ambulatory and Non-Ambulatory. Some handicaps we can see, others we can’t. Regardless of whether or not we can see the handicap all boils down to who can legally park in the blue. Just because someone has a plate or placard doesn’t always mean that the driver is legal to park in the blue.”

That’s just a part of the person’s post. I give some credit – there was acknowledgement that sometimes you can’t notice the thing that makes a person qualify for the pass. But at the same time, just because you think someone looks healthy you’re going to report the situation in case it’s not his or her pass? Yes, please, let’s cause more trouble for people that are already struggling with illness. I’m sure that having to fight not only the people he or she may already encounter in life about whether or not the illness exists but complete strangers on the internet who feel that they are more deserving of the parking spot will help the situation.

This is the site’s “about page.” Let’s read an excerpt from it, shall we?

“We are not qualified to know if someone is healthy or not. Our organization does not issue tickets, but raises awareness and hopefully shames offenders into: paying for their parking meters and leaving designated spaces for the truly handicapped. There are instantly several tickets that can be issued from DMV based on our report:

  • If a placard was reported as lost (and is being used)
  • If a placard has been reported stolen (and is being used)
  • If a placard has been issued to someone who is now deceased (and is being used)
  • If a placard is recurring in front of an office building, and is issued to a 90 year old blind man, it is most likely being abused. DMV can send an investigator.

If you accidentally report someone that truly is handicapped, there is nothing that will happen to them.”

You’re absolutely right, you are not qualified to decide who does or does not deserve to use that parking spot. And sure, that person might not get a ticket, but that doesn’t mean that “nothing happened.” The post-it note could cause unnecessary shame about using the spot due to an invisible illness, stress over the fact that he or she may feel as though there is now a need to “validate” the permit use, etc. Mostly, though, I feel like it’s just going to irritate someone who is already used to fighting for what he or she needs and has to put up with a stranger’s judgment additionally. You could be “shaming” someone who has just as much need of the spot as you perceive that you or your loved one has. And sorry, but that’s a douche move.

If you check the board it’s full of the word young, because apparently being young precludes you from having any special needs or medical problems. Other phrases include, “looks healthy,” “wearing high heels,” “no obvious handicap.” The person has a placard but he or she doesn’t “look handicapped” so the response is to shame the person for potentially needing the space but not looking like it. I’m not applying for a placard any time soon, although sometimes walking blocks to get to where I need to be because there’s no good parking nearby makes life difficult, but if I did – I hate to break it to you but I would wear my damn high heels if I want to. I have tachycardia and syncope, I get dizzy spells and my heart goes way too fast – that doesn’t mean I can’t dress as I please.

I was amused by the response of a woman who was deserving of the spot but got one of the sticky notes, though.

“Some one [sic] placed a paper on my car saying I had been reported to handicapfraud.org. I have an adult child with disabilities and a placard allowing me to park in the designated spots with her. In addition to this, I am currently in a stabilization boot and preparing for foot surgery that would qualify me for a temporary placard if I so choose to get one. My car clearly has the placard posted. Someone needs to get a life. Not all disabilities are immediately visible or observible [sic]. They are none the less there.”

In other “little talk about life” topics we have: Life is short. One of my tabs is from a local paper that is reporting that a man died in an accident at a mine. I originally thought that the article is about someone dying in a mining accident, but instead he was standing on the wheel of a piece of mining equipment investigating its frame when its suspension gave out and the man was crushed in between the body of the equipment and the tire.

Forgive me for being depressing, but really – it serves as a good reminder that life is short. Sometimes I get frustrated with my circumstances, but at least I’m alive to have circumstances to get frustrated with.

In other news (literally – it’s an article from CNN): Happiness can have an effect on health. Not just in the, “Oh, depression can shave years off of your life” way, but the type of happiness matters. I guess it speaks volumes to finding happiness through the things that you do being fulfilling rather than caving to materialism, though. Anyone have an opinion on this? Shall we discuss this?

I’m not going to discuss all of my tabs, I promise, but here’s another one that I find pertinent to life. It may have something to do with the fact that I’m an education major, but I think that an important part of life is to get an adequate education. If you’re capable of learning – no matter what it is that you’re learning or how you’re learning: DO IT. And parents have a responsibility to their children to ensure that they’re getting a proper education. If you’re going to homeschool, do it for the benefit of your children. If you think that your children will honestly be better off learning from your house than the school, then homeschool. Maybe there’s a great reason for you to do so, but if you do: Prepare your children for the real world. Have them learn the facts. If you want to include a Bible study or something, whatever – that’s your prerogative, but you should be making sure that your children are at least on level with their peers if not advanced if at all possible. You should not have children who are perfectly capable of learning that are old enough to be in middle school that still can’t read because you’re not actually bothering with their education but expecting them to just magically learn on their own. I’m so proud of this boy for taking a stand for his siblings, and for figuring things out for himself. I guess I can’t really refer to him as a boy, though, I’m pretty sure he’s close to my age.

I think that’s all for now.

Oh, wait, I forgot. Love is important. Supposedly best friends are the best lovers. I stumbled upon a social experiment taking place where two best friends decide to date for forty days. I need to get caught up on it, here’s the site if you want to check it out too: http://fortydaysofdating.com/about/.

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