Hateful, Hurtful Words NEED to Stop!

I'm soooooooooooo sick of sociopathic bullies like the lady who wrote the following on her Facebook group page entitled, 'group to revoke handicapped parking permits:'

"Stop treating people differently based on their physical capabilities, that's what they say, but it's all lipservice! As soon as one of those handicapped people wants to park a car they don't want to be treated 'like everybody else' anymore. Well, here at the group to revoke handicapped parking permits we say: 'May every man, woman, child, and retard, be treated equally.'



Do they really need it? If they're so messed up they can't drive, then why doesn't the person they're with just drop them off and find a f#@*&!^ spot? If they are able to drive, but use a wheelchair then there's absolutely no need for a close spot- they're on wheels, a conveyance that's gonna get them there easily and faster anyway. Now for those who are just so weak and tired that they aren't able to drive and have too much pride to get in a wheel chair- I say stay home! You've probably got somebody catering to your every need there, too! Why do you feel you need to get that kind of attention when you leave the house too?
Now there is new category of 'handicapped' people: the grossly, morbidly, obese. Now with this I vehemently disagree. Isn't it possible that if you parked further out and walked to your destination you would burn a few calories and lose some weight, thereby negating the need for the 'fatticapped' parking in the first place?



FIGHT DISCRIMINATION!


Actions to take to show your support:

1- get out there and send in a photograph of yourself 'illegally' parking in a handicapped spot, then post it accordingly;

2- steal a handicapped placard from a car;

3- remove any 'handicapped parking only' sign you possibly can; and, finally,

4- flip off handicapped people in the name of equality!"

Let's deconstruct her argument for a minute, shall we? According to this woman's logic the handicapped don't deserve to have a place in society or to even show our faces out in public at a grocery store. Sociopaths like her embody everything that's wrong with the world today. It was all I could do not to stoop to her level and call her hurtful names. Instead I sent her a message with a link to my blog post about my personal experience using a handicapped parking sticker. Maybe it will inspire her to put herself in someone else's shoes for a change...

My First Time Driving a Motorized Shopping Cart

I am a bit of a stubborn person by nature. It took me a long time to admit that yes, at times I definitely need that handicapped parking sticker. And now that I have been using it, it has made life a little easier. The other night I was feeling very lightheaded and weak but decided to go on with my usual routine. Well, the only place that got me was sitting on the floor in the middle of a Lowes home improvement store.

Several of my friends have suggested that I use a motorized shopping cart on a bad day or when I'm in a large store. So, I finally gave in and tried one. And go figure, the first time out, I got a dud. It was not a smooth ride. Although I'm sure it only traveled all of about 5 miles per hour at most, it was very touchy and took me awhile to get the hang of driving it. Don't let my experience discourage you though, I'm sure they couldn't all be this difficult to navigate. The cart was stop, go, stop, go, stop, go and didn't turn very well. But aside from the technical issues, I had a much more pleasant shopping experience than usual. I was able to last much longer and didn't have a woozy spell once.

After the parking sticker incident, I was apprehensive about the way people would perceive me or the looks I would get for operating a motorized cart. But surprisingly, the shoppers and staff of Fred Meyer I met in the aisles were surprisingly friendly. I got a few looks, but not dirty ones. Nobody asked me why I was using a motorized cart, and nobody seemed to care. All in all it was a much better experience than I anticipated. There were only a few major drawbacks to using a motorized cart. The first was, I could not fit many items in the basket. So if I had a lot of heavy shopping to do, I would probably need someone else to come along and push a regular cart if I could not do it myself. The second thing is, if I were not physically able to stand that day, there are many items that I wouldn't have been able to reach from the cart. The last thing is, some of the aisles were a bit too narrow for the cart to clear so I found myself taking alternate routes a lot, which was a bit annoying.

If you have been contemplating trying a motorized shopping cart, I would highly recommend it. If you are still uncomfortable with the idea, try it in a store you don't ordinarily shop in. There is nothing to be ashamed of, but I understand that it can be exhausting to explain your predicament to people you see on a regular basis. Automatically people tend to assume that you've been injured because they just saw you walk in the store last week. If only dysautonomia were as simple as an injury that would heal, life would be much, much easier.

Response to Anonymous Note

A few evenings ago after buying a wedding present and returning to my car fifteen minutes later, I was greeted by a note on my windshield saying, "NOT HANDICAPPED, JUST LAZY." Thanks ignorant person for making my day a little worse. People like that perpetuate the injustice surrounding invisible illnesses; they don't believe what they can't see.

I was so shocked, appalled and upset by this note that I posted the aforementioned incident on my Facebook page to vent and was simultaneously surprised and saddened by the amount of responses stating that the same thing has happened to many of us before. I decided that instead of wasting any more precious energy being angered by this ignorant individual, I would do something constructive and write him or her an open letter explaining my situation and why it is important to think twice before acting on a selfish impulse.

Dear Anonymous Note Writer,

Please, if you are going to invest the time and energy to write me a note and place it on my car in the pouring rain, at least have the guts to sign it. Or better yet, confront me in person. Even a first name would have been nice so that I could assign you a hypothetical identity, not that it would have even mattered because I am not as inclined to make snap judgments about people as you apparently are. And if you would have kindly provided your e-mail or phone number, I would have surely contacted you to defend myself and all the others suffering from invisible illnesses who have been wrongly accused of cheating the system.

The truth is, people like you represent all that is wrong with the world today. You judge a book by its cover without thinking twice about it. You must have seen me park in a handicapped parking stall with my sticker hanging in the windshield and walk into Bed Bath & Beyond without any apparent signs of physical distress or discomfort. I can even understand the thoughts that may have been running silently through your mind: Is that girl really disabled? She looks fine, how did she get that sticker? I wonder what is wrong with her, if anything at all? She is not walking with a limp or using a wheelchair...

Prior to getting struck with an invisible illness out of the blue, I may have been asking the same questions myself if I saw a young, seemingly able-bodied individual walk effortlessly into a store after parking in a handicapped stall. The difference is, I would have never had the audacity to confront them about it, because I like to assume that all people are inherently good and decent until proven otherwise. There is no need to attack or confront someone simply for using a handicapped parking sticker that they may very well need. I am sure there is the occasional incidence of a handicapped parking sticker being stolen from an elderly person, but I highly doubt that it happens too often. The fact is, most people who have a current handicapped parking sticker actually do need one. And it is not up to anyone other than their doctor to decide whether or not they need one.

What compelled you to write that note to me? Did it make you feel better about yourself to impose judgment on someone else? What did you hope to accomplish by leaving it anonymously? Were you waiting to see my reaction? To see if I would laugh, cry, or yell about it? Well, as I'm sure you probably witnessed from afar, I cried about it. I hope you are happy. You didn't accomplish much except for making a young, chronically ill girl cry and question her place in the world. It is hard enough to have an invisible illness, but even harder to have one at such a young age. Although I may have looked fine to you on the outside, on the inside my body is fighting an internal battle I'm sure you probably can't even begin to fathom.

By the time I got back to my car a mere fifteen minutes later, I was lightheaded and weak with a racing heart, and had to put my feet up on the dashboard so that the blood pooling in my legs would slowly circulate back upwards to my heart and brain. Once I became oriented and alert again, I noticed the note on my windshield and got out to retrieve it. My heart sank when I read, "NOT HANDICAPPED, JUST LAZY." Talk about adding insult to injury. After enjoying the first somewhat "normal" day I'd had in a long time, you, a complete stranger to me, try to bring me down by making an unfair and untrue assumption about me. I am anything but "lazy." Before getting sick, I could do it all. I was valedictorian, a first-generation college graduate, a television producer and a talk show host. Now, I exercise every single day just to maintain circulation in my legs. Not the typical characteristics of a "lazy" person, are they? Do you exercise every day? If you don't, does that make it acceptable for me to call you "lazy"? It certainly doesn't, because it is not my place to judge you. I do not know your situation in life. I resent being belittled by someone who knows NOTHING about me or my current circumstance. I can only hope that my illness is just temporary, but since you saw my parking sticker, you surely noticed that it is a permanent handicapped parking sticker because no one, including my doctors, know if this cruel condition will ever go away. This condition, should you care or bother to educate yourself about it, is called POTS, a form of dysautonomia. In a nutshell, it means my body's systems are constantly fighting to be normal and I struggle with debilitating symptoms on a daily basis. My electrophysiologist (heart doctor) issued me the sticker to help give me some independence back. Independence that you are lucky to have.

I am sorry if my young age and appearance offended you. You should be ashamed of yourself for judging a book by its cover and maybe next time you will think twice before making rash assumptions about others. And please, don't bother picking on people with handicapped parking stickers ever again. My best guess is, you don't know the half of what it's like to walk around in our shoes.

Sincerely,

Ms. DefyGravity

defy.gravity321@gmail.com

Update

A few weeks ago, I saw my electrophysiologist, the brave and patient man (in my book that makes him a hero) who has taken me on as his first real POTS patient. Although I get along well with this doctor, for some reason I typically end up in tears in his office. Every time he sees me he must be anticipating the waterworks since he always has a fresh Kleenex box in hand upon entering the room. Sure, there have been a few extreme tachycardic episodes which he witnessed with his own eyes, the simultaneous sense of disappointment and relief I experienced upon finally hearing a legitimate diagnosis, and even the grieving openly to him about the emotional aspects of being sick and the wonderfully active and ambitious life I left behind. Those discussions all engendered tears easily. But at this last visit (my first visit with him in over 9 months!) for the first time I did not cry. And I was proud of myself. He could tell I was making progress. It's not like he is my shrink or anything, nor is it his job to be, but he is sensitive to the fact that I am dealing with something difficult and chronic with no quick fix or simple cure. His empathy is refreshing considering most doctors I have encountered don't even recognize the terms POTS or dysautonomia.

I ran through a checklist of questions, among which were routine items like a compression stocking prescription, a refill on my propanolol (taken as needed), and an update on my blood pressure readings. The first and most important item at the top of my list was to talk to him about getting a handicapped parking sticker, something I have been vehemently resisting until just recently. My mom convinced me to at least ask about it to see if it was a viable possibility for me, and of course she encouraged me to get one. My electrophysiologist agreed with her wholeheartedly, filled out the paperwork, and I had my sticker that afternoon. I'll admit, it has made life a little easier.

Whenever I attempt to go to the grocery store or even run a simple errand, I am often exhausted before the time I ever get inside. I realize that my body is operating like an hourglass, the blood is slowly running downward and I only have a limited amount of time to complete errands before all the blood will have left my brain and I will collapse in public. So needless to say I make lists and plan my strategies for errands very carefully so I can complete them as quickly as possible to avoid a potentially embarrassing incident in public. Perhaps it is because I passed out at my own college graduation, what is supposed to be one of the most important and defining moments in any young person's life, but I have an extreme fear of passing out in public again although it has only happened to me that one time. I think my fear of publicly passing out is mainly because I know someone would call 911, I would be forced to endure yet another harrowing and uncomfortable ambulance ride, and end up getting needlessly poked and prodded in the ER only for them to tell me they have never heard of POTS and to be sure to follow up with my doctor. Aside from getting a saline IV which usually makes me feel a little better temporarily, there are few perks to an Emergency Room trip. Usually the amount of blood they take for the tests is enough to drain me (literally) and leave me feeling more weak and symptomatic than I was in the first place.

And why they never let anyone eat anything in the emergency room is beyond me. I know I will not be needing an immediate surgery, and I also know that my body doesn't last much longer than about two hours without food. It was always a bit difficult to sneak bites of fast food while laying there and I always felt slightly guilty when a doctor or nurse asked what the smell was. But I know that not eating while I waited for hours on end for a response as to whether I could eat or not would only result in me feeling much, much worse. So I'll admit it, I have eaten several cheeseburgers in emergency rooms while waiting on test results. Admitting that feels like I am confessing some unspeakable sin, but at the same time, I'm not sorry, because my body was probably telling me to eat the cheeseburgers for a reason. Sneaking those cheeseburgers was about the worst thing I have done in my life thus far. But feeling that sick and that starving, at the time I didn't care that I was breaking the rules, and truly felt as if I might die if I didn't eat at that very moment.

Luckily I have managed to stay clear of emergency rooms all year, and it feels good. After having a recent string of bad days down in bed, I realize I am not out of the woods with this whole POTS saga yet. But the good news is I am down in bed much less than I used to be, and am much better than I was in the beginning. Maybe it is because I have discovered what triggers my symptoms, and I do my best to avoid those things (standing, extreme heat, going for too long without food or water). Or maybe it is because my autonomic nervous system is slowly recovering and normalizing. I can only hope that my progress is due to the latter.

In the meantime, it is my new found attitude that I am going to do everything in my power to lead a more 'normal' life. If that means using a handicapped parking sticker to achieve a better quality of life, then that is what I am going to do. If I am feeling faint in public, I am going to sit or lay down on the floor. I don't care if it isn't socially acceptable. I refuse to be embarrassed about it. I refuse to let people's stares bother me anymore. My next step, although I am stubborn and hate to admit that that I need help and can't always stand on my own two feet, is to take a trip to the grocery store and use a handicapped cart so I can actually enjoy my shopping experience for the first time in a few years. I may attach a sign to the front of the cart that says, "I faint." I get tired of explaining POTS to people who simply don't get it.

I think I have been in denial about being different for a long time. It's like I don't want to admit to anyone, even myself, that my body cannot do the things it used to. My body harshly reminded me this past weekend when I used my handicapped parking sticker to go to a classic car show. Because I wanted to go, and I thought I could handle it. And I would have never known if I didn't at least try. Silly me, I now know that it was a bad idea to even attempt such a thing especially on a hot day without renting a wheelchair. What was I thinking? The stubborn side of me was thinking, I don't want to have to be pushed around in a wheelchair all day when I have legs. I don't want people staring at me. And, most importantly, I don't want to give in to this illness. If I start using a wheelchair, or becoming too reliant on my handicapped parking sticker, then POTS has won and gotten the best of me. And I don't ever want to let it win. At least not without a good fight. Then it hit me, that I am only making this whole experience harder on myself by not listening to my body. And if I don't listen to my body, and try to accommodate it at least a little bit, then POTS is winning anyway because I am allowing the symptoms to dictate what I can and can't do in life.

Not anymore though. Although it sounds cheesy, I am going to start embracing the fact that my body is fragile. I am going to treat it with even more respect than I already do. I am going to nourish it properly by eating a better diet with more whole foods. I am going to go for regular massages. I am going to find an exercise regime that works and adhere to it. I am going to try my hardest not to compare myself to my "normal" peers and what they are doing anymore. That only makes me feel inadequate and reminds me of all the things I am missing out on. I am going to adopt a new attitude of positivity and be thankful for the things I have accomplished in life and the wonderful friends I have gained through POTS who are all sharing in this difficult struggle.