Forget the cloak: become invisible in a handicapped parking space

April 27, 2013

I’ve found there are two reactions from strangers when I park in a handicapped parking spot. It’s either condemnation or obliviousness.

I covered condemnation in yesterday’s post. I experienced obliviousness today.

Do you ever watch how people search for parking spaces? It doesn’t matter if someone plans to walk a mile around and around Handicapped Parkingthe inside of a mall; it’s so very important to them that they don’t walk an extra 50 feet to a farther parking spot. It’s a priority to park as close to the building’s door as possible. It doesn’t matter to them how much time, effort, and gas they waste. They need the “best” possible parking spot. They see it as an accomplishment.

Now, if you happen to be in one of those close-to-the-building parking spaces, drivers will be very happy to wait while you load your packages into the trunk, buckle your kids into their car seats, check your email on the phone, and generally take several extra minutes to pull out of that spot. Because it means they get the spot when you leave. So they wait while traffic backs up behind them.

All of that is different if you park in a handicapped parking space. They can’t park in your spot, so they don’t bother looking in your direction. They just drive right past. I’ve found that waiting patiently doesn’t help with this situation. I’ve tried to back out slowly, but that’s tough too, because the determined drivers will just swing around my car and continue down the aisle. They can’t use my parking space so they have no incentive to let me out. I’ve found that it takes much longer to get out of a handicapped parking space than a non-handicapped one that’s just as close or even one that’s farther away. And it’s infuriating.

I know this problem isn’t about their view of me needing the parking space. It’s about people being selfish, impatient, and rude. Still, it’s just one more added difficulty in an already difficult situation. And I’m fed up with it.

2 Comments | Educating, Expectations, Frustration, Intrusions, Parking, Rants | Permalink
Posted by chronicrants

You know what happens when you assume

April 26, 2013

She called me up in tears. She wanted to talk specifically to me, because she knew I’d understand. Now that I’m remembering it, I’m just so angry!

Amy was having a bad day. She was worried about her sick elderly father. She was just told about a potentially career-altering problem at work. She’s still helping out her husband while he recovers from surgery and can’t do as much around the house as usual. She was in a lot of pain, even more than usual. And to top it all off, she’d just gotten bad news from her doctor. It was a bad bad bad bad day.

On the way home from taking care of her father, Amy stopped to pick up take-out food for her and her husband. She couldn’t Handicapped Parkingmanage to cook. She was exhausted and in pain and didn’t think anything of pulling into one of the handicapped spaces. Like me, some days she doesn’t bother with those spaces. It just depends on how she feels. But just about every day, like me, she looks healthy even though she’s not.

Food in hand, Amy returned to her car to find a hand-written note on her windshield. Someone had written that she didn’t look handicapped so she shouldn’t be parking in that space. And like any one of us who have gotten a similar note, dirty looks, or hurtful words thrown at us, she was angry, upset, hurt, and felt the need to defend herself. Of course, the writer of the note was no where around, so all she could do was go home and cry.

I am glad she called me, because I do understand. And at the end of the call, she seemed to be feeling a bit better. I suggested some self-care: a shoulder rub from her husband, good food, a relaxing movie, and lots of sleep. I told her to call me back if she needed to cry or yell, and to throw or punch a pillow. She apologized because she never complains, but I pointed out that she can’t just keep this bottled up.

And neither can I.

Everyone with an invisible disability experiences something like this at some point in their lives. I’m sorry, but it’s true. I have experienced it more times than I want to think about, but still fewer times than I’d expect. Over the years, though, I’m sure I’ll experience it more.

I applaud those who call out people who truly are fraudulent. I often report cars without proper tags that are parked in handicapped spaces. But none of us has any right to judge others for their perceived abilities or lack thereof. No, I do not look like I need to park in handicapped spaces, but I do. No, I do not seem to need a wheelchair, but some times I do. No I do not look like I’m unable to stand on the bus or train, but I am. No, I do not look like I am unable to work, but I am. That is my reality. It’s no one else’s.

And it’s no one else’s to judge.

4 Comments | Educating, Frustration, Insensitive, Intrusions, Parking, Rants, Support, Symptoms | Permalink
Posted by chronicrants

Why can’t you explain everything about your body?

March 23, 2013

My energy is low so this will be short. But I think short is fine – after all, we’ve probably all experienced this, so you know what I’m talking about. And if you’re one of the people who asks these questions, you’ll quickly see why you should stop doing that. Right now!

When someone asks why I can’t climb a bunch of stairs, I say I have knee pain and they accept it. They don’t ask what causes the pain. When I say I can’t lift something because I have a “bad back” they accept it. They don’t ask what causes the back pain. When I say I can’t eat gluten, dairy, broccoli or anything else because it will make me sick, they ask why it will make me sick. They want the details. They want the medical explanation. From me!

  • Why can’t you eat gluten?
  • Why can’t you eat broccoli? It’s so healthy!
  • What is it in gluten that makes you sick?
  • Will you ever be able to eat X again?

I’m so sick of those questions! I think my new response will be: the last time you had a cold, what exactly was happening in your body that made you feel lousy? What were the germs doing? Oh, you don’t know every detail of the biology of the human body? Well, ME NEITHER!

I think it’s important to be a well-informed patient. I try to learn as much as I can. I know about the various thyroid hormones and why a Free T4 test is better than a Total T4 test. I’ve read about what every thyroid hormone is supposed to do in the body, how they affect organs, how they should interact with cells. Do I remember every detail? No. Just like I don’t remember every detail of what causes a leaky gut. Or a connective tissue disease. Or how my car engine works.

Maybe my problem is that I am informed. I know a lot, so people expect me to know everything. I try to point out to them that I’m not a doctor and I didn’t spend 4 years in medical school, so my knowledge is limited. And yet, they expect me to have all the answers. What can I say? I DON’T KNOW! There’s nothing wrong with not knowing. But I shouldn’t have to constantly state it, repeat it, explain it, and justify it.

I know what I need to know about my body. I know which foods to avoid. If you want to know more than that, look it up online or in the library. Then let me ask you about it in 6 months and we’ll see how well you remember it.

1 Comment | Educating, Frustration, Gastrointestinal, Insensitive, Intrusions, Rants | Permalink
Posted by chronicrants

Please don’t ask me how I am

September 6, 2012

“How are you?”

“What’s new?”

“How’s the insurance situation?”

“What’s happening with your treatments?”

“Do they expect you to improve?”

I know these questions come from a place of love, but for heaven’s sake, STOP ASKING ME ALREADY!  The problem, of course, is that I have so many great people in my life who care.  I am grateful for that, really I am, but I wish they’d care a bit less verbally!

Every time I speak to someone who I haven’t spoken with in a while (and every time I see my grandparents, who are always anxious for news and forget that we just spoke about it 3 days ago) I get asked some version of these questions.  This can translate to no questions for several days, or having this conversation 5 times in 1 day!

One of the challenges of having crappy health is keeping a healthy perspective.  I know you know what I mean.  Since I am unable to work, I don’t have a job to distract me.  Since I am not able to go out much, I don’t have other “news” to discuss.  Since I’m not able to date, I can’t distract my friends with tales of lurid sex (but maybe I should just make some up?)  This leaves me with a lot of free time to dwell on all the shittiness in my life…. or not.  I opt for not.  I try hard to keep some balance.  I read books and blogs and other useful sources to learn as much as I can about my various health conditions and the possible treatments for them.  Then I pursue those treatments.  I read books and blogs on personal finance and on various personal development topics so that if (when?) I get better, I will have a life that I truly enjoy.  I read novels and watch tv as an escape to a fantasy world.  I spend as much time as I can with family and friends, even if some of that time can only be spent by phone or email.  I spend time thinking about my situation in terms of my various options (or lack thereof) and how I might handle each scenario.  So basically, I try to avoid woe-is-me thinking as much as I can.  Sure, I have my off days – who doesn’t?  But I try to limit them and to focus on other areas of my life.

And it works.  It works really well.  Until a friend asks what my current health status is, and if I think I’ll improve, and what the doctor says, and what I’ll do without health insurance (as of this weekend!!!) and where my LTD appeal stands and and and and and…..  It drags me back into the mess that is my life, and it makes me dwell on the lousy parts and re-realize how uncertain the possible improvements really are.

So I’m done.  That’s it.  No more.  From now on, I will not answer these questions (with exceptions made for my parents and grandparents, who are all awesome and supportive and wouldn’t put up with this ban even if I tried!)  I am going to write up answers to the standard questions, make a personal FAQ, and simply email everyone who wants to know.  And if they don’t like it?  Too bad.  If they really care, they’ll understand that this is what’s best for my sanity, that their questions force me to dwell on the negative when I am trying so hard not to do that.  I will try to explain, and then I won’t answer their questions.  That’s it.  Fini.  End.

2 Comments | Decisions, Educating, Frustration, Insensitive, Intrusions, Rants, Thoughtfulness | Permalink
Posted by chronicrants

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