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.


Should I go out tonight?

February 14, 2013

I think for healthy people, this question only comes up when they don’t have plans, or if they’ve been going out every night and feel that they need a night in. For me, this seems to come up constantly. I’m always weighing how I feel and how much I want to go to something against what I might miss out on in the future if I do go out. Today, the decision is whether or not to go to a Valentine’s Day singles party tonight. Yeah, I know, but it’s not as bad as it sounds. It’s a great group where I’ll know a bunch of people, and I’ve been to their Valentine’s singles party before and it was fun.

I haven’t been doing much lately. Tuesday I didn’t leave the house at all, and just had my sex-friend over for a couple hours. Yesterday I only went out briefly to a chronic illness group for an hour. And today I haven’t left the house at all. So it would be nice to go out.

Then again, I slept horribly last night. I woke up at 3am and only dozed on and off after that. And I have a day full of activity planned for tomorrow. Plus there’s the hassle of getting dressed up and having to put on a happy face. If I knew this event would happen again soon, I’d be happy to stay in and just do this next time, but unfortunately, the next one is a full year away.

Reasons I should go out:

  • I’ll see a lot of friends I really like.
  • I might meet someone interesting.
  • I can practice flirting.
  • Maybe someone will flirt with me.
  • It would get me out of the house and interacting with people.
  • I’m pretty certain I’ll have fun if I go.

Reasons I shouldn’t go out:

  • It will take away my remaining spoons, and possibly cause a deficit.
  • I might be too worn out to have fun tomorrow, which is a one-time family thing.
  • Because of the snow (and the resulting parking shortage) I can’t drive, so I’d have to risk taking the germ-infested subway.
  • I’ll have to either shake hands with a lot of people, or else come up with a reason not to shake hands that doesn’t drive away the flirtations.
  • I’ll have to answer the question “What do you do?” over and over and over and over. I hate that question.
  • I’m not ready to date yet.

I’m leaning towards staying home, but I just can’t decide. I keep thinking about all the friends who will be there tonight, so even if I don’t meet or flirt with anyway, I know I’d have friends with them. What holds me back is tomorrow. I must have energy for tomorrow. An elderly relative is in town and this could be the last time I see him, since I can’t travel and he might not be able to either after this. If I knew I could do both it would be different. But since I can’t be sure….

What would you do?


Why I really want to shovel snow

February 10, 2013

We all have chores that we hate to do, but there’s something about having to ask others to do them that really changes that attitude, at least for me.

I have always hated having to ask others for help, and I especially hate depending on them when I know it’s something they’d Blizzard 2013rather not do either. That’s why I’ve turned down my mother’s offer to clean my apartment. I know she would hate it, and she really doesn’t have the time for it. So I pay someone. I pay someone to come once a month to do the things that I can’t do.

Now the truth is, when I was able to clean, I didn’t do it as much as I should. At this point, I’d gladly do it. Ok, maybe not gladly, but you know what I mean. Unfortunately, dragging a vacuum is too painful, stretch and dusting and grasping a cloth to dust would hurt, and bending over the tub to scrub it out would knock me out for days.  And then there’s the energy it would take, energy that I just don’t have to spare. I know that I can’t do it now, but I sure would like to.

Shoveling snow is the same. I used to think of shoveling as a chore. I live in the Boston area, so it’s not like this was a rare occurrence. I did it because I had to, but I didn’t enjoy it. And now? Now I dream that I could.

We got more than 2 feet of snow this weekend. Since I rent my apartment, I thankfully don’t have to worry about shoveling out the stairs to my building or the sidewalks, but I am definitely responsible for shoveling out my car if I ever want to drive it again before the spring thaw.

After spending two days indoors, I felt antsy yesterday, so I put on many layers and went for a slow walk. I chatted with neighbors as they shoveled out their cars and driveways, and I was amazed at the envy I felt. It’s backbreaking work. It takes hours. It’s thankless. And I wanted to be doing it. The jealousy practically dripped from my mouth as I commented on what a good job each person was doing.

I’m lucky. A neighbor had offered to help me out. And several of the other neighbors who I had just met on my walk joined in. I had been friendly to them, and they saw me help someone whose car was stuck (since I couldn’t shovel or push, I drove the car while the owner and others pushed it.) I guess it was a bit of karma or something. Or maybe it was the damsel in distress effect (let’s face it, there are men who just love to help out a “helpless” woman and I told them that I had a “physical condition” that stopped me from shoveling.) What it was, the big relief is that my car is free now. Still, I worry about what happens when I drive someplace. If I come back and there’s no free spot, I won’t be able to shovel out a space on my own. And what about the next time it snows?

I’m not naive. It could be much worse. But at the same time, this is frustrating and stressful for me at a time when I really don’t need more frustration and stress. And it won’t go away. I continue to hope that my health will improve. One day I may be able to dust, but my guess is that shoveling snow will always be beyond my abilities. I want to be self sufficient and right now that’s not an option. Some days I can accept that, some days I can’t. I guess this is one of the days that I can’t.

How are you handling the winter weather?


What to say to illegal HP parkers?

February 15, 2012

Anger.  Disbelief.  More anger.  How can someone be so selfish, so arrogant, so self-absorbed that they think it’s ok to illegally park in a handicapped parking space?

I’ve written about this before and I’m sure one day I’ll write about this again, but it’s an important topic and one that seems to affect me often.  This time, it was last night.  I was in a lot of pain, but I was determined to go out.  For one thing, I hadn’t left the house since I got home at noon the day before.  That’s a long time to be stuck indoors.  Plus, if this followed its usual pattern, there was a good chance things would get much worse soon and I might not be able to leave my apartment for several days.  Besides, it was a singles party on Valentine’s Day!  Where better to enjoy some flirting?

I could barely walk, so taking the T was out of the question.  I knew that walking to the car would be tough, but if I could manage that, then I’d just have to hope I’d get a parking spot near the place.  Hopefully it would be the handicapped spot directly in front.

As I arrived at the place, I saw the car in front of me take the handicapped spot.  Damn!  There were no others, so I circled, and finally parked in a handicapped spot a block away.  It was not a fun walk (actually, limp) to the place, but I made it, and knew I’d just have to be careful to leave early enough that I could make it back to my car again.

After going through all of that, imagine how I felt when I walked past that car and saw that there was no decal on the license plate, and no placard on the visor or on the dashboard!  What gall!  I would have yelled at them, if I had any idea where they were.  I wanted to leave a note on their windshield, but I was too angry and I didn’t have a pen or paper.  They must have seen the sign – anyone who parks in Boston knows to check out the many complicated parking signs, and this one was pretty obvious.  So what then, they assumed it was ok?  That no one would notice?  It took 20 minutes for me to circle around twice, finally park, and then walk back.  And I sure as hell noticed.  How many others would need that space while this jerkwad was squatting there?

There is NO EXCUSE for illegally park in a handicapped parking space.  None.  Zilch.  Zero.  Nada.  It will NEVER be ok!

So back to the part where I didn’t have a pen and paper.  I’m thinking that I should start carrying flyers in my purse and in my car and leaving them on the windshields of offenders.  I’m ready to do it except…. I don’t know what to say.  Crazy, right?  Sure, I’m a talker and a writer, but this is different.  I want to come up with something that gets their attention and makes them actually think, or at least cringe.  I’m thinking I should go for guilt.  Here’s my first draft:

Because you parked here, someone who needs this spot can’t have it.  Be glad you’re healthy enough to not need it!

But I ran this by a friend and she said that it’s too earnest.  So what instead?  Your ideas please!!!  Post a comment here, tweet me (@CIRants) or send a note (msrants at gmail).  What can I say that will simply get someone to think a bit before they do it again?

I promise you, when I get the right line, I will print it on brightly colored paper and stick it on the windshield of every offending car I see.  I can’t wait to get started.

 

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Dreading the dew point

September 14, 2011

I normally post in the evenings, but this morning I’m so anxious, I figured it was time to write earlier.  It’s mid-September and after some lovely cool days, today the temperature and the dew point are both up, which means my pain is too.

Now, on a different day, this might not be so bad.  It’s going to be hard for me to walk, so on a different day I would drive to work.  I also have plans after work, and I’m stubborn and refuse to miss them, so I’d drive there too.  Then afterwards, I would drive home.  In between, I’d stay off my feet as much as possible.  It wouldn’t be ideal, but I’d make it work.  After all, this is why I bought a car.

Unfortunately, today is not a typical day.  Thanks to city construction in my neighborhood, there are very few parking spaces for a whole lot of cars.  That means that if I drive to work, I’ll lose my parking space (which is already several blocks away), and when I get home, I’ll have to park so far from home that I may not feel up to walking it.

There’s no good answer here, just uncertainty, frustration, and pain.  Wish me luck.

 

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City living: good or evil?

September 11, 2011

Now don’t get me wrong, I generally love living in the city.  It has so much to offer.  But that doesn’t mean there aren’t days that are incredibly difficult.  And in all fairness, if I lived in the city but had a driveway, this wouldn’t be an issue.  Sadly, I don’t have a driveway, so the next few weeks are going to be very difficult.

 

Last year I got rid of my relatively-young-but-laden-with-problems car.  I thought about not getting a new car.  For the first time, I was using public transportation to get to work.  I could walk to the grocery store.  I could use Zipcar for trips outside of the city.  But now matter how many work-arounds I considered, I always got stuck on what I’d do on the days I couldn’t walk even the two blocks to the closest Zipcar spots.  What then?  I’d be stuck.  So I got a car.  3 weeks later, someone crashed into it while it was parked.  It was totaled and I couldn’t drive it for 3 weeks while it was getting fixed.  Just a couple weeks after it came back from the shop, it got stuck in the ice that had formed where I’d parked, so I couldn’t drive it for about a week.

 

Now, the city is doing construction in my neighborhood, so from 7am-7pm I can’t park anywhere near my apartment.  Depending on which notices are correct, this will be for 2 or 3 weeks.  I’ve been asking friends if they might have an extra space in their driveway that I can use.  If not, I’ll park in another neighborhood, then walk or take the bus home, and go back every few days to move my car (they ticket if you stay in the same space for too long, even when it’s a legal space!)  I just have to hope that I don’t need the car for the next few weeks.  Lately, I’ve been driving to work more than taking the T (our subway) because I’ve been having fatigue and/or pain.  I really hope that stays at bay for a while.

 

I love living in the city overall.  I really do.  But I have to ask myself: why did I buy a car if I keep having weeks at a time that I can’t even get to it?

 

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Wanting solid info from the RMV

September 7, 2011

It’s not like I want to have a handicapped placard.  I would like nothing better than to be healthy enough to not need one.  Since I do need the placard, I use it.  I just wish I knew more about the laws around it.

After a lot of searching, I finally found some info here and here on the MA RMV web site.  After all that searching, the site doesn’t inspire confidence.  For example, it provides information on handicapped plates, but when I tried to get one years ago, I was told they aren’t offered anymore, only placards are offered.  Either I was given wrong information, or the site is very out of date.  Both seem very possible.

Now, try finding info on where you can use it!  #7 in the FAQ seems to be the place, but it’s incredibly vague (and wrong.)  Can I use it in HP Van spaces if I don’t have a van?  It doesn’t mention that.  I can disregard some parking meters but not all – that’s NOT HELPFUL!  Why can the MA Port Authority manage to not exempt placards?  Do others do it too, or is it just them?  Please be specific!  And about all U.S. States recognizing the MA placard, well, maybe that should be more specific too.  Parts of Washington D.C. didn’t, the last time I was there.  I also stumbled upon a city in Connecticut this summer that didn’t recognize them.  Why is this?  And why doesn’t the web site mention it?  And according to the FAQ some parking rules must be followed but not others.  What if there’s a 2 hour parking limit?  Do I need to obey that?  If so, doesn’t that run counter-intuitive to the exempt meter rule?  If not, then say so!

I know many people who have had the same frustrations.  When I call to ask questions, I can’t seem to get someone on the phone who knows what they’re talking about.

These placards are provided by the state RMV.  Many rules apply to them.  Would it be so horrible to let us know what those rules are?

 

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