Saturday, January 23, 2010


Dave at Rolling Around in my Head wrote a post about an accessibility issue he had in a ridiculous situation, that really opened my eyes my bit. And then, over at Migraine Puppet there's a piece that addresses a similar issue: the importance of educating others about your needs. And then there was the eloquent and gorgeously articulate article by meloukhia over at FWD that explores the idea of good cripples vs bad ones and how accommodations are not special treatment. All of these perspectives got me thinking about what accommodations I require to be comfortable and who expects them and who ignores them and how most of us are blissfully ignorant of others' needs until it hits painfully close to home.

Even before the headaches, I'd get invited to someone's house for dinner, and there would be issues. I'd warn them ahead of time that I'm largely a vegetarian. But regardless of how often some people had been reminded, I can't say how many times I've arrived at someone's house, sat at their table, spread the napkin over my lap and gotten ready to tuck in... only to discover chicken bits in the rice, and a roast, and bacon in the green beans. Everyone looks around awkwardly. I eat bread and smile politely while inwardly rolling my eyes and yelling at everyone. Honestly, I don't get it. Did they forget? Do they expect me to eat meat as an exception? Was it punishment for being high-maintenance? Why invite someone to your home as a guest, and then starve them? I have learned to offer to bring a dish, something for everyone but mostly for me and my "special needs". Even if it is declined, often I'll bring a little something anyway, it's saved me more times than not. ("We made the mashed potatoes with chicken stock. I hope that's okay!" or "Oh yeah, there's meat in that spaghetti sauce. Oh, you'll be fine!") I have learned to accommodate myself.

Now that I have this neurological storm happening in my head at all times, I have even more special needs. But these needs aren't self-inflicted, like the dietary choices I've made. And being without the "special treatment" doesn't result in a meal of bread, it results in pain. So when others are stubbornly unaccommodating of these needs, I am not as polite as I used to be. Here is a transcript of an ACTUAL CONVERSATION I've had with someone "close" to me:

Me: Hey, that's loud. Can you turn it down?

Them: That's not loud! You used to like music. You should hear it when you're not here.

Me: Yeah, it's still loud and is hurting my head, can you turn it down? Or, better yet, off?

Them: Um, really? (Huffily moves to turn it down, but just the tiniest bit.)

Me: More?

Them: (scowling)

Me: Either you turn it off or I leave. Pick one.

I have this conversation ALL THE TIME. Or similar versions of it. I don't feel like I am asking a lot. I put a lot of thought and work into not having to ask others for help. That's why I wear earplugs and sunglasses and a hat and I bring an umbrella, some tiger balm, a scarf and gloves, several medications, and a bottle of water everywhere I go. But, asking someone to turn down the television or turn off the lights or to back off the drakkar noir or to simply tolerate my unabomber costume in public without constantly mocking me is apparently asking a lot because the DRAMA. I. START. you wouldn't believe. And I really am a nice person. I know how to say please and thank you and smile and look humble while asking a favor. I get social niceties and how I FOREVER OWE YOU ONE because of that time we didn't have the radio on in the car. It was such an inconvenience, I know.

Ahem. Changing the subject...

I went to Denny's earlier this week with a friend. I don't get out a lot. This dinner out is sometimes my only social activity, besides visiting my parents. If more than a month has passed since my last venture, I force myself to this dinner, whether I feel okay or not. It's one of my few last shreds of normalcy, spending a late night at a crappy restaurant talking over pancakes. It is vitally important to me. So when we went there this week, and our visit was cut short by a visit from a perfume drenched hostess, I was *bummed*. I said nothing to her at the time, I just sprinted out of there like I was on fire while my friend paid the bill. I ran into an employee outside, one that we frequently laugh and joke with, and couldn't help but burst out with, "The hostess in there is wearing SO MUCH cologne!" I said it lightly, but pretty dramatically, still a little high on the adrenaline of my rapid escape. She laughed uncomfortably, as one does when put in an awkward semi-friend/semi-customer service issue and asked if it gave me a headache. I paused and said yes, it did. I'm not sure if she knows about my head specifically or if she was just commenting on a normal side effect of exposure to toxic smells. I didn't want to get into it. And I certainly didn't want to put her on the spot, as the probable subordinate of the scented lady and a sort-of buddy to us. So, I smiled and waved as we got into the car and mentioned to my friend that I might write an email.

I got home and didn't. Several days passed and I didn't. Why not? I didn't want to start trouble. I like the restaurant and the employees and I am worried that somehow my name would be on the complaint and they wouldn't like me anymore. I KNOW, ridiculous, right? First of all, this Denny's is not my friend. I can go somewhere else if I have to. I might even like it better somewhere else. I've oddly attached to the idea of the restaurant as a place of safety, a place to feel young and silly and frivolous with my friends again. Second, I'm not the one starting trouble. I'm the tattler. I didn't wear a gallon of perfume and then go work in food service. I was merely offended by the person who did. This brought me to my final conclusion, and the push I needed to write a detailed note to the PTB at Denny's: I'm not the only one who doesn't want to smell cologne while I'm eating. I don't know what the ratio is of offended to non-offended people, but I am this close to convincing myself that I am a kind of freedom fighter, liberating us all from the oppression of other people's heavily scented insecurities, at least during mealtimes. Like Che. Or Mandela.

So, I sent the email. We'll see what happens, if anything.

Anyway, my accommodations are weird, by most standards, and I understand that. That's why I usually hold the yelling in until I get here. Sometimes, though, I feel like I am accommodating other people's ignorance, and that's becoming less okay with me.


WinnyNinny PooPoo said...

Odors are the problem I had the most trouble dealing with. How do you breathe and not get odorfied without wearing a Darth Vader MasK?

You are your own best advocate!

Stephanie said...

I hold my breathe a lot. Hah. But, seriously, I do. My head doesn't like that much either, but it's better than the alternative sometimes. :) Holding my hand in front of my nose and mouth can help, or I'll put a little heat rub on my fingers and just touch my nose. The mint/cinnamon smell is the best block for me. I've also pulled my shirt up over my nose, which gets some staring. Often I just have to leave. I plan on acquiring a few surgical-type masks to see if they help. The darth vadar mask sounds like a solid investment. I would have loved to have one over christmas.

It's funny, I used to be really vain. Past me would be HORRIFIED by present me. Past me was kind of a twit.

MigrainePuppet said...

Great post! I think the more 'bad Migraineurs' we have out there, the more progress we can make. I still find it hard to be 'bad', but know it is better for us as long as we can stay calm and reasonable while doing it which is not always easy. It sounds like you did just that with your letter. Good luck!

Anonymous said...

Wow - that person who is "close" to you is a jerk. My favorite people are those who see my cringing at lights or sounds and simply put the blinds down, turn off the lights and turn off the music or TV with a simple "Do you have a migraine?" - or better yet, without anything but seeing my distress (as well-hidden as I try to make it). Those are the angels in disguise. Anyone who would be so insensitive as to behave so rudely knowing I'm in physical pain - wow. I'm so sorry to hear that.