I Get By With A Little Help From My Friends

Surprise, surprise -- I'm stuffed to the gills with pain pills after one of the most painful days in my memory, and I still can't sleep.

I'm going to struggle some with this post, mainly from trying to keep hyperbole out of it and hand it to you real. I also want my family to know that I did in fact get something out of going to D.C., which was absolutely beautiful. I was thrilled beyond measure to actually see the Capitol building, for instance. I watched a little girl fly a kite on the city common, walked through a tunnel of twinkling lights that looked so much like stars it took my breath away, got a picture of a genuine-article triceratops skeleton to send to my friend's little boy, who is bonkers over dinosaurs, and saw paintings so real they looked like they could tumble right off the canvas and into your lap. I had good experiences, and family time that I wouldn't trade for the world, especially since a REALLY BIG THING is slated to change all our lives very soon. A very good change, but a big and somewhat scary one nonetheless.

But unfortunately, a lot of my time in D.C. was spent in pain. A lot of pain. More pain than I have experienced in years -- and that is not hyperbole. I got off the bus and said, "My legs are strong, and I can do this." A bit later this changed to, "My legs are actually quite weak, but I can still do this." This then became, "I can't do this, but I'm doing it anyway." and finally, "I can't do this." When I realized I couldn't get us to the Museum of Natural History no matter how hard I tried, I sat down and wept. I wanted to -- oh, I wanted to SO MUCH -- but at that point I was forcing my feet off the ground by sheer will alone. My legs had stopped responding to my brain when my brain told them to move. My legs were just like, "You know what? Fuck you. Fuck you and that shiny red thing you walked in with. We hurt. WE QUIT."

I have never felt so ... disabled before. I've been disabled for my entire life, but somehow that fact never hit home like it did for me today. I sat alongside a path and said to my Mama and sister: "I just really don't like not being able to walk." And then I was crying. It was a beautiful day in D.C., meant for a fun family day-vacation, and there I was, losing my shit in front of God and everybody.

Now I understand why most people with my condition stop walking by the age of 25: walking hurts. Oh god, it hurts. I do yoga every day now, and walking still hurts. I take daily medication to make it easier, and it still hurts. Not just a little stiffness, not just a little discomfort, but shooting, stabbing, cramping pain that gets in the way of the things I want to do and interferes with my quality of life. There came a point during this day, when I had to grit my teeth and force myself to take step after step, when I would have happily surrendered the struggle and agreed --with zeal -- never to take another step for as long as I live. That's not hyperbole either. I was in agony. Mama and Biz gave me so many breaks, every block or half a block; every other bench, a random set of stairs, a convenient wall... and still I hurt, and it just kept getting worse.

And you know what? That makes me angry. That makes me sad. That pisses me off. That scares the daylights out of me. All I wanted to do was take a damn walk, for crying out loud! Instead I ended up all teary with impotent rage, envying ever jogger, every pedestrian who walked with ease. A kind of poison crept into my heart for a few minutes: I would look at these people and think, I hate you. And I hate you, too. And you. You can walk. You can really, truly walk, and I can't.

Maybe having these feelings makes me a selfish, horrible, self-pitying jackass. I don't know. All I know is that I have them, that I am at once saddened and frightened and angry and jealous. If I could pluck palsy out of my body and brain like reaching into a magician's hat and pulling out a rabbit, I'd beat it to death with my bare fists. I realize this sets me apart from some of my peers, who wear CP as a badge of honor and would never give it up. I would. I'd hand it over in a nanosecond for a chance to have just one stroll down a beautiful city street with my family, minus the PAIN!PAIN!PAIN! alarm going off in my head every time I put one foot in front of the other.

It's going to take me quite some time to come to terms with all that I'm feeling right now. I'm gonna have to cry some more. I might even have to slam a few doors, throw some things, and screech at nothing in particular. I'm confused and depressed, so if I seem off, that's why. If I don't seem off, please know that I'm still struggling and I'm going to need some help. You're allowed to ask me if I want to talk about it. The answer may vary depending on the day, but yeah. I also like hugs. And if you hug me and I randomly start weeping, please don't be alarmed.

I hesitated to even write that last paragraph, because those of you who know me know that I don't usually ask for help like this. And I don't want anyone to feel as if I'm surrounded by grenades that might explode any minute, or that I'm standing on a cyber streetcorner screaming, "Pity me!": I'm still Tif. Just check in with me once in awhile, yeah? This is a hard thing to go through and an even harder thing to admit, and I need a little help from my friends.

Thanks in advance,
Tif

Radio Frequency Identification: Perfect Hearing in a Loud World

So I have super-perfect hearing. I can hear so well, it's almost like my brain is equipped with sonar. I have aced every hearing test I have ever been given, even with frequencies outside the normal range of hearing for people. I can't walk right, I can't see right, but hot damn, I can hear. I also have a better sense of smell than your average Jane, which is not as enjoyable as it might sound. Yes, I can smell delicious food and freshly mown grass and other delightful things more intently than others can, but I can also smell cabbage boiling from 5 floors down and Dumpsters from a block away. (And am I bragging? You bet. It's not often I get the chance to be physically superior.) Supersonic hearing comes with its pitfalls too, although there are also several enjoyable things about it.

Cons:

1. I often hear things I could have happily gone my whole life without knowing. What has been heard cannot be unheard.

2. I never intentionally filter noises out, but it happens. Too much noise is too much noise. This automatic shut-off switch operates outside the realm of my will and enables me to be startled, and then to be teased about being startled, thus:

"Whaddya mean you didn't hear me sneaking up on you? I thought you could hear everything." Certain individuals have been informed that if they ever do this again, they will be harmed.

3. I.Can't.Stand.Clocks. Oh my god, the ticking and the tocking...!!!!

4. Ditto electronica or New Wave music, or live Rock; car and/or fire alarms;TELEPHONES (the lowest ring volume is never, ever low enough), and the annoying, mosquito-like whine of many appliances, which often does not bother those with standard hearing, but which drives me to distraction.

Sound can be painful. I'm sure you all know this. You know how your ears and head feel if you stand too close to a jackhammer or a jet engine? That's how it feels to encounter certain frequencies when you have perfect hearing. I have left venues grimacing and clawing at my head because someone played too high a note on an electric guitar. I have also had to risk being thought rude because I stop up the ear closest to the stage. I try to do this discreetly, under my hair, but sometimes people see. I have shrieked right along with the fire alarm -- that many decibels, straight to the brain? It's like something has crawled into my head and is tearing at my nerve endings. When I was at USI my apartment was right across the street from the storm siren, which was tested every Monday morning at 11. I quickly learned to be far, far away when this occurred. (Ever heard the term skull-splitting?)

A former girlfriend of mine was deaf in one ear. We had television volume wars:

"Jesus! I can hear that on the next block!"
"Huh?"

Perfect hearing: Pros

1. I can often tell what's around me even with my eyes shut, based on how objects displace the air around my ear.
   
2. I get to stupefy my friends by responding to dog whistles. I love doing this. It makes me feel so delightfully smug.
   
3. In the event of an emergency, I will hear a neighbor's over-the-door alarm or the elevator alarm long before anyone else does.
   
4. If you whisper about me as you're walking away, I will hear you. And I will shame you. And if you're the kind of person to do that, I will enjoy shaming you.
   
5. I'd make an excellent spy. Maybe I should hit up the NSA for a job. I could sit in a coffee shop with a newspaper and foil terrorist plots. 

Now I know why I can't get a job! I've been aiming too low! Excuse me while I go phone various branches of the federal government...

In Which The Braces May Make the Woman

Ah, feet. I've always hated feet. Feet are disgusting. They stink. They're ... feet. Gross.

In particular I've always hated my own feet. They're mutant. On top of the insult of inheriting my father's almost obscenely ugly toes, I have displaced metatarsophalangeal (MTP) joints in the big toes on both feet (bunions, kind of like), and rigid contractures in the proximal interphelangeal joints on the little toes of both feet, and plantarflexion/pronation/flat-footed issues. The pictures I'm about to show you are not of my own feet, because just ... no. But thanks to the wealth of information on the Internet, I can give you an idea of what I'm talking about, thus: 

Exhibit A

Exhibit B

Exhibit C

Now put all that together, eh?

The bottom line is, my feet are horrid, they're starting to seriously bother me, and they need to be fixed.

The first thing I noticed was the swelling. My feet are never the size they should be anymore -- now they're one to three times larger, depending on the circumstance, and when I walk, my toes curl tight and I'm almost always going along on the outsides of my feet. THAT, at least, has been true since I learned to walk 25 years ago, but the swelling -- and the pain -- is new. So I took myself off to the doctor today, la di limpin' da, and now I have referrals to both a podiatrist and an orthopedist. Lovely. I wish I could say I'm more enthused.

Apparently what's happening is this: age. The doctor was very emphatic at saying that at 29 I am certainly not old, but comes a point when one's feet don't give a damn how you've walked on their crookedness and been fine for a quarter century: tissue starts tearing and fissuring and letting fluid build up. "Repeated micro traumas" she called it.

My mother was the first to refuse the surgery to fix this, and then when the surgeon asked me, I refused it too -- after all, my feet had worked well enough up to that point (18 years); what reason had I to think they wouldn't continue working? 

"They're going to bother you someday," said the surgeon, and, "Talk to me then," said I.

Ah, the foibles of youth. Or maybe not?

After all, I've seen pictures of this surgery. It's horrid. It involves breaking the feet, setting them straight, and then fixing them into place with rods. And I ask you, WHO THE HELL WANTS TO GO THROUGH THAT?! Also, according to people who've had it done, it's excruciatingly painful for months, and if you should happen to walk too much ever again, there's a danger of walking the rods out of place. It makes me sad to admit there's probably not much chance of that particular complication at this point, but it certainly would have been an issue 11 years ago.

Of course, there's always a chance it won't come to surgery. There's always bracing -- there are all kinds of new bracing techniques now that I will certainly try first, even though most of the splints look like Medieval torture devices and I have a feeling they'll make my feet hurt even worse than they already do. I had leg braces with corrective toe straps as a teenager, and they made my feet hurt so much I could barely hobble. At my first appointment after leaving home, I admitted to my specialist that I never wore them and she might as well stop ordering them put on to my AFOs. Then I stopped wearing my AFOs altogether because there was no one to make me, and THAT was a, "young and stupid" mistake FOR SURE.

So it looks like one of the first steps will be getting new AFOs. Part of me is looking forward to this, strangely enough -- maybe, in spite of appearances, the new kinds of corrective attachments won't be so bad after all. Maybe they'll actually help. I can hope, right?

In an effort to make myself feel better -- and to cushion the blow to my ego from the insistence of my ego when I was 18, which is now biting me in the feet, ha ha, bad pun, and irony be damned -- I'm giving serious consideration to the color and/or design I'd like on these future new braces of mine. I'm thinking purple. Lots of purple. Definitely purple, maybe with lavender swirly bits ...