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 ...

VIDEO: CP AT A (23-MINUTE) GLANCE

My friend Becky, who lives in cold-ass North Dakota with her husband and two small (utterly adorable) sons, is earning a Doctorate degree in ... oh, hell ... Exercise Science (?) (Help me, Becky...) at UND. She's doing a presentation for an assignment about Cerebral Palsy, and she asked me (because I'm kind of an expert on the subject and she's smart enough to use me) to provide a video for it. She gave me a list of questions and told me to let loose. So I did. For 20-some minutes. And then I thought, "What better thing to put on a blog about being a cripple than a video about being a cripple?" and so here is said video, for your viewing pleasure. (Or rather, here's the link, since I got an error message every time I tried to embed it in this post.)

http://www.youtube.com/watch?v=PtMOia5rZAs

Tuckered Tif, Spastic Somnambulist

So guess what?
I sleepwalk.

Yes, you read that correctly.

I, a certified crutch-toting, walker-using, scooter-driving, board-certified cripple, somehow walk in my sleep.

And that's not all. Apparently I take somnambulism to a whole new level by adding words and actions. I don't just sleep walk: I sleep converse. I sleep do stuff. I've lost count of the number of times I've fallen asleep in bed and woken up somewhere else entirely. Then there's the whole, "Why is there a gallon of milk in the bathtub and a loofah in the fridge?" deal.

The crowning glory of my unconscious nighttime activities came in early summer of 2008, when I rose from bed one night, packed an overnight bag containing my toothbrush, my hairbrush, my shaving razor, and every clean pair of socks I owned, put it in the closet, shut the door, and then calmly crawled into bed again and knew nothing about what had transpired.

When I woke up the following morning to get ready for work (I worked at Weis at the time) all my stuff was gone. These days I'd suspect the NSA, but at the time I had a different theory:

Thank hordes of pantheons I worked at a supermarket: I was able to go in early and buy a toothbrush and comb to tame my tangled tresses and dispense of the dreaded Morning Breath. I had to go sockless that day and hope no one smelled my sweaty feet inside their standard-issue black sneakers. Later that night as I was preparing for bed, I opened the closet and there sat my overnight bag, stuffed to the brim with clean socks.

But how did I do it?

Sleepwalking, sleep talking, and even sleep "doing stuff" is not that uncommon; people do these things rather frequently, actually. Somnambulism involves a sort of disconnect in brain circuitry, temporarily disabling the process that keeps sleepers in a state of semi-paralysis -- and, as it follows, in bed. When my brother was 13, he picked up a wallet that had $50 in it that he'd saved by mowing  lawns, walked outside, opened the door in the face of the chimney, put the wallet inside, shut the door and went back to bed. He searched high and low for that wallet for weeks on end, only recovering it in late October when our father cleaned the chimney in preparation for winter fires in the wood stove. 

Our father, a trucker, often mumbled about mile markers and truck stop food in his sleep, and my mother's sister Teena will answer anything you ask her when she's in the right sleep stage. She once confessed to playing hooky from school by holding a thermometer up to a light bulb to feign a fever. Nocturnal ramblings of all sorts are programmed into my being.

 The talking I can understand. Talking requires no legwork or balance, just the ability to speak, which I definitely possess. (I'm kind of a motormouth, actually.) But walking? Putting one foot in front of the other and remaining upright while unconscious? I can barely do that when I'm awake! I'm averaging two falls per day right now. DAY. When I'm AWAKE.

I have a few theories: 

1. I use my crutches, at least some of the time. 

The brain, it would seem, is quick on the uptake even when it's in Sleep mode. If I can pack a bag in my sleep, I can use a crutch in my sleep. It makes sense. I know this theory doesn't always hold true, though: I woke up one night because I stepped on an Allen wrench that escaped from the toolbox like some home repair version of "Toy Story," and I definitely wasn't holding any mobility aids.

2. I fall, but it doesn't wake me.

I'm so accustomed to gravity working really, really well for me that I can often hit the ground without interrupting the flow of a conversation I'm in. I make contact, I roll over, and I keep talking. (Like I said, I'm a motormouth.)  I was once at a church service back in Evansville as a member of the choir, and I took a header during the processional and didn't stop singing. It is entirely feasible that I fall whilst midnight roaming and just stay put. After all, I can't think of a better explanation for waking up on the kitchen floor. I doubt I'd just waltz in and curl up on the tile, underneath which is the concrete, which is ungodly uncomfortable.

3. I crawl.

I do crawl sometimes when I'm awake, more often these days because I can't keep my balance as a malformed biped whose muscles and joints age at the speed of Jeff Gordon driving the Indy 500. You can't body slam the floor if you're already on it, right? I could do some sleep-crawling, sure.(I wonder how you'd express that in Latin.)

But my fourth and final theory is by far my favorite:

4. I am a superhero. 

Think it over: Charles Xavier's X Men have all kinds of wonky powers. So do the Fantastic Four and Miss Peregrine's peculiar kids-that-aren't-kids. And the chicks from "Charmed". And Sam and Dean Winchester. And Sandra Bullock in "Practical Magic". And ...

So why not me? By day a cripple, doomed to a life of clumsiness and repeated violent liaisons with floors and furniture; at night a force of strength and stealth who uses my power for the greater good, as served by putting the milk jug in the bathtub and the loofah on the top shelf of the refrigerator. Tuckered Tif, sleepwalking to the rescue.

Someone might have needed the socks in that bag.

Always be prepared.

Stuff Cripples Want: The Store Bought Edition

When I was a little kid, the Sears Christmas catalog was still huge: pages upon pages upon pages of glorious toys that I would flip through oh-so-slowly, imagining what great heights of joy I could achieve if only the 5-story dollhouse and the Barbie that swam were mine, all mine.

Now I have grown up, and the Sears Big Book isn't big anymore. My catalog love has been transferred to the fascinating world of online lists of accessibility products, which are my new toys. Oooh, I want the Quickie All-Sport Pro with the half-deep seat pan and the high platform foot plate! And oh. my god. Have you seen this wheelchair that can climb stairs??!

I have an entire Pinterest board dedicated to this stuff, and sometimes I click through it and practically drool on the keyboard. I've bought a few of the smaller things I pinned: the extra large heating pad, the knockdown stationary handcycle,  the acupressure mat. When a box comes in with something I have saved up for that will make my life easier or more comfortable or more active, the heavens open and a host of angels starts singing Handel's Messiah. (Okay, so I'm exaggerating. That hasn't happened yet. But I'm convinced it would, if one day the box contained an unassembled  recumbent bike that I could put together with my Dad and then ride and ride and ride until I passed out.)

Perhaps this infatuation with things isn't so great, even if they would make my life easier. After all, I can get by without most of them: all I really need is a pair of crutches and a scooter, though I'd give up some fingers for a decent manual, and my right foot for the Quickie All-Sport Pro with the half-deep seat pan and the high platform foot plate. I was raised to be tough. My mother beat toughness into me with anything she could lay her hands on. My father was better, but he didn't coddle: I was expected to at least try to find a way to do something on my own before I asked for help. If I encountered a physical obstacle, he made me use my brain to figure a way around it. Most of the accessibility aids I had when I was young were things I'd find just laying around: milk crates as step stools, long sticks for reaching, even things like low grapevines if I needed to rest while we were hunting mushrooms in the woods, which had the added benefit of being incredibly like all-natural playground swings.

Thanks to Dale, I'm fairly adaptable. My body might not bend and flex, but my mind does. Put to it, I can figure out a way to do almost anything, comme ci: 

And yet, I like to look at, and occasionally buy, the things someone else's brain has already devised. Cases in point:

1. The electronic dustpan that sucks stuff up so you don't have to bend down. I know I could buy a plastic dustpan with a long handle at Dollar General for like, 5 bucks, but the Eye Vac is just cool. Part of me wants it just so I can push stuff at it and watch it get sucked up. And it would ostensibly eliminate that annoying dustpan dirt line.

2. WeatherChaps Waterproof Lap Cover. There are cheap ponchos in the world. There are garbage bags. And then there's this beautiful creation: a bag I can zip my legs into so my lap doesn't get wet. Since I live in a state that gets an average rainfall of over 40 inches per year (and since I'm convinced most of it falls directly on Lock Haven, does not pass Go, and does not collect $200), this could be a real asset. Something tells me it would beat tearing the bottom out of 20 gallon trash bag and stepping into it like it's a plastic maxi skirt. 

This is the meaning of jealousy.

3. Sonaris Reclining Bath Lift. Okay, so I have a shower chair. Okay, so it's perfectly serviceable. Yeah, yeah, yeah. Sometimes a girl just wants to bathe in vast amounts of bubbles, dammit. And every time I want to bathe in vast amounts of bubbles, I have to risk falling and breaking my neck trying to get in and out of the tub. A shower chair is not equal to a bath lift. A shower chair won't lower me into the bubbly goodness and then lift me out when I'm done. A bath lift will. And a good one like the one you see here will also cost me literally thousands of dollars, which of course I don't have. I wouldn't even have shoes on my feet if it weren't for the generosity of others; forget the cost of a bath lift. But that doesn't stop me from wanting one. If I had a bath lift, I would probably never get out of the tub. I'd just relocate my whole life to the bathroom and live in the tub like some forgotten daughter of Poseidon. It would be so glorious.

So now that I've made my opening bid and listed some superb exemplars, where is this post going? How do I wrap it up? I feel like it should have some kind of moral, i.e. Don't covet stuff; be proud of your adaptability, etc. etc. and so on and so forth.  But alas, I am not Aesop. I'm not my friend Sarah over at The Clerical Error, either. She could make a parable out of this, I'm sure. I do have an idea, though:

Let's have some participation, class!! 

Name one thing you want that you could live without. It could be anything: a new car, a cootie-catcher, what have you. Just name one thing and leave it as a comment to this post. It's been said that you are what you eat; I have a theory that you are what you want. I've shown you guys some things I want. Now it's your turn. What do you want? Why? It doesn't have to be serious. I used to want Polly Pocket play sets, but I never got them. I'm interested in what you guys have to say. Let's have some fun! Spark a discussion, maybe. Have a chuckle or two. (Possibly salvage this post's lack of a moral of the story ....?)

Ready?

GO!

Palsy Problems: #1: I Saw it on Pinterest: Palsy Edition

"Easiest craft ever! Took me 5 minutes!"

*15 minutes later*


"I hate you. Just sit there in your ease and let me hate you."

"Can anyone else tell what this is?"

"The fingers, Igor! If only I had the fingers!"