Zombie Babies

I made the mistake of going out in public alone with two children. I thought it would be fun to take my 8 year old niece and my 3 year old son to the Halloween store. We’d get out of the house, laugh at monsters, she’d get a goodie and my kid would finally get his costume. I can conveniently blame my stroke for the fact I can’t create a homemade costume for my son, but the truth is I wasn’t terribly crafty pre-stroke either. I also have a black belt in procrastination. Last year he was happy to run up and down the aisles, screeching and giggling past the zombies and werewolves. I figured this year would be the same, which is why I knew I couldn’t take him alone. So you see, enlisting the help of an 8 year old kid is pure genius on my part!

Not.

My niece is an awesome kid. If I ask her for help, she helps. That wasn’t the issue. The issue was that we were in public…with a toddler. Toddlers are unpredictable. It’s easy to kid yourself into thinking that two identical scenarios will play out the same way. A year is an eternity, yet I was somehow convinced he’d be squealing with joy like last year. My son proudly held my niece’s hand, much like a stalker whose prey just smiled at them at a book signing, and stepped into the store. We were greeted by a crowd of zombie babies. I saw my son’s face go from glee to “what the ever loving fuck!” He let go of my niece’s hand and tried to scurry up my leg like a rabid monkey. 

We laughed and pointed at the zombie babies to show him that they’re fake and really quite funny. He smiled but would not let me put him down. Here I am, disabled mom with two kids and an agenda, and I can’t take a step because I’m not sure my body can. Oh yeah, I was also holding my cane. My left hand is the only one that can use my cane, as my right side is too weak and uncoordinated. My left arm is also the only one that can hold my son. Great. Fantastic. 

Halloween 2010. OK so he's seen those babies before. Clearly he loved them the 1st time.

I did what any mom would do. I handed my cane to my niece, tucked both my arms under my son’s butt in a tight embrace, and waddled with him over to the toddler section. I’ll be damned if I was going to get all the way to the store and not check out the costumes.

I was afraid my arms would fall off, or worse that I would fall, so I had to put him down. That lasted about 10 seconds. The teenagers in the store weren’t helping, running around with bloody masks and hitting the buttons on every screaming, freaky ghoulish noise-making prop in the place. The vision I had of giggles, costumes and tasty treats quickly faded into reality. Well not faded, more like popped me in the face revealing the truth of what we were: a very bored tween who was perfectly happy draped over my couch watching the Disney channel before her crippled aunt opened her big mouth about how fun the Halloween store would be; a scared shitless toddler who was frightened into suddenly forgetting how to walk and wondering who’s sick idea this was (oh yeah, it was mommy’s); and an extremely frustrated, out-of-breath mom who’s kicking herself for being so stupid and also quite pissed off at the shitty selection of costumes for little boys. I mean seriously! No wonder my boy begged us to just let him be Veruca Salt. Girls have all the cool dress-up shit.

I think we lasted about 15 minutes in the store. When we got home, I let them eat whatever junk food they wanted and ordered my son a costume online. Sucky McSuckerson, that’s my name! Disappointing children is my game!

Another pic not taken that day. It's not the first time they've been given sugar as a consolation.

This is usually the part where I share what this experience taught me. I wish I could. But you see, I didn’t learn shit that I didn’t already know. I know I can’t go in public with my kid without another adult. It sucks. It totally fucking sucks. I suppose it’s good that I tried. I have to be reminded sometimes of my limitations. I’ve been so empowered by the things I’ve overcome that I sometimes forget there are things that I won’t. I am not a pessimist. I’m a realist. And when the line between the two becomes too blurry, you need to put yourself out there until the line becomes clear again. Holy crap. I think I just discovered that disappointment can be healthy. Tada! There you go. That’s what I learned.

Viva La Gellie

Where does one go on vacation when they’re disabled? Where does one take their bedazzled cane and pimp ass limp? To Vegas, bitches!

My husband and I have been long overdue for a vacation. Las Vegas is about a 3 hour drive from where we are in Southern CA, and we haven’t gone since we had the kid. We’ve been through so much financially, physically, and emotionally this past year. If there is one place on Earth you can cleanse your body and mind of negative energy, it’s Sin City. Playing and laughing shake all that negative shit right out of your system, and alcohol kills the rest. Go ahead and enjoy that juice; I’m cleansing my body with vodka and gin.

The week leading up to our trip, I was a nervous wreck. We’ve been to Vegas many times, but this was my first time going as a cripple. I feared what I was getting into, as I knew it would be a very different experience. I wouldn’t be able to casino hop (or regular hop for that matter.) Vegas is all about walking, even if you never leave your hotel. You still have to walk to get to restaurants, shops, gaming, and although it’s all one building, it’s a long way to go.

We made our hotel reservations for Sunday – Tuesday. This way we not only saved money, but spared ourselves the insane weekend traffic and crowds in the casino.  When we arrived, we looked for the Valet sign, and just our luck it read “Valet FULL.” My husband flashed my Handicap placard and the young man opened the chain to wave us through as an exception. That’s right. I was there 5 minutes and already winning.

This small gesture was a big lesson for me, a lesson that I’m still trying to master.

Lesson #1:  Let people know you’re disabled.

I may have mentioned this before, but it’s important so let’s review: No one gives a rat’s ass that you can’t walk because it doesn’t affect them. It’s a bittersweet moment when you realize that the whole world doesn’t have your disability on their minds every moment of the day. It’s an even tougher realization that most of them don’t even know! Pfft! What?!

Um, excuse me sir, I do realize I have a cool gangsta walk but it’s actually because I can barely walk.

You don’t always have to say “Hey fucktard! I can’t walk that far!” despite how tempting it may be. I’ve found that usually flashing my cane or casually mentioning I need something closer works well. We went out to eat several times and each time we got a comfy booth close to the entrance. The particular tower our room was in was closest to the Front Desk. Check-in time wasn’t until 4pm but they let us check in at 12pm. All these little things add up to quite a bit of saved energy. Energy I needed for the Video Poker machine and bending of arm.

Pre-stroke, my husband and I would go grab a bite and a drink, and then we’d hit the tables. Sometimes we stayed together and other times I’d go play Blackjack or drunk shopping while he hit the Poker Room or Craps tables. It was awesome! We knew where to find each other and if either of us got lost, it was just an opportunity to explore the place better. And collect more drinks along the way of course.

Ah…Vegas. Where I can have booze for breakfast, wear lingerie for an outfit and smoke on the elevators! A glorious place indeed!

I should probably mention that our toddler stayed home with his Nana.

Also, I didn’t have a single cigarette. Not one. Not even a little puff. That has happened maybe…never. Definitely has never happened on a Vegas trip.

Lesson #2:   Let Go of I Used To...

The biggest difference with this trip was that we didn’t have an itinerary. We have always made it a point to see a show or visit an exhibit while we’re in Vegas. I have an overwhelming fear of schedules these days. I don’t know what my energy level will be one day to the next, so committing to something that costs $100+ per person, plus getting all dolled up, plus making our way through a crowd to get to a destination at a specific time is not at all my idea of fun. It sounds painful and exhausting. And that makes me feel guilty because I just ruined everyone else’s fun by being a drag.

We decided that this time it wouldn’t matter. We’d let the whole trip evolve naturally, even if it meant we stayed in bed all day, drunk and watching cartoons. That sounds easy enough. Ha – it wasn’t. By the 2^nd day I was getting anxious.

My old self was clawing at my brain to get out and explore. We had gone out to eat and even had a cocktail at the sports bar, but I felt like we had to do something. We went for a walk through some of the shops but I learned quickly that was a big mistake. My legs started to feel like lead, and it wasn’t just the foot-tall margarita. Luckily there are slot machines everywhere, which mean there are chairs to rest in everywhere. I made my way to a Video Poker machine that was just outside the elevator to our room. I won $150, went to the gift shop and bought a bottle of Grey Goose, then went back to our room. I sat in an armchair feeling like I failed. I was supposed to be partying and here I was sitting in a hotel room. I wanted to play Blackjack, but I can’t sit on bar stools. Playing Craps is a stand-up activity which means I wouldn’t last long, and my arm can’t reach over the side to place my chips anyhow. Everything required my legs and they were the one thing I just didn’t have.

This margarita is sitting on the floor of my hotel room. It stands approx 18" tall. Holy brain freeze, Batman!

My husband reminded me that the whole point of the trip was not to worry about anything. So we took a nap – no, that’s not code for hanky panky. We’re parents on our first vacation without our kid! When I say we slept, I mean we actually checked the fuck out and enjoyed the joyous sound of silence. We awoke 3 hours later, had P.F. Changs delivered to our room, and popped open the Grey Goose. It was about 10pm. I was sitting on our bed drunk, eating Lettuce Wraps, and watching the Star Wars episode of Family Guy, laughing my ass off with the love of my life. It was the best moment ever.

Lesson #3:  Appreciate a Push

In gambling, a Push is a tied bet. If you’re playing Blackjack and your cards show 18, and the dealer pulls 18, you don’t win. But you don’t lose either. It’s a Push. Gamers may breathe a little sigh of relief but they’re typically not happy about a Push, because it isn’t winning.

Medical drama tends to make people reflect on things differently: where they’ve been, who they were, what does that mean now. It’s easy to lump your experiences as a survivor into wins and losses, triumphs and failures. Exploring the world as a disabled person has taught me that most of life is actually a Push. I can’t experience people and places the same way I did before. A year ago I would have considered that a loss. Now I’m realizing it isn’t. The Dealer hasn’t won this hand. She has shown me a hand just as good, only different. I’m not winning anything but I sure as hell am not losing. I’m learning to appreciate the Push.

Breakin'...

This word resonates with me for different reasons. There is of course my breakin’ body, as I’ve become disabled; my breakin’ heart, as I’ve lost a certain quality of life; my breakin’ back as I bust my proverbial balls to overcome paralysis. But if you’re like me, Breakin’ is of course a classic 1984 break dancing movie (which incidentally was Ice-T’s film debut.)

This afternoon, after stuffing myself with Korean BBQ, I was in the car rockin’ out to a totally rad song. I can still bop my head normally and pump my good fist in the air, but it occurred to me that I’ll never co-star in the remake of Breakin’. Sad, I know. Fancy shmancy foot work is probably not in the cards for me.

Neither are chopsticks. I married a man who is half Asian and I had already shamed him by not mastering chopsticks before my stroke. Today I sat in a Korean restaurant staring at my food realizing there is no way that chopsticks are in the cards for me either. I got to thinking, “Well shit. What else can I not have the pleasure of doing?” Here’s the rest of my list so far:

·         Calligraphy

·         Take my shoes off while standing up (can’t stand on one leg and remove shoe with other foot when one of them is paralyzed.)

·       Graffiti artist. I can barely hold a pen let alone a can of spray paint and push that little button down with my finger.

·       Stripper pole. Holding on with just one arm may be a safety hazard. And hopping on one leg may not be that sexy. (Then again it does involve hopping…)

·       Chorus line. Unless of course we’re going to kick with only one leg in one direction, but that may not work on an aesthetic level.

·       Balloon animal creator. Do I really need to explain that one?

As they say, “you always want what you can’t have.” When I look at this list what really stands out is that I probably would not have ever done most of these things even if I hadn’t had a stroke. I admit it’s a bit annoying to have them taken from me anyhow. I have moments where the reality that I can't do everything I put my mind to bugs the crap out of me. Not so much because I can't do nor will ever do many things, but because I don't want to feel like maybe I didn't make the most of my abled body while I had it. 

Regret is poison. I don't dwell on it, but it does come in small bursts like today while rockin' out in the car. As I fantasize about leaning on a stripper pole, standing on one leg, doing a high kick with the other while I twist a balloon into a wiener dog and spray paint my name across its ass, I have to make peace with the fact that Breakin’ will probably be remade without me. Head spinning is not in my future. But pop locking…well now hey, pop locking might be doable.

Words of (Not Really) Wisdom

Walking with a front-wheeled walker when you’re only 32 is sure to get some attention. Most people smile if they happen to notice you looking, but it’s generally one of those obligatory I-don’t-know-what-to-say sorts of smiles. Today I went to exchange some items at a local store and the woman next to me in line gave me one of those smiles…a few times. It was obvious she was working up the nerve to say something. She finally asked me if I was in an accident. I told her I had a stroke and acted like yup, this is me, nothing to hide. She seemed at ease that I wasn’t offended. Frankly, I appreciate someone asking because at least they’re not assuming. Who knows – maybe in the process she learned something. I know I’m still learning that this is my new normal.

I remember sitting in a wheelchair in the hallway at rehab, thinking there is no way in hell I’m going out in public. No way. When you’re away from family and civilization in general, you get lonely but you also find a certain safety in your surroundings. Everyone there knew what was wrong with me and what I needed, even if I didn’t like needing it. They didn’t stare wondering what happened to me, worry about saying the wrong thing, or debate whether it was ok to ask me questions about how I was doing. Compared to being a stumbling cripple in front of strangers, getting naked with techs and being stabbed by nurses wasn’t such a bad trade off.
 
Well I’m getting over it. I’d like to say I’m getting comfortable in my new skin, but that isn’t true. I don’t ever want my recovery to become complacent, because then I won’t work as hard to overcome it. I am however confident in whom I’m becoming as a person and frankly, cabin fever is a bitch. I need to get out of here. Like seriously. Get me out of here.

I’m not going to lie. I’ve learned a few lessons about leaving the house the hard way. I’ll share them with you, should you ever find yourself in a similar predicament.

BEWARE OF CRACKS IN THE SIDEWALK. These cracks (especially the deliberate cracks made by the people that laid the concrete) have a way of bringing the front wheels of a walker to a dead stop while you of course have gained the momentum of a semi truck. Thank goodness my husband was there to grab me before I dived over the walker.

WATCH YOUR SPEED. This of course refers to the crack situation but also to those of us overcoming a paralyzed leg or foot. You may be a badass picking up the pace, but at any given moment your brain may betray you and swing your foot rapidly toward what you think is between the legs of your walker, but is in reality head-on into the leg of the walker. This will send your walker flying off to the side and possibly knock you on your ass. (Unless you’ve mastered the art of stumbling, which is an acquired skill that comes with time and practice.)

MOTORIZED SCOOTERS AT TARGET ARE THE WORK OF THE DEVIL. First of all, I’m 4’11” tall. These scooters are made for giants. I sat as close as I could to the handle bar only to find that the mechanism that makes it go forward is a button on the right side. Well that’s my paralyzed side. My thumb couldn’t push it. And if you think that this won’t affect you because your paralysis is on the left side, guess where the reverse button is! And if you think you’ll be clever and push the button on the right with your left hand AND manage to steer, don’t kid yourself. I knocked over several displays proving this.

MOTORIZED SCOOTERS AT WALMART ARE WORSE. I didn’t try one but I was there today and noticed they were even more ancient then the ones at Target. This debunks my theory that Wal-Mart scooters would be cutting edge since they get way more fat crippled shoppers than Target. (Before I get any hate mail from Wal-Mart shoppers I’d like to point out that I’m fat and crippled. Yes, that makes it ok.)

YOUR CHILDREN WILL BETRAY YOU. I was left with my 2 year old son for about 5 minutes in a restaurant while my husband went to pay the bill. My son jumped out of the booth, grabbed my walker and took off with it. I couldn’t run after him, so I sat there while other patrons got their kicks watching my son betray me. I asked him to come back, and he ran faster. Diaper changes at home generally result in a naked toddler running laps around the couch while peeing on the carpet all the while taunting, “Ha-ha mommy! Ha-ha mommy!”

I make no claims to wisdom. If I can help just one person avoid falling on their ass in public or being stabbed in the back by their own child in front of an audience, then I feel I’ve paid it forward. You may want to do the same. It’ll make you feel all warm and fuzzy inside.