My Turn Already?

One in five stroke survivors will have another stroke within five years of their first.  

1 in 5

Last week my number came up. (Sort of.) Last Tuesday, I was standing at the stove slowly whisking my homemade Thai Peanut Sauce. My 3 year old son was playing with his train set and hubby was upstairs playing handyman. I’m standing there, stirring the sauce, and it occurs to me I’m swaying. I tend to rock a bit due to the weakness of my right leg, but this was different. I was swaying hard. My breaths were shallow. I looked up at the wall and an overwhelming spinning sensation came over me. My first thought:  Just.Like.Last time. FUCK.

Then my mental checklist:

1. Get to a chair.
2. Check blood sugar.
3. Scream for hubby.

Next steps are all contingent on Item #2. Dizzy spells can be brought on by a dip in blood sugar, so I knew to check that first. I don’t know how I remained logical in that moment because in my gut I knew what I was feeling. I pricked my finger and the glucose monitor read “177.” OK so it’s not that.

OH MY FUCKING AHHHHHH!!!!!!

And then I lost my shit. Screaming, scrambling up the stairs – albeit not the smartest move – to get my husband. He came running down and helped me up the rest of the way, still unsure of why I was freaking out. He was oddly calm. We checked my blood sugar on a 2^nd monitor I keep upstairs. It was 173. Clearly my blood sugar was not the problem. He held my face and said, “Keep calm. Sit down. I’m getting the phone and calling 9-1-1.”

I said, “AHHHH! MY ARM! MY FUCKING ARM! AHHHHHH!”

I’m not very good with directions.

I felt the right side of my body turning to lead, very heavy, difficult to move. My son sat next to me and said, “Don’t be upset, mommy. Your arm hurts? I kiss it, OK?” He was so sweet and calm like his dad. It brought me back down from my hysteria.

EMTs came and took me to the hospital. They noticed the right corner of my mouth was drooping a little. After 2 CT scans and an MRI, they determined that it was not in fact a 2^nd stroke. Good news. But it wasn’t nothing either. The Neurologist explained it was most likely a TIA, (aka “mini-stroke”) or a temporary exacerbation of the old stroke (whatever that means.) An artery in my brain stem is forever compromised from the first stroke. There is build-up there, and whether it’s scar tissue or something else doesn’t matter. It’s narrower. The arteries in the brain stem are already narrower than arteries in other parts of our body, so it’s an especially shitty place to have a problem. If that artery flexes or spasms, it can temporarily block blood flow to the brain causing stroke symptoms. The vessel then relaxes, blood flow is restored, and your body is like “Huh? What stroke? You’re just trippin’, dude.”

I'm alright. I was alright within a couple of hours. I spent the night in the hospital to make sure it had passed. I woke up the next morning still disabled, but not more disabled. I was back to my normal.

My husband and I realized that this may very well happen again. I am working hard to prevent it, but there is no guarantee that it won’t. It's a reminder that accepting our new normal comes with a greater responsibility of self-awareness and constant vigilance. It's a reminder that we're not like everyone else. But who the hell wants that anyways.

This isn’t a woe-is-me-oh-no-I’m-forever-doomed post. We all have our baggage, our ailments, our crap that we’re supposed to do but easily overlook due to complacency, laziness, ignorance…This is more of a flick in the earlobe; A reminder to not be so damn complacent.

I also can’t stress enough how important it is to listen to your body. My husband was on the phone with 911 within 15 minutes of the onset of my symptoms. You don’t have to be sure. You just have to act. Let the doctors worry about being sure.

CONSTANT VIGILANCE!

(I am disappointed in the interwebz for not having a sound bite of MadEye Moody for me to insert right here. So disappointed.)

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.

Mission: The Entire Ass

I’ve had a hellish past few weeks. I did everything I could think of to prepare for surgery on my good hand, but nothing really prepares you for what that is like. I was online far more than I anticipated (shout out to my pharmacist!) but that wasn’t terribly wise, considering I need to heal. Yeah, yeah I know, here I am typing. I’m doing this in chunks to give my hand a break. I tried using voice-to-text software to blog via my phone, but it turns out technology is not a fan of my run-on sentences.

This is an eventful week. It started with the removal of the stitches in my left hand. Yay! My hand still needs to heal a bit more before I have full use back, but I’m excited to not have those ugly black sutures yanking on my skin anymore. There was so much to tell about the whole surgery ordeal, but I’m in a good mood and don’t feel like talking about it. Here are the highlights:

It was really awful, then it drove me into a deep depression, then I got drunk with a good friend and had meaningful conversation. Then my stitches came out, and I tried to be normal. It turns out wiping my ass is now a go, but pushing a shopping cart is not. My 2 year old son has grown accustomed to helping me dress and undress. He now randomly yanks down my pants if he thinks I’m going to take a shower. We’re working on keeping the curtains closed. Oh and my awesome friend, Betsy sent me this badass shirt.

Today, June 7^th, is my one year anniversary. It’s been a whole year since my stroke. I started this blog while I was still in the hospital. Last night I went back and read my original posts. I wanted to remember where I was in my head, what I felt, and how far how I had to go physically. It’s easy to get caught up in what you can’t do. Remembering my days in acute rehab puts into perspective all the ass I’ve truly kicked this past year. So these cannots I’ve got tallied in my head can go screw themselves. I’d like to point out that MS Word just suggested I change "all the ass" to "the entire ass." Clearly it does not believe there is any more ass left for me to kick. Well I disagree, fuck you very much. There is still work to be done.

I remember feeling anxious in the hospital, far more anxious than sad. Those first 8 days in the hospital were about getting stabilized. Physical therapists would come in and move my arm and leg around so I wouldn’t stiffen up, since I couldn’t move around myself. I even managed to give the Neurologist a fist bump when I couldn’t shake his hand. At that point they were easy on me, for the real work was to be done when I got transferred to acute rehab.

My first occupational therapy session in rehab was the first reality check I got smacked with. So far, all my therapy had consisted of not so much therapy, but neurochecks.

Squeeze my hand.

Push my hand with your foot.

Can you wiggle your toes for me?

Now touch your nose…

I couldn’t do most of those things. When they wheeled my wheelchair up to a giant wooden table in the gym, I was nervous but eager. The OT placed 10 little poofy pom poms in front of me. 

These are poofy pom poms. They weigh nothing. And they're stupid.

I was instructed to pick them up, one at a time, and drop them in a shoebox. Piece of cake, right? I started to move my right arm forward, then slowly tried to raise it to the table, then…then…oh for fuck’s sake…My arm was supposed to extend to reach the pom pom. We’re talking about a few inches in front of me. I dropped my arm and I started to cry. I started to whisper “I can’t do it.” She told me to remember to breathe and try again. It took all my strength to lift, extend, open fingers, lower hand, close hand on pom pom, lift hand, move hand over to shoebox, then open hand to drop it.

Each of those steps is a completely different signal for the human brain to master. Each step required tremendous concentration and physical strain. And I had to do it again, and again, until all 10 of those motherfucking poofy pom poms were in the motherfucking box.

More OT: The dreaded Theraputty. I had to pick marbles out of that shit.

I’m sharing that story because it is a pivotal moment for me. It was the first time it hit me in the face just how broken I was. It was also the first time I attempted something and felt like it couldn’t be done. And yet I did it. I don’t ever want to forget that moment. It still makes me cry. Fuck, I’m crying right now. It’s not a sad cry. It’s not a cry of mourning. It’s a rally cry. I think about going from that moment sitting in a wheelchair in a gym, literally sitting on my phone in case it vibrates with a phone call from home so I can hear my son’s voice, and then I think about today. Today I’m cooking chicken parmesan from scratch, carrying my son upstairs for his nap, typing with TWO hands, and yes, even driving.

Last week my husband stumbled upon cheap tickets to the opening night of Elmo Live! We’ve never taken our son to a big event, let alone to a big arena but the tickets were too good to pass up. When I realized I would have to go to the show as a gimp with stitches in my good hand, I went into panic mode. I can’t use my cane with stitches in my hand – how the hell am I going to make it through an arena? Wheelchair access seats were confusing and a total hassle. You can’t use Ticketmaster’s automated systems for anything because there is no way to pick a crippled seat and there are no real explanations anywhere about how to go about picking one. Plus I hate the wheelchair. I’m too much of a control freak to feel comfortable with someone wheeling me around now that I've learned how to walk. I decided there was only one real choice. (Well there were two choices, but I wasn’t going to miss seeing Elmo with my kid.) The only choice I had was to suck it up and walk, really walk, unassisted. Who wouldn't at least try for their kid? I sure as hell am not going to die from walking.

A year ago, family fun time was wheeling mom around a nursing home.

I’ve managed to walk without my cane these past few weeks, but only short distances. I had no way of knowing how far it would be from the parking lot, through the main entrance of the Citizens Business Bank arena, to our section, and then up or down to our seats. No clue. I pictured myself bed-ridden the next day. I pictured myself having to lean on walls and railings and my husband to catch my breath. I pictured my leg locking up and my toes curling under from spasticity. I can’t explain it, but I knew I could do it. I knew it would suck, but it was doable.

Thanks to my handy dandy handicapped placard, we parked really close. I was absolutely thrilled when I made it to the entrance, walked inside, and the usher looked at our tickets and said “Oh. Your section is right there.” He meant literally RIGHT THERE. Like, right in front of us, maybe 25 feet away! Man, I got this!

We had a blast, together, our little family. I've realized over this past year that most days are going to be a challenge. Challenge isn't a bad word. Fuck that noise. I've taken a number of calculated risks because why not? It's worth it. It's do or die and I'm not dying.

I’m kicking ass, but I’m not 100% better. I will never be 100% better. I am, however always ready to try harder, push further, and kick more ass. So that’s my mission: the entire ass. One can never actually kick the entire ass, but that’s not the point. You can still kick a lot of ass. I think of my mission in the same vein as “Shoot for moon. If you miss at least you’ll land on a star.” Or however the hell that old saying goes. There’s a big ol’ fucking ass out there ready for me to kick. And mama’s got her boots on.

June 14, 2011: Day 7 in the hospital. I couldn't hold him, so he crawled into my hospital bed.

June 7, 2012: After 20 tries this crappy photo was all I could get while holding him still. But I held him :)

Look, Ma! No Hands!

It’s been a while since my last post. I’ve had plenty to say. Hell, I always have plenty to say. The truth is I’ve been avoiding my own blog. How twisted and sad is that? I’m going through a weird time and I feared that if I started to write, I would be too honest. When I chose to write about my recovery, I had (and still have) every intention of sharing my story without any sugar-coated bullshit. If this is going to help my recovery, it must be candid and gloriously raw. So that’s what you get.

What I get is all my most personal shit flapping in the breeze. I’m not shy, so I don’t really care. The issue I have is that if I say it out loud, then it’s really happening. And since I can’t shut the hell up, it’s time to talk about what’s happening and let it be real.

I’ll spare you the long “How Gellie’s Hands Came To Be Royally Fucked” story, and tell you this: I have to have surgery on my left hand. I am “right-side affected” as a result of my stroke. That means my right hand and arm don’t work so well. Now I have to have surgery on my left side. This means that recovering from surgery will result in NO HANDS. Well not “no hands,” more like half a hand and a quarter of an arm; Make that a quarter of a T-Rex arm – you know, it sort of functions but can’t reach worth a damn.

When I discussed this with the surgeon, he thought I was nuts. He looked at me confused, speechless, like I can’t possibly know what I’m suggesting.

You do realize what this means…

You won’t be able to use…

Are you sure you…

You really need to think about…

Ah…silly doctor. I should mention that he’s worked on me before. Six months prior to my stroke, I had this same surgery done on my right hand. I cut him off and chuckled. I explained that the thought of this surgery, and the horrors of recovering with essentially no hands has been on the forefront of my mind for weeks, plaguing my sleep, consuming my every spare moment to ponder what I’ll be getting myself into. I assured him that my husband and I have spent hours going over what it may be like and preparing ourselves for 3-4 weeks of complete and utter hell. BRING IT!

Who the hell strong arms their surgeon into slicing open their only functioning hand? ME! Fuck. Maybe I am nuts. I’m doing it because I’m in excruciating pain, and I’m already losing my grip – on my hand not my mind – and if I don’t do it soon, it could cost me my hand altogether. I’ve already suffered irreparable nerve damage so it’s only going to get worse unless I do something about it.

I’m really OK with being disabled at this point. I can’t change it, so eh, whatever. I’ll deal with it. But this shit?! Surgery? I’m freaking out. Every day since that consult with the surgeon I have realized more things I won’t be doing while I recover. Here’s a few (or 20) so you can panic with me:

Brush hair

Wash hair

Actually, I’ll barely be able to even touch my hair so you can have fun thinking of all the other hell this will bring me.

Put on pants

I may be able to take them off if there are no buttons or zippers and I can rub my feet on my legs to wiggle them off. Still unsure of right leg wiggle capability, but we’ll see.

Put on a shirt

Take off a shirt

Underwear…oh god, underwear…

Wipe my ass – yep, I’m going there.

Sadly, there’s no app for that, but I discovered there is a gadget so I’ve got a Plan B(M). Also, pain meds stop me up so I probably won’t have to go anyways.

Walk with a cane.

That means walking anywhere outside of my house, which means not going anywhere, ever.

Change diapers (woo hoo! Hey look at that! A silver lining!)

Do dishes (Not bad, not bad!)

Get stuff out of the fridge.

Ahh, crap! I can’t get anything out of the fridge! My T-Rex arm can’t reach, and my wonky right hand isn’t strong enough to grab anything and carry it to the counter unless it’s the size and weight of a yogurt. I guess I’ll be eating a lot of yogurt.

Blog.

You’ll miss me. You know you’ll miss me.

Open stuff.

I’d be specific, but it’s just about everything you can think of from envelopes to jars to jackets.

Damn it. I won’t be able to put on jackets or sweaters.

I’m cold all the time due to spasticity issues. There’s a whole other blog post on the horizon to explain what that is. Trust me, it’s a problem. 

I’m not looking for pity. I’m just trying to give an honest glimpse into the hell I’m about to walk into. Surgery has been scheduled for Wednesday, May 16^th. That is coming up quick. Panic is running rampant, which is why I’m writing about it. This is me, channeling the anxiety and bad juju out of my system. That’s all.

I’d be lying if I said that I wasn’t looking forward to lying in bed with my Kindle for hours on end, hopped on prescription goodness. Life may suck balls sometimes, but I’ll be damned if I won’t get a decent buzz and a good book out of it.