Saturday, December 3, 2011

The Friggin Tree

We bought a Christmas tree. This is only the second time in our 13 years together we have done this. The first time was about 6 years ago and I can’t remember what compelled us to do so. This year, our son is 2 years old and more aware of the looming festivities. I still didn’t want a tree. They’re an unnecessary expense, I don’t like the idea of chopping down a living tree for temporary adornment, and they’re a pain the ass to keep decorated with 2 cats and a toddler in the house. My husband, however, felt inspired to do something fun as a family. Alright you got me there, so off to the tree lot we went.  We found a beautiful tree within minutes. The stroke has left me with severe spasticity in my right shoulder and I’ve learned the hard way that even the slightest bit of cold is not my friend. (It’s plain evil, actually.) Luckily I remembered my awesome bright red coat that I never get to wear thanks to California weather. I’m rather excited that now I’ll have a reason to wear it more often. My son was so happy to be outside at night he swirled around, dancing and singing “kwissmus twee! Kwissmus twee!” It was great.

It occurred to us that we had no idea where our ornaments were. They were in the garage somewhere in the myriad of unmarked cardboard boxes and plastic storage totes. I’ll be honest. This was another reason I didn’t want a tree this year. My husband has so much on his plate. A crippled wife isn’t much help digging through the garage.  We decided to buy 2 small boxes before heading home as a little start-up kit before figuring out where the stuff was. We could always buy more if need be. The first box contained 4 disco balls like this:


If I'm going to have a damned tree, it sure as hell is going to have disco balls.


The other box was of glitter foo-foo ball things like this:

I dig silver and glitter and sunbursts. This had all 3 FTW.


Sweet. Now I’m starting to feel it. Winter has been celebrated since the beginning of civilization. While we have traditionally been more bah humbug sort of people, I think now that we’re parents and especially since my stroke, we’re feeling the spirit of the holidays more this year. Since ancient times, winter festivities have been a celebration of family; that we’ve weathered through difficult times by sticking together and making due with the harvest we have. We take time to appreciate the year that is soon to be behind us and hold out for the year to come.


My husband found the missing box of ornaments a few hours ago. We opened the box and mused over the few specialty items we had to commemorate years passed.
 

There was the Grateful Dead ornament I got from a friend many years ago during my Deadhead days:



The flying pig my husband bought the last time we bought a tree because I love pig figurines, and let’s face it, if we had a tree then it must mean that pigs can fly.


Many of the generic ornaments were scuffed or broken, but there were enough to work with. I handed a disco ball to my son so he could put the very first ornament on his very first tree. He didn’t understand and thought I had given him a sparkly new toy. He ran off with it while I yelled and shook my fist. When you’re disabled you learn not to bother chasing after them. He finally threw it for me to recover and went for 2 gold ornaments instead. He sat down and proudly banged them together, until one of them shattered and showered golden shards of whatever that crap is made out of all over him. Meltdown in...wait for it...3…2…1…WAHHH!!  Oh togetherness…

*Note: I'm still kicking myself for not snapping a picture of this. Yes, I realize I'm a terrible person.

I took him upstairs for a much needed nap. I’m still not sure why or how, but I carried him up the stairs. Perhaps I was so fed up that I somehow invoked superhuman mama strength. Perhaps I was so ticked off that this was not at all the Mr. and Mrs. Cleaver with the Beave fantasy I held in my na├»ve head, that I didn’t stop to think I have not yet carried a 27lb toddler up a flight of stairs. I don’t think I wobbled or swayed at all. Good thing he knows to hold on. Good thing I do too. We made it safely. He threw himself on the floor of my room and fell asleep. I collapsed in a nearby chair to catch my breath and flex my biceps in admiration of myself.


As I hobbled back down the stairs, I found my husband standing next to the naked tree with his arms stretched out in a “ta da!” pose. He had found the tree topper. We almost bought one last night because we couldn’t remember if we had one. Losing all self-control I put my hand over my mouth and laughed hysterically. It’s hideous! I said as lovingly as I could, “I’m sorry but I hate it. It’s awful.” He laughed too in agreement. Then we remembered. That year we bought our first tree we had done so at the last minute. All the cool tree toppers were sold out, so we settled for the least horrible. Apparently this was it:
I told you it was hideous.

We agreed to keep our eye out for a new one in the coming weeks. I wound up decorating the rest of the tree by myself. I was growing more resentful with every stupid hook my crippled hand had to ply into shape and wrap around a branch. Then I realized that a few months ago I wouldn’t have been able to do this. I’m grateful I am learning to focus long enough on my hand and fingers to bend little wires around those branches. I’m grateful I’ve learned to slowly raise my arm so I can reach the branches higher up on the tree. This Christmas isn’t just my son’s first Christmas with a tree. It’s my first Christmas as a disabled person. It’s my time to reflect on what has happened to me, how it has impacted my family, and how we’re sticking together for the year to come. Even if that means daddy is checking scores online and our spawn is screaming and breaking the ornaments.
 
He woke up just in time to mess with the tree while I snapped a pic of my work.

Friday, November 18, 2011

Cuckoo's Broken Wing

Hi. I'm Gellie and I'm a fat fuck. Big surprise I had a stroke, huh? I've been focused for the past 5 months on rehabilitating the right side of my body. I've had oodles of support from friends, family, and even strangers. If you've read my blog before, you know I've come a long way. I know my weight is an issue but I try not to dwell on it. Most women in their early 30s want to feel sexy but that isn't supposed to be a priority for me right now. Remapping my brain is supposed to be the focus. At least that's how I've felt.

Yesterday a group of my mommy friends started a private group for moral support in exercising and eating healthy to help them lose weight. I thought it was a cool idea but I was also envious. I've grown close to these friends over the past few months and I really wanted in. But that's the sort of thing I don't get to be in because I'm disabled, right? As they kept talking I thought, "maybe having someone remind me that I shouldn't eat a hand full of goldfish crackers every time I make my kid a snack is what I need. Maybe when they workout, I can do my rehab stuff so I can at least tag along."

Ahh the glorious internet! This isn't a local, face-to-face mommy group - we're friends online. This means it doesn't matter when or at what pace they workout, because we're all in different parts of the world anyhow. Then our lovely friend who really got this going posted this:



I stared at this on my monitor for a while and realized if I take each step one at a time, modifying as I need to for my crippled ass, I just might get through it. Last night someone asked what workout are you going to do in the morning? I threw my hat in the ring and said the 100 Workout. I figured if I said it out loud (or typed it publicly in this case) then I'd have to follow through to save face. Let's face it, even at 33 peer pressure is a powerful tool.

This morning after my little one was gone to daycare, I got started. I made little notes next to each item to track how I had to modify it. It occurred to me that if use my hand to actually write my notes instead of type them, well then I'm doing therapy on my hand too! I had previously vowed to practice writing everyday until my hand learned to do it fluidly again so this was perfect!

Here's my notes:

Writing doesn't come easy, but I'm getting there.

SECRET DECODER RING:

100 Jumping Jacks
There is no way I'm capable of jumping jacks so I'll think of something to replace this and come back to it. This is obviously a cardio activity so I'll think of something along those lines. ok NEXT!

90 Crunches
 I did 50. I did 20, rested, then 10, rest, then 20. I never rested more than a couple minutes. I also can't get my right arm behind my head so I clasped my hands together on my chest. This kept my right arm from falling off to the side.

80 Squats
I friggin did it! I did 80 squats! I stood in front of the couch just in case my leg gave out and I needed to throw myself somewhere safe. I also had both of my hands holding onto my cane in front of me for balance. I kind of felt like a fat awkward cast member of Chicago. I need to get a tophat. But I digress...

70 Leg Lifts
Leg lifts are actually part of my physical therapy routine. I lied on my back and broke it down like this: Straight leg lifts, 20 repititions on right leg (bad leg) then 20 on left, then 15 on right and 15 on left. (35 straight leg lifts total.) Then I did knee-to-chest, 35 reps on each leg. Altogether it made the total of 70.

60 Jumping Jacks
Damnit. These again. First I tried stepping up and down the stairs in an effort to do something cardio. After squats and leg lifts this was a stupid idea. I decided to walk in place for 5 minutes. My good leg and hip started to hurt so instead I raised my arms in a jumping jack motion, but standing still. Here's the problem: my right arm cannot complete that motion. It can go just a little more than half way and it's never straight. It's all crooked and kind of floats around. But screw it, I did it anyways to keep my heart rate up. I went on flapping like a bird with a broken wing.

To my surprise (altough I should't be surprised because this is what OT keeps drilling into my head) my arm started to go higher and higher. I won't lie. It hurt like a mofo. I almost couldn't take it. Then I managed to get my right arm ALL the way up 3 times!! Yes! 3 times! I checked the timer which was set for 5 minutes. Apparently I screwed up and set it for 5 hours so I had already been going 7 minutes. Damnit!

50 Crunches
I did 35. I had already done 50 and my stomach was still in shock. As I was approaching 30, I realized I could feel an abdominal muscle on the right side flexing. This is a big deal. I haven't felt those muscles at all in 5 months.

40 Squats
Totally did it (still using the cane.) I seriously need a tophat. And fishnets.

30 Leg Lifts
This time I sat up and lifted my knees for 30 reps each.

20 Jumping Jacks
I stuck with the crippled cuckoo bird move. My legs needed a break.

Walk 10 Minutes
I walked and marched in place and lasted 6 minutes.


Altogether I worked out for about 1 hour 20 minutes. Then I sat at the kitchen table where the 100 Workout picture was still up on my notebook, and cried. I cried because I fucking did it. I cried because I'm one lucky bitch to have a group of women in my life that inspire and empower me in ways they probably do not know. I cried because my body felt things today it couldn't feel yesterday and that means this isn't over. I have so much more I get to do.



This post is dedicated to A.N.U.S. You know who you are ;)

Monday, November 7, 2011

Complicated Badass

Rehabilitation is not a linear process. While the big milestones are hit 1, 2, 3…the fine tuning doesn’t work that way at all. Can I walk? Technically, yes. But how far? Some days I can walk almost a whole block. Some days I can barely make it to the bathroom. Whatever I did yesterday won’t necessarily be doable today. It’s quite a mindfuck really. When I graduated to a cane recently I thought “yes! This is my next biggie! I’m almost ok again.” Pfft! Walking with that cane has been a huge challenge. While it’s a challenge I welcome and am excited to embrace, it’s also a whole other level of frustration and worry. I’ve become more vulnerable with the cane. I’ve had my leg give out a few times in the past week, and a cane isn’t much good in that situation. Luckily I only ate shit once and it was in my bedroom. My 2 year old son was the only witness, to which he shouted “Whoa! You ok, Angie?!” Apparently we’re on a first name basis now, but that’s another story.

I’m also using my right arm and hand more. There are days when I feel like most things are doable. Then I get stuck trying to open a jar or I’m the first one to a new box of cereal. Opening that plastic bag inside the box usually results in me mutilating it with a steak knife in a maniacal rage. It’s frustrating to know there are so many things I have figured out how to do but then other trivial things are damn near impossible. I think it’s those little things that make life difficult and even painful. I can give my son a bath, but I struggle like hell to scratch my own nose. It doesn’t make any damn sense.

So how is your rehab coming along?

That is a difficult question to answer. Yes, I continue to make progress. On paper if I listed what I was doing a month ago and then listed what I’m doing now, the lists wouldn’t be terribly different. It isn’t always about accomplishing new tasks. It’s how I go about each task, how fluid and how strong the movements are that show significant progress. How am I supposed to explain that? Well last week I could reach like this, and now I can reach like that. Umm…yeah ok. Fascinating.

My OT told me that the trick is to make it look easy. Fine tuning is about pretending my movements are normal, so eventually they will be normal. (That's the hope anyhow.) With normal movement, will come strength. If I keep trying to pick up a cup, eventually I'll pick it up. And the fact I kept at it, allowed my arm and hand to build up the strength to lift the cup. So, if someone asks me if I can lift a cup the answer depends on what kind of a cup! You see? It’s a damned complicated question. So far yes to plastic if small and not full, and no to glass - at least not coffee mugs or beer pints. Trust me, I'm working on it. Can I write? Ah hell, yes, I can write my ABCs but if you want a friggin essay or someone to keep up taking notes in a meeting you’re barking up the wrong tree, pal.

I was informed in OT last week that while I have a lot of fine tuning to do, there isn’t much they can teach me anymore. (OT focuses solely on my shoulder, arm, and hand.) He said that it’s clear that I’m working hard at home and he’s shown me all he can. While he gave me his “it’s not you, it’s me” speech I sat there frozen, quickly blinking away my tears. I’m not ready to let him go. No way. I can barely carry a plate from the kitchen to the table. How can he think I’ll be alright on my own?

He said he had one last test he wanted to try. If I could do it, I don’t need him anymore. He handed me a piece of string about 4 inches long, and told me to tie it in a knot using only my weak hand. He chuckled and said even people who haven’t had strokes struggle with it. OK so I’m supposed to use only the hand that I can’t even feed myself with to tie this here string into a knot. Bring it.

Reenactment of awesomeness
BOO-YAH!

You know I did it! He said “You see! You’re awesome!” I’m like, “duh.” Then he said “Do it again” just as he turned to hand something to his co-worker. He turned back around and I already had my palm held out, with 2 more knots tied into it. Fine, OT. I guess I don’t need you considering I’m a badass and all.

Reenactment of further awesomeness

So that’s my latest: I’m an awesome badass that still can’t cut my own meat or put my own hair in a decent ponytail, but I can tie a knot like a mofo. Thank goodness my left hand can still lift a Long Island Iced Tea to my lips until my right hand catches up.



Saturday, October 15, 2011

Suck it, Doctor

Less than 2 weeks ago a neurologist told me it was doubtful I would be able to walk with a cane. He felt my right side was still too weak to go very far without support. However I knew at my next physical therapy session, my PT would have me attempt to use a quad cane, just to see what it’s like. A quad is one of those canes that are typically reserved for the 80 years and older crowd. It’s got a big silver rod mounted on a metal square with 4 prong-legs for support. Like this:

Part of me was excited about possibly graduating away from the walker, but the other part of me had a vision of myself with that ugly hunk of metal hunched over a slot machine in Vegas, clinging to a bucket of pennies with a Virginia Slim hanging out of my mouth. I mean seriously? Me, with a freakin’ quad cane? Oh brother. Then I remembered when I refused to go on a public outing with the rehab staff because I wasn’t ready to be stared at in a wheelchair. I remembered how awkward I felt strolling into the mall with my old lady walker, like I was embarrassed the “cool kids” would stare. I mean hell, I was one of the cool kids and now I’m totally losing my street cred. So fuck it. Bring on the quad.

I went to physical therapy and we tried it. I walked well with it, but it was awkward. It didn’t feel fluid as I felt each prong hit the floor one at a time. After about 25ft, the PT said “hey, wanna see how you walk with one of these?”

I swear I could hear cherubs singing as part of the roof opened and a ray of light shone down on this cool, sleek, shiny black cane. I said “ uh hellz yeah I wanna see what that’s like!” He showed me how to properly place the cane ahead of me on my good side and take a step with my bad foot, then follow through with my good foot. After 2-3 steps I realized I was leaning on it, so I straightened out and pictured myself walking like a normal person. I started to giggle. I couldn’t contain myself. I could do it! Suck it, Doctor!

I went home, showed my husband and asked him “honestly, how bad is my limp?” He watched me take a few steps and said “Wow. It just looks like you’re walking all gangster.” So it isn’t just all in my head. (The not-so-bad-limp part, not the gangster part.) I have a lot of practicing to do in order to adjust. The walker was also psychologically comforting because it was support on both sides. My pimp-ass new cane will take some getting used to.

I figure I’ll go back to the mall to practice. This time I’ll walk around with my head high, limpin’ like a gangsta and reclaim my street cred. I even gave my cane a custom detail, so they’ll all know this bitch means business. Peace.

"It's hard out here being a pimp."


Tuesday, October 4, 2011

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.






Thursday, September 29, 2011

Doctor Downer

I saw the Neurologist yesterday. I hadn’t seen a Neurologist since I had my stroke, so I had a lot of questions. Apparently I did have a blood clot, a rather small one, in my left brain stem. They can’t tell what precisely caused the clot but considering my medical history I was at risk. He agreed it was odd that it happened to me at this age (I’m 32) but the risk was definitely there. OK. I can accept that.

What I can't accept (and wasn’t expecting) is that he isn't very hopeful about my prognosis. He tested the strength in my arm, fingers, leg, and foot and was concerned about how weak I am. He handed me a pen and asked me to write my name. I did. It was slow and my hand stiffened up, but I did it. I thought that was pretty awesome. He looked at me and didn’t say anything. He just looked at me as if in deep thought, figuring out what he should say, how he was going to break the news. He said he didn’t want to lie to me. It just isn’t likely I’ll ever be able to type and write like before. I broke down and cried.

While the tears streamed down my face, he asked about my overall mood. It's common for stroke patients to have little control over their emotions. I told him most of the time I’m joking and laughing.  I joined a support group and started a blog, all of which have been incredibly therapeutic. He brought up antidepressants, several times, stating that almost all of his stroke patients take them. He said if I’m depressed I may not be motivated to push myself in rehab. So I told him a little more about myself. Obviously, this guy doesn’t know me. I assured him that if I were truly in a dark place I’d be open to pill-popping, but I really don’t think it’s necessary. I know a lot of other stroke survivors who do need this type of help, and they truly do need it. That’s OK for them. Not for me.

I realize that he's never met me before so in all fairness he has nothing to compare me to. He didn't see me when I couldn't walk at all or move any of my fingers. In less than 4 months, I can write my name, walk with a walker on outings, and ditch the walker altogether when I’m at home. I’m sure it was hard for him to visualize without seeing it for himself. A month ago or so I couldn’t type with 2 hands. I made myself try, and it felt weird, really weird. I’m on the computer a lot, so I’ve made myself use 2 hands even if it slows me down. Today I’m typing nearly as fast as I did before my stroke.

I spent all day thinking about that conversation with the doctor and that look on his face while he tried to tell me that I’d never get back 100% and would be lucky if I got close. Then I thought about how the other night I was chatting online with a friend. She pointed out how fast I was typing my responses. I could barely keep up with an online conversation a couple months ago. Now you wouldn’t know the difference. The doctor seemed worried about how I can hardly write. Well it’s time to make myself write everyday too. With all due respect Doctor, you don’t know me. You have no idea who you’re talking to.

First writing practice session of many more to come.


Tuesday, September 27, 2011

Put a Sock In It

I attempted to rummage through my sock drawer this morning looking for 2 socks that matched. I say “attempted to” because my right hand & arm aren’t really capable of rummaging. I’m not a stickler for matching per se, but I make an attempt to keep my socks with their rightful mates. After all, we’re all warriors in the unspoken battle with the little people. I don’t mean dwarfs, I mean THE little people; the ones that steal one sock at a time from the dryer. Lately I find myself more and more frustrated with not being able to do my own laundry. You may not believe this, but I miss laundry. Between my husband, the little people, and a 2 year old who’s idea of helping fold laundry is pulling clean items out of the basket one-by-one and chucking them across the room, I’m left with…well, this:


This is my sock drawer. Notice anything in particular? If you’ve ever been admitted to a hospital you’ll notice my extensive collection of hospital booties with the rubber grip bottoms (which incidentally never stay on the bottom of your feet.) You’ll also notice that each of these hideous socks have their mate. Yet my beloved striped witch socks, my knee-high skull socks, and my Elmo socks do not. Do you know why the hospital booties have their mates? Because even the little people hate those hideous socks!

You may also be wincing at the (lack of) organization of my drawer. This is what happens when you can no longer do your own laundry. Some days I just stand there and curse at it – in a whisper of course, because the baby monitor is usually on and I don’t want to seem ungrateful to my sweet, overworked husband. Silly socks are very serious business. You can see in the picture that I’m not a regular white or black sock kind of girl. Each pair in my glorious collection has been hand picked by yours truly or gifted to me by a thoughtful friend. When one is missing, I’m genuinely upset. I keep telling myself I’m going to pull the drawer out, sit on the floor and go through each and every sock until that drawer makes sense again.
BWAHahahaha! Yeah that’ll happen.

Even in the hospital I chose my own socks.
I fantasize about a lot of things I wish I could do again: carry the laundry to the garage, stand on my tippy toes to reach things, crawl on the ground to see how much of my stuff has been shoved under the bed. Something tells me that the day I can get a good view under my bed, it’ll be like finding a buried treasure. I suppose that is something to look forward to. I know someday I’ll have the strength to pull that sock drawer out and get it organized. For now, all I can do is put a sock in it. And hope its mate turns up before I turn to the booties out of desperation.


Saturday, September 17, 2011

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.      

Tuesday, September 13, 2011

90 Days - Ahem...Where's my Chip?

It's been 90 days since my stroke. 90 days of stumbling, dropping things, crying, poking fun at myself, and I think I'm doing alright. Rehabilitation is like getting sick and being sent to purgatory. You aren't sick anymore, but you aren't OK to play with others. You get stuck in limbo, doing things but not doing things, looking sometimes almost normal on the outside but not at all functioning like a normal person on the inside. When I was in the hospital I was still dealing with the shock of my diagnosis: stroke in evolution in the left brain stem, right-side hemiparesis. I asked the doctor how long he thought it would take me to move my right side again, and he said that most movement comes back within 3-6 months. Progress can still be made after 6 months, but most likely if it hasn't come back by then, it won't.

WHAT?!

Of course in my mind the clock was ticking. Get these damn tubes out of me, I've got work to do. I spent 8 days in the hospital and another 2 weeks in an acute rehabilitation center. Now that I'm home I've continued therapy all the while keeping that 3-6 month deadline in the back of my mind. Well it's here. 3 months. I've come a long way but I still have a very long way to go. I've been fortunate to connect with other stroke survivors. They have shown me that this deadline looming over my head is complete and utter crap. Rehabilitation doesn't stop.


I still walk like a gimp, even with the walker. Just when I started feeling like I might never walk like a "normal" person again, I moved my ankle for the first time in 3 months! In rehab progress is rapid, noticeable day-to-day. When you get home, progress slows down a bit and it's easy to feel like you've become stagnant. But I've kept moving. Sometimes I motivate myself, and other times my 2 year old doesn't give me a choice. There is something about little balls of poop about to roll out of a diaper onto your couch that make you spring a paralyzed arm into action. Whatever makes you get off your ass, be grateful for it.


I have to remind myself everyday that there is nothing wrong with my body. My neck, leg, arm, hand, foot - they are fine. Nothing is broken, severed, or compromised. It's my brain that is injured. My brain is figuring out how to talk those parts of my body again. I've got to keep moving to make them listen.

Tuesday, August 30, 2011

The Leaning Tower of Gellie

My 2 year old ran to me this morning saying “un tared! un tared!” I’ve become rather fluent in toddlerese, but this was a new one. “Upstairs?” While I took a moment to crack the code he gripped my pant legs with both hands and yelled again, “un tared! Un tared!” Then I realized the gardeners were outside. As the noise got louder it hit me, “you’re scared?” He looked up at me with big eyes that said yes woman! That’s what I’m telling you! and scurried up my body like a little monkey so I would hold him.

It was precious. My baby boy told me he was scared. When you’re a mom these moments make you melt. When you’re a disabled mom all you can think is oh crap, I hope I don’t drop him…or fall…

I told him we should go to the window to see, which of course freaked him out. The thing is I can’t hold him and walk. That’s pushing it beyond the safety threshold. Kids have ninja moves for when they do and don’t want to be held. When they refuse to be put down, they wrap their little monkey legs around you so tight that when you bend over to put them down, you not only fail to peel them off your body but your entire upper center of gravity becomes compromised. You feel yourself slowly keeling over like the leaning tower of Pisa. Think quickly! Stand back up! And it’s toddler for the win!

I hobbled the two small steps to the couch so I could throw us both to safety. There is nothing funnier to a 2 year old than we all fall down! The fall broke his grip from my body so I ran – ok that’s a lie – more like hobbled quickly to open the curtains so he could see there was nothing to be afraid of. Ever see a disabled woman hobble quickly? The poor gardener looked up to see my Quasimodo disheveled ass stumble against the sliding glass door, as I threw my hands up to yell “Ta da! See!”

My son ran over to watch the man mowing our grass and I took a moment to gasp for air. I was exhausted. My knee is still throbbing. But I’m feeling pretty good right now. I’ve been down the past few days, questioning my progress, feeling scared that I’ll never quite be my old self again. Despite my fear and doubts, my kid still thinks I’m awesome. And that’s, well, pretty damn awesome.

Tuesday, August 16, 2011

A.F.O. Artifical F@!king Something-er-other

How messed up are ya, exactly? Hell if I know. If you know me in real life, I know this is at the heart of what you want to ask me. It's ok. Lately I'm just not sure how to answer the question. It's been a little over two months now. Compared to two months ago, I'm doing quite well. I'm on my feet more, although the actual walking isn't much better than before. The difference is I can stay on my feet for longer periods of time. I'm still using a walker and an AFO. An AFO is a big ugly plastic leg brace that helps hold up my fat, useless foot (who I previously named Bertha) since my ankle is paralyzed. I have no idea what it stands for but I'm sure it's something generic and lame that didn't really warrant an abbreviation. This is what it looks like:


Yes, that's Bertha. Fat ass. Anyways, before the strokies and purists point out the obvious, yes I wear it with socks. I just slapped it on for the sake of the picture. Bertha's a ham, but I digress...

As my stamina and strength have improved I've found myself in this weird, in-between, disabled purgatory. I'm disabled, but I'm not immobile. I figured out how to safely do things I was too scared to try before. I can lift my son into his highchair now, but only if I do it a certain way and only if he doesn't fight me. I think he's realized that I need him to cooperate because so far I've managed to not fall or drop him. Yay me. On a positive note, I can go almost a whole day feeling normal. My family has grown accustomed to our new normal, so I almost start to forget I'm disabled. Funny thing when you forget - the universe is quick to remind you! I'm walking more but my leg is also giving out more, without warning. I actually tried to pick up a laundry basket full of clothes and take a few steps with it. I didn't make it a single step, and my compromised center of gravity almost made me eat shit. I came close to going head first into an end table. Luckily I hit the wall instead. You learn to aim in these situations.

I can do most things for myself but I can't drive anywhere. This has been the real pisser lately. (Don't tell me if I incorrectly used the word "pisser" you'll only make it worse - me being pissy, that is.) I love my family very much. But once in a while it would be nice to ditch them. I am never alone. Ever. When there is a toddler in the house, you don't even get to pee alone. The other day I was in the shower, on my shower bench, and was startled by the cold steel of a hot wheel driving across my rear end. Endearing, I know.

I miss the stupid things that make us normal. I can't take my kid to the park or shop for groceries or get the damn laundry from the bedroom to the garage. All the things we consider chores have become milestones I strive to meet. I admit I'm seeing the light at the end of the tunnel. I took a bite of food the other day with my right hand. Just one bite. But I did it. Sorry for the pity party today. I've been very positive about my recovery and that is how I am most of the time. But some days really bite me in the ass and remind me that as far as I've come, I still have a long way to go.

“It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change.”
~Charles Darwin

Sunday, July 31, 2011

It's Mommy's Turn

I’m disabled. More importantly, I’m a mom. When I was finally given a release date from acute rehab, all of my anxiety surrounded around my son. How am I going to change a diaper when I can barely pull my own pants down? How am I going to make him something to eat when I can’t even feed myself with my right hand? I had horrible visions of us both with mashed peas smeared all over our shirts and pee running down both our legs. Today I’ve been home exactly 30 days. It’s been a challenge for all of us to get used to mommy still being kind of broken, but it’s working out well. My son will be 2yrs old next month. At this age, there is no need to really explain because he wouldn’t understand. Instead, my husband and I have had to revise some ground rules around the house for safety, but for the most part life isn’t that different for our little guy.

The biggest changes for him so far are that mommy can’t pick him up when he falls down, and I can’t carry him up or down the stairs. He doesn’t think it’s a big deal. If he falls and hurts himself, I come to him and hold his hands. He was confused by this at first, wanting me to lift him into my arms, but now he is ok with it. Daddy has to carry him upstairs to bed now. Instead of asking for me, he runs to me for a good night kiss and says “night night mama.” I used to do all the bedtime duties because I worked fulltime during the day. Now that I’m on disability, I get to be home with him all day. It’s amazing fun.

I was once so nervous about how this was going to work. Now I’ve learned that children adapt quickly to new things. While I worried about how to do for him, it never occurred to me how much he would do for me. He isn’t used to having me home during the week. Now that I’m here, he wants me to read him stories, color with him, put on his favorite shows…all the usual fun kid stuff. Yes, it’s friggin’ awesome spending all day goofing off. But it’s even better than that. All this kid stuff is therapy!

My OT asked me if I have been doing my exercises. I said yes, my son makes sure of it! Reading stories means I have to practice using my bad hand to hold a book and turn pages. Turning pages requires dexterity in the fingers that I don’t quite have yet, but trying it everyday is great practice for my brain to remap that function. All of his favorite shows involve singing and dancing. He tries so hard to mimic the dance moves on TV so I do the same – awesome physical therapy for arm and leg! Building with wooden blocks and driving hot wheels have done wonders for my arm.  

I still can’t hold a fork, toothbrush, or pen with my right hand, but check out what I was able to do with a big fat stick of sidewalk chalk!
I made myself go from A to Z. My boy practiced saying his ABCs while mommy practiced writing again. I’ve been playing with my kid for a whole month now. Yesterday I went to write something on the family whiteboard, which is always with my left hand out of necessity. This time, without thinking about it, I started writing with my right hand. I managed 3 letters before I realized what I was doing. Of course the markers are big and fat so they’re much easier to hold than a pen, but up until now I couldn’t do it. I stood there staring in disbelief. I told my OT about it later and he said it’s called spontaneous use which happens when your brain starts figuring out how to communicate with your body again. I have to admit I couldn’t do any more than those 3 letters. (no, they weren't F-U-C...) It’s hard to describe the bizarre sensation I get in my hand when I use it, but it becomes so overwhelming my hand freezes up. It’s similar to trying to run in deep water, only it’s my hand. At least that’s how it feels right now while typing. Oh yeah…I made myself use both hands to type this.

Mommy is still broken, but a little boy’s tenacity and his cluttered toy box are going to put me back together again, one jumpy-jump-jump at a time. Quit breaking the damn crayons, it’s mommy’s turn.

Wednesday, July 27, 2011

Help Wanted. (Not.)

I was sitting in the waiting room in my wheelchair, balancing my purse, a folder, and some more paperwork on my lap. I cautiously opened the folder, which began to slide away from me, and tried to place the papers inside; a very simple, no-brain task for an able bodied person. My right hand was almost useless and my right leg kept flopping to the side, refusing to cooperate with my other leg to form an actual lap. I came pretty damn close to dropping all of it on the floor. As I finally got the paperwork to slide inside the folder I heard a woman say softly, "Good job. I almost got up to help you but realized I wouldn't be helping you."

That is one of the coolest things anyone has said to me. She is absolutely right. While there are things that I truly can't do yet, there are a ton of things I can do if I focus and give my body an opportunity to do them. What I certainly don't need is someone assuming I can't or worse, not giving me time and personal space to make an attempt. When you're disabled, people want to be helpful. But they have a hard time understanding when help is warranted.

I’m learning to hold things again, which means I’ll be dropping things in the meantime. I’m learning to walk again, which means I’m going to stumble. No, I don't need you to catch me or make me sit down. I need you to let me be. It may frighten you to know that I might fall and truthfully, I already have. I slipped right off the couch and landed on my bad knee. Yes, it hurt like hell. But guess what? I could feel it hurt. Guess what else? I managed to get back up onto the couch by myself. Tired and sore isn’t exactly tragic. I understand it must be hard to watch me struggle at times, but it is in the struggle that I learn. Ask me if I need help and I’ll answer honestly. Otherwise, let me be. I don’t always know if I need help, but I appreciate the respect to allow me to assess that for myself. Thanks.

Monday, July 18, 2011

Let's Do This

I was looking forward to my first day back in rehab because I wanted to see what they thought of my progress. I was on my own practicing for 2 weeks and I was beginning to doubt if I was doing an adequate job at home. First visit with new therapists is always an evaluation. They need to assess where you're at so by the next visit they can hand pick the instruments of torture most suitable for your particular disability. Humans are naive and gullible by nature so we quickly forget there is an agenda and think "hey this is pretty easy! It doesn't really hurt so bad." Duh, stupid. This is the eval. They're assuming I can't do squat just to humor me for their little tests. A series of tests I began zipping through. The therapist said he was surprised to see how well I was doing. He hadn't planned on testing coordination since he thought I wouldn't be ready. While he went to grab the coordination activities, I took a moment to pat myself on the back for being so awesome.  He came back with a big wooden block with 12 holes in it. I had to put 12 little wooden pegs into the holes one at a time. It was challenging, but I managed to do it in 44 seconds. (I told you. I'm awesome.) So that was it. I showed them I could transfer (get from wheelchair to bed), hobble with a walker, and stick pegs in holes. Piece of cake.

Today was my 2nd visit with OT. As he wheeled me down the hall, we approached the room where I had displayed my awesomeness, only this time we kept going. Wait! Where are you taking me?! Ah shit! Folks, this is when reality hits. Last week was an eval. Today he had chosen his weapons wisely: a yard stick, a beach ball, and most gruesome of all, my own body weight. Oh the humanity! I lied on my back and raised the beach ball up and over my head and endured the horrific, sharp, spastic pain that ensued. 45min of various movements and stretches and tears. When you can't feel much in your joints and suddenly feel popping and stabbing, it's scary. The brain wants you to stop. The sadist wants you to keep going.

I was surprised that by the time we were done, my shoulder felt great! No really, it did. All the work I've been doing at home has been great for forward range of motion and hand movement, but my poor shoulder has been neglected. The pain will always be bad if you don't attempt to work through it. Pain makes us shy away from that which can help us. While it's far more easily said than done, it needs to be done. So do it.

Tuesday, July 12, 2011

Suck it Up

My right foot and I are not on speaking terms at the moment. Since I had my stroke, my right foot has felt like I’m wearing a sock that is way too small and someone is pulling it on tighter and tighter against my will. It’s also swollen nice and fat, apparently a byproduct of its lack of use. Useless, fat and uncomfortable…I think I’ll name it Bertha. I think that’s a name fit for a fat old hag. I don’t know what her deal is, but she is hell-bent on betraying me. I’ve been dragging her sorry ass around for over a month now and it’s getting old. Today was a rough day. And that was just my foot. My so-called good arm suffers from severe carpal tunnel syndrome. So while my right arm is still too paralyzed to be useful, my left arm spent most of the day burning and going numb.

Yeah, yeah…suck it up. It could be so much worse. Today was not painful because I have it so bad. It was painful because I pushed myself harder today than I have since this all went down. A walker requires both hands which is fine if you don’t ever need to hold anything while walking. I was so busy trying to do little things for my son that I actually ditched the walker at one point. Granted, I almost fell a few times but I started strategically planning my route to lean against walls, grab on to chairs, etc so I could get his food from the kitchen to the table. Then I had to get to where his bibs are, coerce him to come with me to the table, and help him climb up on a chair (highchair was obviously out of the question) so I could feed him with the good arm that was going numb from the carpal tunnel. Whew! And that was just breakfast.

I don’t know what I was thinking. Then again, I guess moms don’t really think about why. I won’t bore you with a play-by-play of the rest of my day but it was basically a lot more of the same sprinkled with a few trips up and down the stairs. I even managed to get 4 full size pillows and a large blanket up the 15 stairs to our bedroom in one trip; One long, painful, sweaty, dangerous, albeit stupid, trip. So yeah Bertha is pretty pissed off at me right now. I’m sure she’ll be handing me my ass tomorrow.

“There is no try, only do.”   ~Yoda

Tuesday, July 5, 2011

Could be runnin' this $hit

I’ve been home 5 days now. It’s so much different than being in the hospital or rehab. We baby-proof our homes, but we don't mommy-proof them. The people that do help are left to wing it and hope they don’t hurt you or invade your space. They inevitably do of course. If you’ve had a toddler in your life, you know it’s impossible to sit or lie down without becoming an instant indoor jungle gym. At first it was scary. I can’t feel all of my arm, leg, or foot so I couldn’t tell if my son was getting a little too crazy stepping and climbing on me. Then I realized that every time we play together I can feel sensation just a little bit more. Yeah it hurts like hell. But with every cringe I know in some twisted way it’s helping me.

I’ve also found that swatting my son’s fingers away from his nose has made for some great OT (Occupational Therapy for you noobs.) At first I could only swat; now if I concentrate really hard I can make a half grip with my bad hand and snag his forearm to yank his hand from his face. (Of course if the kid fights me, he wins which may be setting a dangerous precedent around here.) Luckily he’s a rambunctious boy who loves slapstick. He’d gladly pick his nose for half hour just to giggle at me trying to stop him. So yaay boogers! Or should I say “thera-boogers…” *snort*



I guess this makes it official. I’m a cripple. I’ve only been out in public once, so I’m not so sure I feel different. I notice other disabled people get treated nice probably because everyone feels sorry for them. But then I was thinking of how hot girls always get preferential treatment, which gave me a fabulous idea. If I continue to lose weight, maybe JUST MAYBE I could be a hot, crippled chick! Ah dude! I’d be running this shit! Just sayin’. Do you think it would be illegal to color red lips on my handicap placard?

Friday, July 1, 2011

Home Sweet Home

I’ve been home over 24 hours now. It feels good but it’s strange too. It’s my home but I have to learn my way around all over again. I spent 2 ½ weeks preparing for this. I told my PT that I lived in a 2 story condo and there is no way anyone was going to stop me from getting upstairs. In PTese that translates to “I’m a masochist. Bring it, bitch.” And they did. I practiced everyday with a walker. In the beginning I could hardly stand, but 3 hours of therapy a day began to make a difference. Last weekend I finally managed to walk – well more like hobble – 100ft. I thought I was going to pass out from exhaustion. I can’t move my ankle at all so I had almost no control over where my foot landed. I kept kicking the walker and damn near kicked it out from under me. But since I sucked it up and made it to the blue tape line on the floor, PT said “That was great! Now let’s try stairs!” Um…seriously? Oh right. I wanted this.

I think it was exactly a week ago that they had me step up on one of those Step Reebok aerobic step things just to try. They placed it in between 2 parallel bars so I could hold on – not with both hands by the way, as my right hand is useless. My husband and I giggle whenever they mention me on the parallel bars. As if I’m going to wheel myself into the gym wearing a sequined leotard and execute a wicked cherry drop from 20ft in the air, then land a flawless dismount on one leg with my left hand perfectly poised in the air. Come on. You know it crossed your mind.

I eventually graduated to real stairs. Not a full flight of stairs, but 4 stairs. I’d get so dizzy by the time I got to the top, sometimes resulting in vertigo. I’d take a 2 hour nap every time we finished a session.  I’ve been home now over 24 hours. I keep forgetting to count the stairs but there are at least 15. I’ve been upstairs about 4 times now. I’m not allowed to try alone because it’s too dangerous but damnit I got to sleep in my bed with my husband and toddler for the first time in 23 days. My son insisted on sharing a pillow with me. When I came to in the middle of the night, I found his little arm wrapped around mine. I still can’t walk too well with the walker, but I’ll get there. In the meantime I’m enjoying my wheelchair which I learned was modified for a dwarf. (I’m not joking but you can laugh anyway. I did.) At 4’11” it’s rare that I sit in any chair that allows my feet to touch the floor so this is pretty damn sweet.

And the best part of my first night home? No, it’s not the name brand toilet paper (although it may be tied for 2nd best thing.) The best thing is that I got to sleep in the dark. Comfort is a thorn in someone else’s ass now.

Wednesday, June 29, 2011

Mrs. Dash can suck it.

It's no secret that waking up paralysed makes one suddenly realize how much we take for granted. Apparently what I have is considered a form of paralysis. For about 3 weeks now I've been telling everyone "no, I'm not paralyzed I just can't really move." Um duh, Gellie. It wasn't until I saw a copy of my off work order that read "hemiparesis" that the light bulb went off. I'm paralysed.

Sure I'm gaining movement. I'm no Christopher Reeves but its slowly sinking in I'm the "D" word. I can move my arm - not with ease, but I can move it. I can make a fist - not to hold anything, but I can sort of clench it. I can't walk, but I can move my leg. I can stand with a walker and take very wobbly steps. Still wheelchair-bound for the most part. So that's the obvious. Those are things that scare us: not walking, writing, brushing teeth with the hand you're meant to. But what doesn't occur to you until you've lost these abilities is all the other little things taken from you.

For the past 22dys a whole team of people have been putting my things away for me, drying my hair, moving my phone charger to a "logical" place, and you know what? It blows. They put my shit where I can't reach it and don't dry my hair right so it wets my back so I can't slip on a sports bra because it bunches up and sticks to my skin which makes me short of breath which makes me dizzy so I have to stop what I'm doing even if a boob is still hanging out to catch my breath so I don't keel over. Right about the same time some unsuspecting nurse assistant waltzes in to check your blood sugar and feed you colorful meds that you don't even know the names of.

Ah hell. This wasn't supposed to be a rant. This may all sound trivial. But when this is every moment of everyday of your life you can't help but wonder when the fuck will I gain some autonomy over my own life again.

I can deal with watching local channels instead of cable, decaf instead of coffee which I learned the hard way makes me ill, and I've even learned to write with my left-hand. Not pretty or fast, but I can do it.

Funny. My carefree hippie self used to think that people who allowed themselves to be naked in front of others were so free. Now it feels like I won't be free until I can go a full 24hrs without someone seeing me naked.

Oh and salt. I must say that going 22dys with almost zero salt is enlightening. It has made me realize that I LOVE SALT! FOR FUCK'S SAKE, PASS THE DAMN SALT! Mrs. Dash can suck it. No really, this wasn't supposed to be a rant.

Monday, June 27, 2011

Comfort

At 6am this morning, I was snug as a bug in my bed (which is rare when you're partially paralysed) and BAM! go the lights. Not one, dim, respectful light but all the goddamn lights. I hear a loud, boisterous, annoying voice say:

Ms. Kim! Ms. Kim! Good morning!

Me: *makes very nasty face, clenches fist, contemplates knuckle sandwich allocation*

CNA: *still too fucking loud* I'm here to check your blood sugar!

Me: *continues nasty face and slightly opens eyes*

CNA: Oh good! You're awake! Hi, I'm Comfort!

I'll let that stew for a moment. Her name...her friggin name...is COMFORT!

I can be a patient person. Not because I'm patient on the inside, but more because I don't like confrontation and I don't like to make people feel stupid. Even if they are really, really stupid. Every morning between 5-6am, nurse assistants make the rounds for vitals. Why oh why oh why they feel it is necessary to flick on ALL the lights and announce themselves as if preparing for a public speech is beyond me. This is just about every morning by the way. Some mornings I get lucky and the CNA remembers my I'm-about-to-kick-your-ass face and proceeds with a little more discretion. Something tells me Ms. Comfort isn't too bright. Which means the lights will be. *facepalm*

On a brighter note, there's been a new patient here who's a grumpy old man who always has a scowl on his face. It makes me smile. I think because he's so damn grumpy he looks like a character in a funny movie. He throws me dirty looks whenever I make eye contact with him. Maybe being surrounded by sick people is a constant reminder that he's in a fucked up situation. Today they put me next to him at the lunch table. I left him alone. At first. By his 2nd bite he was dropping his 5th f-bomb and there, in that moment, I knew we were gonna be friends. I love mean old people who swear.

He kept eating, mumbling under his breath, and I realized he was struggling with a packet of Mrs. Dash. "Ah fuck," he muttered. I leaned towards him and said "those things are a pain in the ass, I know!" I prepared myself to be told off for not minding my business. His stern face slowly looked up at me and LAUGHED! I made Mr. Crabbypants laugh! WINNING!!

Now if I can just get Comfort to leave me the fuck alone.

Saturday, June 25, 2011

Glimpses

I saw my boy today. He's talking more now. It really hit home how much I'm missing. Like Rip van Winkle living in a cave, life goes on without me only I'm not sleeping. I sit in this room most of the day catching glimpses of real life thru short phone calls and tidbits shared online by friends. I don't really get to immerse myself in what's going on, but rather skim the highlights like customized Cliff Notes written on the fly. As a parent its hard to not feel like the bond with your child may be somehow compromised in a situation like this. Family crises lead to inevitable spoiling that just might be more appealing than a date with your crippled mom. I wheeled myself to the restroom and when I shut the door, I could hear my son frantically call out "Mama? Mama?" He thought I left without him. I called out to let him know I was still there and then quietly wept before coming out to join them. It was the first time I had ever heard genuine worry in my baby's voice. Oh mom guilt is a mindfuck. But I also felt empowered to know that he hasn't drifted from me at all. If anything he stuck by my side more today than ever. I'll be going home to him soon. And in the meantime I'll snuggle up to Cliff Notes if that's all I can get.

Thursday, June 23, 2011

The Short Bus

I just can't do it .I was invited by the activities director to go to a street fair tonight. But alas it is not shower day. I don't have my wallet. And truthfully I just can't get on the short bus.

I've been out and about many times and have seen special needs adults out on a group outing. We've all seen them. Our hearts go out to them for trying so hard and we're happy for them getting out to do something fun. I always make eye contact and smile in an effort to do my part to make them feel normal. But that's them. That's their plight. That's not me. I just can't do it. I just can't get wheeled around in a wheelchair by a stranger in public while passers by stare at me with pity and wonder how the hell I ended up on the short bus. I'm wondering the same damn thing. I'm not vain. But I'm not "special". And I'm not ready to consider myself handicapped. This is temporary. Fucking temporary.

The Low-Down

I'm 32. I'm a suburban wife and mom of an insane almost 2yr old. I work a corporate job by day and rock out at home with my  husband by night. We're a fairly typical Offbeat family.

Two weeks ago I woke up like I do every morning at 5am. I was a little dizzy and my right arm felt a  little weird. I've been diabetic since I was 8 years old so waking up feeling a little off isn't that unusual. I also have carpal tunnel so my arm feeling tingly isn't that weird. I showered, dressed and went to the dentist for my 6month cleaning. When I left, the dizziness was a bit worse. I hadn't had breakfast so naturally I figured I had to eat. Off to Subway I went for a quick English muffin and a cup o Joe. It was about 9am at this point and I had to get to the office. I got on the freeway and drove about 15 miles to work. When I got out of the car, I swayed and had to steady my balance before making the trek across the parking lot then thru the massive office building to my cubicle. I checked my blood sugar to make sure I wasn't hypoglycemic. I wasn't.

I made it to my desk and endured some friendly razzing for being late. A co-worker noticed I kept holding my forehead. I can't quite explain it but I didn't have a headache. It was more like my eyes couldn't focus. I worked for a couple of hours and as I wrote things down my right arm (yes I'm right-handed) started to feel numb and tight in different spots. Well because we're good little tools our company rewarded us with a visit from the Hot Dog on a Stick truck. Hot damn. Free corn dogs and lemonade complete with the bouncing teenage girls in those stupid Tweedle Dee get-ups. I stood up to go all the way back out to the parking lot. As I'm typing this I'm realizing how crazy this sounds. No, I don't love corn dogs that much. I just really thought my body was off from waiting too long for breakfast and then chugging coffee. So I went to grab my free corn dog in hopes of chatting with my friends before getting back to my stressful day. By the time the girl in the stupid hat gave me my order, I knew something was terribly wrong. I walked as fast as I could back thru the building all the way to my desk. I remember telling myself to not stop or slow down. I feared if I did I would topple over. I made it.

I sat down, and true to myself cracked a few lame jokes about the processed junk food the Man used to appease us. I stood up to grab something and stumbled. Then came the tears. I looked at my co-worker over the cubicle wall and she knew by my expression I just wasn't ok. She told me to call my husband and go. And I did.

I waited in the lobby for my husband to get there, as I knew I couldn't get behind the wheel again. I screwed around on Facebook to pass the time. When he got there we still didn't go to the ER. I went home first to decide what to do. When you're 32, the word "stroke" just doesn't occur to you. At least to me it didn't. Hell, other than dizzy spells and a tingly arm I was functioning fairly well. It took 3 phone calls but I got in to see my regular Dr. She couldn't figure out what is was either. She said "I don't think you're having a stroke but I think its best if I call an ambulance to take you to the hospital. They'll have the equipment to rule it out."

A WHAT?! Did she just say the "s" word! I don't even really know what a stroke is. It's some messed up shit that makes old people's faces melt and their handwriting all shaky. My face isn't melted. I can write just fine!

In the ER a CT Scan revealed "something." The medical term - I swear I'm not joking - is "non specific". Yeah. Thanks for clearing that up. I thought I had a tumor. What the hell else could it be. Double vision had set in to the point I was getting vertigo. I called my husband who by this time had taken my son home. I had asked him to go ahead and leave because our little one missed his nap and we were approaching meltdown. I let him know that we still knew nothing and I'd be admitted.

This post is already so freakin long so I'm going to give you the rest in a nutshell. I awoke the next morning in the hospital still with double vision, funny feeling but functioning arm and now a funny feeling foot. I was admitted Tues night. By Thu I couldn't walk anymore. They brought me a form to sign and I dropped the pen. I couldn't hold a fork or text on my  touch screen phone with my right hand anymore. By Fri it was realized that my stroke had never stopped.

After much bureaucracy that I won't get into, I was moved to a critical care unit and started on a Heparin drip. Heparin is an aggressive blood thinner and I was to remain on it for 5 straight days. Within 12 hours I finally stabilized. I didn't get better but I stopped getting worse. After 8 full days in the hospital I was transferred to a rehabilitation facility.

I've been here 8 days now. Still can't walk or write but the aggressive physical therapy is making a difference. I plan to blog as I make this journey. And to those of you who read along, I thank you for giving a shit. I promise my future posts won't be so damn long. Peace.