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.

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.

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.      

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.

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.

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

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.