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.