There is No Try, Only Do

I posted a few months back about my follow-up neurology appointment. If you don’t remember or didn’t read it, here’s a recap:

Dr. No (that’s what we’ll call him) was nice but told me I’d never walk, write or work like a normal person. I came home depressed and pissed off, hand wrote a fuck you letter which I posted to show you all what a dipshit he is, because um duh as you can see I just hand wrote a fuck you letter.

Fastforward a few months and it’s time to follow up with Dr. No. I was excited to make the appointment so I could show him that I can walk with a cane (he said I never would,) I can write so that my handwriting looks like it did before my stroke (although I still can’t feel my hand,) and I have taught myself to type 55 words per minute. I couldn’t wait to say, “BAM! IN YO’ FACE!”

Guess what happened. The hospital informed me that he doesn’t work there anymore. WHAT! Overwhelmed with mixed emotions, I quickly brought up the hospital’s website for a game of eenie-meenie-miney-moe because ah crap now I’ve got to pick a new neuro. This should be a good thing. This really could be a good thing. I get to pick one – a rare treat in the world of American HMOs. I can’t screw this up!

The girl on the phone helped me narrow down the choices, and I read their bios. Dr. #1 was a neuro who also belonged to the Board of Psychiatry (barf.) Dr. #2 was a neuro with a specialty noted only as “movement.” Dr. No had tried to push anti-depressants because he said all stroke patients suffer from depression and if I’m too sad I won’t push myself. Obviously, he’s not a golfer.

I’ve been called of a lot of things; “clinically depressed” is not one of them. Now weary of any doctor with a psych background, I chose the movement guy.

I met him last week. I love him. He was the complete opposite of the original neurologist. He heard me out, encouraged me to keep trying, and agreed that pills suck and I shouldn’t take anything that isn’t directly related to stroke prevention.

I will never be 100%. I can say that out loud, I can type it, and you know what? I’m ok with it. My stroke occurred in my brain stem. It is a bit different than other people’s strokes. Brain stem stroke survivors don’t usually have a good prognosis, and many of them never make it to where I am now. From that perspective, I’m pretty damn lucky. I will never be 100%. So what.

My new doctor knows I’ll never be back to my old self, but that was never the focus of our visit. He wanted to see what I could do, but even that wasn’t the focus. His main concern was what I want to do, and how he can help me do it. I can’t do a lot of things. It doesn’t mean I can’t do anything. I’ll continue to follow up with Dr. Do (yes that really is his name) and take it one step at a time.

The Sorcerer’s Stoned

I've been sick on and off for about 5 weeks now. I'm guessing that’s how long it has been because I've completely lost my concept of time. Hence, my blog has been neglected. Oh I’ve had all sorts of drug-induced material floating in my head. Of course now that I’m at the computer I can’t remember much of it. Damn shame because it was some good stuff. I did manage to read through all 7 Harry Potter books for the first time. My mind is still blown. Perhaps it’s Harry’s fault that I haven’t posted. Yeah that’s it.

I suppose some of you are expecting an update on my recovery. Well I’m pleased to announce that on Christmas morning (or maybe the next day – I was high) I suddenly felt saucy and decided to forgo the shower bench. That’s right. I took a shower like a normal person. No bench, no safety bars, no help. In retrospect I probably should have informed someone just in case it went badly but what the hell. I did it! Stepping over the wall of the tub to get in and out is tricky. I admit that while getting out I started to fall over, but thankfully there’s plenty of wall there to break my fall. I managed to ricochet like a pinball back into upright position. Then I did exactly what you’re thinking I would do: I held the towel around me half-assed, did the cabbage patch with my good arm and hobbled to the top of the stairwell to yell down to my family my glorious news! It was a Christmas miracle! OK maybe not, but it felt awesome.

The shower bench is still set aside in my room just in case I have a bad day and need it, but so far it’s become another clothes rack. I still have the wheelchair I came home with too. I haven’t used it in months. Same deal with the walker. I’m really afraid to let these things go. I feel like if I get rid of them, I’ve suddenly made this declaration that I am healed. Don’t get me wrong – I want to be healed. There is just this sense of safety in knowing that I’m not. I have this fear that if I appear to be healed, no one will understand why my body and mind betray me. It’s as if hanging on to these things is the last thing saving me from being thrown to the wolves. I hope I’m making sense. I should probably mention the Tylenol+Codeine I took a little while ago. (I’ve got a damn ear infection if you must know.)

Getting sick repeatedly over the last several weeks has knocked me off track as far as a daily routine. I went quite a while without stretching my spastic shoulder. Surprisingly, I’m not doing so badly. I’ve lost some range due to stiffness but I feel like I can move it with decent precision. It is possible that this strength and confidence is a byproduct of the codeine, but I’m ok with that. Apparently it’s 2012 now. If it wasn’t for my phone I wouldn’t know that. Well cheers. I need a nap.

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 naïve 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.

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 ;)

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.

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."

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.