Memories from Recovery

I think it is important to remember this stuff even if it hurts a little so that when time goes by and I get sad or feel bad about myself, I can look back and see how far I’ve come. I don’t like to think of it this way (I think it makes me sound like a horrendous douche) but it’s kind of amazing that I am relatively normal after everything that’s happened…

I had my surgery Jan-28 2014

Feb-20 2014 I lost the use of my right hand

Feb-22 2014 I lost the use of my right leg

Early March I was still using a walker or hobbling while dragging my right leg behind me. My right arm was still curled up uselessly to my chest. I couldn’t even use it for balance or to grip my walker. I needed to sit just to take a shower and I could only use one hand in there. Ugh …I weighed 220 pounds!

Rommy who is also a physical therapist would come by every week to try to get me walking. At that point I couldn’t lift myself well enough to get into my own bed. By mid March I could use a cane to get around (not too well but I was not going to use that walker for one more day!) It felt so demeaning! Finally, thankfully, I was able to start PT.

I had PT 3 times a week. It started off so hard for me that I couldn’t even hold my balance with my feet together. Once I had my first week of PT sessions and learned how to practice at home, I worked at rehabilitating my leg 24/7.

Some of the exercises which were so frustrating and hard for me at first—

Standing straight with my feet together

Walking heal-to-toe

Walking backward

Standing on a tile and touching the toe of one foot to the three bordering tiles

Standing on one foot with my arms above my head

Standing heal to toe with my arms crossed over my chest

By mid April I could use my leg again. It was not the same as it had been but it was sturdy and stable enough to stand on for short bursts. I knew that in the course of my daily activities it would get back to normal (I went for a walk every day, started off just 10 minutes and I couldn’t even maneuver the smallest hill or tree root or crack in the sidewalk) but I forced myself to go a little farther every day. I would always have to limp back and there were a few times I was scared I wouldn’t make it home but I needed to push myself. For the first few weeks I took my mom with me every time in case I fell down or anything.

All of my focus then switched to my arm. From my shoulder down it was useless. I remember at one point carrying my dinner plate in my left hand and trying to put a bottle of water between my bicep and my chest just so I could get to the table and my arm was so shaky and jerky that not only did it drop the bottle but it knocked the dinner plate from my hand.

Things that you use you right hand for and don’t even realize it, there are so many things but just to name a few…

Opening a can (requires 2 hands)

Working the mouse of a computer

Brushing your teeth or any bathroom activity

Opening any kind of sealed package or bottle like shampoo (requires 2 hands)

Sending a text (usually takes two thumbs or one to hold the phone and one to type)

Tweezing eyebrows

Putting on make up

Reading a book (one hand to hold the book, one to turn the page)

My friends and family would joke that my right hand had a mind of its own. It would hit me in the face while I was sleeping, it would knock things over, throw things, it would tap people… a few times even hit people. It was kinda funny but also really scary for me. I didn’t know if I was ever going to get any better and a part of my brain had been removed, for all I knew I would be like this forever. That thought scared me so much that I’d tell myself “I KNEW I’d get better,” I secretly doubted it sometimes and it felt hopeless but I always made myself think, “you ARE going to get better, you’re just not trying hard enough! TRY HARDER!” Ok I know this sounds weirdly abrasive but mentally calling yourself a lazy bitch is a very powerful motivator.

To rehab my hand I started with bouncing a beach ball. For me it was impossible but I kept at it until I could manage a steady dribble. I remember trying this game with shot glasses (plastic ones) and ping pong balls. You lay out all the shot glasses and try to put a ping pong ball in each. I started out not even being able to put out the shot glasses. My hand was so jerky that it would put out a glass or two and while trying to put another it would bump the other or hit them hard and send them flying across the room. To top it off I couldn’t even grab a ping pong ball. With extreme concentration I could maybe grab one ball in about 5 minutes and hold it for just a few seconds.

Some games I played to rehab my hand

Ball and shot glass

Flip over the dominos—spread out the dominos and flip each over (this took 14 min. at first)

Mancala

Tying my shoe laces

Throw a bean bag at a target

Knitting

Catch (this was one of the last things, when I was almost all better)

Concentration (picking up the cards from the floor is hard for a healthy person)

Stacking things like coins

Putting macaroni on a shoe lace

Writing the alphabet 3 times

Hitting a balloon back and forth with someone

Some of those games were too hard for me at first but from sun up to sun down I would work on my hand. I would work so hard my muscles would hurt. Part of my daily regimen was to get on all fours on a yoga mat and then to lift up one hand then rotate hands and legs and then end up by lifting one hand and the opposite leg at the same time. I had to do this 20 times per side. It sounds easy and it is easy for a healthy person but it was work for me. Doing this every morning was tiring and it made everything hurt for weeks but once I adjusted, this activity had more or less retrained the bigger muscles in my arm. It was time for fine motor skills.

I remember sitting at my desk with my hands on my keyboard and tensing every muscle in my upper arm to keep my hand from shaking. It took every ounce of concentration in my body to keep my hand touching the keys without randomly pressing every button (at the time my hand would always want to slap downward forcefully, if I had let it, it would have smacked down on the keys and probably broken a few). At first, I would just hover my left hand over my right and push each finger in my right hand down on the appropriate key, until I got the hang of applying gentle pressure. With practice I could type a whole sentence normally; it would just take about 15 minutes and lots of effort.

Writing and typing wasn’t the true test though. It was arduous and just the memory of it makes me tired but the real test of my coordination was handling sharp objects. If I had tried to handle a knife or scissors before I would have accidentally killed myself or someone else. I got to a stage in my recovery where I had this weird problem…I could grip things but I had no coordination so I would hold onto something very tightly and wave it uncontrollably. Usually this happened when I wasn’t thinking about it, mindless actions that you are so used to using your right hand for that you don’t think about it until it’s too late. Like if someone said pass the remote, for example. So it is pretty obvious why grabbing a knife was so dangerous.

I remember passing my OT eval on May 6 and I came straight home and decided to cut my name out of a piece of paper (I thought scissors would be the safer bet). I did it easily. It was about a week before I had the courage to try a knife though.

I don’t know if I can really over stress the amount of time and effort that went into PT and OT. I’m not exaggerating when I say that every waking moment was spent on this. When I was working on PT, I didn’t sit. Every moment of every day was spent standing and during OT my hands never stopped moving. But I did watch days and days and days worth of television (because I couldn’t leave the house—not at first anyway) to keep my mind off the constant repetition that my body was doing and it pretty effectively kept me from getting bored. I was in the hospital for late January-early March so I had lots of TV shows to catch up on.

By the end of May I had regained most of the control I had lost. The only thing I still couldn’t do was control my tongue. Since the part of my brain that controls coordination for the right side of my body had been removed, something you don’t really think about is your tongue. I had no control over the right side of my tongue. All my words dragged, I stuttered, I had to talk extremely slow just to be understood. I felt like I had to start off every conversation with a disclaimer “I don’t normally talk like this but I just had brain surgery” but I couldn’t even say that many words in a row without tripping all over it. For a person with aspirations of teaching, a degree in history, an excellent vocabulary, and friendly personality this was the most soul crushing part of it. I couldn’t even smile at people because if they had started a conversation with me, I would not have been able to participate in return. Everyone was so nice about this and they pretended they didn’t notice the difference but in a way that was almost more insulting (I know they didn’t mean it that way. Rationally, I know they were being really kind about the whole matter). I didn’t express it this way because I am not an ass but the way it felt was that they expected little of me. I wanted to shout “This is not the best I can do!”

There was no real way to rehab my tongue except for conversation. I had to get over my fear of how I might sound to people and just talk. I felt embarrassed and shy but everyone I knew, knew the situation so they were not judgmental if I slipped up. To this day (over a year later) it still happens from time to time. I know what I want to say, I have all the words lined up and ready to go but I just lack the physical ability to say them. Sometimes I just say half a sentence and then nothing or I open my mouth and just garbled sound comes out but it is much better than before.

The two things that have had the longest effect and consequently have been the things I’m most ashamed of have been my hair and my weight.

I know hair grows. I tell myself this all the time, “hair grows, it’s no big deal” but I miss my hair so badly. When my head was shaved for my surgery, part of me was grateful that I survived but most of me was irrationally grieving for my lost hair. I am extremely aware that it made no sense in the grand scheme of things. I know I should have just been happy that I no longer had to live in crippling pain that was so intense it would cause nose bleeds or that I no longer had to deal with 10 or more seizures a day that were so bad I would lose consciousness and pee all over myself but somehow getting my head shaved was a little bit worse. I’d like to chock it up to this (but truthfully in those first few months I’m not sure I was even thinking deep enough for this to occur to me) I didn’t have much left. I had lost a piece of my brain and skull, my ability to walk and talk and write, my figure—I couldn’t even fit in my clothes, and a little bit of sanity and ON TOP OF EVERYTHING ELSE, MY HAIR TOO?! It was like the last straw for me. I think I cried more over my hair than anything else in this whole ordeal!

On a more physical level for the first few months it made my incisions very visible. Sometimes I would be fine, going about my PT business and catch a glimpse of myself and it was like staring at a fat stranger. They did the surgery while I was on my side (which I am told is pretty cutting edge and shaved a few hours off my surgery) but to do it this way they had to bolt my head into this cradle and it had six screws on it and one bolt scar just so happened to be dead center on my forehead (now it is just a hardly noticeable little indentation but then it was a gross bloody hole). Then I had a tube that drained excess spinal fluid out of my skull and that left about an inch and a half long scar in the front/right part of my head. Luckily the main surgery scar was at the back of my head and I didn’t have so see it (maybe that sounds like a small, shrug it off, who cares kinda thing but to not have that big ugly scar somewhere I could focus on it daily was a HUGE relief). Also after I got home, like 6 weeks after the surgery, I still had blue marker drawn all over my head. It wasn’t enough that I had these pealing nasty scabs now (and that I was ordered not to wet my head for a while) but I also had these surgical marker lines (meant not to wipe off). I had a dotted line down the center of my head for almost 2 months.

Then when I had gained back some of the motion in my leg and I could hobble a bit without my cane, I visited a friend’s house (she told me she’d tweeze my eyebrows for me since I couldn’t). We ended up getting super drunk and I bleached my hair blond. So when I talk about not recognizing myself in the mirror, I’m not entirely being figurative. There were a few times I startled myself at first, thinking for a second there was someone else in the bathroom mirror. This change was insane and impulsive and maybe it was a good idea in theory (my attempt to have fun with the little hair that I had) but it had unforeseen consequences. It made my hair (which was finally growing long enough to almost cover my scars) transparent. My scars stuck out like fire in my newly blonde hair. At least I only had to deal with that for about a month before my brown hair covered my scars and it just looked like I had purposefully done some blonde tips.

The hair is still an ongoing thing. It just long enough to look like I might have gotten this as a haircut on purpose but it is still short. The part of my hair that is where bangs usually are, is still only half way down my face. It’s just long enough to get in the way of absolutely everything and not even close to long enough for a ponytail. I miss my hair!

Starting in November of 2013 I started taking steroids for the swelling in my brain. It fucked up my whole life. I am not kidding it made me not able to function as a person. The only thing it was good for was the brain swelling. Believe that! ‘cause I tried to stop taking it so I could live a normal life again and I have never experienced pain like that before in my life. Like freeze you where you stand, wishing you were dead kinda agony. To start off with in 3 months they made me gain 40 pounds. They made me constantly hot and moody. I was totally unable to sleep—I thought I might accidentally kill myself mixing so many sleep aids, and after 2 ambien, 4 melatonin, 2 guzzles of zquil some benedryl, and 2 pain killers I’d still only sleep like 4 hours. Also, weirdly enough, the same steroids that were helping reduce brain swelling were causing all my joints to swell to the point that it ached just to put socks on. To top it all off they made me so constipated. Needless to say I hated those things passionately. In a weird medicated craze I wrote in permanent marker on them “if you don’t take them you’ll die, if you do take them you’ll only wish you were dead.”

Anyway so back to the point here. Overnight, it seemed, I had gained 40 pounds and when I first got home I couldn’t walk well enough to exercise so I changed my diet drastically. The steroids had made me constantly hungry so now that I was off them I could eat normally again so the diet change wasn’t too hard but it wasn’t very effective. It was then that I first started noticing the stretch marks. I’m still extremely repulsed by them but I guess I couldn’t come out of this without a mark to show for it. The surgery scars are conveniently hidden by hair but those marks will always be there for me to see. It still bothers me so much, I know it shouldn’t. I should just be happy that I made it through all this or even come to see those as some kind of representation of survival or some ridiculous crap like that. Maybe one day, for now I am steadfast in my disgust and revulsion.

From March to May I only lost about 15 pounds but in May I finished my therapy so I could devote all the time I had been using for rehab toward an exercise regimen. By July I had lost 27 pounds and in September I was back to the weight I’d been before my surgery and actually a few pounds lighter. I’ve gained some back now (I chock that up to being in a loving, happy relationship) but it’s something I know I need to work on. I can’t let all that hard work to get it off in the first place be for nothing.

So this is a little reminder from your recovery days. Remember that it was a painful and tiring and frustrating and it felt futile but you did it. I hate to sound obnoxious but if ever there is a time in your future where you feel like something is insurmountable, remember this. Memories fade as time goes by and in some years it may seem like this was a small feat but this was a pivotal, make or break, moment in your life and you overcame. Hugs from March 2015J