Click the picture for the story of Calypso, the Three Legged Green Sea Turtle, and why she's my symbol

Thursday, May 27, 2010

Too freaking hot

It's too freaking hot here. It's not even June yet and the temp is already hitting the 90's. This wouldn't be so much of a problem if it wasn't for the humidity. There was a reason I went out to Colorado and it was because of weather like this.

This weather is supporting my "Peter is an 80 year old man" theory. I can feel my joints swell up when rain clouds are heading in. This makes it even worse getting up in the mornings, since I always start out creaky and sore to begin with. Mostly it is just too hot do anything, since who wants to go out when it's this beastly hot.

I'm not completely new to this type of heat. I spent two summers in North Carolina, with heat that puts this to shame (I'm sure I'm jinxing myself with these words). Both these summers I spent mostly hiding indoors with AC to help me. This isn't really a practical option for this summer however, since the cold of the AC makes my joints hurt worse than the clouds.

To top it all off, my time in the hospital for so long has made me a ghost of my former self (to anyone who knows me and how pale I started, they will understand the gravity of this statement). So I can't stand the sun, the cold makes me hurt, rain makes me ache, and sunshine leaves me crispy. Talk about a rock and a hard place.

Wednesday, May 26, 2010

Adventures in Walking: A Leg Brace

My therapists have finally caved. Sort of.

There has been an ongoing discussion over whether to use a leg brace to practice walking. I have been highly in favor of using one, while my therapists wanted to wait as long as they could before using a brace. They do have good reasons for this: once you brace up a leg permanently you risk stopping the return of function to the leg. Since I have slowly been getting return of function to my left leg, I bowed to their experience, if somewhat reluctantly.

But now I've started using a brace as temporary tool. Since we only have limited options of what we can do in therapy (see my post on my surgical restrictions) they felt it was a good tool to use. They emphasized that we wouldn't be using it all the time, so as not to limit the return of function. It does strengthen my hip as well as get me more time standing upright, both of which are important.

I have been in favor of using a brace this whole time because it gives me another degree of freedom and mobility. When walking in the parallel bars without the brace I have to have someone manually move my left leg and hold the knee so it doesn't buckle (landing me on the floor). Since I've started working with the brace, I've needed a walker to help me with balance, but other than that I need no assistance. The brace isn't fit for my leg (since it is the center's, not mine) but it works close enough. I've been able to walk 3 or 4 times around the gym area (not sure how far that actually is, but its tiring enough for now). I can feel my body getting more used to being upright. Being able to get up and go places, that's worth more than words can convey.

It's not unlike after the accident, when both my arms were broken; I could hardly move, had to be pushed around everywhere, lifted into bed. The day when I was able and allowed to push my own wheelchair was a day when the world opened up again. It was a rush of pure joy. I've seen that feeling in the eyes of fellow patients; many were stuck in power-chairs for the longest time. When that little bit of control is yours again, your whole world shifts.

My next goal is to be able to walk well enough so that I am able to walk into the office of my original surgeon. A great doctor, he did fix me after my vertebrae were shattered. Where I take issue with him was his view on my progress after 1 month. Since I had not gotten movement back yet, he told me that I would be ambulatory in a wheelchair, but statistically speaking I would never walk again. Since I'm already walking, I should ask what my chances of doing cartwheels are. Give me something to do the next I see him.

Saturday, May 22, 2010

A turtle dance

Wednesday, May 19, 2010

Not swimming but at least a little damp

This post will be fairly short because I am tired.
Today I got back in therapy pool! It was the first scheduled pool time which I have been feeling well enough to attend and it was worth the wait. I've missed being in the water, the freedom the water gives me. I flapped my fins and paddled my way around a little. Since I only have one time a week instead of the three I had on inpatient, I had no time to waste on swimming around (though I would have dearly loved to do so. Soon, soon) I spent the time working on walking, weight shifting, and balance, all critical skills I will need for walking on land later on.
This left me nice and loosened up... for 2 and 1/2 hours more of PT. So needless to say this day has left me tired.

Friday, May 14, 2010

I'm Missing Something

60 years to be precise. I have gone from expecting my 21st birthday to suddenly being 80. And being old sucks.

To anyone reading this over a certain age, most of this won't be surprising. I wake every morning feeling like I got hit by a truck all over again. My back aches, creaks, and screams, my legs complain as if I'd just run a marathon, etc. I want to be out there conquering the world. Hah!(At least for the moment) To judge from some other people's experiences, this is the condition that I might wake up in for the rest of my life. A daunting thought, one that has scared me more than once.

I know the particulars will change, and there will be days that are better and worse than others. And I am getting stronger; I have come far enough and am modest enough to admit my own accomplishments (harder than it would sound some days) but I still don't know how to reconcile that with the future. Before anyone dares post it I will say it: "Just take one day at a time." A phrase that at the same time says multitudes and precisely nothing. I've learned that this is the only way it is possible; doesn't make it suck any less.

No matter the gains, I'm missing those 60 years I've had stolen. I wanted the chance to be completely irresponsible for at least a little longer, to know that I can abuse my body and know it can handle anything I throw at it. I want to be able to sleep 2, wake up hung over, eat a bowl of cereal, and go to sleep for the rest of the day (to be fair I've already done this, but it's one of the extreme examples that you end up missing no matter how awful it was at the time). I've known precisely what it feels like to be bulletproof; at some level I've always known better but try telling that to a 20 year old, especially yourself (you'll ignore yourself). I wished I had started this blog before anything had happened, to look at the thoughts of a person who no longer exists. Not to say I don't have a new body to try out, but there are no refunds.

Life continues I guess. And maybe its my whining that shows that part of me is still intact. With everything that's happened, 5 months has been a lifetime. Turning 22 seems forever in the distance, and 30 a distant dream. I will grow old (knock on wood), it'll just not be anything close to what I imagined.

Wednesday, May 12, 2010

A Story of Hope: Pat Rummerfield


Pat Rummerfield's story is one of the more well known. I actually got a chance to meet him in my time at Kennedy Krieger.

http://rummerfield.homestead.com/

He was injured in an alcohol related car accident in 1974. With 4 crushed cervical vertebrae, he was given very little encouragement (on the contrary, he was more told to get comfortable and pass away). He is one of the only quadriplegics who is now has complete function. An amazing person to meet, he was very interested in my story and where I had come from. He took a lot of time relating to the physical therapy I was going through.

I'm not saying that I will be walking like he does, but it is simply amazing to remember what amazing things you can accomplish with sheer force of will.

Monday, May 10, 2010

Miracles and Bits of Wisdom

I have been so lucky in what I have gotten back. Starting from complete motor paralysis below the waste, the fact I got a whole right leg to start with is something amazing in itself. Most recently I have gotten some left hip-flexors, the left hamstring, and (drum roll please) a left foot! I just found out earlier today that I can move my left foot a few millimeters up and down. It's the start to hopefully great things in the left leg.


And Now, A Bit of Wisdom From My Mother:
When referring to my current state of F.O.S., my mother had this to say, "Well, it'll all work it's way out in the end. Either that or you'll explode!"

Sunday, May 9, 2010

Toes

I hope at some point all my readers have seen the movie Avatar. If not, then I'm sorry but this post includes lots of spoilers.

Now the movie is great in a lot of respects: the graphics are amazing, the colors vibrant, the story engaging, the acting well done. I have to say that being in a wheelchair has given me special attachment to this movie to say the least. It's not hard to see why, with a wheelchair bound man suddenly in a body of such power and grace.

I've now heard several people comment on how they made Sam Worthington's knees look like he had been in a wheelchair for some time: pale, knobbly, with obvious atrophy. My hat's off to you makeup and special effects. But the most realistic was how used to it he seemed, how resigned to the chair he lived in.

So you can understand how his first glace at his new avatar feet would be one of longing; how digging his toes into dirt would be something a feeling better than an orgasm. Now that I have one leg back and can do that with my right set of toes, I admit I have done the same thing. I obviously can't do the sprint that he did, but I got out of my chair and dug my toes into the grass, savoring the feeling. Every nerve in my foot was feeling the earth and the plants beneath my feet. I felt alive and connected, capable of great things. To think that this simple action was impossible not long ago. Grass has never been so green and my toes have never enjoyed themselves so much.

Saturday, May 8, 2010

F.O.S.

Sorry that I've been inconsistent with posting the last few days. Things have not been the best on the homefront. I sadly have been suffering from F.O.S. (full of shit)

Thanks to the wonderful* care I received at Johns Hopkins, I'm now backed up to my eyeballs. It's gotten to the point that the shear volume is putting pressure on my lower back and my side. This not only screws with my normal workings, but makes it difficult to move.

While I was at John's Hopkins they didn't do anything with my bowels for over a week. That, on top of the fact that I was flat on my back for all that time, has made everything go haywire. I have done everything in my power to get my body back onto it's normal rhythm again but to no avail. Every time it seems like I'm in the clear and I've regained that part of my dignity back, they x-ray my abdomen, say that I'm F.O.S. and tell me to flush the system again. Throwing off everything. Again.

It's not that I really mind what has to be done; hell, my pride and dignity were left my the wayside long ago. It's the madness of it all. This injury has gone in cycles, alternating between treatment, recovery, and feeling like everything is doable again. Then it starts all over.

The name F.O.S. was given my my roommate, who at the time was dealing with his own issues with F.O.S. He even brought out the film of his x-ray, showing everyone that walked in the room. At the time I wondered, "why he would show off the most intimate details of his insides?" It took me a long time to realize that these details are not private, no matter how hard you try to keep them so. Everyone who looks at you on a day where something is off sees that you are struggling with something. Most people are tactful enough to not say anything but they can see how you're faring, whether you tell them or not.

Best not to let them worry. Issues of these kinds unfortunately come with the territory of a spinal chord injury, so they are not unexpected (one reason i'm putting this on my blog). If people wonder why you are suddenly wondering why you're cranky and a little off, you can tell them, "no, I'm fine. I'm just full of shit."


*this is the only thing I can complain about the care at John's Hopkins; otherwise they were actually wonderful

Wednesday, May 5, 2010

A Story of Hope: Howard Rheingold


Another interesting story, that of Howard Rheingold. He fought through cancer and is still fighting. He is a writer and documented his experience through a blog. It is amazing to read through some of his experiences and how he has become the person he is. His blog is called Howard's Butt (guess why!):



http://howardsbutt.tumblr.com/

Here is one of my favorite passages so far:

I do see clearly now how the person I’ve become was largely a creation of my own choices; I could have reacted in other ways, become other people, but I did what I did and I am who I am. That’s not the end of it. Apparently I’ve been called to be someone else. Again.

Check out his story. It's amazing to hear and he's a brilliant writer.

Monday, May 3, 2010

Briefly about PT, then... a dream sequence

So today I started physical therapy, this time as an out patient, at Kennedy Krieger. The day started early, since we had to fight through morning rush hour to get downtown for 9 oclock PT. As for the actual first day, there is very little to report, except one. The whole day was devoted to evaluating me. Poking and prodding, forcing me to move my legs this way, then that way, now this way, measuring the angles and force the whole time. The one cool thing that did come out of all that was they found a new muscle working (sort of). Kennedy is famous for their use of electrical stimulation of leg muscles, which forces the muscles to contract; this can lead to muscle recovery and various other processes. Now my left leg, for whatever reason, has never responded to electrical stimulation. For the first time, my therapist were able to feel faint contractions on my hamstrings (the muscle behind the leg that bends the knee). It's exciting and hints at possibilities down the line. I'm really excited about it, but as always its a wait and see game.

The rest of the day I spent with my brother and sister-in-law, going various places around town since it was their last day before they went back. This tired me out and left me very sore. So the moment I got back I went to lie down, falling asleep. I had one of the most vivid dream sequences I've ever had, weird in the fact that I rarely dream at all.

(This was typed up immediately after I woke up, so is as detailed and as accurate as can be when one just wakes up from a dream)

It started off with a visit to a premier event; like the Oscars it had an entire staff of people who were responsible for its upkeep: guards, cooks, janitors, etc. Having an in with a security worker, I snuck in through the bathroom, which led to the rest of the festivities. In the logic of dreams, I stopped to pee (me being standing I chose a urinal). In the next stall someone kept yelling loudly at me, yelling on how I was being inconsiderate and an awful person for sneaking into said event. I can’t remember all of his rant, but it was overheard by the janitor, who turns out was not a janitor at all. He was in fact a mob boss, supervising the union of people who were running the event. So annoyed by the man’s yelling, he slugged him and had him dragged off by goons. In the way of mob bosses, being annoyed at the man endeared him to me.

It must have been my real secret mission to befriend the mob boss in order to lead him away to beat him up (not because of a rival mob, but of some misdeed he must have carried out on a group of friends of mine). Using my friendship with the mob-boss, I lured him outside by himself (the boss waving off his guards away, because I was a friend). My real group of friends then met me outside to beat up the mob boss. Unbenounced to the rest of us, one of my cohorts had brought a gun, which he promptly used to off the mob boss.

Now here is where I must have slipped deeper into sleep, because things start to get stranger. We tried to run from our crime, but we ended up shooting both an undercover policeman who was staking out the scene in a nearby hotel and the window of a bar full of rival gang members. Miraculously, we all escaped undetected, and as the events of the other characters were explained in a CSI-like detail, it turns out everyone in the small town had either been excited involved in preparing for the town's main event or was preparing for mob-violence. The police chalked the entire thing up to mob-warfare and we were about to go clean.

It was then that the other sole witness revealed herself. A lonely old grandma, escaped from the ravages of a nursing home and her family who forced pills down her throat (possibly with good reason if you stick around for the rest of the dream). She was living out her childhood memories of being a lonely girl in an orphanage; she and her ragtag group of friends used to go to the top of the neighboring hotel (where the undercover officers had been hiding out) and laugh as they would imitate the letters of the hotel, which were spelled in giant letters on the roof. So here is loony old grandma, witnessing a murder dressed as a giant T (explaining WHY she was previously unnoticed) on the roof of the neighboring building.

Whether we were caught or not, implicated by crazy grandma’s story, was never found out. Here is where there is an abrupt SHIFT in the dream, now focusing on the same town, now ruled by tyrannical sheriff who likes everything gray: all the shops, all the people, all the children in the orphanages (sadly of which there were many). There were tons of street urchins running around uncontrolled as well; a token effort was made to round them up and put them in nursing homes (which he did with matrix like moves, running sideways on walls) but as long as they wore grey they were tolerated.

If possible, the whole thing became MORE dreamlike. There is an entire sequence that is begging to blur in my memory already, about a group of people in bright colors (mostly blues) who in Charlie Chaplin-like antics overcame the sheriff. I don’t remember how they got him there but eventually they tricked the sheriff (who tried to go undercover to catch them) into going along with the crimes, which all involved adding colors to the nearby shops. They were supposed to hide in a nearby pool at the end of the heist (when the sheriff planned to catch them). Needless to say he did not. Instead, they framed him for all the “crimes” and added insult to injury by switching his towel with a confederate flag. The town of my dream seems to be in new-England, so this was considered a great insult.

The rest of the dream is a blur of colors, chases, and various antics, already fading from memory. I know when it was near completion I was in some colorful chase sequence on a highway (with whom, I have NO idea).

It was that point when I got a phone call from a friend, waking me. I soon went back to sleep, this time dreamless, but I was left with the image of the dream in my head, which NEVER HAPPENS! So before I went back to sleep, I typed up this dream sequence.