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

Wednesday, December 29, 2010

A Year

One year ago today I was in a car accident. I broke two vertebrae, both arms, bashed up my kidneys and a bunch of other internal organs. I had stayed up the previous video games and then I slept the car ride down the coast. And then I was unconscious for the rest of the day. I can hardly remember that day and yet it is a day I will never be able to forget.

I debated for so long on what I should write today, on this anniversary of sorts. How do I put down into words a years worth of changes? I've tried in my previous posts and haven't managed to cover it.. Read those if you want to see my transformation, but I can't spend today dwelling on it.

I was going to show what happened to me through my scars, but then I remembered I had already done that. (back, arm, etc.) The scars are a little more faded but they are still there for everyone to see. Everyone I meet see those scars, the symbols for what I have gone through. But I am not the only one going through this; everyone who has supported me through this bears their own scars, some more some less, which unlike mine cannot be seen.

Instead I'm going to turn this outward. I want to use this space to thank those that got me this far. You can't go through something like this alone. These people have brought me, kicking and screaming sometimes, to where I am today. Thank you.

My parents, for they have given me strength, watched my progress from the start, held me while I cried, listened to my rants, drove cross country (twice), and done so so so much more. My various doctors, nurses, aids, etc., for without all of them I wouldn't be alive. My brothers and my sister, who reminded me that no matter what happens I will always be that little kid with scraped up knees who couldn't spell. My extended family, who sent me love, prayers, presents, clothes, and gave me a support network when I needed one. The three cousins who I lived with in particular, who reminded me that there are few joys in life better than nerf guns, video games and legos. My different therapists: Maria, Alicia, Meredith, Stephanie, Beth, Varsha, Marjorie, Carol, Sue, Lynn Peter, Mindy, Joan … the list goes on and on (I”m sorry for those I forgot because there are a zillion of you); you have given me the drive to push myself when I had none. Moria, who was my own private drill sergeant, life coach, swim coach, sounding board, friend, and so much more. My friends who I met in rehab, who were already fighting when I was just learning how; keep it up, for the day when one of us gives up hope all of us loose. My friends out in Colorado, Washington, etc., you guys called, texted, facebooked, emailed, webcamed, reminding me when all my thoughts were turned into dark places that I was not alone. Kayla, who has been there through the darkest dark and the brightest light, reminding me that I was loved and that being too sane will drive you crazy sometimes. Those who came to my sisters fundraisers and donated even at a time when everyone is hurting. Those across different states and different continents who have sent me prayers, leaving me staggered by the size of a chain of prayers that stretches the globe. Those I cannot mention because it is too painful; you know who you are and thank you.



This list doesn't even begin to do justice to all the people who have gotten me through this past year. It is humbling to think of all the people and more coming together for me. I couldn't have possibly imagined all of this before this last year. I was never really alone but now it is so much more visible. I am so lucky to have this amazing support network of people who care.

Friday, December 17, 2010

Story of Hope: Rodderick Ball



I knew Rod for a while when were both in Kennedy Krieger inpatient together. He was a quiet kid but determined. Rod had schwannomatosis, which caused benign tumors to form in the nerves in his spine, causing a variety of nerve problems throughout his body. He had been through surgery and when I met him had both legs in casts. You can read the full story at the link below, but to make a long story short he went from not walking to leaving the hospital with only a pair of crutches. He has a long road ahead of him, as we all do, but he's come so very far already.

http://helpkids.kennedykrieger.org/rog/icsci2010.html


I want to take this time to really tell everyone what an amazing place Kennedy Krieger really is. Rod's experience isn't unique. They've taken people that other facilities may have given up on or given no hope and turned them into people they never dreamed they could be again. They have a dedicated staff who care about everyone who comes through; no matter what you are surrounded by people who want you to succeed. The article mentions Beth Farrell, an amazing therapist who I've seen firsthand. She works alongside a team of other amazing therapist: Meredith, Stephanie, Marjorie, Varsha, and scores of others (these are simply the ones I worked with on a daily basis). They work in tandem with doctors, nurses, nurses aids, recreational therapists, and a core of volunteers. I'm sorry if I leave anyone out. It's been a long time and I really wish I could include everyone of you.

One of things that I've always noticed is that everyone who worked with us, day or night, wanted to be there. Everyone I met was excited about the prospect of assisting people on their way to recovery. Being surrounded by support like that is an amazing feeling. With that combined strength you can move mountains.

Tuesday, December 7, 2010

What It's Like To Lose Your Legs and Get Them Back Again

That first month before I moved I thought I had lost my legs. I lost them in a way it is hard to convey. How much do you love your left knee? Or your hand? Or the muscles that run that run over your hips? It's not something you normally think of. For all intents and purposes my legs were dead. When you are faced with the blunt truth you realize that is every bit as real a death as that of your closest friend, your dearest family member, your lover; yet closer than all of these.

So faced with this blunt reality I went through the stages of grief for what I had lost:

1.Denial

For about the first week and a half I didn't think about it. After the drug fog finally parted, I hit the ground running. I was focused, I wanted to walk again. There was nothing that was going to stop me. So I worked hard, focused. Did physical therapy, worked hard. I just didn't think about it.

2.Depression

Then one evening I was alone. My roommate was gone, all the nurses and aids gone. I was alone for the first time in a long time. And I began to think about it and it all came crashing down on my head at once. And it hit hard: I had lost my legs.

I would never again walk, run around, dance, play sports... I remembered after a wrestling meet. I had won a match, against someone who outweighed me by 13 lbs. My blood was pumping, adrenaline coursing through me. I was still wearing my wrestling shoes, the kind that are just thick enough to protect your feet but allow you to feel every groove on the floor. I ran down the stairs to the locker room, passing it. I sprinted down the hall at endorphin induced speed. I could have run miles, and considered it briefly. I was invincible.

Gone.

That night I cried. I finally admitted to myself what I had lost.

3.Bargaining

Now I've always been a good catholic boy, sorta. Went to church on Sundays, when I remembered that they gave out free meals for college students after the 5 o'clock mass. Through all of this I never doubted that God was all around me, in everything I saw. He was there, wrapped around me like a warm blanket, protecting me.

It's not that I stopped believing in God, it was just that my warm blanket of protection had been ripped away. I didn't beg for my legs, I didn't really ask for anything. I merely asked “why?” Why had I been so unprepared for life, why was I so innocent, why did I have to be flung into a truck at high speed to go down whatever path I was supposed to go, why did I have to be put through all this? But I just asked the simple word.

Not much of a bargaining strategy I know but I was still in shock. I told my friends and family “I still believe in God, we just have some issues to work out.” Still true I suppose.

4.Anger

I wasn't angry often but when I was it seized me. It wasn't fair and I wasn't going to put up with all this shit. I don't care what happened to my body.

I was mad there was nothing heavy that I could throw at the windows, breaking the glass. I wanted to break something. I ended up throwing my stuffed animals a lot. I got good at knocking the panels out from the ceiling; they had to put them back three times.

My sister offered to get me a Nerf dart gun so I could get out some of my unused aggression. This was a good idea. Eventually I ended up shooting a few real guns when my uncle took me to a shooting range. It helped to tilt my gun to the side in what my uncle called the “gangsta shot,” firing off all the bullets in the clip. I actually wasn't a bad shot either.

I wasn't as mad after that but I still do get frustrated by everything. I'm mellow enough that most of the time you usually don't have to worry; but just hope that when I am angry, I'm not holding a gun.

5.Acceptance

I'm still working on that part. I have accepted that this is the body I have to work with. I've accepted that I can still live on, even after this loss. I've accepted that I have to work hard to get beyond where I am. This part is hard and I don't know if I'll ever really accept the loss, even if it ends up being a temporary one. They say time heals all wounds. I really hope so.

------------------

After my toe wiggled, people kept assuring me that I would one day walk again, that I would have my legs back. I didn't really believe them, in my heart of hearts. For I had already gone through my mourning. They were already dead so what was the point in hoping for what you couldn't have. I always nodded politely but was ruled by overwhelming doubts.

It's only in the past few weeks that I have come to realize a truth that has changed my life: my legs weren't dead, merely sleeping. I had to wait patiently while they got enough rest. It was as if each muscle group were an individual that demanded attention in different ways.

The hip flexors were the first to come awake. The closest to the line of movement, they were ready to jump to attention. Yet they were still half-awake and even though they had great aspirations they only were able to twitch the leg back and forth.

The hamstrings, the muscle running behind the knee that runs the length of your leg, tried to spring to attention as well, though they were still mostly asleep. Eyes still closed, they muttered “yes, yes... that's nice.”

The quads (thighs) twitched awake for half a minute, muttered, “5 more minutes,” then proceed to go back to sleep.

The ankle squeaked “I'm here too,” but nobody heard it because it was so small.

They groaned and moaned, just as I do when I wake up. They hurt, they were weak, and just wanted to go back to bed. Slowly they've awoken. I can move my leg around in circles, bend and extend the knee and have the barest hint of an ankle movement. Most of the movements are so weak they can only be seen when my leg is underwater. The movements are scattered widely, a bunch of spare parts. But they're beginning to stop being a spare parts and start becoming a leg again.

That's my journey so far. It's obviously not finished, not by a long shot. And for once I agree with the encouragement. I will walk again. It's within sight.

Wednesday, November 24, 2010

Getting home and my new kittens

So I'm now here in North Carolina. I realized I left the blog on a cliffhanger which is just irresponsible. So here is what my life looks like now that I'm here.

I'm in physical therapy in our local medical complex. My therapist Mindy is great, challenging me and pushing me harder. She has me working not only the bulk muscles required to move my limbs but on the fine control muscles in the limbs I already have.

So my big news: I'm moving my left on land! I had found underwater that I was able to bend and extend my leg from the knee, as well as the hipflexers I already had. Yesterday for the first time I was able to drag my leg across the carpet using only the muscles surrounding my knee. This is extremely promising (although it's obviously only the first step in a very long road).

I go swimming around the YMCA three times a week, working once a week with a personal trainer, a nurse who specializes in aqua-therapy. She pushes me in the water to do more than I can do any place else.

And I got two kittens. They help with my mental state of mind, very important considering my body is going through so much. They are adorable. The orange striped one is Hobbes and the Calico is named Terra. I will post pictures of them once I get to a wifi spot. My parents only have dial-up so it takes too long to post them on here. Those of you who are friends on facebook keep an eye out for pictures.

Friday, November 5, 2010

Roadtrip Day 3-4: A long, frequently interupted nap

We've made it all the way to Virginia. We've come a long way, thanks to the persistence of my parents. They've driven like madmen to get us this far this quickly while I slept comfortably in the front seat.

We made it to St. Louis on Wednesday, passing through on our way east. We saw the St. Louis arch, my Mom thankfully waking me up so I could see it (I missed it on the way out). It was pretty cool and I can add it to the list of national monuments that I've seen.



Stopping in Kentucky, we kept pushing forward the next day. We made it through Kentucky and West Virginia. We stopped in Huntington, WV, my parents home for many years. My Dad went to school here as well as two of my siblings being born here. Needless to say the place carried some memories for my parents. I thought the place was kind of depressing but that may have just been the gloomy weather. What was certain was the city was surrounded by a ton of trailers, all badly in need of paint job, showing that they had most likely been there for many years. I heard a WV joke: How is a Texas Tornado like a West Virginia Divorce? No matter what, someone's going to lose a trailer.



We're now in Virginia and on our last day of traveling. I'm looking forward to today since I'll be driving the last hour and a half. My parents both have a car at the Newport News airport so I'll be driving my van home. This has been a long trip but it is so close to done.

Tuesday, November 2, 2010

Roadtrip Day 2: We're not in Colorado anymore Toto

We made it all the way through Kansas today and it was a very interesting experience to say the least. The state is flat, the culture is weird, and the people are wide.

The highways have high speed limits with limited traffic so we made good time. We made it through the entire state in one day and are now resting this side of Missouri. We won't be able to make distances like that the rest of the trip but it was certainly good to have a good start.

You can definitely see the difference between Kansas and the rest of the country. Every rest stop had a giant convenience store dedicated to hunter gear. It was like being back in Wisconsin without all the cheese. The stares of people are more obvious; although they try and be subtle about it, they stare a little longer at me and the wheelchair before turning away. I guess they don't see many kids in wheelchairs these days.

Something I thought was funny: when I asked for a sprite with lunch, they asked if Mountain Dew was okay. Apparently all they had Mountain Dew, Pepsi, Diet Pepsi, and Dr. Pepper. They know they're costumers well.

The people are wider than they are in Colorado. I guess this is to be expected since Colorado is so health conscious but it still is shocking to see 300 pound people everywhere. One man at lunch had a full person worth hanging off each side of his chair. A lady at dinner had to walk with a walker because she was too heavy to walk on her own. Unaware of the irony, she very loudly ordered the mashed potatoes with extra gravy, giving instructions that they were to be smothered in it.

There are many other things that are hard to put into words but Kansas is just... different.

Monday, November 1, 2010

Roadtrip Day 1: Minds up in the clouds

Day one of traveling has us tired. We're all exhausted and making very interesting choices:

Today while looking through the food bag, I can only assume that Mom was thinking about the gloves I wear. She very clearly offered me a "Velcro sandwich". Needless to say it didn't sound so enticing.

When about to hit the highway, passed the signs showing the different routes. Moving toward the eastbound highway, I asked my Dad "Don't we want the westbound highway?" He answered kindly, "No son, we're headed toward the EAST coast."

When finally hitting the motel for the night, my Dad reached into his wallet to hand us the key. Instead of the key he handed us a pass to the Denver Museum of Natural History and Science; it took me three tries in the magnetic door lock to realize that this wasn't the key after all.



We're all tired and brain dead. We're at the edge of Kansas with the rest of the country in front of us. One day down...


Saturday, October 30, 2010

Another Set of Adventures

So if anyone has been watching my facebook (or more regularly my sister's), you will know that I'm going to moving to North Carolina again. I've dropped my classes for now and am heading back home to focus in on my physical program. There are multiple reasons for this: the fact that I'm a huge slacker at heart, I had a sudden pain in back which put a hold on my pt for 2 weeks, all the pressure has left me trying to do too much. Since the beginning of the school year I have been backsliding, doing less of my home exercise program each day.

I had been starting to get depressed and unmotivated. Physical pains were constant and framed my situation in a bad light. Classes were getting harder and harder and I found it harder and harder to care enough to study. And then I got a sudden and intense pain behind my ribs. I was already starting down an unproductive path when I was suddenly flung down into a pit of depression and listlessness. Things were falling apart and I didn't know how to piece them back together again.

My mother came back out again when I filled her in on how I was doing. She had been trying to give me space and freedom, so she tried to give me distance. But when she heard that I was stuck in a pit she came out right away. And it became more and more clear that I had slid back a long way and there was no way I was going to be able to do this without help. When I got some more failing grades from my classes that the system I was using wasn't working.

So know I'm heading back. People keep reminding me to not think of this as a failure, that I'm going back to strengthen myself up physically and then can do anything. While this is all true it is sometimes hard to believe the truth. And I still disagree, I did fail here. Fortunately I have a support network behind me or I would have failed a long time ago. I've taken more than a few hits to my pride these last few months, including having my diapers changed. I have gotten used to freedom and it will be really hard to give it all up and go back home. Now my pride will just have to suffer as I lean on others for help for a while.

Tuesday, October 19, 2010

Who says you need legs to dance?

Tuesday, October 5, 2010

Here We Go Again



So it starts again. Monday morning I awoke to find that I couldn't roll over. My back, usually stiff and achy, was on fire. My right side felt like it was being stabbed, then kicked over and over. I went to the doctor to make sure there wasn't something immediately wrong; they couldn't find anything so switched me to a different set of painkillers.

The best guess anyone has is that I either pulled a muscle over my rib or my bad posture in my wheelchair caused the muscle to temporarily tighten up. I don't like either but a bit of rest seems to have made the rib slightly better (I at least made it to classes today).

This is simply another chapter in the never ending depressing novel that has become my life. I wished I could get out of the non-fiction section; being in the sci-fi section is so much more exciting. Hell I'd even settle for being in the romance section (at least I'd have tons of readers and I'd have a sexy embossed picture with my shirt mysteriously absent).

Not the worst that's happened and certainly not the last; not by a long shot. So plodding on through this new swamp. I like pavement better because it's easier to wheel.

Wednesday, September 22, 2010

The most normal I felt in a while

First, I've gotten a lot of response from friends and family basically on how my blog has been moping. And it's true. To quote a friend:

You're right, you're not the same person you were and memory hurts. But we'll make new memories together.

Thank you. And I know that life goes on. I miss him though, the old me. He was a bit of an idiot, lazy as sin, and just plain weird some times though. But we had good times together. It's like breaking up with someone you really cared about: you know that life can't return to the way things were but you miss them so much it hurts. So if I mope, I'm sorry. This too will pass away.

Second, I had a really normal morning, though this is not a good thing in this case. Last night I cracked the window but closed the curtain, making it dark but chilly. I snuggled under 3 layers of covers, making myself a small cocoon of warmth. I woke up feeling good, my back a little achy but not actively painful. And I didn't want to move.
I pushed my snooze button 4 or 5 times, only finally pulling myself out of bed to make it to my Physics class (to which I was 5 min late too anyway). I quickly copied down the work on the board, catching up with what little time I had, thinking back to my nice warm bed.
If this isn't a normal moment, I don't know what is: sleeping in until the last possible moment because of my nice and toasty bed, making it to class just in time to get the material, and spending my remaining free time thinking about how I really just want to go back to bed. Yep, normal morning.

Tuesday, September 21, 2010

Wheelchair Hands

It's official, I'm a wheelchair user.
My hands bear the marks of traveling far distances. Even though I wear gloves whenever I wheel around I still have distinctive marks:
I have callous built up from between my thumbs and forefingers, extending all the way to the heel of my hand.
I have blisters from where the tires run across my palm.
My thumbs look worn down, as if chiseled away by sandpaper (in reality this is where my thumb rubs across my tires when I'm not paying attention.

It is said you can tell a lot about a person's life from their hands. My story is just a little more obvious than others.

Monday, September 20, 2010

Dealing with my greatest and weakest moments

There is probably no more terrible instance of enlightenment than the one in which you discover your father is a man — with human flesh.
Dune Frank Herbert

For the last few weeks I haven't posted anything. My life has been too complicated, too involved. I didn't know how to put these adventures into words. But in these past few weeks I have felt the magnitude of my strength and the depth of my weakness.

So for all of you who follow this blog know that I finally left Maryland. I traveled down with my mother to North Carolina, where my parents house is. Right on the water of an inland sound, the view is breathtaking. A neighbor of my parents built a gigantic ramp by the back of the house so that I could go in and out. It is the Michaelangelo of ramps, blending in seamlessly with the back porch that runs the length of the house. I knew that one reason that we went to North Carolina was for me to see and use that ramp, which I did.

Now going down to North Carolina was a break from the real world. I had no responsibilities except to exercise and stay fit. And that I did. I felt the stronger there than I have since my second back surgery. I walked back and forth across my parents lawn, circling the house. I walked the path down to the water and back. I scoffed at the neighbors boat launch, which was suggested to me for getting into the water. Instead I decided to jump down the step ladder on my parents dock. Hard to keep a turtle out of the water. I felt good, I felt strong. It was like the adrenaline rush I got once after a wrestling match. I had beaten a guy 15 lbs over my weight on home turf, with everyone from my school watching. Afterwards I sprinted the halls, enjoying the feeling that I could do anything.







I felt strong, but the trip cross country knocked the strength out of me. We traveled almost 1200 miles, stopping every 3 hours or so to rest and stretch. My body felt as if I had been beaten, kicked around, then beaten some more. At the end of every day I collapsed into my motel bed, drained of all energy. I didn't travel all that well before; now I don't travel well at all.

But I made it here. I'm set up in my apartment with a ramp-van to get me around to classes and physical therapy. But there is something different about Fort Collins now. The romantic vision I had of this place is gone. People's lives have moved on: some lives have disintegrated, others have gotten married, and still others may be dying soon. This is not the place I left and I am not the person who left it. And though they try to act as though nothing has happened, my friends are still getting to know this new wheelchair person that's entered into their lives.

I've seen the weakest I can get as well. After a long day, exhausted, my body aches. All I want to do is lay down and never get up I know I can't. I get so week to the point I can pass out, my body finally saying "Fuck this, I've had enough. You are resting NOW." Always a control freak, it's frightening to have so much of my own body out of my control. It takes constant vigilance, a drive to always work on keeping my body fit. I admit I don't always keep up with this; my mind is tired as well. Having long ago come to the realization that if I don't keep up with my exercises and stretches my body only goes down hill. But having the knowledge and putting into practice are two different things.

So here I am, a new person in a new place with new goals. I've seen my greatest and my weakest moments; it's tantalizing that I know just how far I can go but frightening just how far I can fall. I have a feeling I'll get through but it would be nice if life didn't insist on showing my limits, reminding me just how human I am.

Wednesday, August 18, 2010

Memory

My life recently has been a small multitude of lifetimes. How long ago it seems, when I proudly strolled across campus, or more likely biking illegally through the bike dismount zone (they ticket you if you're caught). Fortunately, I found that while they had cops on either end of campus they never posted one through the section of campus between Eddie and the library. This allowed me to zoom across both sides of campus easily. Now I wheel myself around now, knowing it will be along time before I can stroll in any way through those grounds. It's not that these things aren't attainable, but the memory of my life from before flood back.

So I survived a week in NC with the folks. Tenuous at times, but what 21 year old doesn't have with his folks. More interesting was our trip cross country, 1800 miles. I'll post more on these two things later, but for right now be satisfied that the whole trip was tiring as hell. But I survived.

And now I'm back, set up in an apartment not far from my local haunts. I remember walking, biking, driving these roads. While I know I'll get into routines, patterns, and develop new haunts; but it is strange to have dreamed about a place for so long to find it again, especially when it doesn't fit neatly into memory. Lives have moved, new bonds were broken and others forged, the city refuses to stop for a returned son. It would have been far stranger if things had stopped, but I can't say that some part of me secreted away for so long half wished it had.

I've come to terms with life, God, and the nature of fate. I accepted the person I had become. I can't honestly that there aren't certain parts of me I had to let die, and I've mourned the old me. It's hard to avoid. But like any death, time eventually and you notice that you subconsciously have switched to talking about the loss as something from the past rather than the present. You've blinked and months have passed. It's like any death, the deep longing within your self lessens, though when you think you still think with intensity.

It's like walking down a path, only to realize that you and your late best friend or lover used to walk there lifetimes ago. You feel a longing for that place and time, when things were simple. 'This too will pass and change,' you tell your conscious self, knowing that it still doesn't quite believe you.

Tuesday, July 27, 2010

A Fond Memory

When at Kennedy Krieger, we were lucky enough to have Wii in a mobile unit, meaning that you could take it to any of the rooms. This was amazing, since it gave a little life to the otherwise boring evenings.

My room was one of the biggest, fitting three different full sized beds. Our room had a great atmosphere because for a while, the three beds were all filled with people over 15; this allowed the nurses and aids to give us a little more slack than we otherwise would have gotten, since we some of the oldest patients. We were allowed to stay awake until midnight, blatantly flouting the 10 o'clock lights-out.

It was possible to check out the mobile Wii for the evening, having to return it at the end of the night. One of my roommates somehow managed to check out the unit and not return it. No one came looking for it, so we kept the wii for weeks.

The favorite game of choice was Mario Kart. Having not played Mario Kart during my childhood, I was at an extreme disadvantage. I got the hang of it pretty quickly, mostly due to the fact that I had fewer hours of things to do during the day than the those who still had to attend classes. Eventually the roommate who had checked out the Wii left inpatient and we were left with machine. Because he had left they failed to track down the wii for quite some time.

Sunday, July 25, 2010

Leaving Soon

I have put off writing this post for a long time. I have known that I'd be leaving at the end of July but it doesn't seem quite real, even now. But I guess since everyone is asking I should be more specific.

My therapy at Kennedy Krieger outpatient is dwindling down. They've done all they could in the restraints that they had(i.e. back/arm surgeries); the restrictions on my arm are finally been lifted on Thursday, which will allow me to use a walker and the loftstrands(hand-crutches). Thursday also marks the day that I get the PIC-line IV out of my arm, which will finally leg me take a shower without wrapping up my arm, and most importantly, will allow this turtle to swim in a pool. We leave this Friday. Talk about a day late and a dollar short.

These past 7 months have been a never-ending stream of surgeries and after-surgery restrictions. Always fighting to claw my way up to where I was; but to tell you the truth I don't fully remember what it was to just get out of bed every morning and live my life without thought. I don't remember how to do a lot of things. The person that I was is gone, at least in part, changed after so many lifetimes of hard work, pain, blood, sweat, and tears. So much I care for is still in Colorado but it makes me nervous to return. It's like returning to a place you loved as a child; you want desperately to see it again but consciously know you'll be looking at things with different eyes.

This friday we'll pack up the last of our stuff and drive to North Carolina. I haven't been to my parents house in over a year at this point so it'll be interesting to see. Especially now that I'm stuck on the first floor. They did build a giant ramp so at least I'll be able to get in and out. Of course we'll be there during a giant heat wave, so I may be hiding inside more often than not.


After that we take a week-long road trip out to Colorado. I'm dreading that with more fervor since I don't do well in long car rides as is. Pains in my right leg, combine with back pain and the general stiffness that comes from not moving make it a hassle. I have a couple of tricks to combat this: stretching, icyhot, electrical stimulation, medication. Nothing ever works completely so I'm constantly switching between these. We'll see how it goes I guess.

Then I'll be in Fort Collins again. Only a semester late, I guess that's better than could be expected. I'll take it.

Saturday, July 24, 2010

Nutrition

Even though my stats have all been going up, my parents are still worried that I am not getting enough nutrients. I have been drink a drink called "Boost" which is a dietary supplement drink. Tastes metallic but is otherwise alright. I guess in the long run it's a good thing, though I've had to force myself to drink them all before we leave (everything that is not either mailed/stored/eaten we will have to carry with us.

It reminds me of this:

Wednesday, July 21, 2010

A Story of Hope: Colin Heffern

This is not someone famous but simply a guy that fate has let me meet. This fall I will be moving out to Colorado and living in one of the University apartments with my brother. The previous tenant was a guy by the the name of Colin. A quadriplegic himself, he was injured on campus and set up with pretty nice digs.



Colin is a senior at Colorado State University studying landscape architecture. In high school, he was an avid athlete partaking in golf, tennis, swimming, and soccer and excelling in all. During his freshman year at CSU, he was injured doing a belly flop into a pile of leaves and has been paralyzed below the shoulders ever since. In the spring of 2008, he had the opportunity to study abroad at the University of New South Wales in Sydney, Australia.

(That blurb was from www.swimwithmike.org, a fundraiser that uses a swim event to raise millions for athletes who have suffered serious injury or illness)

Since he is a quadriplegic, the apartment is already adapted for wheelchair use, with a roll in shower, automatic front door, and other stuff (I'm not actually sure what else, I haven't been there in person yet). Colin has made the best of his situation, graduating this past spring in landscape design. He is going to attend grad school in California in the fall.

It is one thing to hear about someone overcoming adversity, but it is another to meet (or at least talk on the phone) to someone in a very similar situation who went on full steam with his college career and beyond. Maybe this is doable after all.

Friday, July 16, 2010

This Wheelchair Buisness is a Pain in the Ass

Something most people may not think about: if you spend your day sitting your behind gets sore a lot.



It's a fact that the more time the skin spends in contact with a solid surface the more likely it is to get bruised, sore, and develop sores. Now I want to say specifically that I do NOT have any pressure sores. (Warning the following link is very graphic and be prepared if you click on it). Google pressure sores some time. It is GROSS! I want to avoid them at all costs.

Since my left leg has still not moved significantly the muscles surrounding my gluts have atrophied, leaving much of the bone and joints exposed. This creates even more points of pressure on exposed skin. The only way to really combat this awful process is to soften my various seats with various types of foam, cushions, etc. And of course the best way is to lie on my stomach, eliminating the problem altogether. So I spend a lot of time sprawled out.

I'm posting this for no other reason other than it's a pain. And also, don't be offended if I don't sit up when you come to visit. Nothing personal.

Thursday, July 15, 2010

On up days, and down days

As to be expected with all of this, there are Up Days and Down Days.

Now these come and go in a cyclic pattern, their cycling more intense since my recent round of surgeries. In the surgery on my arm, they got rid of a lot of heterotopic ossification (fancy word for extra bone formation in the arm), apparently which caused a fair amount of blood loss. They didn't give me any blood during or after surgery, so I was desperately anemic, short of the red blood cells my body needs. Though this isn't an excuse to why I haven't blogged much this past month, the low levels of energy I've had sure haven't helped.(I will be trying to post a couple times a week from now on) My Hemoglobin count, the actual molecule in red blood cells that allows transport of oxygen and CO2, was dangerously low. The body eventually make more hemoglobin but it takes time, more time if the body is also recovering in other ways such as building skin, muscle, and bone.

At first while out of the hospital there were some really Down Days. I didn't want to get out of bed because it hurt so much to move. When I did move I didn't generally do a whole lot, since I didn't have much energy. There were a slew of Good Days through in there, but at least at first the days were very bad.

Once I started PT again, things began to visibly improve. Because of the surgery to my arm, I had a weight restriction of 5 pound on that arm. HIGHLY annoying, but it turned out to do major good for me in the end. Because they were limited in the amount of work they could do, they had to adapt their strategies, now focusing on the lower back, trunk, and abs. This was enormously helpful, since this strengthened my bag and core, as well as getting rid of most of my back pain. This surgery, a pain in many respect, may have been a gift after all.

So now I am continuing to improve, empowered with a whole myriad of stretches, exercises, and movements that keep me from going stiff and limiting my pain. There are still up days and bad days, but at least the down days are getting better. I've found a few strategies that help, including medication, more stretching, electrical stimulation, icyhot, massage, etc. It's not perfect but I can now make it though the bad days when they do strike.

All in all, things are looking back up for a change. I'm feeling little by little like my old self again.

Wednesday, July 7, 2010

Thankful for Today

I'm sorry that I haven't posted in a while. I have had issues with recovering from surgery, as well technical problems with this website. I have two posts that never showed up on the website. I will repost them presently.

This is a reflection of my relationship with God and my own private religious revelation. I did not hear the angels chorusing from on high or anything like that, but I did find my own piece of a higher power.

As some of you may know I have had an interesting relationship with God from the very beginning. Though faith was not something that took the forefront of my attention before the accident, I always had a firm belief that there was a God and that I had a personal connection. Even after the accident, I maintained my belief in God, though I was not happy him. Though I was never outright angry raging against God I will say that God and I had some things we needed to work out.

This was the position I held until after my second set of back surgeries. It was then that I began to have increasing issues with pain. I've had intense back pain, causing me to be limited in my movement. I've had severe leg pain, possibly from overuse, making it excruciating for me to sit up in a chair for more than 30 minutes. With everything else that had happened, the pain wore me down. I sunk into a depression, almost refusing to move. And then new waves of pain sunk in, caused no doubt from my refusal to work past the pain.

In one of these bouts of pain, I was brought to tears. The pain was too much, the final straw to break my break (so to speak). It was hear that I broke down and really prayed for the first time in nearly 6 months. I raised my tear-streaked face and asked, "I know I've had issues with you in the past and everything still isn't clear; but I need help! I'm too tired, too broken." Though the pain didn't stop, I thought it might have lessened slightly. Exhausted I fell asleep.

It was a prayer of desperation. I had used up all my energy, my drive, and I needed help. Help was not delivered from on high that day but gradually things began to improve. One key factor in this was the start of physical therapy again; it allowed me to begin to move again, to claw my way up to where I was before. In admitting that I was lost and broken, turning to a higher power, I found my drive again. I rebuilt myself from the ground up.

Though all of this was a turning point for my recovery, I didn't really associate it with any sort of higher power. That moment came earlier today. We were running late, things were all over the place, family members were frazzled. On any one of many previous days this would have been the awful start to the day. But I woke up feeling good, my joints loose and my body ready to go. When I went outside to get in the car it was a gorgeous 80 out with only a little humidity. While I waited for my mother to come to the car I had about 4 minutes to myself.

It was in that short time that I felt an intense calm come over me, a stillness. Everything stopped; the day was clear, I felt like myself, and the world was at peace. It was in that short moment that I think my prayers were answered. I soaked up that calm as if it were a physical thing. After so much time either in pain, worried, or in pain the calm was like a warm blanket covering my entire body. Appreciating what a gift this moment was I raised my head and said "Thank you for today." I didn't need to say that this moment revitalized my spirit and my drive. All the things I will be able to accomplish from this point are due to this one moment of serenity.

Alright, it's not a sign from on high in the traditional sense but it is the moment that revitalized me. And for that I am thankful. This is not to say I have resolved all my issues with God (you get stuck in a chair, you see how understanding you are!) but I am smart enough to know when I have received a gift from something bigger than myself. Though not as dramatic as Moses on the mountaintop, I can now legitimately say that I have been touched by something that is both powerful and beyond my understanding.

Monday, June 28, 2010

My back


a picture of the back, all cut up.

Talked to my therapist

I started outpatient PT again today. It was good to get back into a formal exercise program again after all the time I spent at home.

Among other things I discussed the fact that I thought the stitching looked weird, each of the stitches separate with a neat little knot. While the neatness and meticulousness of it impressed her, she thought I was wrong and the stitches must have been individual. Most were on my back anyway so I wouldn't have been able to see them well anyway.



Here's a picture of my arm scar after it had healed pretty well the last time (BEFORE the most recent round of surgeries). Not the most flattering picture but it works for giving you the idea. Searching for one from after surgery. I think I might also share some pictures of my back (I'm a bit cut up).

Sunday, June 27, 2010

tiny bows


My weird surgical scar has bizarre stitching. What is peculiar about the stitching on this surgery is the way that each stitch had an individual bow on top of it.You would think it is would have been worth the effort to simply cross over the "laces". Instead of tying each one of the 38 stitches into tiny little knots?

My guess is that the surgeon passed the job of stitching me back up to the resident. Now the resident could have simply needed to practice their tiny knot-tying skills, or had some time to kill on clock, who knows. But each of the stitches is tied in a tiny. There are 38 stitches in all.

Wednesday, June 23, 2010

My Brain Took a Holiday


Sorry I haven't posted in a while. My brain and body are back from their surgical sabbatical. There seem to be a lot of people who seemed to be rather upset when I posted cryptic facebook status, not think as I was recovering from Surgery "... is now missing an arm and a leg. Thank goodness God put in a spare of each." (Thankfully my sister took over and translated for the masses.

Considering I hadn't posted anything after surgery had happened, this was ominous sounding. The truth is rather not quite so exciting. The doctor went in to remove the hardware that he put in when I broke this arm the last time. There was an infection from the last one that caused the abscess. So they took everything out and are now hitting my arm with IV antibiotics, which I'm doing from the comfort of my home.

The incision went over the last one, now extending from the inside crook of my elbow to above the shoulder. Now there are a ton of stitches up my arm, making me feel like the male version of Sally from Nightmare Before Christmas. A picture is worth a thousand words, so I will post one as soon as I can find a camera.

While it heals, I have to try and not bear weight on that arm, essentially subtracting from the three I have working at the moment.

Tuesday, June 15, 2010

More Surgeries

Now I know that I haven't written in a while and that I have some catching up to do. Here is what is now going on:

Almost 2 weeks ago some swelling began in the crook of my right elbow. Now this is an area plagued with problems, including two breaks and a ton of extra bone growth in the area. Any of you who have seen the new bone (heterotopic ossification to be precise) know that it's big and it impedes the movement of the rest of my arm. To say the least, more problems with this arm are not suprising.

The swelling continued until it was a large fluid filled sack. I saw my orthopedic surgeon about it, but he advised it be left alone. He was concerned about the risk of more surgery; if the fluid was infected and that infection spread to the rest of the bone and hardware, extensive surgery and treatment would be necessary. So we left the giant bulge in my arm to wait, with instructions to go to the emergency room for antibiotics if it popped.

Early last week the skin started to dry out and crack. As the week wore on it even started to peel. It wasn't until friday that the seal was finally broken. In PT the large bump started oozing droplets of clear yellow fluid. We told the doctors and they had a whole bunch of tests done (this is a long story, will blog about it later). At the end of a very long weekend I finally got told by another round of doctors to wait and see, that they would be able to have the orthopedic team look at me on Wednesday.

Once my dad heard all the excitement that was going on, he drove up Sunday night, in order to see me to my spine surgeon and get some real answers. He highly encouraged me to hunt down my spine surgeon on Monday which we ended up doing. After seeing the state of the abscess on my arm, he recommended surgery on Wednesday (the soonest he could fit us in). His verdict was that now that it was open, the wound needed to drained and cleaned and the bone that was irritating the joint needed to be shaved down. He noted that additional surgery will be necessary if the infection has spread.

So here I am on the night before another surgery. Though hopefully less intensive then the recent round, it is still surgery. Here's hoping for a swift recovery and that my arm won't be out of commission for too long.

Wednesday, June 2, 2010

The Disabled Angry Bear Test

Today I was re-evaluated in physical therapy, it being a month since I started out patient therapy. It's hard to believe it's been that long, as well as being the start of the 6th month after the accident. Time is funny that way.

I was used to most of the evaluation already, having undergone similar things many many times in different forms over the months. It mostly consists of poking and prodding, testing my sensation, as well as measuring my strength and range of motion. New to this evaluation was testing how long I could stand and walk. This is new because I've only just recently started standing and walking with a brace. My endurance is already getting better, as I was able to walk two times around the gym area without stopping (I forget what she measured this as, but it was far enough).

One test she had me do was a speed test, in order to see how fast I could safely walk with the brace and walker. I dubbed it "The Angry Bear Test," as it's how fast you could run away from an angry bear (my words, not the therapists). I managed to go the 10m in about 33 secs. Not amazing time but it gives me a goal to strive for. When I let my parents know the results of the tests, I also let them know what I had nicknamed the test. My dad pointed out that at that speed, the only bear I would be able to outrun is a bear with amputations. So I've renamed is "The Disable Angry Bear Test."

Tuesday, June 1, 2010

Frustrations, Rocks, and the Pool

So things have been sort of so-so lately.

There have been several positives. For one, memorial day weekend! This means that I have monday off from therapy giving me a four day weekend (since I have therapy MWF). This has given me plenty of time to goof off, watch shows online, play video games, play with my cousins, etc.
Second, my dad is in town for the week, a rare opportunity since he normally stays down working in NC. It has been good to have another male to talk about things that are going on in my life. I love my mother, but there are some topics you don't want to discuss with her (sorry mom). He brought a very awesome gift with him. One of his poker buddies got back from the southwest somewhere and gave each of them a stone with an emblem engraved. He said that he was given one with a scorpion but traded for one with a turtle engraved. Here is the emblem, though the color of the rock is a deep brownish/bronze.

The website I found the picture says they're marketed as "energy gemstones." I like the name, since I had already found it very soothing to gently move my thumb around the smooth stone as I figured out my problems. Maybe it is my energy flowing into the rock. Who knows.
My dad being home has been a blessing in the fact that he can sort kick my butt a little. He forces me out of bed and toward activities which will give my body a test/build endurance. I need someone to do this, since I'm still desperately clinging to childhood and my bulletproof college lifestyle. We've gotten up and went to the pool several times, both the warm therapy pool and the lap pool.

On the other hand, there are the negatives. I have not spent this much time with my father in a very long time and we're already getting on each others' nerves. I want to say that I love my parents very much. That being said, I remember why I was so glad to go off to college. There are too many things that remind me that they will ALWAYS think of me as 6 years old, though to be fair I will always think of them as MOM and DAD, the people I called to when I was 6.

Add to that the traditional family stress, my own lack of sleep, exhaustion, and pain, we have been close to murder a handful of times. But we do love each other, so I guess I can suffer through all of those for the people who gave me the love and support for when my life is in the crapper.

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.

Wednesday, April 28, 2010

A Story of Hope: Conner McDougall


This is a website of one of my roommates, Conner. A quiet kid, but he responds with a smile to the world around him. His story is sad, but also one of hope. You can read his full story on his website:

http://www.caringbridge.org/visit/connermcdougall

In a car accident, tragically killing both his father and 6 year old brother, Conner survived to fight on. C1-C4 vertebrae were stretched but not broken, leaving him with impaired sensory and motor activity. Though his outlook initially was very bleak, Conner now is moving all his extremities and is currently weaning off the ventilator. A story of survival, Conner inspires mean what can be possible with persistence, hope, and the prayers and support of those around you.

Monday, April 26, 2010

Freedom (Take Two)

Yesterday I had my steering meeting, the meeting in which the plan for my care is decided. Everyone who is going to be involved in any part of therapy is there, along with nurses, social workers, case managers, doctors, etc. They all agree on what needs to be done for me. Finally they give me my planned release date: This Thursday, April 29.

Soon my recent experiences with hospitals will be over. Not that all of it has been bad; there were a slew of amazing nurses and aids, a couple of fun trips, and some fun activities. Yet on the whole I cannot call my experience a positive one, just a necessary one. I'll still be dealing with them in some form for quite a while (out-patient rehab), but I hope not to see the inside of one as anything but a visitor again for a long time.

I go back to my Aunt and Uncle's place, north of Baltimore. I look forward to being able to set my own schedule, make my own plans, and above all having two seconds of privacy for once (you just never really get a sense of privacy with people always opening and shutting your door, coming to check on you). I was only at my aunt and uncle's for a week, but I already felt like I had already gotten into the rhythm of the house. Part of me is reluctant to call this going home, which I've reserved for my trip back to Colorado in the fall. But it's filled with people who love me, running and giggling kids, food out the wazoo, and a room filled with crap that is distinctly mine. Since I can't go home yet, this is the best replacement I could have found.

My homecoming is bittersweet. I left happy and strong, and I come home weak and sobered. I come back with an understanding that my strength is fragile; I need to appreciate my going back even more. The big difference is I'm here to stay this time.

A Quick Recap

A quick recap of recent events:
I had 2 back surgeries to fix my spine. The first took out the shattered pieces of my vertebrae, placed them in a vertebrae-shaped cage and fitted them back into place. The second was necessary because there was still a small amount of pressure being put on my spinal chord. In the second surgery, a laminectomy, doctors shaved off part of one of my vertebrae, thereby relieving pressure on the spinal chord.

During these surgeries (and after) I stayed in the ICU (intensive care unit). I was here for about 8 days, lying flat on my back. This led to fluid filling my lungs and bowels all screwed up. I won't dwell on this too much.

This was followed by a short stay over at John Hopkins' Neuro floor. Boring, with no TV and internet so awful that it's hardly worth mentioning. It was just fast enough for me to get on the internet, but too slow to play any sort of video, even YouTube.

Finally, I was moved back to Kennedy Krieger. They've worked with me on several ways to move around and be functional, a challenge since there are several precautions I have to follow:
a)No Lifting over 10 lbs
b)No Twisting
c)No bending past 90 degrees.
These precautions have made moving around a pain. I can't pick anything up off the floor. I have to use a reacher to grab stuff I need. Dressing is aided by a similar device. Transferring had to be adapted; instead of bending forward like I originally learned, I have to bend backwards. It requires a little ingenuity, but doable.

This is where I am now. I'm waiting to see how long they're going to hold me here. I have a meeting Monday to see how long I should stay. From what I hear, they won't be keeping me long. Physical therapy and occupational therapy are running out of inpatient goals. My innards are more where they used to be, and I've figured out several ways of doing my own care. Chances are I won't be here long.

I wait for tomorrow, when judgment is going to be handed down on when I can leave my temporary prison*. It seems my life is made up of nights, waiting to see what will happen tomorrow. We're always waiting to see what tomorrow will bring.



*Though hospitals now feel like prisons, I can at least say that if I had to be somewhere, I would rather be at Kennedy Krieger.

Sunday, April 25, 2010

Motivation

It's been a challenge to sit down and write this post. Actually it's been a challenge to do pretty much anything now a days. It's not that it's physically demanding. On the contrary, as my strength returns I feel more and more like my old self again. Minus a leg.

The problem is I don't generally have enough motivation to do much of anything. I love to listen to music on pandora.com. One feature of the website is that after a certain amount of time, they stop playing music, to make sure a live person is actually there interacting with the website. On occasions like this it's hard to work up the motivation to take my mouse and click. I've laid there, just staring at the wall for maybe half an hour before starting the music up again.

Needless to say that it's nearly impossible to get anything actually done. Due largely to prodding from my mother I finally signed up for my classes, an accomplishment possible only because I knew exactly which classes I needed already.

I've always been a procrastinator, but now I'm taking it to the extremes. I love this blog, because to post something daily forces me to break out of my mental stupor. It forces me to get off my butt, put aside all the crap that's happened and DO SOMETHING!

It's not much, but it's a start.

Saturday, April 17, 2010

Surgeries

I'm sorry to all those who read my entry and may have gotten scared from that. It's a little incite into the mind of someone scared at the prospect of back surgery (which ended up turning into back surgeries). But I survived. Maybe came out a better person on the other side of it because. Or not; that remains to be seen of course.

So I went in Monday morning to the post-op surgery dept. Having gotten little sleep, everything both bright and exciting, while at the same blurred and gently rocking. I was on edge. Adrenaline began pumping through my veins. When my mother handed me a case for my glasses, I nervously began pumping them in and out. I could see my mother and father getting more tense beside me. Words of comfort came naturally to their lips, though I tell this was more through practice than through a real sense of calm. I touched my shoulder to the word inscribed there: "Calm". It brought me down a notch.

I undressed, getting into my gown and stockings. I lay there feeling vulnerable and weak. Blogging the night before surgery was possibly the worst idea I've ever had, since all my thoughts were now tangible and real. I was wheeled to the surgery room. I remember seeing the lights. All the rest was a blur until I began to wake up.

It's impossible to pinpoint moments and specific memories. What I remember was someones head slowly moving gently back and forth before my eyes. A nurse I think. Asking if I knew what my name was, if I knew where I was, and what date it was. I have now been asked those same questions more times than I can count. But I couldn't move. The work on my back had made it impossible move in the way that I had been so use to moving. In none but those first few day can I remember being so trapped and helpless. The button for pain was pushed a lot these last few.

I was told that surgery and gone well, that the anterior portion of the spinal chord had been essentially fixed. Having done a CT after this however, they found a small spot of stenosis on the posterior of my spine (my backside, for those not keeping up). This would require one more surgery, to be performed Friday. In a strange way this was actually good news. The area was smaller and easier to get to (since they would not have to go through my chest cavity to get there). Plus, I'd managed to survive one of these already, what was a little more on top of these.

I'll blog on the few days in between on a separate post.

The second surgery was later in the day. Stiff all that morning, I had mostly laid awake, pushing my pain button when-ever it felt appropriate. Starred a lot at the ceiling. I was wheeled down there saying that my parents were not here yet but they would meet us at the surgery door. I saw them before I went in, bedecked from head to toe in blue of various types of glove/hats/masks/etc. I grasped the hand of my dad, squeezing it tight. I grasped my mom's and looked into her eyes, willing her to have strength during the hours when I would be unconscious. I remember looking up at the pink multi-bulbed lights over my head as I wheeled in.

The next thing I remember was slightly surreal. It was the character's from The Fantastic Mr. Fox, whispering slowly round my bead. And Mr. Fox came slowly into focus. Eventually he switched from being stop-motion to real motion, and from being a Fox to my nurse. And I was back again.

I was under longer than expected because they found a lesion on my spine, which had adhered to the spinal column. They then closed my back, leaving me in the best condition my back had been in for some time.

Hopefully this is all the surgeries I will need. I want to be done (though I know there are some that are going to be needed far down the line). For now though, I am safe, I am not great but I AM recovering.

This post is riddled with typos/ loose ends of sentences, and things that don't really make much sense. I typed this at the end of tiring day, when I was VERY tired. I will make some changes/editing choices to it in the future, but for now I just need to let people know that things went well. More coming soon. (having read it once before I got more sleep, I think I will leave this post as is (as it already entertaining when I don't have the ability to fix it) and post a more legible post later. I just needed to get something up here after the rather sad last post. I am alive and once again on the long road to recovery.

Sunday, April 11, 2010

No Sleep

The wee hours of the morning, my surgery happening in a few hours. And I cannot sleep.

I tried to be responsible and sleep at 10, later than I should have but better than I usually get. I starred at the black of my ceiling for hours. The turtle clock (made by a cousin of mine) ticks loudly in the silence. Ticking away until the appointed hour.

It is odd to compare this with the night before everything changed. Deciding that since I always sleep through car rides I would stay up the whole night and sleep the car ride home. This is a tactic that I had done before, to great affect. So that night, I said goodnight to my sister, my father, and my mother; then snuck down to the basement to play video games. I am unashamed to say I played Lego Indian Jones, completing the whole game that night. About 5 minutes from finishing the game, I ran into my father, who had gotten up to make sure we were all awake.

We had gotten up early to take my sister to the airport. I remember very little about that morning. We loaded up the small car, packed ourselves in, and left. I leaned my head against the door (with pillow) and fell asleep. They woke me up when we got to the airport so I could say goodbye to my sister. Then I fell asleep again. The rest is history. All that I remember after that is a morphine fog, parting days afterwords.

Now, on the morning before surgery I can't help but marvel at the parallels. Both were nights before important events, both deprived of sleep, both stretch on endlessly in my mind.

Only this time I have time to dwell on circumstances, to know what is to come, to fear what may pass. The hope of my walking clashes with my realism. My knowledge that I'm getting one of the best surgeons in the world clashes with my knowledge that it is surgery and there's always the chance that this is my last post. All my hopes and fears amass themselves in this one evening that stretches on into eternity.

I know I should try and sleep again but it is hard. Shallow dreams have come, but only the sort that awaken and sharpen your brain, so I simply end up tossing and turning. The overactive brain is masochistic. It knows that it should shut down and recharge while it can but ignores this and keeps trudging on anyway. But that is why we blog I guess. Too much in an overpacked brain. I forget who I'm quoting, but in a description of blogging, "never have so many communicated so much to so few." Forgive the ramblings of a sleep deprived fool.

For I am scared. Never in my life have I gained back so much to risk loosing it again. I've gained back a leg. Aside from surgery's own risks (where there is always risk of death) I risk loosing function and the little bit of freedom that has gained me. I hear from everyone I talk to that people are praying for me; weird to think that in a weird way I have a following. I hope God hears those prayers. It is pointless to rant why, why, why, but it would be too much to say God and I are on even terms. I have seen my legs taken from me and face the prospect of loosing them again. And I know it can happen, that God decides to let me go without them. And I am frightened that it will come to pass. So I hope that prayers are heard. There is nothing else to do now. Except sleep.