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

Wednesday, March 31, 2010

Escalators

Yesterday I rode up and down the escalators with my mother and two of my therapist. Let me tell you, it was quite an experience.

The actual riding up and down was quite boring to tell you the truth. You just find a sweet spot so that all four wheels are balanced on a step and then you hold on to the moving sides. You are always looking uphill (so that you don't fall out of the chair) no matter if you are going up or down the escalator. I'd done this once before with my therapists but this was my first time with my mom. It was really easy and the skill that I was supposedly "learning" was mastered in one or two tries.

The interesting part of the whole experience was seeing everyone's reaction! Now granted they have some reason. Honestly, how often do you see someone in a wheelchair riding up and down an escalator? We did this in John's Hopkins at about 2:00 in the afternoon. So not horribly busy but there was a steady trickle of people.

Some looked on with mild interest. I probably would have too! Here I was, a 20 year old in a wheelchair being surrounded by two people on either side. I'm guessing they were simply puzzled as to why someone would try such a feat.

Others looked scandalized. Clearly they thought that surely someone would have banned wheelchairs from clogging up the escalators (though we only went up when there was a large gap in people).

The best group of people were the people who thought they were being helpful. Clearly it occurred to people that we simply couldn't find the elevator and figured the escalator was our only option (not quite as silly as it sounds. Hopkins can be very maze-like). What amazed me though were the shear number of people who thought we were in such a predicament. They asked us "Did you know that you can use the elevator, right over there?" We tried not to laugh, and my therapists calmly answered "No, were actually practicing wheelchair skills." By about the fourth or fifth time it was pretty hillarious. I predicted as we were about to go down again that we would be asked if we knew that they elevators were close by; and sure enough, almost as soon as we got on, we were asked this question again. In total, eight separate people asked us. We must have looked desperate or lost or something.

This is not really a very useful skill most of the time. It will come in handy every once in a while, say if the elevator is broken and we have to use the escalator. Other than that, this skill is more along the line of party trick. But it's cool to know that I can do it.

One other thing I learned by sheer coincidence: one of the fastest way to find the elevator is to ride the escalator. People will then have a driving need to point out where it is.

Tuesday, March 30, 2010

Alternative Therapies: Massage

There are several alternative therapies offered here at Kennedy Krieger. I signed up for all of them in addition to all my usual therapies. I figured why not? I may as well. I would be able to try them out and they may even help my recovery.

The first and easiest therapy was massage. Frankly speaking, I wouldn't have said no to a massage even if I wasn't in a hospital. Working the long hours that I am, there is nothing better on the muscles than having a massage.

Depending on the masseuse, some weeks were better than others. I've seen a total of three different people during massage therapy, all with varying specialties and areas where they did the most good. The first focused on my lower back and shoulders. She was good at relieving the tension of days filled with tiring work. My muscles were sore and in dire need of care. And this she did marvoulously.

The second masseuse was far less direct. She spent more time on my feet and my legs. She slowly worked up the body and used more pressure in certain spots than active massage. She pressed on matching sore spots on my feet and back and the harder she pressed on both, the better they both felt. She also used used a weird heat release. She pressed on certain spots and suddenly my skin felt warmer and warmer, getting really hot. She then proceeded to trace this heat down my back, through my legs, and finally, releasing it at my feet. I don't understand how or what she did, but it was amazing feeling. The combination of pressure, active massage, and heat left me feeling amazing. To quote my facebook status of the day:

I just got a massage and my body feels like Jello!.

A friend asked me what type of Jello I was. The answer, as should be obvious from this blog was Lime (it's not easy being green).

I must admit that something macho in me resisted the idea of getting massage. But I can now freely say that when I leave here I'll go out and get a massage on my own dime. And advise you to do the same.

Monday, March 29, 2010

My new wheelchair



This is the wheelchair I'll be getting! The Quickie Q7 is an ultralight Aluminum Wheelchair. It's slightly heavier than the Tilite ZRA (the equivalent wheelchair from Tilite) but it had a better feel to it than the Tilite. While on paper the ZRA was lighter on paper, it felt heavier when I trialed out the wheelchair. The vendor for my wheelchair has said that it'll be here sometime this week, before I get released from inpatient to outpatient. It's been custom molded to my dimensions and will be exactly what I need for this summer and when I go back to school in Colorado.

Sunday, March 28, 2010

Five Memories I Will Remember When the **** Hits the Fan

If you saw the post "The Importance of Memories," I shared a few memories that pushed me forward when things got hard. I advised people to think of 5 memories for when time get bad and promised a list of my own. Here they are in no particular order; these memories simply made me happy.

5. Going to see Avatar in 3-D. I hadn't seen a movie in 2 and half months (the last was The Princess and the Frog back in December) You can have your own opinion of the plot but when seen in 3D the effects were breathtaking; I really badly wanted to go to live on Pandora (the beautiful world where the story takes place). My favorite part of going to the movie was before the previews even started. My mom had gone to get the popcorn and I was sitting at the edge of the row in my wheelchair. Having always hated sitting on the end, I transferred over to one seat and then two (not a simple task, since the armrests were in the way. I felt up to the challenge). It was worth it to see the puzzled expression on my mom's face when my wheelchair was empty and I was in the center of the row.

4. Chatting with my friends over webcam. I am forever grateful to my parents for the gift of my laptop. It's an HP and along with many other great features it has a decent quality internal webcam. This means I don't have to rely on my phone as my only line of communication with my all my friends! It was one of the best experiences of that beginning time when I was able to wish my friend Happy Birthday at her birthday party. I've been able to shoot the breeze with my former roommates, keep my family updated face to face, and talk about absolutely nothing when I've had too much going on in my life.

3. Swimming in the therapy pool for the first time.
Once the strength in my leg had returned to the point where they thought it would be worth my time to begin gait-training (the precursor to walking), they tried putting me in a the Litegait. A harness that was meant to be used over a treadmill, this ended up being one of the most excruciating experiences of my life. I found out afterwords that most guys who have had the pleasure of being in this contraption refers to it as "The Man-Crusher" (if you can't understand this reference you're probably not old enough to read this blog). So after several attempts they decided that the therapy pool was a much better fit for me. The therapy pool is amazing instrument, with a floor that you can wheel up to. After you are on it descends into the water, kept at a comfortably warm temp. There are cameras built into the wall so you can watch your feet without looking down (it can skrew up your posture looking down, and that's one of the things I was working on). The hour session was grueling, with lots of work on walking, posture, and leg strength. It was only in the last two minutes that I was allowed to swim. I went underwater, swimming fairly gracefully back and forth. I made faces for the cameras (my mom made me do this again so she could get a picture). Lastly I tried to stay on the bottom (managing it pretty well)... and then on my last return to the surface I hit my head on the parallel bars I had been using the whole session! I was okay, but not the most graceful end to a day in the water. Oh well. Place a turtle back in the water, he'll do a good job but he might slip up just once or twice.

2. Shooting a firearm for the first time. When I went to visit my aunts/uncles/cousins for the first time, my uncle mentioned that he goes to an indoor shooting range with a couple of lanes that were wheelchair accessible. He offered to take me the next weekend to go shoot off some rounds; taking him up on his offer was one of the best decisions I've ever made. I fired off a 7mm pistol and a cool retro rifle that my uncle had just acquired. To describe the experience I have just two words: THE POWER! You can feel how much damage one of these could do. I took a couple of rounds to do a couple head shots; my aim was slightly off so I ended up taking out the target's jaw instead but I'll take it. When I was done I felt so loose and relaxed, having taken out much of my unvented aggression on the defenseless target.I still have that first target and I'll be keeping that for a while.

1. Moving my toe for the first time. It was an experience of pure joy and relief that I've never had the equal of in my life. It had been a month since the accident and in all that time no trace of movement had shown itself. Even thinking about the word paraplegic was something I didn't want to do. But as time continued on, it looked more and more like that was going to be a reality. I went through the stages of loss and grief. At first I simply didn't think about it. I didn't even try and deny it, I just went on and thought about other things. Then I got pissed off. I hated these damn legs, the fact that they were holding me back. I had loved them and used them for great things and they repaid me by laying there like two overly heavy paperweights. Then I hit depression. That lasted a while (not all the time, but often enough). Though I put on a brave face, I missed my legs. I had enjoyed them, for running, walking, biking, jumping, simply standing. I missed them and I didn't want to let them go. I cried more than a few tears as time went on. I felt useless and weak. I was slowly moving toward acceptance (I'm too honest to say that I was actually there) as time progressed. When I went to see my spinal surgeon, he said that statistically speaking after that much time I was unlikely to walk again. I wasn't really surprised but it was something else hearing from a professional. I had come to terms with the fact that I'd be in wheelchair for the rest of my life. It was only a few a days after that I proved him wrong. My mom was helping me put lotion on my dry feet (this happens if you don't use your feet regularly) when she said as she had so many times before just "Just try moving your foot." I gave it a try and then I realized my mom had gone suddenly still. Then, "HOLY CRAP! It's moving!" We got a nurse in to make sure we had another witness. The leg eventually started waking up, with the foot moving within the next two weeks. And by the third week, other muscles in my leg starting working. Now I'm walking and standing on that leg, though the other stays essentially the same (one toe is moving, so I'll see what happens). I hope you really understand what I mean when I have never been more excited to see a toe wiggling! It was as if I suddenly got my legs back from the dead!

These are my list of things I will always remember. Even when things were at their worst, I still had plenty to be happy about and look back on.

Please post any memories you'd remember when you need them. Whether or not anyone posts anything, I encourage everyone to think about this now, when things are good. It'll make any troubles you run into a little less dark.

Wednesday, March 24, 2010

Chinese Proverb



This was a picture hanging in the physical therapy gym. And it is awesome.

The Importance of Daydreams

So simple and yet so powerful, memories are such a fickle things. Tonight I was siting in the shower and I closed my eyes, and I remembered Colorado. I was walking through the oval, the trees in the height of fall: all reds, yellows and vivid orange. On all sides were the buildings of CSU, so ordinary then and yet so powerful now. It was heart wrenching to open my eyes and see the gray shower tiles.

This is not the first time I've zoned out and gone off back to Fort Collins. Its hard not to do this some times having spent so much memorable time in Fort Collins and if you ask me where home is, I would have to say there. Calling up these these memories is sometimes my choice, but the exercise I'm being put through often activates stronger memories (and in one of the quirks of muscle memory) bringing back details I didn't know I had.

The first time this happened, I was in the nursing home. One of the rehabilitation technologies used there is electrical stimulation, which innervate the muscles making them contract. When the muscles in my calf contracted for the first time, it felt like I was running. Suddenly, I was back in Fort Collins. Me and my roommate had goaded each other in running, with the hope of getting both of us into something resembling our former in-shape selves. I was picking up my feet, running past CSU and into old town. With my muscle contracting the way used to on its own, it felt like I was running. I opened my eyes and the rehab gym was in front of me again. It was so real and so sudden it took effort to hold back the emotions that suddenly flooded over me.

While not as vivid or shocking as the first time this happened, the feel of the electrodes on different parts of my legs bring back memories. The calves feel like running in Colorado, but also bring back memories of long hard runs with my Dad over the hills of Seattle. I remember that at the part of the hill where it got really steep had a house with a landscape that changed with the seasons (they trimmed their hedges into strange and interesting shapes and I got see them shift, as they were on our regular route). The quads bring back sprinting through the halls of Ballard High School during wrestling practice. I've had notoriously bad memory for things like this but when I'm running, I can see myself running past the different lockers, pinpointing exactly where all my friends used to have theirs. It brings back the smell of sweat, the ache of muscles that have been pushed hard, and the echoes of the hall as we ran furiously back and forth.

Here at Kennedy Krieger they have an electrical stimulus bicycle, which powers the bike through a combination of electrical stimulation, my body's own movements, and an internal motor (regulating between the three using an internal computer). In the time I spent in Fort Collins before I got my truck Betty I rode my bike everywhere. The bike motion is enough to trigger memories of biking furiously to class, to work, and to many other destinations to play; I spent a good twenty minutes of the bike ride remembering the route to Big City Burrito, including an exquisite reliving of eating my favorite burrito(A potato burrito with chicken mole on a regular wheat tortilla, cheese but no onions, corn salsa, sour cream, ranch, and Mad Antony's hotsause). The memory is so strong I can remember every ingredient, every flavor, every juicy delicious bite. It made my mouth water and my lunch that followed after the workout seem rather sad and bland.

It is easy to sink into all these memories of better times but the memories are painful after all that happened. They're part of a life that I haven't been a part of for months now. It'll be months more until I'm part of it again, and I'll have come back changed (denying my own change would be pointless and possibly harmful). Though I wish I could be present in my friends lives and they wish they were here for mine, distance and time play a role in all our lives that can't be undone. Not that we have much choice. Our lives have shifted and we now have memories in the place that our loved ones used to be.

I don't mean this to be a negative sounding post, because it isn't. I can remember the people and places in my life as though they were part of me; the mere movement of my body is enough to trigger to happy moments of my past. They gave me a memory of joy in what would otherwise be a hard and uncomfortable experience. So now I have a ton of new memories, that of my friends and family bringing me through at the worst of times.

My advice to every reader, take five memories of your life now. Make them things that you want to remember when you need a reminder of what you enjoy most, when you're still carefree and happy (I pray that nothing bad should happen, but this is how it will look in hindsight). I'm thankful for all the gains that I've made and know I have some new memories to make up ahead. I'll follow my own advice and in a later post let you know what mine are for my life now.

Tuesday, March 23, 2010

Social Skills

Your sense of pride and modesty change when you need help with all aspects of care and bodily functions. When celebrating the return of bowel control, my mom said that its good to finally have mastering this social skill (I think/hope the "social" part was unintentional). My therapist started giggling, noting that "Pooping should not be a social skill! That's generally something you do by yourself."

While this is funny, you don't normally think of what kind of etiquette is required for someone caring for your innards. I like to think I managed something close to grace (or as much grace as can be mastered with a virtual stranger caring for those functions). Now ask yourself, if you were in a situation where the normal day to day living that you enjoy was interrupted, how would you treat those caring for you? You may consider yourself capable of being a decent person under the worst of situations, and for the sake of those working with you, I certainly hope so.

The nurses and nurses aids who help you in these situations are the most amazing people you will ever come across. Not only are they there with you in your hour of need, they are doing tasks even you may be apprehensive about under normal circumstances. And for their sake, I always strive to be polite at the very least. Here is my top 10 list of things I've learned and suggest for anyone who spends ANY time in a hospital:

10. Be honest.
If you have the slightest discomfort when someone is doing something to you, let them know. They generally won't take offense if you tell them nicely. Otherwise, they'll keep doing it. Again and again and again!

9. Be patient.
These wonderful people are doing all they can to take care of everything at once (for you and a ton of other patients), so cut them some slack!

8. Be cooperative. Chances are, doctors/nurses/aids may know more than you do about your care, at least at first. See what they have to say before you tell them that they're doing it wrong.

7. Remember the details of your care. You will have multiple doctors, nurses, nurses aids, techs, and random people who just wandered in caring for you. Chances are they won't know your routine (go figure). You are your own advocate, so let them know what you routine is.

6. If you see someone for the first time that day, ask them how their day is going. If they are having a good day, then you know things with this person are going to go that much better today. If they're having a rough day... let them vent. Better they get it out of their system at the start then have it dwelling on their mind the entire time they're working with you.

5. Find out one thing about everyone! In a situation where you see 20 people every day and they switch out every few hours, you're never going to keep anybody straight if you don't have some small detail to fix to their face and personality.

4. Always say please and thank you.
Your nurses and nurses aids are being paid to care for you. They're not paid to be nice. Having someone who likes you makes things just happen that much smoother.

3. Always, always, always try and remember people's names. It's not required (and if you tell them you forgot their name most likely they won't be offended) but nothing brightens your day more than someone thanking you by name.

2. Be Flexible. Things change at a moments notice. Routines are good for maintaining quality of care, but if circumstances beyond anyone's control happen (and they will) its not their fault.

1. Try and be cheerful. Yes what happened to you really sucks (if you're in the hospital, you're generally not there because you feel just dandy) but there's no reason to take it out on anyone, especially the people who are only their to help make your life livable. Remember, the sun still shines, blue birds still sing, and somewhere out there, people are busily baking pies. (Mmmmmm pie!)

Not a complete list. Hopefully this stuff should be obvious (I certainly hope so) but take what you want from it anyway. I don't think it takes any of us that long to think of someone who could probably work a little on their social skills.

If you think of anything that should be added to this list, comment on it here or send me an email.

Sunday, March 21, 2010

Hospital Beds

I've seen more Hospital Beds in the past few months than I ever dreamed I would see in my life. I don't remember waking up after the accident; I merely swum in a morphine haze. Slowly it dawned on me what was going on: I wasn't just injured in a temporary sense, I couldn't move my legs at all! Still it didn't really hit. It was too early, there was too much still going on, and everyone talked about the healing effects of time. This may be true but it means very little for someone in that situation. It didn't really sink in for some time.

I was in University of Maryland Shock-Trauma for about a week. They put plates in both my arms, my left forearm and my right bicep, fixing the break in place so that soon I'd be able to bear weight on my arms and use them in physical therapy. My back had a rod and several pins to stabilize my spine. I was all set for a stay in a rehab hospital. They picked me up off the hospital bed and drove me in an ambulance to the my next destination, Kernan Rehab Hospital. They wheeled me in and I found myself in another bed, different but very much the same.

Kernan Hospital is an extensive rehab hospital with an extensive spinal cord rehab floor. It had two beds to a room, so for the first time I had a roommate. He was about my age and had ended up worse than myself by wrestling around with a friend, when suddenly he had a break in his neck. He had been there some time and had gone from virtually nothing to moving his arms and legs a fair bit. I was already ahead of him as far as movement in my upper body since my injury was much lower on my spine. I began to use my arms for pulling myself around, using the rails on either side of the bed, helping with the few tasks that I could. I was at the point where I needed help with every aspect of my care. Your pride and modesty has to be put aside when someone is looking at your bare ass 10 times a day. When there is so little in your control, being able to roll was a small trophy of power.

Rehab at Kernan pushed me, forced me exert myself harder than I had in years. They're team of PT and OT therapists who try and keep their patients motivated which they were mildly successful at. Though they tried their best, they were limited by the fact that they only saw us 3 hours a day (I heard someone saw this was an insurance thing). I spent a lot of my day in my bed, simply because it was far more comfortable than my wheelchair. The chair was a high quality chair but if you can barely move, any chair feels terribly after not too long.

Sooner than I expected I got my arms back. I was cleared to use them to put weight on, which you need to do any real function movement. I began wheeling myself around and I learned to start transferring out of my bed with the aid of a transfer board (nothing more than a plank to help me slide from one to the other) and a nurses aid or two. I was beginning to see a possible future with my arms. My legs still hadn't done anything but through various struggles I saw that I could have a life using my arms. Then I broke my right arm again.

Strictly speaking I rolled on my arm. I had just learned how to roll again and was told to roll on my stomach in PT one of my first weekends. I didn't move my arm out of the way of my roll fast enough, getting caught underneath my body. I immediately went from a 1 to a 6 on my pain scale (to anyone who hasn't spent significant time in a hospital, everybody measures pain on a scale from 1 to 10). Therapy got stopped because I'd injured myself and I was moved back to my bed. I have a lot of memories that involve sitting in bed in pain and staring up at the ceiling. I nursed my injured arm, which hurt like hell. It was the next Monday morning I lifted my arm to see how much my arm and shoulder had healed over the weekend. It was then I heard a loud SNAP and my pain was now an 8.

When they eventually did an X-ray, they found that they screws holding the plate onto the bone had snapped; the screws were most likely in too tight, which caused the heads of the screws to pop off. The snap that I heard was the last screw popping off.

More surgery, more hospital beds. Better yet, when I got back to Kernan with a newly fixed arm they started using a lift to get me out of bed. Not only had I lost my arm but I had lost the limited mobility. Best yet, they were getting rid of me! Having decided that I was now pretty much useless for a while, they stuck decided I was better suited to being in a nursing home while my arm healed.

That's how I ended up in a nursing home bed, this one looking over a courtyard; but the name change didn't help make a bed any less confining. Fate seems to play with me and my mobility. They managed to find me a power chair so I could wheel myself around, though it still took two people to get me out of bed every morning. I won't dwell on my experience there in this post (it was alright, but it was a trying time). I'll simply say I improved and I finally got weight bearing on my arms back. Due largely to the suggestions of my parents, I didn't go back to Kernan. I instead went to Kennedy Krieger, rehab/research hospital connected with John's Hopkins. Though they were primarily a pediatric hospital, they had one of the best spinal cord programs in the country.

Now this is what I mean by fate playing with my mobility. When I arrived at Kennedy Krieger, they put me on a motorized air mattress. This type of mattress is meant for those with severe movement impairments; the air stops patients from developing bed sores. It is only after this dire omen that my story starts turning positive. I starting moving and working from the moment I got there. The therapists wanted me out of bed and active as much as possible. Now in an environment that pushes me and strives to make me mobile and independent, I'm thriving.

This is where I am today. I am in my final weeks here as inpatient, already biting at the bit to get to my aunt and uncle's, where I will be staying for my outpatient work. My mom is looking around for a twin bed, the bed that will hopefully be my last for a while. But that bed will be different; whereas many of the beds I have been in have been meant to live in, a temporary resting place, this one will at last only be for sleep.

Saturday, March 20, 2010

The Website For the Three Legged Sea Turtle

http://www.aqua.org/animals_greenseaturtle.html

Apparently she is named Calypso. If you go to the website you can read her story. She was rescued from the wild. She wasn't a spinal cord injury, but she's still really awesome.

The Three Finned Turtle

This post is primarily for anyone who doesn't know my story. For an explanation of the turtle, skip ahead:

I was the backseat passenger in a car accident somewhere around the DC beltway. I was asleep when it happened, way back in December. Driving home from visiting with family, I slept up against the door of the car, thinking I would sleep through the boring endless car ride, or at least not have to deal with most of it. From what I've gathered, a truck ahead of us was sitting on the road, stopped (possibly a car accident but I don't know). Trying to avoid the car, my father (the driver) turned the steering wheel to avoid the sudden obstacle. He hit what I can only assume to be a patch of ice. We spun around, smashing my side of the car into the truck; I broke both my arms, fractured my spinal cord at L1 and L2, ruptured my spleen and bruised my kidney. I wasn't the only victim (my mother and father both suffered head and neck injuries, from which they have thankfully recovered) but I was the most severely hit. I was rushed to the hospital, where numerous surgeries were performed, saving my life. When I woke I was able to use my arms but was paralyzed below the waist.

Three months down the road, things are much brighter but by no means clear. I've regained full function in my right leg and have begun the first steps toward standing and walking. I've been through hell to get to the point where I can stand on my one good leg, so I try and use it at every opportunity. The right leg gets stronger by the day while despite
stretching and exercise my left leg slowly atrophies. My therapists are confident that I will walk one day with bracing on my left leg, worst case scenario. There are more surgeries on my back considered for the future, but for now I'm told to work hard and get back as much function as I can.

The name of the blog comes from a visit I recently made to the Baltimore aquarium. I have always had an affinity for turtles; they drift slowly in the ocean but in the moment that action is needed, there are very few things that are faster than a sea turtle. I even got a sea turtle tattoo (if you don't like tattoos, chalk it up to youthful stupidity). At the Baltimore Aquarium, at the end of the ramps with the shark tanks, there is a sea turtle with three fins. Even though she's missing a fin, she swims eloquently, gliding through the water. I need to go back and get a picture for her to be a proper mascot for a blog that is meant to talk about traumatic injury and the road to recovery.

I'll post more on my recovery and how I got here later. I also want to focus on other people who have walked down this same road, so to speak. I have been extremely lucky that my injuries weren't more severe than they were and I thank God for that every day. By all rights I should be gone but I'm not. This blog is part coping mechanism, research tool, and information sharing device. Whatever part you come seeking, I hope it helps you in some way. If there's anything I've learned in all this, we're nothing without those who help us along the way.


***link to Calypso, the three finned turtle:***
http://www.aqua.org/animals_greenseaturtle.html