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.

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.

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.

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:

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.

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.

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.