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

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:

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


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 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


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.

Friday, April 9, 2010

Surgery is imminent

We got a call from the surgeon that instead of on the 19th when it was scheduled, I now will be having back surgery this coming Monday. This is an informative post for family and friends. If you don't want to know the details of intensive back surgery, stop here. While I appreciate that some of you may feel the need to call and find out more in-depth, but I beg of you to wait. I get a million and a half phone calls already. Either leave you comments on the blog, my facebook page, or just email me. That way I can actually get to all of you without going insane.

In the accident I fractured the L1 and L2 vertebrae (L stands for Lumbar, if you're looking at the picture). Those vertebrae were pretty messed up, leaving them in shards that eventually formed a mass of bone that acts as a support. Immediately after the accident, a rod and several pins were stuck up my spine to stabilize the spine. Other than that, they left my spine alone because I was in critical condition already. This rod isn't a perfect solution, and it may be removed/fused at some point, but this isn't that surgery.

What is happening is that the fragments of my vertebrae are pushing up against the spinal chord. This may be responsible for the back/leg pain I have been having, as well as the reason my left leg hasn't returned yet.

The surgery will involve relieving the pressure these fragments are putting on the nerves of the spinal chord. Since the damage to the chord is on the front, they will have to go in from the front, which is going to leave me a nice surgical scar, going just under my ribline, to add to my collection. Moving aside all my innards, they will remove the fragments of bone and fuse a support onto the area, taking the place of the vertebrae they just removed.

The major reason for this surgery is preventative: if I were to have an accident of some kind in the future, this pressure on the nerves could be enough so that I loose the control of my right leg that I've been working so hard to get back. There is the possibility that I could gain some of my left leg back, though I'm not holding my breath. I'm just hoping to reduce the worst of what has already happened.

There is a lot of good that could come from this surgery, though like any surgery it has its risks. But I'm not focusing on those right now. I'm keeping my eye on the ball to what could happen in the future.

Wednesday, April 7, 2010

The Turtle Swims Again

Today for the first time I swam.

I'd been swimming for a few brief moments before and after therapy in the therapy pool but it was few and far between. Again I am eternally grateful to my mother; she signed up for a gym with an amazing pool system and now I am able to swim free without constraint.

They actually have three pools. They use a mixture of chlorine and salt water, reducing the amount of chemicals they have to use. The salt water also makes for an amazing swimming experience. They have three areas: a lap swim pool kept at normal pool temp, a therapy pool kept at 96 degrees, and a hot tub which is to say the least really hot. They also have an outdoor pool area which they are in the process of opening up. This has several areas and a water slide. I would give almost anything to go on the water slide, but with a flight of stairs it is not handicap accessible (I guess they figure if you're handicapped, you have no business going down a water slide).

I swam in the therapy pool and had an amazing time. Not limited by my leg in the least, I swam many laps back and forth. It did sort of drag in the water like a log, but my right leg more than made up for it. Instead of being limited, I was light as a feather, swimming through the water with a grace I never managed on land (even with two legs). I felt strong, I felt nearly whole again, and I forgot that I had ever doubted my abilities.

Tuesday, April 6, 2010


I finally got to where I'm going. But the more time I spend here the more I am forced to look back.

I unpacked all my clothes today. A mix of stuff from when I came here and everything I've picked up along the way.

There's a whole ton of pajama pants. These are from the Kernan and from the nursing home. These where when I couldn't dress myself and had to have help with the most minute task. These were comfy and easy to get over legs that don't want to help. They were also easy to remove if my bowels decided they weren't going to cooperate either.

I have a random assortment of tees. I only came with two or three sets of clothes, only expecting to stay about a week and a half. The rest are struck with landmarks of my extended family's past. There are shirts from blood drives in places I've never heard of. There is a shirt from a birthday party of an uncle, who's birthday bash I never attended. Gifts from family when i was in need. I needed to be clothed when I was naked and they gave me the shirt off their backs.

There are endless random socks. Some are loaned, some where newly bought. I have some thick wool socks because it got so cold in the nursing home. I spent many days there, looking out on the feet of snow that descended when I was there. I had few visitors and the staff was forced to stay there because it wasn't safe to drive. I never thought socks would bring back memories.

There are a few pairs of workout shorts. These were when I was moved to Kennedy. I was finally put in a PT program that forced me to work hard, driving to the point where I was sweating again (weird as it sounds, this is one of the happiest times).

And finally there are the jeans. Back when I had two legs these were all I wore; wearing a pear of khakis made me feel strange. Having not worn them for some time, they felt constraining and uncomfortable. They were something from a past life. But I felt normal wearing them again. They were when I was just starting to get out into the community a little bit. They represented a little bit of the freedom that had been stolen from me and that I'm now just starting to get back.

Where does all this mess of mismatched memories and clothes leave me? With a mess and more laundry that I have to do.

Friday, April 2, 2010

Phone Calls

I want to say in advance that I have been playing phone tag with many of my readers (since most of my readers are family or friends). This is partly an explanation to all of you for why I don't answer your calls or call you back.

I have to say that being stuck in a bed all day sucks. This should be obvious, but it also presents its own challenges. I get a TON of phone calls during the day, from concerned family, friends, and distant acquaintances. (Now I JUST want to say, I value the fact that I have a support network of this kind. I consider myself extremely lucky)

Since I don't carry my phone with me to therapy (who needs THAT kind of interruption) I generally keep it at the side of my bed. When I am here it seems like my phone never stops ringing. I want to give the example of this past Sunday. I woke up around 10 oclock since it was my one day off. I ate lunch around 11:30. It was near the end of my lunch that I got a call from a friend out in Colorado. I then spent the better part of the next 7 hours on the phone. When that friend was winding down, I got a call from my mother. During her call I got another call from Colorado. and so on and so on. I did have some breaks between, but my day of rest included mostly catching people up on my situation.

Others, knowing my schedule quite well, call me after I'm done with therapy during the day. While I love you all, there are limits to how much I really want to talk to people. And during the middle of a tiring week after a tiring day, you are not my highest priority. Imagine working double shifts everyday, six days a week. Then imagine everyone you know calling to check up on you because you are working so hard. So don't be offended if on a particular day, I don't really want to talk to you.

Like I said, I am honored that so many people care about me. I really really am. But now you might be able to understand why you're not hearing from me all the time.

Thursday, April 1, 2010


I'm extremely excited about my release this Saturday. I'm finally being released into a place where I don't have to get a whole bunch of paperwork, go through an elevator, past security guards, to cross the street with a chaperon. I'm am so sick of hospital beds, hospital food, and the sterile feel of the hospital. While I still have therapy, a large part of my routine will now be up to me. They see me as fit enough to return home and care for myself: I transfer myself in and out of bed, I can take all my pills on time, I can wipe my own ass. I am so glad to be leaving!

This is not all joyous; I will miss the people who helped me get here. As perhaps my favorite nurse checked off that I knew what the side effects/times of my pills were, I was sad that I wouldn't see her for a while (it was the last time I would see her before I was discharged). I will come and visit, but it's not the same as having someone there, able to talk to you at the push of a button. Here at Kennedy I have been extremely lucky in that I like all of my nurses and all of my therapists. At other places there were definitely people I didn't like at all on staff. Here I can only think of people who I didn't know that well or I didn't know at all.

I'll be going to my aunt and uncle's place. They've set up a mini-apartment down in their basement(to be honest it's actually bigger than my first apartment. And nicer too). It'll be good just to sleep in a normal bed again, surrounded by normal things. I'm looking forward to not having to listen to the constant buzz of people and machines.

This is the real test of all my skills. I'll see if I'm really able to use any of them in the real world. I'm pretty confident that things will go well. I see blue skies in my future.