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.

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:


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.


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.


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


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.


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.


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.