Love On Wheelz

Broncotalk.net

I'm a huge Bronco fan. I was elated when we handed Brady his first playoff loss in 2005 and I bawled when we lost to the Steelers the following week. So when they let me audition to become a regular contributor over at Bronco Talk, I was elated. If you're jonesing for your hotwheelz fix you can read my article here.

(The next installment of 'Surgery' is coming soon. My editor has been on her deathbed, send her well wishes.)

Surgery - Part 1

We were on our way to my Scoliosis surgery. Me and my parents had been putting this surgery off since I was eight. I had been scared ever since I heard that my MD camp counselor died on the operating table because his heart gave out.

I made sure to take a full physical, with emphasis on my heart, before the surgery. Everything checked out. I was as healthy as I could be (except for the whole can't walk thing, of course). Still, that did little to squelch my fears.

"Twenty-twenty-twenty four hours to go, I wanna be sedated, Nothin' to do and no where to go-o-oh I wanna be sedated." Rodrigo sang to me in his best Joey Ramone voice. I snapped out of my trance and cracked a slight smile as a single tear slipped into my mouth. He had flown in from Mexico so he could be with me during the surgery. Then he stayed up with me until 4am playing Call of Duty, only to wake up at 6am to leave for the hospital.

"Twenty-twenty-twenty four hours to go....Just put me in a wheelchair, get me on a plane, Hurry hurry hurry before I go insane." He danced wildly in the backseat.

"You look like you're having a seizure," I said with a slight chuckle and between tears.

"We're here," my mom announced.

I looked out the window and there it was. So many horrible memories, and yet, I probably wouldn't be alive if it wasn't for this place. I hate it something fierce, but I need it. I need it like I need nurses. You don't want 'em, but they make your life not only easier, but possible.

It was 6am and a thick fog shrouded the hospital, making everything seem more ominous. I went as slow as I could, fearing that with every forward turn of my wheel I was inching closer and closer to my death.

"Hey guys! Sorry I'm late," screamed a high pitched voice out of the fog. It was my sister. She kissed me on the cheek and tried to make light conversation. I ignored it mostly. Everything seemed inconsequential. Would the Padres ever start hitting? Was Jay Cutler the Broncos' savior? What would I do with my life? None of it mattered. We all went inside and got on the elevator.

"Where's dad?" I asked my mom

"He's on his way. He's stuck in traffic"

"Is he gonna make it before I go in?"

"I'm sure he will," she reassured me. "Now, go to the waiting room while I get you checked in."

The waiting room was full of little kids in hospital gowns. They don't do much, just sit there. They wonder why they're in the hospital so much. Why it happened to them. Why they can't be playing with their friends. That thinking won't change much as they get older.

No more than five minutes later my mom came back.

"Come on, they want you in the prep room."

"Wow. So quick? Are you sure?" I didn't want to go yet. I wasn't ready. Dad wasn't here yet.

"Yeah, yeah come on."

I rolled forward with my entourage trailing behind me. The prep room was cold. It had marble floors and a litter of beds evenly spaced out. Each one with their own curtain for the patient's supposed privacy. Although, I don't think it's very private when you can the nurse exclaim, "My, what a big poopoo you made!" to Timmy the 12-year-old 'tard across the room.

"We need you to change into this gown." The nurse said as she popped into my "room." She took my temperature and blood pressure as she asked my mom all the standard questions. Any allergies? Any problems with anesthesia? Anything you would like me to tell the surgeon?

"Yes," I piped in.

She turned to look at me, surprised that I actually had a fully functional brain. "Yes, hun?"

"When I'm in there, I don't want everyone to ignore me. I have a very good idea of what's going on with my body. And I always know when something's wrong, so don't just dismiss me when I say something." I always ask this before every surgery. I don't feel comfortable with people I don't know taking care of me, even if they are doctors and nurses. My request is almost always ignored, but asking slightly relieves my anxiety.

"Okay, hun," she said cheerfully, "Two nurses will be right out to take you into the OR."

My face went pale as the realization that this really was happening hit me. They were going to open my back and put titanium rods up my spine. There was going to be a very sharp knife inches away from all my major nerves. My eyes started welling up.

"I c-c-changed my mind. I don't wanna do this. Let's just go home." I said in between sobs.

"You know we can't do that, baby," my sister told me, "Even if we could, we can't put this off forever."

"Yeah, dude. Let's just get this over with. It'll be fine, I promise," Rodrigo said.

"Where's dad?" I asked, still crying.

Just then, he came in red and out of breath. "Hey, sorry I'm late. How you doin' champ?" He ruffled my hair. I looked at him, begging him to take me home with my eyes. "It'll be fine," he said, reassuringly.

At that moment two nurses came in. "Ready, hun?"

Everyone kissed me goodbye as the nurses took me away. They pushed me through double-doors into poorly lit corridor with no windows. They yapped between themselves about some unimportant shit while I silently sobbed into the hospital gown.

Twenty-twenty-twenty four hours to go, I wanna be sedated, Nothin' to do and no where to go-o-oh I wanna be sedated.

"Hi, Raul. I'll be operating on you today." A tall guy with goggles and a mask told me.

"Let's get him up on the table."

The table was hard, cold and uncomfortable. It hurt my back.

"All right, we're starting the anesth..." was the last thing I heard before slipping into unconsciousness.

To Be Continued...

Hope Dealers

"There's this old man. He lives in the Sierra's. My friend told me he's seen him cure cancer. He's in Tijuana. There's a humongous line to see him, but my friend said he can get you and your brother in to see him."

"No," I shook my head.

"But he doesn't charge. He doesn't ask for anything. You don't even have to drink any medicine."

I shot him a skeptical look.

"He just looks at you and tells you whether or not he can help you. If he can, he uses some plants or some such shit. My friend told me he told a guy to hunt a deer and then bring it to an altar and offer it as a sacrifice to God. Three days later, he was all better."

"No," I repeated.

"Come on. If there's even a remote possibility that he'll make you even a little bit better... It's worth a shot. This guy is a fucking wizard. Deeply religious. Claims that God helps him. My friend says he's seen him do some crazy shit. What do you have to lose?"

I looked at him. Mostly his eyes. There was hint of desperation and sadness in them. The kind you get when you feel helpless. You watch your son's struggle everyday with basic tasks. Breathing, eating, getting around. I can't imagine going through that as a father. It must be a horrible feeling. Feeling as though there's something wrong with you or that you did something wrong. In many ways, I think, he hurts more than me.

* * *

One of my earliest memories is of my dad holding me up, helping me walk. We would have living room soccer matches between us and my baby brother. He literally held me up for half an hour helping me kick the ball around. It was like a life-size version of foosball.

He took it the hardest in my family when I was diagnosed. After that, he often came home drunk from work. Never angry. He was a calm drunk. Even as a kid I knew he was trying to numb some part of himself. Maybe if he drank enough he wouldn't hurt anymore. This didn't sit right with my mom. She yelled at him a lot. There were shouting matches, mostly one-sided. "LOOK AT YOUR FATHER!" she'd say in between sobs. "LOOK AT HIM, HE'S DRUNK!" I'd look at him to confirm that he was, indeed, drunk. I knew because of his glazed over eyes. I never responded in these situations. I didn't want to take sides.

They started taking me to doctor after doctor, always wanting a second opinion. We drove to LA from San Diego to see the leading MD specialists. "Nothing I can do," he said. They eventually gave up on finding a cure via western medicine and looked towards more alternative, shadier methods.

There was a guy in Mexico City who claimed he could cure me with magnets. Something about my positive and negative energy. He laid me on a table in my tighty-whities and covered me in magnets. When I didn't get up, my parents yelled at him and carried me away, but they did pay him.

Another guy claimed he could cure me by injecting me with sheep cells. My dad took me by himself this time. It was in a seedy little town in Mexico across the border from Yuma, AZ. I remember the pain from the injection was horrible. "Don't be such a baby," the doctor told me. My dad thanked him and we drove home.

A Chinese guy in the Tijuana ghetto. He was recommended by the mom of this kid with Duchenne's I went to school with. "We're seeing results," she told my mom. I laid on a table while he stretched my limbs as far as they could go. I screamed and cried and pleaded with my mom to make him stop. She didn't. "It'll make you better," she insisted. The guy then put candles all over my body, lit them and then extinguished them by putting an empty Gerber bottle over them, creating a vacuum over my skin. When he was done my skin was covered in red circles and my whole body ached. He gave me this brown ball that looked like processed feces and made me eat it. It was foulest thing I ever tasted. "I'm sorry, baby. I promise we won't come back."

The list goes on and on. It's filled with malicious people looking to prey on people like my parents. It's fucking disgusting. Fuck these people. They deserve to burn in hell.

Eventually my parents divorced. They never told me, but I suspect the strain of our disabilities had a large part in it.

* * *

"Okay" I sighed.

His face lit up and he started telling me all the things his friend had seen this guy do.

At least this guy was only crazy and had good intentions, I rationalized, against my better judgement. Mostly, I think it would've hurt him more if I had said no. And, although I'll never admit it, I still have that faint glimmer of hope that, just maybe, one of these times, it'll work.

Nothing ever came of it. We never went to see the guy and he only brought it up once or twice more. I think the guy must have refused to see me or said he couldn't help me. Still, I'm pretty sure he'll find another wack-job claiming he can cure me by talking to God. For a small fee, of course.

Heredity

(Quick reminder: Feel free to submit questions via the contact page on the right hand side of your screen.)

Q. I've read that MD is a hereditary disease. Does it run in your family?

A. As far as I can tell, me and my younger brother are the only people in my immediate family who have it. When we were first diagnosed, the doctors made my parents go through their family trees. They only found a great great great aunt (or cousin, I'm not sure) who used a wheelchair. Since MD is recessive, I think it lay dormant until the stork combined my parents' genes. (I refuse to believe they had sex.)

Birds of a Feather

Q. Do you normally roll (no pun intended) with other handicapped/wheelchair kids, or with normal kids?

A. 99.99% of the time I hang out with normal kids.

There was this one kid in my old elementary school in Tijuana, we were in the same grade, same class even. He also had Duchenne MD. What are the odds? Two Duchenne MD kids in the same class? Especially in TJ, where health care blows.

We ran in the same circle, but never really got along. At the time, he could still walk but you could see the disease progressing. He stumbled a lot, had trouble getting up, and moved like a penguin. They were the exact same symptoms I had when I was a baby.

He always ripped on me for some reason. I think it was jealousy. I got better grades, I was cuter and, to be honest, friendlier. Not that he wasn't exactly friendly; he was just bitter. You know what, though? I think the real reason he was jealous was because, since I was in a chair, people sympathized with me more than him. I guess the chair is more socially acceptable than walking funny.