Remembering...
Though he is old enough to walk, I
lift him to rest on my hip so I can feel his spindly legs around me. His limbs are so thin, and I like how tight
they can wrap around my waist. His arms
circle my neck so that his cheek has to rest against mine; his tan skin is so
smooth. My wet ponytail drips on his
wrist. Once we both have a good grip we
begin our descent downstairs. When the
summer days get too long or too hot we head here – to our universe. The lack of windows and the presence of artificial
light make this place feel magical - or at least out of the realm of normal
space and time. My mom has taken special
care to build this place for us, and we can escape for hours to play
contentedly. The cement walls and floors
have been painted what I think is called gunmetal blue. We head to the square of carpet to the right
of the stairs and I place him on his seat.
This carpet marks my place. One
wall it touches is lined with my Holly Hobbie kitchen and the other my dry erase
board. Jason, my older brother, owns the
other side filled with Rambo and He-Man toys.
He used to run around like he was Indiana Jones, and when he got hungry,
he would stop off at my kitchen for dinner, but Jason is ten now and spends
most days with the other neighborhood boys.
I think for a minute how lucky I am to be in the middle so I can touch
both of them. Jason, Danielle and
Jon. We are linked like a chain. But this summer, it is Jon and I who fill the
space between swimming and dinner in the calm, cool of this basement. Always a pleaser, he lets me pick again. We play school, of course, and I can only
think to show him the math I have just been taught. So at four he laughs while learning his times
tables and some division. He runs to the
dry erase board, scribbles the answer almost without thinking, and turns to
flash his characteristic smile. I am
proud of how smart he is and take the credit.
********
The first thing I notice is the smell. I have been in several hospitals over the
last three years, but none have smelled like this. It can hardly be described. The best I can do is say it smells new, fake
and like plastic – maybe like when you open a new inner-tube though this time
no joy accompanies this scent.
Sometimes, in between visits, I catch a whiff of this thing in the air,
and I wonder where it comes from. Can
the nose recreate a sensation like eyes can envision a memory? When I am teaching, and find peace for a
moment, the smell will come again, and my heart is back in the ICU waiting for
visiting hours so my body can join.
There is much plastic in this room,
and it is constantly new, all to fight infection, one of several things that
threaten his life. Synthetic skin covers
his legs and back, sections of his arm and face. Two plastic bags hang between his legs
because his body cannot handle the simplest of functions. I wash my hands, put on plastic gloves, and
wrap a yellow, also plastic, gown around the front of my body. It ties at the neck. A new gown for every visitor, each time they
go in, and the nurses say they have had a lot more wash to do since Jon came to
stay.
The next thing I notice is the
noise. A million machines beep and
signal to the nurses that my little brother needs their attention. Our first week here I have not yet learned
what all the sounds mean and can be easily alarmed by something as simple as
bottle of liquid in his feeding tube needing to be changed. I learn to check the machines before I really
look at him. To the right of his bed is
the respirator. It measures every breath
he is given. One pause in the normal
pattern they have created for him and the machine will ring out like a game in
an arcade. The rooms that surround him
send out the same tune, and they come together to form some sort of sick
symphony. No rooms seem to make as much
noise as his though, and we soon know he is in worse condition than most they
see here.
The right also holds the bottle of
food that will nourish him for many weeks.
It requires a tube that goes into his nose and through his stomach. I think of how he would just die if he knew
they were injecting him with 5,000 calories a day after all the work he did to
get thin again.
The left of the bed is a jungle of
wires and wheeled machines, each feeding him a different medicine. Above those wires is the TV screen that
delivers information to the nurses and keeps my dad awake all night. Suddenly I can know my brother’s blood oxygen
level, pulse, blood pressure and temperature every second of the day. I whip out my cell phone and start
calculating – what does 39.4 degrees Celsius mean? 103 degrees.
I am worried. Temperature is a
sign of infection. The nurses tell us he
is fine. They don’t worry until
106. Calm down, they say. It isn’t my job to watch the machines. Just visit with him.
The temperature in the room is
overwhelming. A heat lamp lies above his
bed because the loss of skin on 66% of his body keeps him from regulating his
own temperature. He sweats and then he
shivers. They wrap him in cool blankets
and then lower the heat lamp, back and forth, trying to find the perfect
balance.
I walk close to him. His eyes are sealed shut with yellow
salve. He is wrapped almost head to toe
like a mummy. But it’s him. His breathing sounds like it did when we used
to fall asleep together in my bed. If I
didn’t stop him he would keep me up all night, so I would always promise him a
quarter if he could make it to the morning without talking before I did. I lean down close to him to whisper.
Guess what Jon. You’re winning.
********
We sit in a dark bar near campus
with antique and varied chairs. A
strange crew has joined together just before closing time, but Jon could talk
to anyone. At this point, he is sitting
near two girls I work with, flirting in his own special way. They shower him with attention, partially
because he is so charming and partially because his little brother status makes
him safe and easy. One of my friends
thinks it will be funny to read his tarot cards. We do this every so often when we have been
drinking, and we figure it’s worth a good laugh. Jon volunteers to go first. She lays the cards out by the candles on the
round tables. I have never been here
before, and there is something surreal about the lighting and eclectic crowd
that has gathered. The first and second
line of cards are typical and make sense.
Jon’s learns what he wants to do in life won’t earn him any money, and
he is going to be creatively unfulfilled – makes sense for this musician soon
to be turned engineer. Then the last
row… “I don’t even want to read these to you.
Tarot cards are stupid.”
“Aww… just tell me.”
“Okay – but really – these things are fake and people can
get really hung up on them.”
She hesitates… “This is
like the worst card you can get – it says death or destruction is coming for
you and people your age.”
“Oh… thanks a lot.
Way to brighten my day.” Jon
laughs it off as my family has been taught to do. “Who wants another beer?”
Later Jon goes off by himself to
sit at a yellow, arch backed, short chair by a tiny table with a lamp on
it. I decide to go join him.
“That kind of messed with my head.”
“Yeah – me too.”
“Maybe it’s not such a big deal – like maybe it’s just that
they’re going to start the draft again.
That would definitely suck but not on such a personal level.”
“Yeah, but you graduate in 7 weeks. You could be drafted,” I tease.
We laugh at the thought of Jon
working for President Bush. We try to
top each other with amusing possibilities for the doom he is in store for and then
we join the rest of our party at the large table. We blend in with the carefree crowd, but I
know it will take both of us a little longer to fall asleep tonight.
*********
My
parents told me he started walking, but I haven’t been able to see it yet, so I
am really excited that it’s Saturday, and I do not have to go to school. I have a friend with me, and we walk down the
hallway preparing to meet him. His
professor, Dr. WU, who shows up more often that you would expect, is gripping
onto to his 18 month old to keep him from running around. Together we wait to witness Jon’s first
steps.
We
are gathered in the hallway that is normally off limit to visitors. It connects the ICU to the rooms of torture
especially reserved for burn patients.
The end of the hallway houses the chlorine baths where Jon spends most
of his mornings. In here they slough
away his dead skin so new skin can grow through. I think the reward of learning to walk will
be bringing himself into this hell instead of being wheeled in. Heavy doors separate the patients and nurses
from the fans and spectators. A loud
swish- and the doors open automatically revealing Jon twenty yards away.
I
am not prepared for the sight. I cannot
help but think of the scene in Silence of the Lambs where Hannibal is being
transported on an upright stretcher with a mask around his face. Many people are involved to orchestrate this
walk. A nurse is needed to hold the
leather belt that has been cinched around his waist in case he falls. Another carries the portable green oxygen
tank that is attached to a breathing mask that goes over his tracheotomy. Someone else pushes the cart full of plastic
bags filling his body with morphine, fluid, antibiotics and other substances he
cannot live without. He leans his weight
on a walker. His face is so perfectly
round from the fluids that he looks unreal.
His skin is tight and smooth as though he has been inflated like a water
balloon just at capacity. Tones of green
and yellow accompanied with dark under eye circles give an aura of sickness –
and he looks wonderful.
No
one can peer into this moment and be unmoved.
One nurse yells that the professor has a baby back here, but he won’t
move. Tears fill his eyes as he yells,
“Hi Jon!” Jon shuffles ever so slowly,
and as he approaches us the nurses tell him he can stop if he wants. He shakes his head no and whispers
further. As we are inches away the
corners of his mouth begin to curl – and
slowly, ever so slowly, he begins to smile.
