1. Note, on the article, the ways the writer tries to affect the reader.
Steve Gleason on his
life with ALS, mission
for a cure
2. Fill in the guided reading sheet.
3. Write a one-page reflection.
by Steve Gleason
Typing with your fingers or
thumbs is sooooo 2012.
I tweeted that earlier in the year. I
type with my eyes. Not only that, I
navigate my computer, create and
play music, keep a calendar,
conference call, lead web X meetings,
text and, obviously, tweet with my
eyes.
Crazy, right? Actually, not as crazy as
you may think. Cell phones, tablets,
TVs and computers are all beginning
to incorporate "eye tracking"
technology. Someday soon we will all
navigate computers with our eyes.
When that day comes, remember you
saw it here first. Keeping this
perspective helps me think of myself
less as disabled and more as a
trendsetter.
I also have automation in my house
that allows me to open doors, turn on
lights, open blinds, change the
thermostat and turn on TVs. I do my
best to try to think of myself as superabled, rather than disabled. About the
only things I cannot control in the
house are my son, Rivers, and my
wife, Michel. She is fierce like a bolt of
lightning, and he takes after her.
So, how does this technology work?
I have a tablet PC attached to my
power wheelchair. This tablet, my
command center, sits about 18 inches
from my face. At the base of my
tablet, I have a black bar that houses
infrared cameras that track my pupils.
From there, I have a toolbar on the
right side of my tablet screen that has
mouse commands: left click, right
click, double click, etc. So, I look at
my on-screen commands for half a
second, and those commands select.
Then I look wherever I want to click
on screen. For example, if I want to
minimize my Spotify application, I look
at the "left click" command, then gaze
at the app's minimize button. If I want
to read today's MMQB column, I
select the scroll button from my onscreen commands, then gaze at an
area in the column. The technology
senses where my eyes are as I read,
and automatically scrolls down the
page accordingly.
Sweet, right?!
It works the same way with my
keyboard. This is how I speak: I type
whatever nonsense comes to mind,
click "speak," and a synthetic voice
that sounds hauntingly like my old
voice belts out the nonsense for all to
hear.
I can crank out about 20 words per
minute. For 4,500 words, that's
almost four hours to finish this
column.
***
“As a result, every 90
minutes people die. I
am a person.”
I have been diagnosed with
Amyotrophic Lateral Sclerosis
(ALS).
It's a terminal disease with an
average lifespan of two to five years
post-diagnosis, and scientists don't
know what causes it. ALS prevents
your brain from talking to your
muscles. As a result, muscles die. As
a result, every 90 minutes people die.
I am a person.
ALS does not affect cognitive
process. Stephen Hawking, one of
smartest people on the planet, has
ALS. It rarely affects the eyes. It
doesn't affect senses like hearing,
taste and touch. I cannot move them,
but I can feel, and very much enjoy
when you take my hands in yours.
No, you do not have to yell, or use
one syllable words. I can hear you,
and I have above average
intelligence. Still.
I think we will find a cure only when
the world clearly understands what
ALS does and how to help. This real
life example may help you understand
ALS.
For those reading at home,
experiment in real time. Grab some
dental floss and an old sleeping bag.
Unroll the sleeping bag and get all the
way in. Head first. Now try to floss
your teeth, struggling to move in that
restricted space. Did you feel a sense
of panic, or frustration, like the more
effort you gave the harder things got?
Were you short of breath? These are
all very real phenomena for ALS
patients.
So, how does a person react when he
or she learns there are two to five
years left with which to live?
Denial. Frustration. Anger. Despair.
But at some point, I understood that
acceptance of this diagnosis was not
admitting defeat. That was critical for
me personally. I think our lives are
enriched when our own death is a
conscious thought. I am not saying
we should obsess over this, but it can
be useful, because it makes you
focus on the things and people you
truly love. After that realization, I
started to dig in, to look forward to
what might be in my future.
Because ALS research is
underfunded and under-resourced,
patients end up fading away quietly. I
did not want to fade away quietly.
Then I noticed something unique
about a handful of ALS patients. They
were living beyond the two-to-fiveyear estimate. A small fraction of ALS
patients progress very slowly. These
people went beyond that. They were
choosing to go on ventilators, and
continue with life. Years. Decades! I
was shocked.
These people were not fading quickly
or quietly.
I realized these patients had three
crucial elements to help them: the
right support, the right technology and
purpose. They had things they were
so passionate about, they were willing
to go on a ventilator to continue to
pursue them. A perfect example is
O.J. Brigance, Director of Player
Development for the Ravens. O.J.,
who has become a mentor to me, is
not dying from ALS. He is choosing to
live with ALS.
After my diagnosis, I was determined
to gather the right support, the right
technology and continue living a
purposeful life. For decades, despite
the progression of the disease.
Michel and I made some decisions.
We were passionate about having a
child. And so Rivers was born in
October 2011. Ten months after my
diagnosis. I was a few months from
completing my MBA at Tulane
University. I was passionate about the
courses, and made some friends for
life during my time there. I chose to
finish. I love adventure travel. So,
Michel and I bought a sports mobile
(think of a camper van on steroids)
we nicknamed the Ironhorse,
and drove from New Orleans to
Alaska and back. I thought I could
help other people live with ALS, so we
started a non-profit dedicated to that.
I am well into the disease
progression. I am unable to walk, talk
or eat. In some ways, this stage of the
process is less frustrating than
previous stages. I often feel normal. I
forget that it's weird to eat through a
tube or be in a wheelchair. Still, I can't
deny that it's a struggle. In the words
of Peter King, "This blows."
I sit somewhere on the razor's edge. I
am so happy to hear my son say, I
love you dadu. So happy I want to
explode. But I also have fleeting, but
agonizing moments of frustration as I
watch my friends throw him giggling in
the air. I just want so badly to hug him
like I used to hug the people I love so
much, to brush his hair or hold his
hand.
The film The Diving Bell and the
Butterfly, based the book of the same
name, has a line that enlightens and
comforts me. The protagonist, who
has lost all ability to move except one
eye, discusses his role as a father. He
notes, "Even a fraction of a father is
still a father."
So we focus on creative ways to help
me interact on intimate levels with
Rivers. He sits with me every morning
when he wakes up and every night
before bed. He takes "walks" with me
in my wheelchair. We have a Spotify
playlist, and a YouTube channel. I
pre-recorded me reading books early
in my diagnosis, so we watch me read
to him. He is learning sign language,
and we watch live music videos. He
now gives me high fives and helps me
shower.
***
Football and ALS.
Current research shows that NFL
players are more likely to have certain
brain diseases. Additional research
shows there have been 27 players
diagnosed with ALS in the past 60
years. But it's important to note that
more than 27 ALS patients, none of
whom have ever played football, will
die in the next two days. For me, this
disease is global. It affects any race,
gender or walk of life.
But if football did, somehow, cause
my ALS, what does that mean for my
life?
As humans, we are able to conjure
and attach meaning to almost any
circumstance or development. When
handed what feels like a terminal
diagnosis, it's human nature to
ask, Why did this happen to
me?! or What does this mean?!
The question What caused this? can
usually be analyzed and measured
precisely. (Scientists are still working
on defining the cause of ALS, and I
am not sure if football caused my
ALS.) On the other hand, interpreting
meaning is, in my opinion, quite
ambiguous. We cannot measure,
verify or confirm meaning. We, as
humans, create and apply meaning.
When something happens to us, we
become the author of meaning. The
best philosophy I have adopted is to
apply a useful and productive
meaning, rather than a negative or
destructive meaning, regardless of
the circumstances in my life.
So, I have conjured my own meaning
from my circumstance, if in fact
football did cause my ALS. It means
to me that I gave my life helping a city
and a region in ruins find some
hope in their struggle for rebirth. I will
never regret that.
Name: __________________________________ “Steve Gleason on his life with ALS…”
Date: __________
Note to Student: It is always good to practice your pre-reading strategies before reading something new. Use this sheet to
help you organize your thoughts about this week’s Article of the Week.
Before Reading
Step 1: Preview the reading. Look at the title(s), bold-faced words, pictures, headings, etc.
Step 2: Make a prediction on what the reading is going to beStep 3: Activate your prior knowledge. Jot down some
about. Write your prediction below. Be specific!
things you might know about the topic and/or related topics.
Write your ideas below.
I predict the article is going to be about…
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Step 4: Know the author’s purpose for writing and your purpose for reading. Think about the ideas we discussed in
class/look at your notes!
The author’s purpose for writing this article was to…
The writer wants the reader to…
Word-A-Day: write the word and identify its part of speech and definition/synonym using only context clues (no Googling).
10/20:__________________________________________________________________________________________
10/21: __________________________________________________________________________________________
10/22: __________________________________________________________________________________________
10/23: __________________________________________________________________________________________
During Reading (Think about what you are reading as you read!)
What does the writer do to create a lighthearted mood in the beginning of the article?______________________________
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What would Steve Gleason’s advice be to someone diagnosed with ALS?_______________________________________
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After Reading (Critical Thinking Response)
What do you think Steve Gleason’s overall attitude toward his condition is? Support your opinion with evidence from the
article.
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