Show
of strength
Doctors
told Steve Smith he was dying of ALS. He is now convinced that is not true.
York Daily Record (Sunday
Edition)
York, PA
by Frank Bodani
11 July 2004
The woman cut up the
pork chops and broccoli into small pieces.
Slowly, ever so patiently,
she fed them to the man sitting next to her.
Her husband. The father
of her son and daughter.
The former Penn State
football star. The former NFL fullback.
Steve Smith won’t
turn 40 until the end of summer — and yet he cannot move his arms and
hands to feed himself.
It’s been two
years since the captain of one of the greatest Nittany Lion teams was diagnosed
with amyotrophic lateral sclerosis — Lou Gehrig’s disease. Two
years since he was given a death sentence. One year since he was given new
hope.
“Hel-lo . . .
this is Ste-ven Smith. Please . . . call . . . me . . . back.”
The words on the phone
answering message were slow. Halting. Awkward, uncomfortable breaks between
phrases. Concentration needed for each word. No inflection. But Smith pushes
on, despite the muscles that have withered away in his arms, shoulders and
in his throat. Two years ago, he was diagnosed with ALS.
“I think for
. . . the first week . . . I was ve-ry scared,” Smith said. “I
knew . . . that Lou Geh-rig had died . . . two years after he was di-ag-nosed,
and that scared me. I think my . . . body pro-bably . . . de-ter-iorated
. . . more in that first week . . . than in a year.
“The things you
love . . . the most . . . seem to be slip-ping a-way from you . . . and
there’s no-thing you can do.” He needs help standing and walking,
combing his hair and brushing his teeth and using the bathroom.
And to think he was
a member of the only two national championship football teams in Penn State
history. He was one of the captains of the 1986 team that stunned Miami.
He was drafted in the third round by the Los Angeles Raiders. He was the
guy they called “Tank” in high school and “Rhino” in
the NFL because of the way he ran over defenders. He did the dirty work,
blocking for stars like Marcus Allen and Eric Dickerson, Bo Jackson and
Roger Craig.
Now, he is fighting
death with day-long doses of pills, oils and intravenous medicines. And
yet, it doesn’t seem to matter that his wife helps him out of a wheelchair
and feeds him every meal and holds a cup to his mouth so he can sip from
a straw. Steve Smith always seems to smile the widest smiles.
Steve and his wife,
Chie (ChEE-AY) Smith, were supposed to be starting their lives over. It
was the spring of 2002 and they had just moved from Georgia to the Dallas
suburb of Plano. Steve Smith had a new job, leaving behind his car wash
business to take over a sub franchise. Their two kids were growing up.
It was during games
of tennis, when he noticed his legs feeling heavy for no reason. He noticed
a twitch in his neck. He figured it had to be football battle scars. You
don’t play fullback for nine years in the NFL without having some kind
of lasting pain
He decided to get
checked by doctors, and then neurologists, when his legs continued to weaken.
There were MRIs, brain scans and spinal taps. Then, shockingly, his world
crumbled: he received an ALS diagnosis, then another.
Steve’s parents,
Norma and Morris Smith, traveled from their home in Myrtle Beach, SC, to
hear the news. Three times doctors told him the same thing. The last diagnosis
came on September 11, 2002; the horrible anniversary and those horrible
words crashing down together.
“Thank God for
the kids,” Chie Smith said. “They can even take your mind off
of the worst things.”
More than 5,000 Americans
each year are diagnosed with ALS, which destroys specialized nerve cells
called motor neurons. Life expectancy is usually 2 to 5 years. Steve Smith
seemed to be following the same awful path so familiar to ALS patients:
a body steadily wasting away until the ability to move, swallow and breathe
vanish—with a perfectly clear mind tortured through it all.
It didn’t take
long before the muscles in his hands deteriorated to the point where he
could not grasp the dimes and quarters in his car change holder.
Hope, though, came
unexpectedly last year when Chie Smith read a People Magazine article about
a doctor in suburban Philadelphia who was making breakthroughs with ALS
patients.
Actually, many of those
patients, Dr. Greg Bach claimed, have severe, undetected cases of Lyme disease,
which has symptoms that can mirror those of ALS. Lyme disease usually is
carried by the tiny deer tick. And if Smith does have Lyme, there is hope.
The disease can be cured, even in late stages. Aggressive
antibiotic treatments miraculously seemed to rescue even some of Dr. Bach’s
most desperate, dying patients.
Smith has been visiting
Bach every month since last July for checkups and treatments. He takes up
to two dozen oral medications and is injected with other antibiotics intravenously
every day. It is somewhat of a radical medical turn. ALS doctors scoff at
Bach’s findings. And it can be difficult to accept Bach’s talk
of how tick bites can cause misdiagnosis of everything from ALS to muscular
dystrophy to road rage.
He certainly has supporters,
though. “He is taking patients who are given a dead-end diagnosis .
. . and he’s treating them and they’re making recoveries,”
said Pat Smith, head of the Lyme Disease Association, a non-profit group
based in New Jersey. “It doesn’t matter what anyone thinks about
it. Patients are getting help.”
Steven Phillips, president
of the International Lyme and Associated Diseases Society in Bethesda, MD,
takes a more cautious approach. “There is a known association between
(ALS and Lyme disease). Lyme can cause these things,” Phillips said.
He admitted, though, that most ALS patients treated for Lyme, while helped
to some degree, do not make full recoveries.
Steve Smith is convinced
he has Lyme disease. He is convinced he will recover. “So many people
have been misdiagnosed, just like Steve,” his wife said. “The
ALS doctors, they just shut the door on you. They don’t want to hear
it. It’s really disgusting. The thing that gets to me is that we lost
nine precious months.”
There have been small
signs of recovery lately. The muscle tone in his arms appears to be returning.
His weight has remained steady when most ALS patients whither away as their
muscles die. His voice, though still muddy, seems stronger.
“He’s beating
the odds,” Bach said. “It’s taken a lot of inner strength
to do this. I believe he’s going to be one of the ones who make it.
I know he is. All the time he put in (working out for football) is what
actually is saving his life.”
In June, he also started
an alternative medical treatment at the Haverford Wellness Center in Havertown.
Five days a week, two or three times each day, his blood is drawn and mixed
with amino acids and a soy-based substance, and then injected back into
his system. The idea is to give the body extra material to heal damaged
motor neuron cells. On a recent visit to Haverford, Chie Smith followed
her handwritten notes, and a doctor’s pointers, as she learned to use
the syringes. The goal is to perform the procedure at home. They chatted
and laughed a bit as they left the center. There is hope. And yet there
is still so far to go.
The wife held her husband’s
hands. The petite, 5-foot-3 woman walked backward and held both hands of
the unsteady, 250-pound man. She guided him one slow, shaky step at a time
from the waiting room of the doctor’s office to the black Chevy Blazer
rental in the parking lot. He smiled, as always, as he walked wearing a
gray Penn State football T-shirt, green shorts and white sneakers with Velcro
ties instead of laces. His arms twitched from constant muscle spasms.
“One, two, three.
I gotcha,” Chie said before helping to gently push Steve into the passenger’s
seat. She picked up his legs and lifted them into place. She pulled the
seat belt over him and locked it.
Chie leads the family
for now. She is an exotic-looking beauty: Japanese on her mother’s
side, Navajo and Spanish from her father. Her name means “wisdom.”
But how could she know what to do now? What to say? She was a Raiders cheerleader
when she met the NFL fullback, the one who remembered the precise pronunciation
of her name after hearing it only once.
He was from Clinton,
MD, near Washington, DC. He grew up comfortably (his father was a senior
account executive for Xerox; his mother was a budget officer for the federal
government). He grew up religiously. And he grew into a football star, first
for famous DeMatha Catholic High School and then for Penn State. Those first
years of college were difficult, testing years. He struggled through Joe
Paterno’s strict practices and called home to complain about not being
good enough. His Penn State coaches told him he wasn’t dedicating himself
like he should. But he learned.
Smith was a redshirt
freshman and a scout team member in 1982 when the Nittany Lions won their
first national title over Georgia. He started 11 times as a sophomore and
ran for 126 yards against Boston College. He started the first eight games
as a junior, scoring on a 63-yard run vs. Rutgers and catching the game-winning
touchdown against Syracuse. He was a road grader again as a senior, plowing
paths for tailbacks and catching a career-high 14 passes.
“He got so strong
and so big and thick. He was a physically intimidating player,” said
Fran Ganter, his former position coach at Penn State. “I can picture
him on the practice field with a big thing of snuff in his lip ready to
go to work. Most of the guys griped about the length of practice or how
much we were hitting. That never fazed him.” And yet Smith still didn’t
imagine NFL executives rushing after him. A no-name fullback? So he was
in the shower when the Los Angeles Raiders called during the third round
of the draft.
As it turned out,
he was almost an immediate success, scoring nine times in his second season
with the Raiders. He ran for 471 yards in his third season. He caught 28
passes in his sixth season. He was solid, tough and dependable. The typical
NFL fullback. The typical Penn State fullback.
The disease has made
things tough on everyone around Smith—yet another burden he must carry.
His wife said she cried constantly for the first two months after the diagnosis.
“There were some nights I couldn’t stop the tears,” Smith’s
father said. “It really takes all of the air out of me. I just feel
so helpless. With your children you always want to be there for them. If
they fall down, you want to be there to pick them up. I feel like he’s
going through this and I can’t reach down and pick him up.”
Somebody must always
be near to help him if he loses his balance and falls to the floor. Even
so, the Smiths still push on to restaurants and movies, Steve always insisting
on sitting in a regular chair.
At first, he didn’t
want anyone to know about his situation. But his wife finally decided to
tell his closest friends. Bruce Wilkerson, a former offensive lineman with
the Raiders, called and cheered him up. Then David Clark called, his former
teammate and roommate at Penn State. Then Joe Paterno.
It got Smith thinking
back to Penn State again, like that time during his second year in State
College when he was called into the coach’s office. Paterno told him,
“‘Some guys you pat on the back and other guys you have to kick
in the butt.’ And he said . . . I . . . was a kick-in-the-butt . .
. type of guy. He . . . was right,” Smith said. “I . . . love
. . . Joe. At Penn State . . . you don’t like him . . . very much.
He’s ve-ry hard on you. You call him names un-der your breath. But
. . . when you’re out in the real world . . . that’s when you
real-ly ap-prec-iate Joe. That’s when . . . going to Penn State . .
. star-ted to make sense.”
His days begin simply.
Slowly, he walks down the hallway of his Texas home to build strength and
balance. He does stretching exercises, even finger exercises.
His mother prays and
reads the Bible with him. She massages his hands. He still goofs around
with his kids: Dante, 14, and Jazmin, 12.
“The har-dest
thing for me is not . . . being the hus-band and father I’ve been be-fore
. . . but I know this is . . . a . . . temp-o-rary situation.”
His wife is always
there to help. His former teammates are there, too. A Raiders’ fund-raiser
led by Marcus Allen will help pay his medical bills, which run more than
$6,000 a month. And that doesn’t include the monthly transportation
costs from Texas to Pennsylvania. Even the specialized test to determine
that he had Lyme disease cost $800 to $1,000. Fortunately, it seems as if
someone is always there.
Bob Campbell, an uncle
who lives in Los Angeles, helped start the Steve Smith Foundation. He led
those Raider teammates to hold a small golf tournament and raise about $15,000.
Campbell said ex-Raider and TV pitchman Howie Long has agreed to work the
tournament next year, maybe moving it to Las Vegas, almost certainly making
it a major fund-raiser. Another golf fund-raiser is planned for Annapolis,
MD, in October.
“I’ve tried
to imagine being in his position. I don’t know if I could be that tough,”
said Wilkerson, the former teammate. “To go from thinking you’re
invincible to fighting something that’s the damnedest thing to beat,
and you don’t know how . . . .”
Smith chooses to focus
on the positive. He has his three dogs and two cats, including his prized
pit bull, Shaq. And he knows it could be worse. He doesn’t have to
be rolled over in bed in the middle of the night like a friend of his diagnosed
with ALS. So while Smith’s goals are simple, they also are powerful,
sometimes appearing to be unreachable.
Yet he smiles. He keeps
reaching. He wants to come back to Beaver Stadium. He hasn’t been there
in three years, since the 1986 championship team held a reunion. He wants
to move back to Maryland soon with his wife and kids to be closer to his
doctors and parents. He wants to live the life he once knew.
“I will play
basketball again with my son. “I believe . . . I will be a-ble to do
a lot more . . . every-thing I did before . . . and a lot more. We will
all die from some-thing . . . but I will not die from this. “I will
fight and over-come this.”
Reach Frank Bodani
at (717) 771-2104 or fbodani@ydr.com.
For more news
visit ydr.com.
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