-♦
I knew, as soon as I found out my
brother had AIDS, I’d never be
the same. Nobody will ever
understand what I’m going
through unless they’ve been
there, and I hope no one — none
of my friends — ever has to go
through what I’ve gone through.
— Todd Sukstorf, brother of man with AIDS
-
When AIDS
hits, family
suffers, too
Al Schaben/DN
Todd Sukstorf holds a picture of his brother. Eric Jazmen. Eric, who has AIDS and AIDS
dementia complex, produced a video called “I still Am... Dementia: A New Understand
ing." Todd uses the video in presentations around Lincoln to educate people about the
diseases.
I IM_ m* -
Ai Schaben/DN
Todd holds a photo of him and his brother Eric taken in front of Eric’s apartment in San Francisco.
Brother’s disease inspires LincoLnite to begin educating others about affliction
By Chris Burchard
You might have met Todd Sukstorf
if you ve gone for a drink or to
catch a blues band at the Zoo,
where he tends bar at night, or if
you’ve eaten lunch at Inn Harms Way,
where he waits tables during the day. If
you have, you know the 31-year-old Lin
colnite lives on positive energy.
“When people are around me, if they’re
down, I’ll usually get them up after a
while and make them comfortable,” he
said. “I enjoy life and I enjoy being a
happy person.”
He’s so laid back and fun-loving that
it’s hard to imagine, after being around
him for any length of time, that AIDS is
slowly grinding his brother’s life away.
Tne phone call from his mother in
October 1988 irreversibly changed
Todd’s life, he said.
“I knew, as soon as I found out
my brother had AIDS, I’d never be the
same. Nobody will ever understand what
I’m going through unless they’ve been
I there, and I hope no
one — none of my
friends — ever has to
go through what I’ve
gone through.”
Todd and his brother
Eric grew up in Fre
mont, where they lived
with their parents for
much of their lives. They were close, Todd
explained, but they had different inter
ests.
“We did some things together, but he
was more into the art thing and I was
more into just hanging out, he said.
Todd also was more athletic, playing
football through high school and into
college.
Fifteen years ago, Eric went his own
direction, taking his artistic talent to San
Francisco, where he still lives. He even
tually found success, arranging display
windows for two department stores, while
designing and selling his own line of
jewelry and clothes.
He changed his last name to Jazmen to
sell his wares.
Todd moved to Lincoln in 1982. Since
then he’s bounced back and forth be
tween Lincoln and Fremont, where his
mother still lives.
Their parents are divorced and his
father now lives in Omaha.
“We’re not a close-knit family,” he said.
‘We never have been. But this has brought
us all closer together.”
Learning that Eric had AIDS was hard
on his parents, he said.
“My mom was . . . like a lot of people
and parents who didn’t like to say their
son or daughter had AIDS,” he said. His
mother even told him to tell others that
Eric had leukemia.
“I said, ‘No, I will not do that. I love my
brother and I’m proud of my brother. My
brother has AIDS.”*
When people are sick or terminally ill,
Todd said, they need all the support they
can get.
“And I’ll be damned if I wasn’t going to
be there for my brother.”
His mother and father have come to
support Eric, too, he said, but it took time.
“My mom was always crying like he
was dead. I’d say ‘Mom, he's still alive.
We could die before he does.”*
Todd said she used to go out to San
Francisco to visit Eric, but she’d just cry
all the time there, too.
“My brother couldn’t handle that, and
it wasn’t good for her. It was a waste of a
trip.”
Todd said he has mediated the prob
lems and differences between his family
members to keep the lines of communica
tion open.
“I’m the foundation that supports the
family,” he said.
And he’s been lucky in that others
have always been there to support him,
he said.
“My friends, the people I’ve known,
have never backed down. That’s how you
find out who your friends are: If tney
•j
won’t associate with you now, they were
n’t your friends to begin with.”
That support helped him through
the shock of learning that his
brother had AIDS, he said. And
something else helped, too. He
had prepared himself for news of termi
nal illness or death in the family long
before his brother contracted the disease.
“I’ve been doing that since I was a kid,
because I’ve seen people’s lives ruined (by
death),” he said.
Todd’s 19-year-old cousin had a sud
den aneurysm shortly after she left Todd’s
family’s house with her newborn baby.
She fell through a plate glass window and
died.
Todd said his aunt has suffered greatly
from that and still has not recovered
completely.
When Todd was 20, one of his friends
committed suicide. The man’s mother
was severely hurt and never will be the
same, he said. He decided never to let
that happen to himself.
“I prepared myself for death so it
wouldn’t ruin me.”
While Todd said news of his brother’s
condition was painful to bear, it would
have been much worse if he hadn’t been
prepared for a family tragedy.
But nothing could have prepared him
for the news that his brother’s condition
would include dementia, he said. Like
hundreds of thousands of AIDS patients,
Eric was diagnosed with ADC, or AIDS
Dementia Complex.
“It’s like Alzheimer’s,” Todd said.
“Alzheimer’s is a form of dementia; this is
AIDS dementia.”
It is a state of confusion, he explained,
in which those affected often have trouble
reading, speaking quickly, constructing
sentences and retaining information.
Once, after Eric’s friend helped him
with his grocery shopping they brought
the food home and, Eric thought, put it
away. Later in the day Eric was hungry
and decided to make dinner but couldn't
find any of the groceries. He searched his
kitchen and his entire apartment before
finding it all on the stove, in pans and
skillets. He had sauteed the chicken and
steamed the vegetables hours before.
In another incident, Todd said, his
brother went on a shopping spree.
“He just got out a piece of plastic . ..
and started spending, spending^ spend
ing. And he had to take the stuff back.”
But there are darker sides to ADC,
Todd said.
“It^ will act up a lot of times when
there’s stress. And when you or I, or when
healthy people get angry or frustrated,
they hit a wall.
With dementia, he said, it’s different.
“At one time Eric started hitting him
self, and he didn’t stop. He drew blood. It
wasn’t because he was crazy, it was just
stress.”
People don’t understand demen
tia, Todd said. Even medical pro
fessionals misunderstand it some
times. Once, after Eric stayed up
with a dying friend for more that two
days, the stress and fatigue caused his
virus to act up. He went to San Francisco
General Hospital to get help.
“As soon as he said he had AIDS de
mentia, they strapped him down in the
psychiatric ward. They had him strapped
down for 20 hours,” Todd said. Not until
a nurse familiar with Eric’s case found
him was he released.
That type of stuff makes me angry,
very angry, when you mistreat people
like that.
It is that type of ignorance that prompted
Eric to make a video tape about ADC. The
80-minute video, entitled “I Still Am ...
Dementia: A New Understanding,” is a
presentation in three sections, two of
which are interviews with Eric. The middle
section is a panel discussion concerning
Azl and other drugs, which may curb
dementia’s effects.
In the interviews, Eric looks fine. TYiat’s
strange for a person who has had AIDS
for more than three years, Todd said. He
responds to questions in his slow, halting
speech, often having to close his eyes to
concentrate on forming words and sen
tences. He describes what it’s like to have
dementia — what it’s like to wake up one
day and not be able to recognize printed
English. What it’s like to constantly for
get things and the confusion that causes.
What it’s like not to recognize friends he’s
known for years.
And although those things are inher
ently depressing, he discusses them openly
and with humor, smiling though it seems
to pain him to do so.
Todd does his part, too. He said when
he first learned that Eric had AIDS, he
decided he was going to learn about the
disease and do what he could to help.
That help comes in the form of what he
calls the “I Still Am Project,” in which he
takes his brother’s video, along with some
messages of his own, to area schools,
hospitals and organizations.
“What my brother and I do wjth AIDS
is the humanizing of the issue,” he said.
Increasing awareness of AIDS and AIDS
dementia is his goal.
There is only one problem: People aren’t
interested. '
“I found out how people, how our gov
ernment, how agencies and medical people,
don’t care about this issue,” he said. In
stead of giving his presentation a chance,
they turn him away.
“I’m not bad-mouthing them, it’s just
that here’s a person who offers their free
time, who knows a lotof what’sgoing on,”
he said. “I happen to know a lot about
dementia. It’s on-the-job training.”
Eric even sent a letter to Barbara Bush
requesting her help with the project, which
she denied, and a packet of material to
Oprah Winfrey, who returned everything,
Todd said.
It becomes frustrating when the proj
ect won’t take off or people won t
take the time to listen, Todd said, yet
those are just some of the things that
weigh on him daily.
“There’s a lot of pressure on me,” he
said. It’s taxing just to listen to his brother’s
problems, such as when he has bad doc
tors or when people say they’ll help him
only to ignore or forget about him later.
Worrying whether Eric was even alive
also used to plague his thoughts, he said,
and that was a load to carry.
“A couple years ago I used to be scared
to come home because he was having
some tough times,” he said. “I’d get scared
to see the light flashing on my answering
machine, thinking it would be a message
from the hospital that he was dead.”
Todd said it was about then that the
frustrations and worries, as well as all
the time spent on the project, began to
take their toll.
“It’s a day-to-day struggle, and I don’t
really have anybody to dump that on. It
becomes hard when you have to find
ways to release that, and if you don’t — if
you let your guard down — you’re going
to have happen to you what happened to
me.”
Todd described an incident in which
he finally “cracked” under the pressure.
“One Saturday I was walking home
from work and something just left me —
the emotions just left me. I didn’t know
whether to cry ... or just sit there — I
didn’t know what to do. I just walked
around being depressed for a long, long
time.”
Since then, he said, “I haven’t cried in
close to two years. That emotion is gone.”
Anger, he said, remained.
“I was lucky a few times at work I
didn’t go pick a fight.”
He saia his co-workers at the Zoo had
to hold him back sometimes when cus
tomers got out of hand. If he would have
grabbed someone when he was in that
state of mind, he said, it would have
taken a lot to pry him off.
“I was looking for a way to vent my
frustration.”
Eventually, Todd said, he decided to
see a psychologist.
“I knew I needed help. Things were too
tough for me — I wasn t myself and I got
tired of going through life not being happy.”
Unfortunately, the first psychologist
he went to was horrible, he said.
“She started telling me some of her
EroDiems. l was like, l man t come here to
ear this shit.’ And then she brought in
this lady whose husband and brother-in
law were HlV-(positive). This lady was a
nervous wreck! She was bringing me
down really bad. And she was angry, too,
really angry. I couldn’t wait to get the hell
out of there.”
On his second try, Todd said, he found
a psychologist who actually helped him.
He was glad he went, and he returns
when he thinks he needs it or just wants
to “spill.”
For whatever reason, be it the psy
chologist, some inner drive or realiza
tion, or a combination of the two, Todd
began to surface from his depression.
Tm finally getting back to the way I
used to be before all this,” he said. “I was
happy everyday, nothing got me down.
And tor a while there, the child in me, the
little kid in me, left. And that’s what
drives me.
“It would have been a hell ofa loteasier
. . . just to sit in my apartment and be
bummed out, day in and day out. But
that’s where the work comes in. You’ve
got to dig deep down and say, ‘Hey, I’m
not going to be this way. I’m going to get
out — I still have a life to live, myself’”
He said he’d learned from his mis
takes, and found that he couldn’t let
himself become so immersed in his
brother’s illness or the project that it
interfered with his life.
“I’ve learned to protect myself — how
to keep my guard up,” he said. “Once you
let your guard down you’re openingyour
selt up to a lot of problems.
Now he tells himself, “Don’t worry
about those things. That’s the way it’s
going to be, don’t take it so seriously. Just
go back to the way you were: a carefree,
happy-go-lucky person.”
With that outlook, he’s continuing the
project in a more relaxed manner, he
said, without getting “all out-of-whack”
when people won’t listen.
Thankfully, he said, some people fi
nally are. Hes set up a number of speak
ing engagements recently, including one
at Millard inonn tiign acnooi planned tor
the middle of April.
“That helps a lot — when I go and
speak. That’s my therapy. Just to know
people are glad that someone came to talk
to them — that’s a big plus. That’s what
it’s all about.”
While Todd may have reclaimed
his positive outlook on life,
something still lurks behind
his thoughts. One night he will
have to come home to that message on his
answering machine.
“I know he’ll never get better,” he said.
“I mean, he could die right now; you don’t
know when, so I don’t think about it. You
can worry all you want, but it’s not going
to extend your life or his life.”
Todd said he was fortunate his brother
had lived so long — more than three
years since he was diagnosed with AIDS.
The average life span after diagnosis is,
he said, 17 to 19 months.
“As each Christmas goes by you expect
it to be the last, and each visit out there
I’d expect to be the last,” he said. “You get
in the van to go to the airport, and through
the window you wonder if that will be the
last wave you ever get.”
But Todd’s been preparing himself
lately, he said.
“Everything dies. There’s two things
we’re guaranteed i n life. One is that we’re
here — we’re born. The other is we die.
“Sure, you’re scared and you don’t want
anyone to go. But I believe in an afterlife.
I believe in God.”
He and his brother have discussed
death, he said, and it’s helped both of
them deal with the inevitable better.
“When you know somebody who has
something like AIDS or cancer . . . they
and you know they’re going to die, so you
can talk about things.lf I found out right
now my brother’s dead, I wouldn’t have
any regrets, because we’ve said how much
we care about each other.
“I’m going to be sad, and that might be
the time I’m finally able to cry, but it A
will be a relief,”he said with a smile.
“A very big relief.”