by Tara Wood
Editor’s note: Some last names are being withheld
at the person’s request and in keeping with the personal
anonymity tradition of some 12-step programs.
Carla didn’t think it was unusual that she could drink
an entire bottle of wine (straight from the bottle) and still
walk around “fine.”
Kenneth didn’t notice that the core of his life was slipping
away — his home, his marriage — while he was shooting
up methamphetamine every day.
Gretchen’s “relationships” with alcohol, marijuana
and Valium so dominated her life that she once hallucinated that
cats were flying around her apartment.
Each of these three followed a predictable route to rock bottom
when drugs or alcohol took over their lives. Each also has a neuromuscular
disease.
They’re part of what some experts label a large and largely
ignored problem: people with disabilities who have a “co-existing”
disability of substance abuse.
Some startling statistics:
•There may be as many as 6.5 million Americans with both
a disability and a substance abuse problem, according to the National
Association on Alcohol, Drugs and Disability (NAADD).
•Alcohol abuse rates for people with disabilities may be
twice as high as those of the general population, reports the
Substance Abuse Resources and Disability Issues Program (SARDI)
at Wright State University in Dayton, Ohio.
The issue is further muddied by difficult or total lack of access
to appropriate substance abuse treatment for people with disabilities
(see “Facing Recovery”), and
a failure of the abuse and prevention treatment system to accommodate
this population.
Carla, Kenneth and Gretchen are now in recovery from substance
abuse. All of them believe that disability was at least a contributing
factor that led to alcohol or drugs taking over their lives.
CARLA: ‘IT NEVER OCCURRED TO ME
THERE WAS A PROBLEM.’
A family history of limb-girdle muscular dystrophy has been
the root of many emotional struggles for 40-year-old Carla, who
grew up in the South and now lives in Michigan.
Watching her father’s decline and eventual death from
the disease gave her a solid reason to drink, Carla said.
“I was not ready to give up my daddy, because I was a
daddy’s girl, big time. So that was an excuse for me a lot
to go get plastered,” said Carla, who also has LGMD and
is ambulatory.
Although, she points out, for an alcoholic, an excuse to drink
need not be so specific.
“It doesn’t take anything — it could be the
sun rising in the east that will set anybody off,” said
Carla, who has been sober for eight years. She began drinking
at 16, and it became problematic in her early 20s.
One side effect of her heavy drinking was several marriages
and relationships with men who drank as much as she or more, she
said.
“I always thought my picker was broke. You wonder where
the magnet is that attracts these people,” she said. “Well,
I was still drinking like that, so why wouldn’t I attract
people like that?”
‘IT’S NOT MY FAULT’
Other problems included an irresponsible attitude: “Of
course it was never my fault, it was everybody else’s.”
She made several attempts at “geographical cures”:
If things got bad, she’d move somewhere else. She was also
stunned by discovering the body of a boyfriend after his suicide.
Then, she decided to take her alcoholic ex-husband’s children
to an Alateen meeting to help them cope with their dad’s
alcohol abuse. While there, she was steered to an Al-Anon meeting
down the hall.
Al-Anon and Alateen are self-help recovery groups for friends
and family of alcoholics. The groups’ philosophy is based
on the 12 steps of Alcoholics Anonymous (AA), an organization
Carla later became involved with.
She was shocked at the raw and honest topics of the Al-Anon
meetings, but also wondered, “Are you people spying on me?”
It took a while for the reality of her own problem with alcohol
to sink in.
“I would go to happy hour and drink until I had just enough
time to walk in before they closed day care to get my daughter,
who at the time was 2 and 3, and then rush to my Al-Anon meeting,
drunk,” Carla said. “I didn’t know people didn’t
do that!”
Finally, three months after giving birth to a son in 1995 at
the age of 32, she had her “moment of clarity.”
“I was ready to stop for a six-pack, but knew I wouldn’t
wake up for his midnight feeding, and that scared the crap out
of me. I wanted a drink so bad I would have killed for one.
“And then I knew,” she said.
On a friend’s doorstep she admitted her drinking problem.
Within half an hour, “I had a babysitter and was at a meeting.
That started my sobriety.”
COUNTING HER BLESSINGS
Carla is thankful that her children were never harmed or neglected
throughout her years of drinking. She also appreciates the friends
in AA who were tough with her, but didn’t give up.
“I thought they hated me. What I know now today is that
they loved me enough to save my life. They were all standing back
waiting and watching and wondering when I would get a glimmer,”
she said.
She’s learned what those friends knew — sobriety
isn’t an easy path.
“You have to take off the rose-colored glasses and you
have to see yourself as you are,” she said.
In addition to learning how not to drink, AA teaches participants
to change their way of thinking. “That’s where the
steps come in — dealing with what you are, what you’ve
done, how you’ve hurt people, how you’ve hurt yourself,
what drives you,” she said.
That complicated road to understanding herself and her family
history (her mother was an alcoholic and drug addict) led to a
new life with a husband who’s also in recovery.
“I like who I am today, and I don’t want to go back
there because I hated me so bad,” she said.
DISABILITY CONNECTION
Watching her father suffer, and knowing that she, too, might someday
be affected by MD, was an ever-present source of frustration and
helplessness for Carla.
Her MD symptoms now make her too weak to do many things she
loves, such as detailing cars, playing softball or ice skating.
Ironically, her journey as an alcoholic has helped her cope with
this new challenge and to accept her diagnosis.
“Had I not had AA and Al-Anon, I don’t think I would
be making it right now very well,” Carla said. “But
because of learning how to accept and deal — maybe not like
— I can accept this.”
ADVICE: REMEMBER THE HOPE
For others who find themselves entangled with addiction, Carla
emphasizes that there’s always hope.
“That was a big thing I had to realize and I’ve
helped a lot of other people realize,” she said. “You
can live a wonderful life. I have made up my mind to do that.
I’m not going to let self-pity rule me.”
AA and other sources of help can be found in the phone book.
While accessibility to meetings may be a problem, it isn’t
a solid excuse, Carla said.
“If you need a ride, say so. If you need help, say something,”
she said, adding that a meeting can be held at your home if you
can’t get out.
In fact, alcoholism is a great equalizer, she added. “When
you get behind [AA’s] doors, you’re an alcoholic,
you’re a person and you need help, and that’s all
we care about,” she said.
“The first step is to realize you need help.”
KENNETH: WE WENT TOO FAR TOO FAST.
Hindsight is 20-20 for Kenneth, who is 27, and lives in
a small Texas town.
On the surface, about three years ago things appeared pretty
stable: He and his wife of six years had bought their first home,
and she had a steady job that supported the family. Kenneth stayed
home to care for their three kids, ages 5, 4 and 1.
But ever since he’d graduated from high school, Kenneth
had had serious depression, something he was only mildly aware
of. “I thought, it’s just life, you have to get over
it,” he said.
Taking care of the kids was becoming increasingly difficult
because he was also losing abilities and strength due to his Friedreich’s
ataxia, said Kenneth, who uses a manual wheelchair.
Then, simply, he made friends with the wrong people at the right
time.
THE ‘METH’ TAKES CHARGE
He started out sniffing and smoking methamphetamine, a drug
that today is abused at an epidemic rate in many areas of the
United States. The drug is sometimes called meth, speed, crank,
crystal or ice because of its glasslike appearance.
The high he got from the drug masked the miserable feelings
from his depression. But, like most addicts, he eventually needed
more and more of it to keep the high or even feel “normal.”
“It took off,” Kenneth said, noting that his wife,
“Susan,” was aware of what he was doing.
“For about the first year, I guess, she wasn’t doing
anything [about it], but she didn’t ever say anything against
it,” he said. “And then she got into it, too.”
The couple’s financial problems quickly mounted, but not
from buying the drugs.
“We were real good friends with the guy who cooked [the
methamphetamine] but he didn’t have a vehicle. So we’d
let him use our vehicle to go cook and sell, and in turn, he’d
give us drugs for it,” Kenneth said.
Susan ended up missing a lot of work, and then they fell far
behind on their bills. They eventually had to file for bankruptcy.
“We didn’t make our house payments, car payments,
credit card payments, didn’t make our utility payments.
It just got to be so overwhelming,” he said. “I think
that’s what clued in our parents.”
LIFESAVING INTERVENTION
Fortunately, the couple’s parents held a formal intervention,
and insisted that both of them get treatment. Kenneth entered
an in-patient drug treatment program that would work with his
Medicaid.
If his parents hadn’t gotten involved, “I’d
probably be dead by now,” he said.
Kenneth has been clean since July 2003, the same month he split
up with Susan. They’re now divorced.
Doctors prescribed medications to treat his depression, and
once that was under control, “I was glad to get rid of the
drugs,” he said. He didn’t suffer from withdrawal
or require detoxification during his six-day hospital stay.
He also learned how to cope with life without the illegal drugs,
though Kenneth readily admits that when feeling down he’s
been tempted to go back to using.
Now, he lives with his parents, has joint custody of his children
and is trying to rebuild his life. But he doesn’t have to
wonder about what went wrong.
“We went too far too fast. We bought a house, she had
a good job. With me being disabled, it was just too much stress
on both of us and we cracked. We couldn’t handle it,”
he said.
DISABILITY CONNECTION
Kenneth’s growing depression directly paralleled the progression
of his FA. He began using a wheelchair at 18. He was angry about
the transition but had no one to talk to, and was too shy or ashamed
to ask for help.
“When I was on drugs, and the seldom times I would actually
sleep, I’d wake up and I’d be mad at the trees because
the trees didn’t have to sit in a wheelchair. They got to
be standing up,” he said. “That makes no sense, but
that’s how I felt. I was mad at everything, and I blamed
everybody.”
In hindsight, he says a support group or friends who could relate
to his disability might have helped.
“No one knew what I was dealing with every day. I had
friends but none of them understood,” he said.
In a terrible irony, methamphetamine was probably one of the
worst drugs he could have used. FA affects peripheral nerves and
often includes heart complications. The meth made those problems
worse.
“Meth speeds up your heart rate and makes your blood pump
faster,” he said. “So your heart is being overworked,
and you’ve got borderline heart problems on top of that.”
In fact, Kenneth’s doctor told him he’d had a heart
attack and didn’t even know it.
Since he quit meth, Kenneth has regained some sensation that
the drugs had taken, and numbness in his lower body has gradually
subsided.
But he’s left with a constant ringing sound in his ears
because of meth-caused nerve damage.
ADVICE: ASK FOR HELP
Kenneth said he talks to God a lot now, and hopes his story
can prevent others from wrecking their lives.
Recognizing depression and treating it is the first step to
avoiding troubles like his, Kenneth said.
“With depression, the feeling is so intense that you’re
liable to do anything just to make that feeling go away and try
to get happy. Unfortunately, I went to drugs,” he said.
The National Mental Health Association lists the symptoms of
clinical depression, including a persistent sad, anxious or “empty”
mood; changes in sleep patterns or appetite; loss of interest
or pleasure in activities once enjoyed; and thoughts of death
or suicide.
Asking for help is paramount, and Kenneth encourages people
like him to overcome shyness or discomfort to do that.
He also recommends talking with your MDA office to connect with
others facing similar neuromuscular disease issues.
Finally, surround yourself with positive people and, at all
costs, avoid people who are mixed up with drugs, he said.
“You’ve got to realize that life is too short to
be doing drugs all the time, because it will take everything from
you,” he said. “Everybody’s got to have help,
and don’t be ashamed to ask.”
GRETCHEN: ANYTIME WAS A TIME TO PARTY
Gretchen Glick, who agreed to use her full name for this article,
has enjoyed sobriety since 1979, a chosen path that she still
follows “one day at a time.”
Glick, 51, is a writer who has Charcot-Marie-Tooth disease and
lives in Solvang, Calif.
Glick started drinking at 19, and bottomed out at 26 when “my
only hobby was drinking.”
“Drinking at first was fun and social, after games, at
parties. Anytime was a time for a party,” she said, but
“I never remembered that neurologist’s warning when
I was 15 not to drink.”
Toward the end of her college years, what was at first a daily
way to relax soon had the opposite effect: “I was wired.
I didn’t mind, I wrote faster, worked harder.”
Soon, she couldn’t relax so a neurologist prescribed Valium,
but eventually it didn’t provide relief either. Then she
added marijuana to “smooth things out.”
“I was worse off. I thought more of each would work. That’s
the insanity of alcoholism: doing the same thing over and over
but expecting different results,” Glick said.
Soon the combination became a roller-coaster ride that included
reckless driving, a terrible attitude, and ignoring well-meaning
friends and family members. She also had a list of physical problems
such as severe weight loss, worsening tremors, hallucinations,
malnutrition (“I drank, but I didn’t eat”),
tripping and falling, and even a bout with rheumatic fever.
HELPING A FRIEND AND HELPING HERSELF
She found her way to a 12-step program while trying to help
a drinking buddy. Attending meetings as a support to her friend,
she heard stories that struck a familiar chord.
On her 27th birthday, she introduced herself as an alcoholic
at an AA meeting for the first time.
“The greatest lesson from this experience has been ‘one
never knows where the message will come from,’” Glick
said.
“This helped me learn to keep an open mind, get honest
with myself, and be willing to share my experiences with others.”
And share she does. In 1999 she founded CMT Universal Services,
an e-mail-based discussion group for people with CMT, their families
and loved ones. Currently, 900 people from 28 countries participate
via computer. (See http://health.groups.yahoo.com/group/CMTUS.)
She was also recently appointed to the Santa Barbara County
Advisory Board for Alcohol and Drug Programs. In this position
she learns about the proliferation of treatment centers in her
community, and has “the opportunity to review decisions
and make policy.”
DISABILITY CONNECTION
Glick has long pondered the connection between her CMT and her
substance abuse.
Though “my inability to be responsible for myself”
is also behind her substance problem, CMT did play a role, she
said.
She didn’t know how to adapt to the world in the 1960s
and 1970s before the ADA, computers or even disabled parking spaces.
Glick is ambulatory, and wears custom orthotics in her shoes to
help stabilize her stride.
“I was expected to be normal. From the outside, sure I
looked and acted normal, and in high school went to all the dances
and parties,” she said. “But deep within there were
feelings of dread, of uncertainty, of worry, or fear, of anger,
of death, of why me?
“Back then we really didn’t talk about feelings
like that. I feel the alcohol, pills and marijuana initially gave
my brain a rest from all those thoughts swimming in my head,”
Glick said.
ADVICE: PICK UP THE PHONE AND DIAL
Glick recommends that anyone facing addiction go the phone book
and call a 12-step program such as AA.
“Get a meeting schedule. Go to an open meeting”
for those who want information.
Once at a meeting, “Introduce yourself, and get the phone
numbers of people in the group to call for support.” Then
find a sponsor.
If medical detoxification is necessary, she advises consulting
with a neurologist who’s familiar with your neuromuscular
disease and trained in addiction medicine.
“Some people need medications for medical conditions such
as chronic pain. But the line is drawn at the point the person
takes more than the indicated, prescribed amount,” she said.
Although her substance abuse led her to a 12-step program half
her lifetime ago, Glick said she finds the “good principles”
and lessons she learned there relevant every day.
“The length of sobriety really determines nothing,”
she said. “But utilizing the principles in my 12-step program
in all areas of my life is what is truly important.”
| |
FACING
RECOVERY
FINDING THE RIGHT TREATMENT
CAN BE A CHALLENGE
The advice rarely varies when it
comes to the first steps to overcoming alcohol or
drug abuse: Admit you have a problem, and find help.
The resources for getting that help
— from publicly funded treatment centers to
grassroots, self-help organizations — are numerous.
But whether a person with a physical disability has
access to them is another story.
For example, if someone is searching
online for a wheelchair-accessible treatment center,
“they’re going to be out of luck,”
said John De Miranda, executive director of the National
Association on Alcohol, Drugs and Disability.
“The big treatment directory
(www.findtreatment.samhsa.gov)
doesn’t include any information about the accessibility
of the program, or if they have any expertise about
working with a specific disability,” De Miranda
said.
The problems may go far beyond the
lack of a ramp or elevator.
“Many programs do discriminate
either subtly or overtly,” and that’s
a violation of the ADA, De Miranda said.
Some programs or facilities balk
at people who need even minimal attendant care or
anything else deemed out of the ordinary, De Miranda
said.
“Services tend to be program-oriented:
If people don’t quite fit or cannot quite do
the program the way it’s intended, often that
gets interpreted as resistance or denial,” he
said. “The programs don’t flex easily,
and of course people with disabilities really require
flexibility in programming.”
That’s why De Miranda and others
founded NAADD. The organization plans to create a
national treatment registry that highlights levels
of care for working with people with disabilities.
But until then, what’s the
answer?
“What we often end up saying
is: Call your local alcohol and drug programs,”
De Miranda said. Every state has a drug and alcohol
agency, plus abuse, treatment and prevention programs
at community and city levels. (See “Substance
Abuse Resources.”)
“But we also tell people that
they’ll have to use their advocacy skills as
much as their telephone, and be willing to press,”
he said. You may even have to call a program’s
funding source to explain its inaccessibility.
“Because there are not a lot
of complaints, there tends not to be a lot of change
in the system. It really is a disability rights issue
as much as it is a health care issue.” |
|
Substance
Abuse Warning Signs
- Using social drugs with prescribed medications
- Using alone Pattern
of absences/lateness because of substance use
- Recurring hangovers or blackouts
- Declining or inconsistent academic/job
performance
- Use of large quantities without appearing
intoxicated
- Frequent intoxication or intentional
heavy use
Some special risks for
people with disabilities:
Misidentification and enabling:
Professionals, family, friends and attendants tend to focus
on the disability, missing the warning signs of substance
abuse. They also may be lenient toward or encourage use as
a compensation for the disability.
Prescribed medications:
Prescription medication abuse as well as the danger in mixing
medications with alcohol and other drugs can be easily overlooked.
Constrained social opportunities:
It’s difficult to find social interactions that are
alcohol-free, particularly for college students.
Family of origin:
Parental alcoholism is one of the strongest predictors of
substance abuse.
Physical and attitudinal inaccessibility:
Very few professional programs specialize in prevention or
treatment for people with disabilities. (See “Facing
Recovery.”)
EXCERPTED FROM: “Facts on Substance Abuse and Students
With Disabilities,” SARDI, Wright State University,
Dayton, Ohio. |
SUBSTANCE
ABUSE RESOURCES
National Association on Alcohol, Drugs and Disability
www.naadd.org
(650) 578-8047
National Institute on Drug Abuse
www.nida.nih.gov
Substance Abuse and Mental Health Services Administration (SAMHSA)
U.S. Department of Health information clearinghouse
www.health.org
( 800) 729-6686
Substance Abuse Resources and Disability Issues Program (SARDI)
Wright State University in Dayton, Ohio
www.med.wright.edu/citar/sardi
(937) 775-1484
Consumer Advocacy Model (CAM), a component of SARDI
www.med.wright.edu/citar/sardi/cam.html
Support and treatment for people with disabilities who have concurrent
alcohol or drug-use problems
TREATMENT LOCATORS
www.findtreatment.samhsa.gov
www.jointogether.org
www.addictionresourceguide.com
www.soberrecovery.com
HOTLINES
Alcohol Abuse Crisis Center
(800) 333-2294
Children of Alcoholics
(800) 553-7160
Drug Abuse Action Helpline
(800) 888-9383
SELF-HELP/12-STEP PROGRAMS
Check local phone book.
Alcoholics Anonymous
www.aa.org
Al-Anon/Alateen
www.al-anon.alateen.org
Narcotics Anonymous
www.na.org
(818) 773-9999
Smart Recovery (12-step alternative)
www.smartrecovery.org
(440) 951-5357
