Deborah McKeithan can fool you because she looks so good. People tell
her that all the time. On a good day, she agrees with them. On a bad
day, she only wishes she felt the same.
That's the nature of the disease stalking her brain. It gnaws away
inside yet leaves its victims looking great on the outside. So great
that people can't recognize it when they see it. Not doctors, not even
family.
Her younger brother once asked her if she would have amounted to
anything had she not been born a cripple.
"I felt like the weirdo in my family," says Deborah, the middle child of
a preacher. "I used to try to be like everyone else and fight for
acceptance. I finally said 'No, fight for your own self.'"
Deborah is fighting multiple sclerosis, a fight familiar to 500,000 or
so Americans. It doesn't get instant name recognition like its cousin,
ALS. There's no baseball-hero namesake. People confuse it with muscular
dystrophy, or think it's contagious. It's neither. It's a long-term
illness, often devastating, but it doesn't kill.
Those living it out in a wheelchair are easily identified as disabled.
Those like Deborah, whose energy animates the most dreary room, make you
forget they're ill. Until it renders them too weak to move, or jars
their memory. Then they're called lazy, or drunk, or psychosomatic.
That's what Deborah's doctors said when they couldn't figure out what
was wrong.
She spent her adolescence in and out of hospitals. She missed so much
school her dream of being a doctor segued to nursing school, with hopes
of working with the terminally ill. It almost happened, too, but the
nursing school faculty didn't think a cripple could cut it. Nor did the
U.S. government. Or the countless other doctors who thought her only
disability was her mind.
Deborah's chronic headaches at age 5 didn't cause suspicion. Not that
they should. MS rarely strikes people before their 20s, and almost never
in the form of a headache.
The family physician in Charlotte, North Carolina, promptly cut off her
long blonde hair. Too heavy, he said, that's what's hurting her head.
When that didn't work, he called her psychosomatic.
That label stuck for the next 14 years, even through chicken pox that
yielded to encephalitis, a 106-degree fever, clumsiness, and vision
problems. At age 13 she looked at her doctor and said, "If it's all in
my head, why don't you send me to a psychiatrist?" It simply reinforced
to them that she was a kid looking for attention.
Numb hands during her first year in nursing school told her something
was wrong, but nothing was going to interfere with school. Nothing
except another massive headache that left her paralyzed on the way to
the hospital. Her brain was swollen, "mild" hydrocephalus that was
apparently missed at birth, doctors said.
Spinal fluid swelling her brain left her in a coma. Part of her skull
was removed to control the swelling.
She left the hospital at age 19 with a bald head, a permanent shunt to
drain excess brain fluid, and a diagnosis of "mild" MS that doctors
believed was under control. The nursing school didn't think it was;
besides, she had missed too much school, she'd have to repeat her
coursework.
When her headaches recurred, a neurologist in Charlotte became
frustrated. Middle-child syndrome. Just wants more attention, he
decided, and convinced her father as well. When she started seeing
double they admitted her back into the hospital, this time on a
psychiatric unit. A nurse wheeled her in front of a mirror, her eyes
bulging from brain pressure, and told her how silly she looked. A
psychiatrist passing by realized she was having a stroke and immediately
called a neurologist.
Deborah couldn't speak, could barely see, and was bound to her
wheelchair. She wasn't given physical therapy, and speech therapy was
taken slowly. She practiced sculpting with a 25-pound block of clay to
keep her thoughts occupied and her hands flexible. For months she
listened to PBS radio, teaching herself to talk again.
When her speech became coherent, she entered the Miss Wheelchair pageant
of North Carolina and won first runner up. In front of 600 people, she
gave a speech about making a life for herself and others. She told them
how happy she was to win Miss Congenital. The audience froze. Deborah
looked at them in horror, then broke into laughter.
Laughter restored her confidence. Laughter kept her going through
another serious episode, when her MS was deemed uncontrollable and there
was nothing more her doctors would do. For the fourth time in her life,
she was told to get her things in order because she wouldn't live much
longer. She was only 24.
She got herself in order. She learned of a place in Houston that was
specializing in MS treatment. There were good doctors there, doctors who
were trying things the rest of the country wasn't.
Her local physician wouldn't give her any names until her mother finally
lured it out of him: Victor Rivera, a neurologist practicing at The
Methodist Hospital. Deborah's mother tracked down the phone number, and
they headed to Houston in search of what they couldn't find at home.
Multiple Sclerosis is the most common central nervous system disease
among young adults in the United States.
Some people never know they have it. Others have one or several
exacerbation's. When that happens, the body's immune system goes into
overdrive and attacks the myelin, or covering, that insulates and
protects nerves.
An attack leaves the brain inflamed. It also leaves lesions on the
myelin that form hardened patches of scar tissue called plaques. Imagine
a frayed telephone line that interrupts and distorts your conversation.
It's the same thing with MS. Damaged myelin short-circuits messages
trying to reach the brain -- messages that help you stay balanced, or
put one foot in front of the other, or form a sentence.
It's multiple because lesions can occur throughout the brain and spinal
cord; it's sclerosis for the plaques of hardened tissue that replace
damaged myelin. Different physical symptoms let doctors know exactly
where those plaques are located. Memory loss or confusion, for example,
means they're in the brain; tremors, blurred vision, uncoordination, or
slurred speech indicates the brain stem; weakness, paralysis or bladder
problems implies the motor pathways; tingling and numbness point to
sensory pathways.
The severity of MS falls along a spectrum. On one end are the lucky ones
whose MS flares up for one or two possibly severe exacerbation's, then
disappears leaving no trace of illness. On the other are the few whose
symptoms strike and progress rapidly, causing severe, permanent
disability.
While no one knows what causes MS, more and more studies point to the
body's immune system. Genetics may play some role, but there is no
evidence that it is directly inherited. MS may lie dormant for years
without being detected. Most often, it strikes people between their 20s
and 40s, women twice as much as men, whites more than blacks and Asians.
It's found more frequently in people living in colder climates. It's
extremely disabling, but it's not contagious and it's rarely fatal.
Which may be why it's often treated with indifference?
Victor Rivera didn't set out to be a rebel. And The Methodist Hospital
didn't anticipate being the country's magnet for MS care. They simply
wanted to make a difference.
For decades, the standard treatment for MS in the U.S. was steroids,
which helped reduce brain inflammation but didn't do much to keep the
disease from progressing. Europeans were using chemotherapy drugs.
According to Rivera, if MS was triggered by a faulty immune system,
which was highly suspected, it would probably respond well to
chemotherapy. He started using a new chemotherapy drug, cytoxan, that
suppressed the immune system. No other place in the States had used
chemotherapy, and physicians in other medical centers couldn't
understand why Methodist was, either. Yet patients were responding. The
cytoxan created a buffer against abnormal antibodies and kept them from
attacking the myelin.
Ten years later, after the rest of the country had come around to using
cytoxan, Methodist was still looking for something better to treat MS.
David Huston, MD, an immunology specialist at Methodist, was using
cytoxan intravenously on people with lupus, another autoimmune disorder.
It was safer, and it was easy to monitor any side effects. Rivera tried
it on those people with progressive MS and was thrilled with the
results. Patients felt better, stronger, more flexible, and they could
move. It also stabilized the disease's progression.
Now patients come to Methodist from across the country, from almost
every continent.
"We have a group of people from Los Angeles who fly here together every
six months for follow-up treatment," Rivera says. "A very prominent
neurologist in L.A. called and asked 'What are you doing differently
there?'"
Rivera chuckles, then pauses for a minute to consider the answer.
"Part of the reason is that our generation was never trained in using
drugs that suppressed the immune system," Rivera submits. "When I was a
resident, these drugs either didn't exist, or they were used by cancer
specialists, not neurologists.
"Even though there's now a tremendous understanding of MS, its treatment
still remains a real art," he says. Because it behaves differently in
each person, treatment must be highly individualized.
"There are different degrees of MS, and it has multiple symptoms," he
explains. "You must assess what they are so you can treat the MS and its
symptoms: the fatigue, the spasticity, the bladder problems."
The correct diagnosis of MS and its type is critical in helping
physicians gauge an appropriate treatment. Magnetic resonance imaging,
or MRI, offers a clear view of brain and spinal lesions. It also reveals
how well or poorly a treatment is working by whether or not the plaque
is healing.
"The big thing with MS is that it's not totally irreversible, like ALS
or Alzheimer's, where you lose nerve cells," Rivera says. "We're not
talking about the actual nerves; we're talking about the myelin that
covers them, and that can be recovered." In some cases, the myelin
regenerates spontaneously. In more serious cases, various drugs can
reduce inflammation, allowing the lesion to heal and the myelin to
restore itself.
One such recently FDA-approved drug hit the market last year causing
widespread excitement. Betaseron prevents exacerbation's and may, in the
long run, cause less side effects for those with remittent MS whose
symptoms come and go. On the flip side, it is very costly, offers no
relief to those whose MS is progressive, and is not readily available.
Its limited supply is allotted only to those lucky candidates whose
Social Security numbers are randomly selected from a waiting list.
But Methodist's artillery doesn't stop with drugs, says neurologist
Stanley Appel, who oversees the Neurology Service at Methodist and
Baylor College of Medicine. At least four different studies will
hopefully shed light on the disease's cause and cure. There is also a
multiple sclerosis clinic, headed by Methodist neurologist Yadollah
Harati. The clinic is staffed by the same neurologists who practice at
Methodist and teach at Baylor College of Medicine. Patients are seen and
treated weekly, including those who have no medical insurance. A number
of them are being started on Betaseron.
"We don't just take medicine and put it into our patients like a
recipe," Rivera says. "They feel better, they see results, they get
friendly, humane care. That's why they keep coming here. They feel like
they're home."
The first thing Rivera did when Deborah arrived was determine the extent
of her illness. It hadn't hit her brain stem, but her vision was
severely impaired, limited to a narrow, blurry strip.
She was suffering from optic neuritis, an inflammation of the nerve that
controls vision and a classic MS trademark.
"When I saw her, she couldn't walk. She had all sorts of vision
problems, and epilepsy. Nothing was working for her," Rivera says. "She
also had massive brain swelling, which is very rare in MS." He gave her
a brain diuretic to drain fluid building in her brain that was causing
her constant headaches. Her headaches stopped.
Next, he gave her a steroid injection to help her vision. By the second
treatment she could see the subtle print in the wallpaper. She held her
mother and cried.
The medications once labeled "too aggressive" kept her exacerbation's
under control -- they kept her brain from swelling, and they helped
control her seizures. She went home walking with the help of a cane.
That was in 1980. She's been back since then for follow-up treatments.
"Dr. Rivera's been fighting for my life for a long time," Deborah says,
matter of factly. "We've dealt with this together."
For the first time in years, Deborah finally had the energy to do
something. She believes Rivera saved her life. He says he simply gave
her the care she needed, the same care all patients should receive.
Deborah has worked hard not to let an attitude be her handicap. She's
found an answer to her brother's probing question.
Who you were before you became disabled is who you will be, she's
learned. Life, she says, can have two purposes: an excuse from, or a
reason for.
"Some people look for an excuse not to be living, and you give them a
disability and they're happy, because they now they have professional
'gonna do,'" Deborah says. "I was gonna do that..." is unspoken but
acknowledged.
Or, she continues, life becomes a reason for, "and those are the ones
you find within the disabled community educating and changing the
world."
Deborah's reason for revealed itself when she returned to Charlotte, to
a life that now had possibilities.
"Miss Congenital" returned to the strength and support from the friends
she made during the pageant. True to her word, she rallied them to form
the country's first chapter of HOW--Handicapped Organized Women--whose
motto was "help ourselves by helping others." They gathered clothing for
refugee children, visited newly disabled people at home and in the
hospital, paid service calls to the elderly.
"It wasn't expected," Deborah says. "It's not normal for a disabled
person to help others, because others are typically wanting to help
them."
HOW hit the national news. Major newspapers in New York ran interviews
with her. She was invited, twice, to speak on Sally Jesse Raphael's
daytime talk show to explore how disability affects a woman's life.
Sally was so impressed she became a HOW board member.
Men were wanting in. She told them they were invited only when they put
on dresses and shaved. The next meeting, three men came in dresses,
clean-shaven, even their legs. The next week Handicapped Independent Men
was born. "I'm not a woman who goes against my word," Deborah declares.
HOW received its first endowment when Deborah won the "Endow A. Dream"
award from a Chicago philanthropist for overcoming adversity with a
positive attitude. Art Linkletter presented the award, stayed in touch,
and encouraged her to do public speaking.
At the time, President Reagan was telling Americans to be more and do
more. Deborah was trying, but like many of the disabled she found
herself entangled in a Catch-22. She'd been living on Social Security
and disability while turning in her HOW paycheck to the government. If
she gave up Social Security, she'd give up Medicare, a necessity for
someone with MS who requires medical support. Because MS is
preexisting, no insurance plan would take her or anyone else under the
same circumstances.
Basically, she says, the government was paying the disabled to
deteriorate, but the pay was so bad they preferred to work.
She drafted a letter to the President requesting that the disabled be
allowed to purchase Medicare insurance on a sliding-scale fee. Then, if
they could work successfully, they could give up Social Security and
keep their health insurance.
Wonderful, she says, except how do you get a letter directly to the
President? She dropped a nail file in the envelope. "My hands shake, and
I'm legally blind...you know how these things just slip by," she
confesses with feigned innocence. Two days later, when the metal
detectors went off, she got a call from the Secret Service.
She was invited to Washington to testify on behalf of the disabled. The
President's Commission recruited her to help draft the Americans with
Disabilities Act. From a simple nail file, Deborah found herself working
alongside senators and congressmen, drafting legislation on behalf of
the disabled community. In 1985, the Deborah McKeithan bill was passed,
allowing a disabled person to enter the workforce and purchase Medicare
insurance on a sliding scale. Determination helped Deborah McKeithan
actually unravel a Catch-22.
She wants others to do the same. "Horses are handicapped, people are
disabled" is a motto Deborah uses in her lectures. In a strange way, her
dream of working with the terminally ill has adapted well to this new
population.
"I'm telling people who are dealing with the death of their body that
they have to live, but their body as they knew it died. They must get
used to this new temple, this new casing, these new abilities," she
says.
"Some people never get past it. For others it's a springboard. Those are
the people whose injustices give them a reason for making a difference."
Deborah has grown up since that blonde little girl with the cutoff
hair. Much of the time, alone in her hospital bed, she had only herself
to talk to. Now, because of her epilepsy, someone must be near her
constantly.
"Freedom is a state of mind," says Deborah, who finds solace with the
help of Carson, an oversized black Labrador. Carson lifts a groggy head,
glimpses at his charge and, seeing that all is well, surrenders to a
Benedryl-induced snooze. Hay fever is compromising his guide-dog shtick,
but they're in Houston for a six-month check up, and somehow he knows
Deborah is safe. He also knows when she's not.
"It's the aura," she says. "He'll come to me as I'm blacking out, nuzzle
my hand with his nose, and run for help." Carson has been specially
trained for those with special needs. He's Deborah's seeing eye dog, he
gets help when she's having a seizure, he can stabilize her if she loses
her balance. He's also a great conversation starter, especially when
there's a chance to educate.
Opportunity strikes at the airport while waiting for her flight back
home. A four-year-old is having a stare down with Carson. He loosens his
grip on Mom and gingerly steps up to Deborah.
"Is that your dog?" he challenges. School has started.
"Yes, he's my guide dog," Deborah replies. "He helps me find my way."
The little boy is staring now at Deborah. So are the other passengers
waiting for their flight. Deborah takes off her sunglasses. "I have
multiple sclerosis, and I can't see," she tells him. He peers into her
eyes, confused. Her eyes are clear and blue. They look so good.
"Why can't you see?" the boy demands, wanting the real answer. So do the
other passengers pretending to read their magazines. She is deliberate,
explaining her illness in terms a child can understand.
The boy listens, then reaches for Carson. The dog backs away -- his
harness is on, and he is working. Deborah removes Carson's harness, and
the boy hugs him, satisfied. So is Deborah. Thirty or so people have
just learned about disability. They've learned that things aren't always
as they look.
She gets up to board her flight.
"Life is full of detours, but it can be exciting and different if you're
open-minded," Deborah surmises.
"Some of it has stung," she adds.
"Then there are the times when you're meeting a friend for dinner, and
the waiter is walking all over the restaurant but he can't find you
because he isn't sure what you look like. And it's because your friend
forgot to tell him you're in a wheelchair," says Deborah, sublimely.
"That's joy."
For more information, or to contact a physician on The Methodist
Hospital's Neurology Service, please call (713) 798-5971.
Thought you all might find this comforting and inspiring. Remember what I say
about positive mental attitude! Don't know anything about the Methodist
Hospital but anyone living in the state of Texas might want to give this guy a
call. I am sure most of you know about this place anyway.
Good Luck and keep healthy!
Maria