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30
April – June 2014
www.deltalivingmagazine.com
Story and photos by Maria Tavares
mrh_tavares@yahoo.com
J
oy LoveWilliams is a woman with a kind
heart and a genuinely caring spirit, who
cherishes every day given to her because she is
fighting for her life.
Diagnosed in June, 2012 with an Interstitial
Lung Disease (ILD), more specifically, Sarcoid-
osis, Joy, 41, is on a transplant list for new lungs.
She has to stay as healthy as possible while trav-
eling to many appointments for tests all over
the Bay Area. If any health issues were to de-
velop before receiving a lung, she could be re-
moved from the recipient list.
On a first-impression basis, minus the tiny,
portable, almost purse-like oxygen pack she has
to carry around, her smile masks any trace she
is living with an illness. Her given name suits
her. She is not one to let her disease rule her
life. If there is anyone who knows the value of
a moment, it’s Joy.
Sarcoidosis is an inflammatory disease that
causes your immune system to attack parts of
your body, which in Joy’s case, means her right
lung has already sustained permanent damage
and it is slowly making its way to her left.
Joy says the damage to her lungs stems from
“frequent colds and viruses, infections, bronchi-
tis, and having pneumonia (twice).” Although
the cause of sarcoidosis cannot be pinpointed,
she has to “KEEP HEALTHY” along with a
positive outlook:
“I was told that I'm the type who tells the
negative committee, that meets inside our
heads, to sit down and be quiet; there isn't any
room for negative thoughts,” she said.
Much speculation circles around the factors
that cause this type of disease, such as poor ven-
tilation in a workplace, airborne toxins, expo-
sure to bacteria and other chemicals, or having
the genetics that trigger the immune system to
kick-start the inflammation that mostly occurs
in the body's lymph nodes and lungs (but is not
limited to the eyes, skin, kidneys, heart, brain;
just to name a few).
To date, Joy's treatments include “medica-
tion, oxygen therapy 24/7, pulmonary rehab”
and ultimately a lung transplant. She says those
are “the key factors [for] people like me with
ILD, to live full, satisfying lives.”
As the confusion and on-and-off medi-
cal leaves from work progressed, of course she
felt “shocked, disbelief, scared, angry, sad and
exhausted” when she was finally able to put
a medical name to the causes of her physical
condition.
Currently, Joy lives in her parents’ home in
Pittsburg, CA until they get a handle on her
illness. Mattie, Joy's mother, a former secretary
for the San Francisco Chronicle's Circulation
Department, and a retired Hospice Aid from
Kaiser Permanente, focuses on her two most
important patients: Joy and Joy's father, Ray.
Ray,who campaigns forThe Kidney Educa-
tion Association, is also a diabetic on in-home
dialysis, preparing to get on the kidney trans-
plant list, and attending college for a degree in
accounting.
“I truly admire his perseverance to continue,
sick or not!” said Joy.
Ray is a tremendous help in raising funds
for Joy's lung transplant and the costs for her
recovery. A requirement of a lung transplant
after hospitalization, is spending six weeks in
the area, no more than a half hour away from
UCSF Medical Center (Joy's hospital), for all
follow up appointments. Joy plans to use any
funds raised before her transplant for a hotel
room with a kitchenette, access to parking, and
a laundry facility on-site.
She and her family would love to hear from
anyone with hotel-connections for temporary
housing in San Francisco, near UCSF.
Long before diagnoses, Joy was an active
member of the Napata and The Chocolate
Kisses Band. She was a wedding singer and
joined the band in 1992 as a single mother,
working as a cocktail waitress in a lounge in
Berkeley, CA, and was discovered on her break
in the ladies' room, singing out loud. After 13
years with the band, she went on to sing with
other bands all over the Bay Area. For now, she
assists with booking the gigs. Even though she
has been on medical leave since June 2013,
her Administrative Assistant I position in the
Equipment Finances Department in San Fran-
cisco, awaits her healthy return.
A woman with an enlightening spirit, Joy
believes that “disease and health” are rooted in
thought. “Sickly thoughts will express them-
selves through a sickly body,” she says. It is a
choice of hers, every day, to stay positive.
“I love life! I believe life is what you make
it to be,” she adds. “I'm a passionate advocate
for the uplifting, inspirational way of living. I've
always been this way.Yes, I'm sick, but not out
of the game.”
Sick But Not
Out of the Game
To make a tax-deductible donation for
Joy through The National Foundation for
Transplants, and read more about her dis-
ease, visit http://patients.transplants.org/
joylovewilliams. Send inquiries for future
fundraisers or comments to Joy’s father,
Ray Richardson, CEO of The Kidney
Education Association at info@TKEA.org.
Joy Love Williams Waits for New Lungs
Ray Williams, Joy's father, is CEO of The Kidney Educa-
tion Association and a huge supporter of the fundraisers
held to help pay for Joy's medical expenses.
Joy Love Williams wears a custom shirt with a picture
drawn by a friend, depicting a woman with her heart and
lungs on display, to raise awareness for her disease.