“The seed of suffering in you may be strong, but don't wait until you have no more suffering before allowing yourself to be happy.”
― Thích Nhất Hạnh |
| Jacquie Gregor |
Today I would like to share a story of one
woman who has in the midst of her own health crisis found meaning by reaching
out to others with similar illness. Jacquie Gregor’s story is one of courage
and hope during the most trying times imaginable. After marrying her sweetheart Marlin in 2000,
she returned from their Mexican honeymoon and was hospitalized with mysterious
symptoms, unable to breathe on her own.
The medical system was stumped and she felt she was near death at age 39.
She asked Marlin to find books to
read to her on “how to die.” She didn’t die and they found their way
to Buddhist teachings and eventually to a local center that has been their
spiritual home ever since. Jacquie continued to struggle with many difficult
and baffling symptoms and lived in chronic pain until a mishap with a
chiropractor and a trip to the emergency room where an older intuitive
physician saw her, led to a diagnosis of Ankylosing Spondylitis (A.S.).
“A.S. is a rheumatic disease that
primarily affects the spine. It is
one condition among a group of disease called Spondylarthritis… Though A.S.
primarily affects the spine, other parts of the body can be involved. All forms
of Spondylarthritis including A.S. are chronic diseases. Hence, a person currently diagnosed
with A.S., given today’s knowledge, will have it some degree for the rest of
his or her life. “ (Spondylitis Association of America). Living with A.S. is challenging for
Jacquie as she copes with many ongoing problems from the disease itself, but
also from the medications necessary to slow it’s course and manage the worst
symptoms. She must take ongoing medication
used in chemotherapy that causes nausea, fatigue and restless legs syndrome
while the ongoing bony changes in her body, such as fused cervical vertebrae
produce ongoing pain.
There is no cure for A.S. and much is
still being discovered about the disease. Up to twenty years ago the typical profile of an A.S.
patient was a Jewish male. Women
were rarely diagnosed at all and those who had the illness were instead labeled
neurotic. While there are over
twenty genetic markers for AS, most insurance companies generally test for only
one and this marker, the gene HLA-B27, is often negative in many women,
including Jacquie. Therefore, many women, including Jacquie have suffered
greatly, not knowing why they were ill or what they could do to ameliorate
their pain.
 |
| Jacquie with husband Marlin |
Jacquie applied to the Spondylitis
Association of America to start a support group in Tucson and learned that to
lead a group she needed to be very knowledgeable about all facets of the
disease in order to guide others, and would undergo a lengthy process including
an interview series and a test to become a group leader. She met the requirements and started
the group that has met successfully for two years now. Initially members travelled from
Phoenix but because the disease is both fatiguing and painful making travel
difficult, requests were made for Jacquie to lead a group there. She quickly said yes but Marlin pointed
out the obvious flaw in the plan
“If it’s hard for someone with A.S. to travel from Phoenix to Tucson,
won’t it be just as hard for you to travel there?” A beautiful compromise was reached in which Marlin drives
Jacquie to Phoenix every other month so she can continue her mission.
Each support group has about twenty
members although Jacquie says that attendance varies. The youngest member is nine years old and his A.S. was found
when he was playing sports. Due to
the difficulty in diagnosing the illness it is hard to say how many persons in
Phoenix and Tucson live with A.S.
Her physician follows only eight patients with A.S. here. The group is significant for all who participate, “We
all come together to talk about what we can do to live a happy life with this
disease.”
One of our mutual goals in writing about
Jacquie’s story is getting out the word about A.S. as well as the local support
groups. In early stages it usually
present as low back pain that is chronic but is relieved by exercise. It can
appear in other areas of the body first.
Jacquie was diagnosed with chronic Iritis by her Ophthalmologist years
before she received the A.S. diagnosis.
Iritis occurs in 30% of all AS patients. It can also manifest as heart conditions and elsewhere. Young
women with chronic back pain during puberty may soon be diagnosed by a sonogram
(ultrasound) of the Achilles tendon.
What a vexing disease! Exercise is extremely important in managing A.S. and Jacquie as
a professional fitness coach before her diagnoses was in excellent
condition. She still exercises
every day with the aid of a Pilates machine, which helps her gently stretch and
strengthen her body. “If you have
spinal pain that doesn’t get better but improves with exercise, please go see your
doctor. It’s called arthritis
because it has to do with the bones and the spine but this is not your
grandmother’s arthritis. It is and
autoimmune disease and I must take approximately 15 medications just to balance
everything out.”
When Jacquie wrote to me she said, “I do not know about making a “Huge” difference.
Perhaps making a difference begins with pain, this has been my reflection…. I reach out to the Arizona
Communities by holding support groups for those that suffer with this disease
or other Spondylarthopathies. I do this to give those that suffer a VOICE, a
forum.” I am coming to understand
that the dedication Jacquie has shown in creating a space for people to come
together for mutual support and comfort as deeply loving action. The following
quotes are from the website The Faces of Ankylosing Spondlytis (see link
below):
Deborah said, “I
nominate Jacquie Gregor. She has A.S. but she fights through the pain of
this disease and is always there for others. She truly has found peace.
Jacquie is so beautiful, she’s aesthetically gorgeous, but she truly possesses
that rare inner beauty we seek to find. She is intelligent. She has a wonderful
husband who supports her; she gives as much to the relationship. If I didn’t
believe in soul mates, one look at them or a picture and you will see it.
Jacquie is very active in the community and her church. She teaches
mediation classes. Jacquie is one of God’s Angels here on earth. I am blessed
and a better person because she is a close friend. A.S. causes her a lot of
pain, but you won’t hear her complain.”
Kathy said, “I would like to give
an apple (from the artist Jennifer Visshcer http://thefeedingedge.com) to my
sister, Jacquie, who has been suffering with A.S. for the past several years.
She is a wonderful person who tries hard to live her life to the fullest
despite her pain. She has a great deal of compassion for others, and shows it
by devoting her life to others in need. She has touched the lives of many
through her selfless acts of kindness by being present when so many in her life
have suffered. She so often puts her needs aside so that others can depend on
her for strength. She is a wonderful, caring person to everyone. I’m proud that
she’s my sister.”
When one person reaches out to another,
with open hands and a loving heart I believe that we are making a difference
and this is why I am becoming more committed every day to shining a light on
these pure actions of those I encounter on my journey.
Next week I will be writing about Finding Hope in Music. Send me your favorite uplifting and encouraging songs, orchestral pieces, funky jazz tunes, or even opera. Something for everyone!
Namaste,
Felicia
Please follow the links below to learn more about Ankylosing Spondylitis, Buddhism and The Kadampa Meditation Center of Tucson.
The Kadampa Meditation Center in Tucson where Jacquie and Marlin attend and teach.
A link to the local chapter of the A.S. support group that Jacquie leads.
And all are welcome to attend a special meeting featuring local newsman Chuck George who will be discussing his personal experiences with chronic depression on December 7. This meeting combines both Phoenix and Tucson support groups but anyone is invited to attend.
The Tanque Verde Lutheran Church located
8625 E Tanque Verde Rd in Tucson. We will be in Linder Hall on the Southeast corner of the complex.
The Date: December 7 (Saturday)
Time: 3:00 p.m.-5:00 p.m.
The meeting will feature Chuck George of Tucson
Sonotronics is the company co-owned by Jacquie and Marlin. They manufacture ultrasonic transmitters and receivers to track animals in the water and relocate underwater equipment.
Hi Cam, I would love to email you but I'm sadly without your addy. I'm still working on blog functionality and soon will be able to contact readers through google plus as well as other modes, but in the meantime please send a note to: felicialowery@gmail.com Thanks! Felicia
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