To
persevere against neurological diseases such as Huntington’s and the aging we
all face, I have learned that it is essential to develop meaning and purpose
and perform mental exercise.
In May
1997, just seventeen months after learning that my mother had the devastating symptoms
of Huntington’s, I confided for the first time in a medical professional who
was outside my local support group. Explaining my family’s predicament, I
revealed to a physician in Brazil, my second home,
that I had a 50-50 chance of having inherited the HD mutation.
Thomaz Gollop, M.D., an OB-GYN, knew about the harm
caused by genetic disorders such as HD and the enormous potential for psychological
trauma involved when a family learned it was at risk: in Brazil he helped
pioneer genetic counseling and testing, particularly for families who wanted to
conceive.
I had gone
to interview Dr. Gollop at his São Paulo clinic about abortion, a topic I was researching.
Though Brazil, a fervently Catholic country, had outlawed abortion, millions of
women found ways to terminate their pregnancies, often in precarious
circumstances.
The
disturbing history of this underground practice provides a cautionary tale for
the U.S. as our Supreme Court prepares in
June to apparently renounce five decades of protecting legal abortion. An
affiliate of the American Society of Human Genetics and member of the American
Association for the Advancement of Science, Dr. Gollop has been a leading
advocate in Brazil for women’s health and legalization of abortion, emphasizing
the medical – as opposed to religious – nature of the procedure.
I had not
yet tested for HD. Because of my risk, my Brazilian wife Regina and I had
postponed having children. I saw Dr. Gollop as a shoulder to lean on. I poured
out my heart about my mother’s struggles and my fear of becoming like her.
Dr. Gollop
told me: just keep doing what you like to do until the disease hits.
In my
journey of risk – I tested positive for the mutation in 1999, followed by our daughter
Bianca’s negative test in 2000 – I have frequently reflected on Dr. Gollop’s
advice by imagining the simultaneous challenge and beauty encountered by a
surfer riding a wave.
“Just keep
surfing through life!” I tell myself.
Celebrating our 30th anniversary in
Hawaii
During
this, Huntington’s Disease Awareness Month,
we must recognize the enormous caregiving and financial burdens imposed by HD.
As a result, affected families must often relinquish their dreams. Regina and I
did not have more children. We gave up buying a vacation condo in Brazil. I turned down an offer of a better job at a research university in another state so that, if I were
unable to work, we could rely on Regina’s secure salary and pension from her
job as a public school teacher.
My risk of
becoming disabled means we have focused on saving, to bolster my long-term care
insurance policy. So we usually take modest vacations.
This year,
though, we splurged a bit. To celebrate our 30th wedding anniversary – which I
had never expected to reach with the HD-free health I have enjoyed – we traveled to Hawaii for the
first time. In late March we visited the islands of Kona (the Big Island) and
Oahu.
We found
Hawaii wondrous with its primordial, balmy setting: we saw molten lava flow in
the crater of a volcano and heard a resounding chorus of birds sing at sunset.
Along with newlyweds and other couples marking anniversaries, we were called to
the stage at a luau to slow dance to a Hawaiian love song in celebration of “ohana,”
the Hawaiian word for family.
Keeping
alive the joy
I was
introduced to the story of the father of modern surfing, Duke Kahanamoku
(1890-1968), a native of the Waikiki neighborhood of Honolulu. A dark-skinned
man competing in a world dominated by white athletes and sports officials, Kahanamoku
impressed the world by winning gold and silver medals in swimming at the 1912, 1920,
and 1924 Olympics.
Also
active in rowing and water polo, Kahanamoku was one of the greatest athletes of
his era. Always around beaches and pools, throughout his life he also saved many
people from drowning.
I first
read about Kahanamoku in a guidebook praising the popular Honolulu restaurant that
he owned, Duke’s Waikiki. Powerful local interests had always
capitalized on Kahanamoku’s fame to promote Hawaii as a tourist mecca but
frequently abandoned him to struggle for economic stability on his own. He opened
Duke’s late in life as a way to supplement his income
Regina and
I visited Duke’s. It has Kahanamoku memorabilia, including one of his large
wooden surfboards. Outside the restaurant Regina took a picture of me in front of a giant wall photo
of Kahanamoku poised to take a dive.
Gene Veritas, aka Kenneth P. Serbin, standing in front of photo of Duke Kahanamoku in Honolulu (photo by Regina Serbin)
I was
intrigued by Kahanamoku. Returning home to San Diego, I wanted to keep alive
the joy I had felt in Hawaii. Exploring Hawaiian culture and history, I thought,
might build for me new dimensions of meaning and purpose.
Surfing
king Duke Kahanamoku and aloha
I delved
into journalist David Davis’ Waterman: The Life and Times of Duke Kahanamoku, the first comprehensive
biography of Kahanamoku (and the source of my observations here). By
coincidence, the moving documentary Waterman,
based on Davis’ book, premiered in theaters in April. I saw it on opening day.
In Hawaii Regina
and I were frequently greeted with “aloha,” and people used “mahalo” to say
“thank you.”
As an
official greeter of visiting dignitaries (including President John F. Kennedy)
and global ambassador for Hawaiian culture, Kahanamoku spent his life spreading
the spirit of aloha.
Davis
writes that Kahanamoku “suffused” visitors “with aloha because he believed that
promoting Hawaii was beneficial for fellow Hawaiians.”
Regina Serbin at Chief's Luau with flowers presented in celebration of our 30th wedding anniversary (photo by Gene Veritas)
Kahanamoku
printed his personal philosophy on his business card:
In
Hawaii we greet friends, loved ones or strangers with ALOHA, which means with
love. ALOHA is the key word to the universal spirit of real hospitality, which
made Hawaii renowned as the world’s center of understanding and fellowship. Try
meeting or leaving people with aloha. You’ll be surprised by their reaction. I
believe it, and it is my creed.
(I have also
frequently encountered sincere hospitality in my years of traveling and residing in Brazil
and other Latin American countries.)
Although highly
competitive in athletic contests, Kahanamoku’s embodiment of aloha gained him a
reputation as a humble victor and cooperative teammate.
He refused
to respond to the many racist epithets he endured. He suppressed his feelings
when personally attacked or taken advantage of by others so much that he
developed ulcers.
Nevertheless,
with his athletic prowess and aloha, Kahanamoku entered areas of society
normally reserved for whites.
As Davis
observes, “Many years before nonwhite athletes like Joe Louis, Jesse Owens, and
Jackie Robinson fought racism with courageous performances, Kahanamoku was a
groundbreaking figure who was able to overcome – some would say transcend –
racism.”
The
wisdom of a waterman and his people
For Native
Hawaiians, Kahanamoku’s plight symbolized the unwanted but steamroller-like annexation
of the independent nation by the U.S. (in 1893); the adulteration of the
environment by settlers from the mainland; the imposition of mainland culture
and language on the locals; and, ultimately, the commercialization of society
in favor of tourism, plantation agriculture, and the establishment of Hawaii as
a major military installation.
In the
words of another fine documentary, Hawaii is a “stolen paradise.”
Not
surprisingly, Kahanamoku’s extended family retained no ownership in Duke’s
Waikiki, which expanded to include restaurants on two other Hawaiian islands
and also in three California coastal cities.
Despite
this history, Hawaii fortunately has maintained much of its connection to
nature and cultural traditions. With aloha and their intimate ties to the land
and water, Kahanamoku and his fellow Native Hawaiians (along with natives
elsewhere) offer a connection to premodern humanity and the importance of
solidarity.
That
spirit resonates with the fight for human well-being fundamental to the
Huntington’s cause. As I tweeted
in March, “Fortitude, collaboration of #HuntingtonsDisease movement embody
opposite of aggression of war in @Ukraine: caregiving, alleviation of
suffering, and harnessing of science for cures. #IStandWithUkraine.”
A
“waterman,” Kahanamoku felt most at home in the sea, the source of life and the
substance inhabiting our inner parts.
In a time
of global warming, political strife, and warfare, the world has much to learn
from the wisdom of aloha and Hawaiians’ immersion in nature.
Kenneth and Regina Serbin with Waikiki Beach and Diamond Head volcanic cone in the background (family photo)
Negotiating
the waves of life
Modern
surfing emerged from Hawaii. The greatest surfer of his time and global
popularizer of the activity, Kahanamoku did not see it as a sport. It was about
his love for, and relationship with, the sea. And about pure fun.
“The best
surfer out there is the one having the most fun,” he said. After World War II,
with the worldwide explosion in surf culture, competitions, and surfboard
technologies, Kahanamoku marveled at – and was deeply proud of – how it took
hold. He did want to see it included in the Olympics, which finally
occurred in the 2020 games.
I tried
surfing once in my 20s but did not pursue it. At 62 and still healthy, and with
the example of Kahanamoku, I have thought of perhaps trying again, if I can
find a patient instructor!
More
importantly, Dr. Gollop’s advice rings true: to stave off Huntington’s onset, I
need to keep doing what I like – including exploring Hawaiian culture and
history.
The
thought of Kahanamoku flawlessly negotiating the waves on his board also
reminds me of the need – with aloha – to find in life “the right balance between striving and chilling.”
This week
I am balancing my disappointment over a professional roadblock with the joyous celebration
of Bianca’s graduation from the University of Pennsylvania.
I hope that
those of us in the Huntington’s community and beyond can all learn to surf
through life like Duke Kahanamoku – and always with aloha.
Regina (left), Bianca, and Kenneth Serbin during graduation weekend at the University of Pennsylvania in Philadelphia (family photo)
