Like many in our fast-paced era, early in life I
developed an acute sense of time. Patience with others, with life, and with myself was not one of my virtues.
After learning in 1995 that my mother had Huntington’s
disease and that I had a 50-50 chance of inheriting the devastating mutation,
my anxiety about the passage of time multiplied.
On one level, I definitely came to appreciate the
preciousness of time – especially after testing positive for HD in 1999 and
seeing my mother succumb to the disease in 2006 at the age of 68.
On another level, however, worries about time have continued
to gnaw at my mind. I strive to enjoy life, providing for and spending time
with my family, but also to create a legacy as a scholar, writer, HD advocate,
and citizen. As I once wrote, “I’m squeezing as much as I can into my life
before the symptoms start.”
‘Tricking’ time
For a long time I’ve believed that I can somehow trick time,
getting more than 24 hours out of a day.
Not long after I had learned of my mother’s HD, one of my
students asked me why I walked so quickly around the campus. “I have so much to
do!” I replied while pondering my professional ambition and worrying about my
vulnerability to the disease.
I frequently recall a radio segment about a former federal
cabinet official whose ambition led him to obsess about reducing to the
absolute minimum the time spent on each detail in getting ready in the morning.
Identifying with that attitude, I find it simultaneously
fascinating and tragic.
Though I know that going to bed at a regular time
contributes to good neurological health, I often stay up late, thinking that if
I just squeeze in a bit more work or one more TV show, I’ll somehow have gotten
more time out of the day.
So much of my life is tied to the mystery of time, including
a self-esteem reliant on a sense of accomplishment and recognition. If it
weren’t for this damned time, I could do so much more!
Defeating time is the avenue to feeling powerful, and toward
the goal of defeating Huntington’s disease.
Ultimately, to defeat time is to defeat death itself. This desire
is a not uncommon phenomenon as people age, but the specter of HD makes it
unavoidable.
Counteracting anxiety
To counteract the anxiety about time and HD, I have employed
some key strategies. I work with a psychotherapist, take medications to stave off anxiety
and depression, and subscribe to the philosophy of Don’t Sweat the Small Stuff … and it’s all small stuff. I also try to exercise, live in the moment, and to
connect with my spiritual dimension, for example, by attending Mass.
When brushing my teeth seems to take forever because I’m
anxious about getting to a seemingly more important upcoming activity, I try to
remember the advice of the Vietnamese Buddhist monk Thich Nhat Hanh to savor
the simplest of experiences as part of the process of life.
I’ve also sought wisdom about time from the scientific minds
of our era.
However, after reading biographies of Stephen Hawking and Albert Einstein,
I’ve understood clearly how we are in the infancy of defining and comprehending
the dimension called time.
We can’t even perceive time with our five senses – except
for the fact that our bodies age and diseases like HD take their inevitable
toll.
A terrible delusion
Last month, in a conversation with my psychotherapist, I
came to the healthy realization about how I have deluded myself about tricking
time.
A few weeks later, I departed with my family for a
three-week trip in Europe.
Once again, vacation time provided me with a small but stimulating break from the routine of work
and the challenges of living at risk for HD.
Amidst the excitement of visits to cities like Berlin,
Prague, and Vienna, I maintained my daily morning meditation.
As we whisked through Europe, the mystery of time once again
loomed.
I wanted to stop time so that the great moments with my
family would never end.
A revelation
However, during one moment of meditation, I had a mini-revelation
about time.
I told myself: “You cannot trick time. You must be with time and part of time. You cannot go against time. You must accept it. You
must flow with it.”
In the days since, I have felt a renewed sense of peace.
I don’t believe outcomes are preordained, but I do feel that I must no longer resist the
flow of time.
I cannot extend my time. I must live with the amount I have
as best I can.
I must approach life, including the threat of Huntington’s
disease, with acceptance, even as I strive daily to make a difference.
Although scientists are working feverishly on potential
clinical trials, treatments may not appear in time to save me.
