 Sarah of the
Moment
By Sarah Ing
Once,
I almost inherited a million dollars. It was a misunderstanding, a single
skipped word on a page, a wish for something that might have been. For
a moment, I thought all of my monetary dreams would be fulfilled. The
idea dawned like a razor-sharp sunrise in my mind and sent me sprawling
onto the floor. I was giddy with happiness until I realized my mistake,
then I quickly sobered up. I remember that moment so clearly. Its crystalline
borders defined who I am. That and a thousand other moments. Isn't that
what our lives become, points of memory linked by our ongoing momentum?
In May of 1997, at
the age of 24, I was diagnosed with Primary Pulmonary Hypertension. My
pulmonary artery pressure (PAP) was high at the time, around 80, and yet
I was only slightly symptomatic. My internal dialogue told me it was a
mistake. Denial ran through me like the Mighty Mississippi, churning up
alternatives and sudden cures. But, as most of us know, it's not as easy
as that.
The million dollar
moment now stands shoulder to shoulder with a life's worth of recollections,
from my first standing ovation to climbing Big Bend's South Rim. The expansive
faces of Mardi Gras revelers in New Orleans crowd around the somber mourners
at my great grandmother's funeral. Each memory is meaningful. Each one
bears weight. Moments upon moments upon moments.
Used to be, I had
a sense of myself, a feel for the pattern I was weaving when the moments
were connected. It was braided with energetic displays, muffled humor
and free-spiritedness. Then, slowly, the pattern began to change. There
were occasional doctor visits now and failed hiking attempts. Right before
my eyes, my moments were being usurped. I could only watch helplessly
as my gait slowed. It was like moving my legs through knee-deep mud, trying
to master the ordinary. Stairs became something to be avoided. Window
shopping became a delay tactic to catch my breath. My friends dropped
away like petals from a flower, having seen my brightest bloom.
Then came the moment
that dissected my life into two distinct halves. The day my PPH was found,
I was relieved to be labeled "ill" not realizing the enormity
of my new burden. From then on, nothing was ever the same. I often wonder
how I would have dealt with that diagnosis had I known what was coming.
The borders of my
personality began to contract from that day onward. My voice quieted and
my arms ceased their boisterous flailing. An embarrassed smile often replaced
my gawky laugh. For me, it was an intellectual transformation, but it
was very much a physical transformation as well. I went from participant
to onlooker. I had no other choice. My racing heart and oppressed lungs
were in control.
Surprisingly I did
not crumble to the floor, like I had at that million dollar moment. I
shored up and stood my ground, convinced that I could master this disease.
Perhaps if I ate differently, thought positively and learned how to breathe
more efficiently it would all go away. This is a test of my fortitude,
I decided. I was always good at tests.
When people heard
I was sick, they called me "brave". Is it brave to keep waking
up each day because there is nothing else to do? Is it courage that draws
my breath in and out? Because I felt as far away from heroic as the Earth
from the Sun. I felt like a failure. I felt guilty and lazy. I felt like
I was going to die. I felt like I was going to live. I felt betrayed and
I felt like the betrayer.
But it was not a full-time
job, trying to figure out my PPH. It happened in the dark, between moments.
In real time, I got married and bought a house. I became a writer and
hosted a television show. I moved to Los Angeles and adopted two more
cats. By then, my physical struggle was a part of the landscape. It stood
next to me always, disguised as a post to lean on or a chair in which
to fall. Little by little, it wrapped me in a watery hug, beating an insistent
tattoo on my heart. And I could only watch as it sapped my energy and
swallowed me up.
For the first 3 ½
years after my diagnosis, my only treatment was Coumadin, a blood thinner,
and Digitek, a heart strengthener. The moment when I recognized the need
for additional help was long and drawn out. It consisted of increased
shortness of breath and lots and lots of time spent on the couch. But
the timing was good. A new oral medication called Bosentan was being tested
at Harbor-UCLA. A non-invasive, side-effect free treatment; sounded perfect
for someone like me. Now, my old doctor in Texas had told me about a pill
that was in development a while ago. But, that seemed an impossibility
at the time (I was still working on my "heal thyself" theory.)
Yet here it was, the potential miracle drug. I enrolled immediately.
My second heart catheter
required by the study revealed PA pressures of 120. Not surprising given
my distended neck vein and full-to-bursting head. For the first time,
I was scared by the numbers. They told me I was getting worse and I wanted
to hide. You've heard about the darkness before the light, the calm before
the storm? At this moment, I was stripped bare.
The first thing to
go was my vanity. Overalls replaced skirts. Hair lay limp. Nails went
unpainted. Then, my usefulness. Grocery shopping- out. Dish washing- gone.
A comfy living room chair became my haven where I sent out occasional
pleas for dinner. My weight rose and trips to the bathroom became endurance
marathons. I knew it was all leading up to something but had no idea what.
The answer came in
the most unlikely of forms. Happiness. Because in the midst of this unraveling,
this destruction of self, I let go. One day, I just exhaled my guilt and
regret and envy and inhaled acceptance. It washed over me, leaving a cool
clean pool just big enough to lie down. From then on, it was easy. All
I had to do was be still.
I was in the clinical
trial for 4 months before they put me on the real thing. Finally, in February
of 2001, I started a low dose of Bosentan. A month later, it doubled and
I waited. Here's where the miracle should happen, I thought. Any day now.
Loads of energy and strength just around the corner. Watch out mall, here
I come. Get out of the way, Jackie Joyner. Soon. Soon.
But, of course, you
cannot rush a miracle. There were some things to figure out first. When
I started taking a diuretic, I quickly dropped a whopping 40 pounds. Whew!
That made breathing easier. My dry cough disappeared and I could lie down
again without feeling like my head would explode. I still tired easily,
but I was used to it. Now, naps and window shopping were a part of me.
I got a handicapped sticker and began to tell my friends to slow down.
I stopped comparing myself to people on TV with their endless calisthenics
and glowing good health. I absorbed my down days and celebrated my good
ones. Most importantly, I learned to eliminate the unnecessary.
It was almost a year
later that I began to really feel an improvement from the Bosentan. I
noticed it suddenly when I was able to jump out of my car and retrieve
a bag that clung to my wheel. I was back in the car before I realized
how easy it was. Then, I took a flight of stairs without noticing. I walked
to the pharmacy. Can you imagine? Just because I could. No, it was more
than that. I walked because I wanted to. Because I had a well of energy
that had been depleted for so long. It was as if I had captured the moisture
from a soaking rain and it filled me to overflowing.
I am now 29 years
old. My illness ran parallel to my growing up. Diagnosed in my mid-twenties,
I faced the uncertainty of this disease like a matador facing its bull.
And I've learned much from my fight. Life doesn't always happen in extremes
and often experiences can overlap. Good health is relative and good fortune
even more so. I am a lucky person with a bright future and a tremendous
support system. I love and am loved. My time on this planet is valuable.
And I know now that the space in between moments is where the real meat
lies. The memorable parts are just the dessert.
When I was diagnosed,
popular prognosis was 3-5 years if untreated. This weekend, I celebrated
my fifth anniversary by throwing a party. It was a costume affair and
everyone was asked to come as their favorite survivor (pre-television
show). My guests arrived in a broad assortment of disguises. One was a
New York City fireman, another a carbonite-frozen Han Solo. There was
a Scarlett O'Hara and a Tina Turner. Someone even came as J.R. Ewing.
And as for me, well, my costume was simple. It was my party and my survival.
I came as myself.
June 1, 2002
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