Sarah of the Moment

By Sarah Ing


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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We would like your feedback. Please comment above about this article and your suggestions for future articles. We ask that all articles are relevant, that common decency prevail, and that any factual statements be verified for accuracy. If you are sending comments on a feature, please reference the title in the subject line. Our goal is to bring useful and interesting features to you in future months.

PHCentral is committed to the expression of diverse opinions from members of the PH Community.

We feel strongly that free and open discussion regarding PH will assist in the generation and the refinement of new and existing ideas. To that end, we provide the opportunity for anyone from the medical and patient communities to submit editorials, letters to the editor or short articles on a PH-related topic. We will be encouraging opposing points of view. Areas may include treatments, causes, advocacy, disability, etc.

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