“I Simply Have to Put All My Energy into Hope and Life, Rather Than Trying to Avoid Doom and Death.”

Interview: Amy Silverstein.

Amy Silverstein is a writer who has written extensively about her very tough health challenges. Her acclaimed, award-winning first book, Sick Girl, explores her experience as an organ-transplant recipient — she was a law student when she received a heart transplant.

Her riveting new book, My Glory Was I Had Such Friends, just hit the shelves. It’s about her experience twenty-six years later, when she needed a second heart transplant. To have a chance to survive, she had to uproot her life to go to California, and the book is a tribute to how her squad of nine close friends put aside the demands of their own lives to support her. Her account is a terrific example of how love and friendship can sustain us.

Her story is a great reminder: If you support organ donation, sign the registry! Tell your friends and family you want to donate your organs! If you’ve ever considered doing a “random act of kindness,” here’s one of the most random, most kind, and also most convenient acts you can ever commit.

If you want to know why I care so much about this issue, you can read about my husband Jamie’s experience, and one of the happiest days of my life, here.

I was very eager to hear what Amy had to say about happiness, habits, and health.

Gretchen: What’s a simple habit that consistently makes you happier?

Amy: An hour of intense exercise – six days a week.

Good sleep – seven nights a week.

Breakfast (preferably Wheaties – it’s the Breakfast of Champions, after all!) – every day.

What’s something you know now about forming healthy habits that you didn’t know when you were 18 years old?

The years have taught me that healthy habits are about choice—at least at first—and that I have the power to decide to control my choices every day in every way.  Part of growing up, I think, is about discovering self-control.  This is not a completely positive discovery; I mean, watch a three-year-old eat an ice cream cone and you might feel nostalgia for that utterly joyful, face-smearing, shirt-staining abandon.  But, for the most part, growing up and growing into self-discipline is, I think, a big part of habit-forming and happiness.   And the payoffs are huge.  For me, the payoffs may be part of the reason I am still alive nearly 30 years after receiving a heart transplant at age 25.

I couldn’t know at 18 that habits were based in deliberate choice.  I didn’t give any thought to healthy habits back then.  Good health was a given, or so I thought.

Then I became suddenly ill at 24 and needed an immediate heart transplant (doctors said a virus had attacked my heart).  I was told that my life expectancy post-transplant might be ten years if I was lucky. Because of the nature of transplanted hearts and the medicines required to sustain them, the risks to my survival were described to me as a dreaded trifecta:  artery disease, cancer, and deadly infection.

As I saw it, I had no choice but to form healthy habits—fast.  And keep at them—forever.  So I made a decision to exercise vigorously six days a week; no doctor told me to do this.   And further, I decided I would eat a diet very low in unhealthy, saturated fats; again, this was not on any doctor’s advice.  It just seemed to me that if my arteries were at risk due to transplantation, I should not fill them up with cholesterol.

Now, you might think, Well, you have enormous health risks—of course you are going to choose and stick to healthy habits.  But I have met many grateful, smart heart transplant recipients, young and old, who do not strive to make the choices I have made, or who make them half-heartedly (no pun intended) and bend or break them regularly.  I never do.

I can’t know if, had I not received a heart transplant in my early 20’s, I would have grown into the habits I’ve chosen and kept them going strong and consistent for decades.  But I’d like to believe that even for those who are healthy, a habit must begin with a strong belief that this habit will make a positive difference.  And when this conviction meets awareness that we control only ourselves in this world, (because, really, who else can make your legs run or your hand reach for a doughnut) then we can choose our habits, form them, and live them.

Heart transplant or not.

Do you have any habits that continually get in the way of your happiness?

I’ve tried over the last couple of years to break habits that make me unhappy.  With this second heart transplant, I found an opportunity to press the reset button and give up habits that, on reflection, caused me more harm than good.

For instance: journal writing. Over my 26 years with the first transplanted heart, I wrote in a journal every night, continuing a practice I had started in high school and carried over to college and law school.  But while my pre-transplant journals were full of life and hope, the entries during the transplant years quickly became a litany of medical woes and fears—more like a terrible medical chart than a jotting down of adventures and aspirations.  Soon, it became a sorry habit: get into bed, write down of all my symptoms in detail, and add any new medical fears to the long list in the back of the book.  My intention was to be a smart patient—keep careful watch so that I might save myself from the transplant dangers that threatened to take my life.

Several times, my journal did just this: made a lifesaving difference in my medical care.  My careful records allowed me to be a full partner with my doctor.  Sometimes even supplant my doctor.

But mostly, the daily habit of writing was a sad reminder of how challenging my body was, and how hopeless.  And when, finally, I did become critically ill and needed another transplant, I realized that my journal had not helped stave off the inevitable.  I learned that no matter how carefully I had watched and documented all aspects of my body and its health, the unfortunate fate of my transplanted heart’s demise played out anyway.

So, now, after this second heart transplant, I do not write in a journal anymore.  I am still a careful and observant patient, sure, but not a habitual recorder of my body’s ills.  I know now that habits are not going to save me.   I simply have to be courageous and put all my energy into hope and life, rather than trying to avoid doom and death—come what may.  My new motto (a habit in phrase form):  Che sera sera.

Which habits are most important to you? (for health, for creativity, for productivity, for leisure, etc.)

For creativity and writing, my most important habit is getting all other activities out of the way—i.e. my morning run, all emails and calls, a shower, Wheaties breakfast of champions—and then setting myself up for serious writing.  This means creating a specific environment and my place in it so that my unconscious knows it’s writing time.  Here’s where habit takes over.

I put on a robe that my husband bought me for me a few years ago—put it right over my clothes.  It’s my writing cloak, of sorts, and it triggers my mind to settle in.  I turn on a Himalayan rock salt lamp that sits on my desk (a gift from my son), switch on the lamp beside it and—now comes the most important part—plant my butt in the desk chair.  I mean plant it—for hours.  I’m talking six or seven or eight, with only a quick break to grab a yogurt, which I eat at my desk while working.

For me, the habit of creating and entering a specific writing environment is the only way I can get myself to face the empty page, and fill it.

Would you describe yourself as an Upholder, a Questioner, a Rebel, or an Obliger?

I am an Upholder, for sure.  But as a person who has had serious life-threatening health issues since my early 20’s, I find that expectations directed at me from the outside are not particularly high.  In fact, they often come with provisos like Only do what you can do—don’t push yourself.  And I suppose this is apt, because during my first 26 transplant years, I was only able to actually achieve about fifty percent of what I set out to do.  So, friends and family and even employers went easy on me. But I never went easy on myself.  My achievements—including finishing law school after my transplant, passing the bar exam, working in law, writing a successful book, hiking mountains, running miles, etc.—went way beyond what anyone expected of me.

And now, after my second transplant, when I feel so much better than after my first, my expectations for myself are quite high.   It is easy to do what you set out to do, I think, when you feel well.  It’s a gift, in fact.  And I do not waste one minute of this gift.

People around me are beginning to notice that these years after my second transplant (there have been 3 of them so far) are different from the earlier ones, and so they are beginning to expect more from me.  To meet their expectations now (and, even better, to exceed them) is my great delight.

How have you viewed habits as part of your health experience?

I’ve chosen healthy habits over the last 30 years based on my hope that they will make a difference in my health.  Of course, this hope has to be set against a background of the medical challenges and shortened life expectancy that are my heart transplant reality.  But still, I’ve felt that if I apply healthy habits with absolute rigor—run that extra mile, pay attention to every tiny detail of my care, take every medicine every day, eschew artery-clogging foods, etc.—I can make a positive difference in my survival.  Well, to be honest, I’ve hoped to make more than just a positive difference; I have hoped to save myself from serious illness and death.

But you know, in spite of all the habits I devoted myself to with diligence and fervor for nearly 3 decades, my heart still succumbed to vasculopathy—the common artery disease that is a deadly heart transplant scourge.

So, now what?  How do I view my habits now that they have disappointed me?

I am so fortunate to have a second heart transplant.  Automatically and out of inured habit, it is natural that I delve into the same healthy habits that characterized my first 26 heart transplant years, because I love and value my donor heart and I want to live long.  But now I know that my health-promoting habits, admirable as they may have been, did not protect me as I had hoped.  Doing my all and doing it diligently did not prevent vasculopathy from invading my arteries and nearly killing me.

What do you do when life shows you that your healthy habits have no efficacy?

 This question applies to everyone, of course.  What happens when you develop and excellent study habits and apply them for months and months, and still, you fail the exam?  Or when you eat healthfully and sparingly and you exercise consistently, and then, a month later, you get on the scale and see no weight loss?

I do not have an answer to this.

Efficacy is all, as I see it, when it comes to assessing our habits in hindsight.

But a transplant cardiologist told me this recently:  “Amy, your extreme healthy habits are the reason you defied the odds and lived 26 years with that heart.  Given the available science and medication when you were transplanted in 1988, a generally healthy lifestyle would have gotten you 8 years, maybe 10.  Fifteen would have been amazing.  But 26?  That’s extraordinary, and that’s all you.”

The vasculopathy was inevitable, he said, because the transplant medicines back in the 80’s weren’t advanced enough to target it early on.  The appearance of artery disease was inevitable; no health habits could have won this battle.

And so, what now?

New medicines.  New treatments.  New hope.

I return to my healthy habits with renewed vigor and hope.

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