Chapter One: Begin the Journey
I am a cardiac psychologist. For nearly twenty-five years I have been helping people recover from heart disease by teaching them and their loved ones how to contend with the emotional ravages of the illness. This book is the fruit of countless hours I've spent with thousands of heart patients and their families -- men and women like you, with loved ones like yours. My message will knock your life back onto its feet because I'm going to tell you something about heart disease you may not have known before: it's not the severity of the illness but how you cope with it that will determine how long you will live and how happy you will be. Not only can you survive heart disease, you can actually thrive with it for many, many years. In fact, if you cope well and follow the advice I give you in this book, you can live as long as you would if you didn't have the illness.
That's right: you can live as long as you would if you didn't have the illness. And you can lead a full and vibrant life, a life of challenge and discovery. You don't have to live like an invalid, propped up in a corner of the couch while your days diminish into a series of bland, limited routines. You don't have to tiptoe through your nights and days, anxious that a backfiring truck or a spin on the dance floor will throw you into the hospital with a heart attack. And you don't have to suffer from New Age guilt because you couldn't swallow the diet of the month or stick with the latest exercise fad.
What you do have to do is acknowledge the gift you've received: the infinite bounty of a second chance. The fact that you are holding this book and reading these words confirms your place among the privileged, the lucky ones who got the wake-up call, resisted the urge to slam the snooze button, and chose to embark on the journey toward a newly conscious life. Because living with heart disease is a journey -- a journey forward toward the healthy life you were meant to live, not back to the one you were living when the illness struck. It's a journey you take one moment at a time -- breakfast by breakfast and conversation by conversation, embrace by embrace and, yes, conflict by conflict. It's a journey you'll be taking for the rest of your life -- which, I remind you, can be a long, long time -- and the people who love you the most get to come with you.
That's the thing that astonishes so many of my patients: the degree to which their illness is a family affair. Heart disease can cause a seismic shift in even the most stable relationships, rattling a family's foundation and leaving its members shaky and grim. It's always unsettling but worst when the illness strikes without warning, which happens more often than you might think: All known cardiac risk factors combined account for only three out of four cases of heart illness -- the others are attributed to unknown causes.
If you are like most heart patients, your notion of normal changed forever the instant heart disease invaded your world. Suddenly, nothing was the same for you or your family, and everything ended in a question mark:
• Am I going to die?
• Why did this happen to me?
• What happens now?
• How will we manage?
• Will things ever be the same?
You all probably have had to deal with unfamiliar people (doctors, nurses, rehabilitation specialists, technicians), unfamiliar places (hospitals, waiting rooms), and unpleasant experiences (procedures, tests, surgery). How you manage these experiences -- as a patient and as a family -- will determine the quality of your life and how long you hold on to it. Thriving with heart disease isn't only about a muscle, it's also about how you manage your emotions, your attitude, and the intricate web of human connections, secure and tenuous, that bind you to the people you love and interact with.
And thriving doesn't stop with family relationships: the way a patient interacts with others can determine how long and happily he or she will live. A married loner with no close friends, few acquaintances, and a not-very-serious heart condition may never recover fully, while a quiet person who lives alone but has vibrant friendships and cordial family relations may resume an active life even after a whopper of a heart attack.
That's what pulled Rena and Tom through: strong family relations. The topography of their marriage had changed forever three years earlier, when Rena suffered a myocardial infarction, or heart attack.
Tom stands well over six feet tall, weighs about 230 pounds, and has one of those steel gray crew cuts that makes some men look like unusually mature marines. They had come to my office to talk about how they as a couple were living with heart disease. As Tom rose from the waiting room chair, he offered a large, open hand to Rena. I was struck by her presence; her handshake was as firm as her gaze. Tom spoke first:
"It was simple: I knew Rena was going to die. I was so frightened of losing her, I didn't even allow myself to think she might pull through. I just wanted to try to prepare myself for the worst, so if it happened, it wouldn't be a complete shock.
"In the hospital, I just waited and waited for her to open her eyes. I kept wondering, why did this happen? Rena's family didn't have heart problems. I thought it must be a mistake, that they'd made the wrong diagnosis. The kids came every day, they took off from work...we surrounded each other with love; that's how we got through.
"Rena made it over the first hurdle -- she got out of the hospital. Then we had another surprise -- coming home. Boy, those first few months were a shock. At first I tried to do everything -- the cooking, the laundry, the marketing, everything. Then, later on, I slowly let her take over, little by little."
Now Rena looked up and began to speak:
"The first six months were the worst. Some mornings I'd wake up not caring about anything. One day, I didn't even fix my hair. I remember thinking I must be losing my grip; I'd always paid attention to my appearance. But I figured, what's the difference? I wasn't going anywhere, no one was going to see me except Tom.
"I also worried that I couldn't rely on my body anymore. One day I needed a blanket up in the linen closet, and I was afraid to get up on a step stool to get it down. I thought I'd lose my balance and fall -- off a step stool, for goodness' sake! So I sat down on the floor and cried for half an hour.
"And then there were the panic attacks. Whenever something felt different in my chest area I immediately thought, oh, no, something's happening -- another artery is blocking up, and I'm going to end up in an ambulance. For a few months, I was a nervous wreck.
"Tom and the kids were very worried about me. They didn't let me do anything, even things I wanted to do. One Sunday I got it in my head I wanted to clean out the pantry. It was the first time in weeks I'd felt like doing anything, and it made me happy. The kids were over that day, and, well, they wouldn't let me do it. The more I insisted, the more they fought me. I finally gave up and went to lie down, and Tom and the kids cleaned out the pantry. It took me three weeks to find the oregano because they put stuff back in the wrong place.
"Here they were, trying to spare me from stress and causing me so much aggravation I had to go lie down. I loved them for all they were doing, but I knew I could do more than they thought I could -- especially everyday, normal things."
As Rena and Tom learned, the future is seldom determined at the hospital. The vast majority of heart patients' futures develop gradually, like photographs in processing solution, as they return home and get back to normal -- a normal that may be a far cry from what they knew before. And that's precisely the point: when heart illness strikes, a person must abandon the well-trodden path he or she used to follow, blaze a trail, and begin a journey toward a new way of living. Heart disease is an invitation to create a different way of life -- a new normal -- that heals the heart by tending emotions and mending human connections.
As Tom put it, "We've been married for over forty-two years. We've grown up a lot in that time, and we're still growing. Living with this illness has taught us to keep things in perspective, to be more flexible, and to pay attention to each day we have together. When you do that, life gets better. You know how, early in marriage, sex is such a big deal? I still love sex; it's great. But intimacy is greater."
Starting the Journey
Living long and well with heart disease is like driving cross-country to get home for Thanksgiving: it's a long haul, but the party will be a lot better if you're part of it (also, once you're on the road, you'll realize you're not the only one out there). You'll have long stretches where you fly along, making great progress, but you'll also hit detours and obstacles that make you wonder if you'll ever arrive.
I promise: you can and will arrive if you follow the program in this book, which places in your hands the same tools and techniques my patients receive at the Wake Forest University Cardiac Rehabilitation Program. Your program starts now, as you open your mind and embrace two fundamental truths: first, that recovery is a journey you'll be taking for the rest of your life, not a signpost you rolled past when you left the hospital. And second, that heart illness will challenge you and the people close to you to open yourselves to one another as never before -- even when you feel incapable of a civil "good morning" -- and you must rise to the challenge and do it.
I know you can do it because I've watched others do it time and time again. Heart patients are my life's work, and this book is the crystallization of my commitment to you, your family, and your future. For many years I have wished I could hand my patients a talisman, a potent object that would keep them from harm and protect them from despair. This book is that talisman, a gift of hope to help you and your family defy the demons of heart illness and win.
Copyright © 2003 by Wayne M. Sotile, Ph.D.