022115_What-Having-Heart-Disease-Has-Taught-Me_Mayes

I’m often asked what it’s like to live with heart disease. For me, the physical limitations have been much less difficult to manage than the emotional and psychological ones. Heart patients are cautioned about becoming “cardiac cripples”—overly anxious and worried about their future to the point that it affects their health.

Yep, I’ve done that.

Like most people living with a chronic illness, I teeter somewhere between complete denial and painful reality. One minute I can’t stomach thinking about the tests, medicines, hospital visits, and so on, and the next I research compulsively on the Internet how to get an appointment at the Mayo Clinic.

Heart disease has been part of my life for as long as I can remember. There were suspicions that my fainting spells as early as age eight were related to my maternal grandfather’s sudden cardiac death while brushing his teeth one morning. But it was the 1960s and heart disease was thought of as something that afflicted men—nothing of concern for women, much less little girls with pigtails.

By the time I was in college, my symptoms—dizziness, palpitations, shortness of breath—were common. I tried to ignore or wish them away, but I knew in my gut that something wasn’t right.

One day I was forced to face the truth.

It was a muggy day in Washington, D.C., and I was riding the subway to meet a guy after work. I remember looking at my watch and seeing that I was running late. Out of nowhere, I felt sharp pains and horrible palpitations. It felt like a horse kicking the inside of my chest. Then like a butcher pounding meat.

I started to panic.

There was no rhythm to the beats. They hit as randomly as tennis shoes in a dryer. Looking down, I saw the buttons on my blouse jiggling in sync with the beats. I coughed, held my breath, leaned over, stood up. Nothing helped. I was paralyzed with fear and trapped underground.

I dropped my newspaper and looked around at the total strangers, workers heading home from their jobs on Capitol Hill. Feeling faint, I inched off the subway seat onto the floor. One guy reached out his hand to help me, but I shooed him away.

“I’m trying to find my glasses,” I said, and faked a smile.

“When people ask me what living with heart disease has taught me, it’s this: Kick the voices in your head to the curb and live each day with fresh eyes to the very best of your ability.”

At the next stop I stumbled out of the subway and took a cab to the ER, where they told me I’d had a heart attack, then retracted the diagnosis after I explained my family history and bouts of fainting spells. I was discharged at 4 a.m. and admonished to “see a cardiologist as soon as possible.” The next week I would be diagnosed with hypertrophic cardiomyopathy—a rare, inherited heart condition most often associated with sudden death in young athletes.

In a dull voice, the doctor told me what to expect: shortened life expectancy, two or three medications, probably no children, limits on physical activities, abnormal heartbeats, and yes, a high risk of sudden death if my heart gyrates to the point that it stops. It was a lot to take in, but I didn’t start crying until he left.

Fast forward 25 years, and most of these physical limitations never happened.

That’s the good news.

“As I approach 60 and start a new career that keeps me traveling around the world, I realize with great satisfaction that I’m living a much bigger and better life than I ever imagined. And having heart disease is part of it.”

But my identity, my sense of myself as a “heart patient,” has done damage. I let it distort my body image, sexual performance, exercise capacity, partner appeal, diet choices, sleeping patterns, desire to have children, and even my ability to manage money. Why save for the future when there might not be one?

When people ask me what living with heart disease has taught me, it’s this: Kick the voices in your head to the curb and live each day with fresh eyes to the very best of your ability. Your path in life is unlike anyone else’s, even those who wear the label “heart patient.” We all live with labels, and it doesn’t do any good to pile on top of them your own limiting beliefs and preconceived ideas about what they mean. It keeps you from living the life you were intended to live.

As I approach 60 and start a new career that keeps me traveling around the world, I realize with great satisfaction that I’m living a much bigger and better life than I ever imagined. And having heart disease is part of it.

For more information on heart disease and women, go to www.womenheart.org or www.hearttruth.gov. For more information on the signs and symptoms of hypertrophic cardiomyopathy, go to www.4hcm.org.

To find out about Rose’s thoughts on how to live a happier life, click here

15 Comments

  • Tara Green
    Posted February 20, 2014 7:57 am 0Likes

    Not at all what I expected–and hugely inspiring and illuminating. Thanks, Gwen!

    • Gwen Mayes
      Posted February 21, 2014 5:55 pm 0Likes

      Tara, Thank you for your feedback. In a way, I know what you mean — it wasn’t what I was expecting either! Best health, Gwen

  • Sandra Bugalski
    Posted February 20, 2014 4:16 pm 0Likes

    A wonderful reminder of all of the huge possibilities of life, even for those of us with heart disease. I needed this today, thank you!

    • Gwen Mayes
      Posted February 21, 2014 5:57 pm 0Likes

      Thank you, Sandra, for reminding us of how rich and vast life can be. I hope today is a good one for you. Best, Gwen

  • Marianne Lawrence
    Posted February 20, 2014 7:54 pm 0Likes

    Your feelings resonate to the heart of all who have walked your path. Bravo Gwen Mayes!

    • Gwen Mayes
      Posted February 21, 2014 5:58 pm 0Likes

      Thank you for all you’ve done for women with heart disease, and I put myself at the top of the list. Forward, Gwen

  • Eve Zavodnick
    Posted February 20, 2014 9:41 pm 0Likes

    This was a wonderful article. It illustrates for all of us with heart disease that we may have an illness, but it doesn’t have to have us.

    • Gwen Mayes
      Posted February 21, 2014 6:01 pm 0Likes

      Eve,
      I am pleased that you liked the article and I’m sure you can relate in some way. No, an illness is not who we are . . . just one part. Thank you for your message. Best health, Gwen

  • Carolyn Thomas
    Posted February 20, 2014 11:11 pm 0Likes

    Thanks Gwen! I’m so glad you included this important statement: “For me, the physical limitations have been much less difficult to manage than the emotional and psychological ones.” I’m going to go embroider that on a pillow… 😉

    After I survived a heart attack, not one doctor/nurse during my hospital/CCU stay offered me the slightest warning of how common this emotional/psychological fallout actually is for those living with heart disease. Even in cardiac rehab where we had weekly guest speakers, the cardiac social worker was the final speaker scheduled, almost two months into the program. Desperate, anxious and exhausted by that time with ongoing pain and other symptoms, I asked her WHY on God’s green earth aren’t you telling heart patients about common psychosocial issues sooner rather than later so we don’t feel like we are somehow losing our minds? She replied: “Don’t want to scare people off!” Great. Better to leave them in ignorance, thinking they’re the only ones suffering like this. As Alaska author and cardiac psychologist Dr. Stephen Parker (a heart attack survivor himself) likes to say:

    “A heart attack is a deeply wounding event” – and he’s not just talking about heart muscle damage.

    One of my blog readers told me that her cardiologist warned her that he did not “allow” his patients to become “cardiac cripples”, as if this outcome reflected poorly on him instead of being the unique lived experience of the patient.

    I loved visualizing you able to “kick those voices to the curb” – but I’m betting you were not quite so able to do that in the early weeks/months following your diagnosis. And you’ve started what sounds like an exciting new job at almost-60 – a reality that’s virtually impossible for many living with ongoing debilitating cardiac issues every day.

    Some days, it’s literally all I can do to take a shower and wash my hair – not because I have a poor attitude about kicking voices to the curb – it’s simply the reality of my diagnoses.

    That’s why it’s as important to both celebrate the accomplishments of heart patients living a full life while travelling around the world as it is to celebrate the far smaller milestones that others far less fortunate are capable of achieving.
    regards,
    C.

  • Gwen Mayes
    Posted February 21, 2014 6:04 pm 0Likes

    Dear Carolyn,
    Thank you for taking time to leave a comment and for sharing your story. Every patient’s is different but I think we are all alike in dealing with the emotional issues. It can be more troublesome and scary than the real life physical ones. I applaud you for raising your voice to make sure doctors and nurses think of the mental and emotional health of their cardiac patients. It is so important. Keep the spirit; you sound remarkable. Best health, Gwen

  • Michael Burton
    Posted March 3, 2014 12:40 pm 0Likes

    Thank you for writing such an inspiring story– I read part of it to my 11-year-old son!

  • Joey alvares
    Posted March 25, 2014 7:13 pm 0Likes

    Thank you for the great positive encouraging post. I’ve been feeling down lately and this picked me up. Made me realize there is life after HCM. I’m a 35 yo male who dwells with the pain inside. Thank you for giving us hope. God bless you.

    • Gwen Mayes
      Posted March 30, 2014 12:25 pm 0Likes

      Joey, I appreciate your comment and am glad to know that it may have helped lift your spirits. It’s so normal to get down at times and the “pain” inside can be twisted. I wish for you all the best; remain as positive and hopeful as you can.

  • john donkin
    Posted March 29, 2014 5:49 am 0Likes

    Thank you for giving me such an insight to the illness, ny father died 2 nonths before i was born with this illness, and ny brother has inherited this disease and is now coming up to the age of what my father died, its so very scary I could lose him at any moment in time to this the same as my father, but hopefully the medical care and medication has come much further than the late 80s and can and will give my brother the best fighting chance possible, he dont really talk about it much do its nice and also scary to get a little insight into what is going on and how it affects people with this disease

  • Gwen Mayes
    Posted March 30, 2014 12:28 pm 0Likes

    I was so touched by what you wrote and am sad to know that your father died even before your were born, no wonder you think about it as your brother becomes the same age. But, John, the medicine and knowledge has progress so much and there are specialists who can treat the symptoms and long, healthier years are ahead. Remain hopeful!

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