A letter from your heart disease

~ Carolyn Thomas

To whom it may concern. . .

Congratulations! You have been selected to be the host for heart disease. You will begin to experience many or all of these symptoms — and may even deal with several of them all at the same time.

  • Pain! We are equal opportunity destroyers, therefore we will choose many places for you to experience pain. We have even devised many different types of pain, but we’ll throw in some nitroglycerin to keep your mind off the pain temporarily. We are continually improving our repertoire of pain categories, so expect updates.
  • Mental confusion: This can be accompanied by embarrassment, memory loss, shortness of breath, poor co-ordination, inability to concentrate, and sensations of confusion or even having somehow lost your sense of self. We try to simulate the experience of riding a never-ending roller coaster to satisfy your adventurous spirit. No safety harnesses required, and you have no choice of when the coaster ride starts, ends, or how fast it goes.
  • Extreme fatigue: Now remember, this is not just feeling tired. We will suddenly pull your plug, so to speak, and you will have no energy at all. Even dressing or taking a shower may be too daunting a task for you to complete. And because we like surprises, we will not give you any advance warning, so you could be in the middle of the grocery store, at work, or chatting with your friends over lunch.
  • And speaking of feeling tired, we’ll make sure that in the early days when you’re trying desperately to make sense out of a diagnosis that makes no sense, we’ll supply plenty of opportunities to experience the situational depression that we like to offer all freshly-diagnosed heart patients. We’ll affect your ability to sleep, to plan for your future, to care about the things you used to care about, to understand the swirling emotions of heart disease. Depression and anxiety will become your new best buds!

In addition to the symptoms above, we also want to eliminate some things from your previously crowded life. Here are a few of the things which will be taken away from you now that you have been chosen to have a chronic and progressive condition:

  • the willingness to be a martyr by always putting yourself last, and to say YES to everything anybody asks you to do even when you don’t want to/can’t do it
  • the ability to complete any task which requires more than 10 minutes of concentration; multi-step activities or long-term projects will take 2-3 times longer then average
  • the ability to have a ‘normal’ social life.
  • the ability to work all that unpaid overtime, go into the office on weekends, and accumulate sick days to earn the perfect attendance bonus

As indicated previously, this condition is in constant flux and more symptoms will be added as we deem necessary. There is no warranty guarantee, technical support, or customer service available.

Sincerely,
Your Heart Disease

♥ ♥ ♥ ♥ ♥

Dear Heart Disease,

I would like to clarify that, while you may wreak havoc on my body, and likely even confuse my mind, you cannot have my soul, my hope or my love. There are, in fact, a number of things that you have given me, things I never could have experienced had you not come to possess my body.

You have given me:

  • the ability to tell the difference between acquaintances and true friends
  • appreciation for my awesome family
  • the resolve to turn my own curiosity into a step in helping others
  • the wisdom to seek professional help when I needed help
  • expertise and knowledge about a complex condition
  • renewed interest in slowing down and smelling the roses
  • more compassion for others who are suffering 
  • increased knowledge of my own body and health
  • a reason to eat better, exercise and take care of myself
  • reasons to rest when I need it
  • gratitude for the kind, smart and committed physicians who help to care for me, and for the fact that I live where I do (Canada!) where I can enjoy world-class affordable cardiac care (especially because I know that not all women can say this)

You will not find me to be an agreeable host. On bad days, I will take care of myself. I will try not to whine. On the good days, I will try not to be smug, or act like improvements are due to any special skills. I will learn to take advantage of and savour the precious moments, especially spending time with our darling grandchild, Everly Rose – who I honestly never thought I’d live to see.

You have thrown some obstacles into my life, but I have learned a lot so far about trying to get over them or around them – and also learning to adjust to those that, frankly, just won’t budge. In fact, while I am figuring these obstacles out, I may just stop for a moment to reflect upon this mountain I am climbing, plant a few seeds, relax – and then continue on.

I will learn from this experience and try to help others.

Sincerely yours,

Carolyn calligraphy

 
.Carolyn Thomas, HEART SISTERS
 
This post first appeared on Heart Sisters on July 21, 2009. I wrote lots more about life as a heart patient in my book “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press).  You can ask for it at your nearest library or local bookshop or order it online (paperback, hardcover or e-book) at Amazon,  or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 20% off the list price).

♥

Q: If you wrote a letter to the diagnosis you live with, what would you tell it?

 

Published by Carolyn Thomas

30 thoughts on “A letter from your heart disease”

  2. I am a bit confused, it seems that coronary artery disease is not a cardiac event and the stents also seem to be unnoteworthy. You have to have had the heart attack i fear to be considered as a person with heart disease. Should i step aside and worry no further? My cardiologist seems to believe this too. It seems i am the only one concerned.

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    1. Hello Jill – anybody who has had one or more coronary artery blockages, or a heart arrhythmia, or heart valve procedures, or congenital heart defects, or heart function problems like heart failure, or open heart surgery, or an infection that’s affected any part of the heart, or any number of possible medical issues concerning the heart is considered to have heart disease. It sounds like your coronary blockages were discovered in time to prevent a heart attack, which is a pretty lucky thing for you. Heart disease isn’t a competition – although it may feel like that when we start comparing (as one man in my cardiac rehab class told me when I told him I’d had one stent implanted: “I have THREE stents!!”) Nobody gets a prize for having worse outcomes than another person. I wrote more on this here.

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  4. The difference in physical symptoms between male & female is interesting. Wondering if it has anything to do with estrogen / testosterone levels.

    Case in point is a male friend who ‘normally’ runs a low T level and very high E readings (for a male), discovered his “Seriously large” MI after an investigative angiogram, brought on by diminishing stamina and increasing breathlessness.

    Verdict was several arteries “completely blocked” and significant paralysis of heart wall.
    Ended up with 5 by-passes, and is adamant that he remembers NO pain or significant symptoms such as jaw, arm or chest discomfort.

    And you’re right, he’s depressed and stressing himself into another one! – Nine months of improvement and last 3 months sliding down. Again.

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    1. Well, we do know that hormones might play a role (women’s risks of heart disease tend to be lower than men’s until menopause, when we overtake their risk).

      No wonder your friend is depressed! I believe it’s far more stressful to have major heart surgery – but without accompanying warning symptoms. Everything about that scenario makes zero sense to him. You didn’t mention if he actually had a heart attack – this is more common in men (multi-vessel heart disease, triple or quadruple or quintuple bypass surgery after minimal symptoms – and no heart attack, as if the intervention helped to prevent that heart attack). It’s entirely understandable that he would be depressed, anxious and a wreck. I hope he went to cardiac rehabilitation (not to late to go now if he did not attend yet) and/or is seeking professional counseling support.

      PS I think it’s so perfect that the last two reader comments are written by people named Love and Hope… 🙂

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  6. Wow, Carolyn, I hadn’t read this post before you reprinted it here. Really great thoughts!

    It reminded me of something I wrote in the newsletter I used to do for our homeschooling support group, which I led for many years. I had actually forgotten all about this piece until two days ago when I ended up finding it again kind of by accident (interesting timing!).

    I was writing about the conflicting emotions we have while watching children grow up, how we are happy they are maturing while missing the fun things they did when they were little, but these thoughts are kind of echoed in your letter to heart disease:

    “With every loss there is a gain, and with every gain there is a loss. The half empty cup is also half full. We just need the right perspective to see this before we can quench our thirst.”

    Yes, heart disease is hard, and I wish I didn’t have it. It’s not what I would have chosen for my life, but here I am and I might as well make sure something good comes out of it. As I shared once with a group of cardiac rehab graduates, I never once woke up in junior high and thought it would be a wonderful thing to be a heart patient someday.

    There are a lot of things I would never have chosen for my life. But any hardship or suffering can work good things into us too, such as you wrote — make us stronger, more compassionate, make us take better care of ourselves and live more mindfully, mature us in ways we never dreamed possible, etc.

    So now I’m leading a support group for heart patients and trying to bring healing and life to my corner of the world as much as I can. I guess one thing I would write to heart disease is that it won’t keep me from helping others, as you wrote right at the end of this post.

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    1. So many excellent points, Meghan! Loved the observation from your junior high quote!

      And this, from your newsletter: “With every loss there is a gain, and with every gain there is a loss. The half empty cup is also half full.” Trouble is, when we are right in the thick of it, it can be really tough to remember that truth! I think this is one of those truths that we get only in hindsight…

      Keep up the good work bringing “healing and life” to your corner of the world. ♥

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  7. I would tell my diagnosis: don’t let a physician’s diagnosis destroy you. Profiling in all forms is dangerous. Between you (heart), and me (body and mind), we’re going to do what we can to keep living. To enjoy. To stick it to fear and anxiety as much as possible. To stick it to a profiling medical profession as much as possible.

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  8. My heart attack was in December and recovery is a lonely place. Reading the above letter made me smile and think that I am not alone and not the only one experiencing these things. It helps.

    Lindsay UK

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    1. Hi Lindsay – you are still in relatively ‘early days’ yet (about five months). Many women have found that the first year following a cardiac event feels like the toughest. I’m hoping that once you celebrate your first ‘heart-iversary’ in December, you’ll be in a difference place and feeling less lonely.

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    2. It shouldn’t be lonelier than necessary, should it. Many are given the impression that there will be a team, (of the medical, psychological support type), “with” them. HA. I say, “HA.” I think a healthy dose of, pardon the blunt, “WTF,” along with exposing medical and social complacency, as one is able, would help. (I’m not talking about walks, runs, and t-shirts – which accomplished nothing, in my opinion, except to fill coffers). Maybe a signed declaration of expectations and rights, to be presented at any encounter. I mean, if we’re just all whacky, despite cardiac difficulties, or becomes of them.. it seems to me there is value in showing unity, and not complacency. (Big talk. Full moon. Another poor ER experience). I hate it that you feel so alone in this.. I hate it that you, me, anyone, is too often left to the internet. (But thank goodness that C.T. has created this presence.

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  9. Wonderful piece written with heart and humor. This is a must-read for anyone with heart disease. Thank you, Carolyn, for continually finding inspiring ways to inform all.

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  10. Thanks for repeating this! It’s the piece I reread most often and always gives me courage and strength to live in the moment and appreciate my blessings.

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    1. Good morning, Joan – it’s funny you should mention rereading blog posts. I decided to revisit this one (nine years after I first wrote it!) because another reader had recently told me the same thing (“remember that post you wrote long ago about the letter from heart disease?” ) including the fact that she has continued to reread it over the years – whenever that roller coaster was going way too fast…

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  12. You are one amazing lady Carolyn! Your articles are thought provoking and always speak to my soul. In your book, “A Woman’s Guide To Living With Heart Disease”, I traveled your journey with you because my roller coaster of emotional challenges were the same as yours. I can’t thank you enough for your gift of putting into words what most women with heart disease experience!

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  13. A thought provoking question posed too… Something good to work on.
    Writing always makes me feel free, like a bird that sails in air.. it allows thoughts to float away…

    If it’s ok to share… These are a few couplets I composed recently regarding my current condition…

    “As the challenges extend in width & depth

    I will fight for every breath until death.

    In reality

    My heart is exemplary

    To that of a weak battery

    Causing the tick tock of a clock

    Sometimes moving backwards

    Other times forward

    Unknowingly upon which spot it would stop

    Or a date that will hold a final fate.

    These couplets are NOT to lament or vent

    Rather, actual facts

    Of the main organ within my chest

    A test

    Which allows no rest

    Patience shall not waver, lest

    I am deprived of being rewarded with the best”

    (Sorry for my long comments always, lol.. I feel heard & understood here)

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  14. WOW!! What an apt post is all I can say. Every single thing, phrase mentioned there… Describes it perfectly!!! The fatigue, the pain, things taking longer than normal to do…

    Thank you so much for this post.. I’ll be sharing it along to family & friends to get an idea…

    💖💙

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    1. Thanks Kay – I suspect that sometimes family and friends who find it difficult to understand what we’re experiencing (hey, WE find it difficult to understand too sometimes!) may have an easier time when reading about other people’s experiences…

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