by Carolyn Thomas ♥ @HeartSisters
One of the things I love most about writing this blog is hearing directly from my readers. I already knew that Heart Sisters attracts the smartest, funniest, and wisest readers ever, of course, but this comment from Charlotte in response to one of my articles really struck a chord for me. I’ve written before about this particular issue (i.e. why trotting out all those “inspiring” survivors to talk about their amazing post-recovery achievements can actually leave me feeling not so much inspired, but inadequate). Here’s how she says it so much better (Thank you, Charlotte!): . .
♥
“I have been a kidney transplant recipient for 22 years, and for most of those years was living a relatively healthy life and able to put my patient status on a back burner that only needed a little bit of attention.
“But, over the last seven years or so, several chronic (and painful, debilitating) autoimmune diseases are creeping in so that I am definitely living the patient life on the front burner once again.
“But what has really gotten to me when I’ve gone to some of the local Kidney Center/Kidney Foundation functions over the years, or when I read their publications, is that the patients they feature are the ones who go on to climb mountains and run marathons.
“I sat through one evening listening to one patient tell the story about how he climbed Mt. Rainier with his transplant doctor.
“Now, I get that’s an accomplishment – but it’s not a realistic, or necessarily even inspiring, outcome for most of the rest of us. This man had already been an accomplished climber before his transplant, so it is not exactly unexpected that he would continue to do so if he had a successful transplant experience.
“My point here is that this is not the story that most patients can expect.
“All I ever wanted when I was on that dialysis machine was to have a ‘normal’ life (and at the age of 26 that meant holding down a job, having enough energy to have a social life and volunteer in my church and community, having children, having enough energy to enjoy raising those children, and staying healthy long enough to raise them).
“And I did that!
“While those goals are nowhere near as glamorous or dramatic as running marathons, climbing mountains or skydiving, they felt just as difficult to me at times, and often insurmountable. I paid a high price to live the life I’ve led for the last 20 years.
“But it was worth it!
“I know there are so many others out there who are successfully fighting for their lives simply by fighting to live life as normally as they can.
“The medical community (and maybe even the rest of the world) needs to be aware of the extraordinary accomplishments that patients make every day, right in front of them.”
♥
Brava, Charlotte!
Whatever the diagnosis, we can spot this elevation of the heroic super-patient throughout society at all disease awareness/fundraising events.
At every Walk/Bike/Swim/Run for The Cure, we see triumphant patients featured onstage who have successfully “battled” their catastrophic diagnoses. There’s only one acceptable way to do survivorship at these events, and that is to win big!
It’s not good enough to merely get through the symptoms, treatments and recuperation of a debilitating, life-altering diagnosis. The best survivors are those who go on (or return) to newsworthy accomplishments like, against all odds, climbing mountains.
We rarely if ever see crowds at cancer fundraisers, for example, cheering for patients living with end-stage metastatic cancer being helped onto pink-bedecked stages, because organizers know that such patients are depressing to donors, and not really very inspiring (they’re “losing” the battle, after all) – and are likely too sick to attend in many cases anyway.
.
As cancer patient Dawn Lynn Goo once wrote:
“Is one person who manages to live four years into a diagnosis less allowed to be afraid than someone who doesn’t get diagnosed before their cancer has metastasized to their bones, brain, liver, kidneys or another organ?
“It breaks my heart to see one of my friends feeling defeated because someone has told them they should feel or act a certain way. It makes me angry to see someone post that they think my friends shouldn’t post photos of their surgery scars, or show “the ugly side of cancer”. Ugly side? Since when does cancer have a pretty side?
“You must be thinking of those pink ribbons again that have, sadly, done very little to help find a cure. Cancer isn’t pretty. It’s vile, mean, and ugly. It eats away at your body, zaps your strength, and often kills your dignity. It can make you angry, and it steals control over your life.”
Let’s hear it for all of the patients living with any chronic and progressive illness, all those who somehow manage to do anything at all other than what they want to do on a bad day (which is simply to hide under the covers). As Charlotte describes, a “win” can be as non-inspirational as being willing to put one foot in front of the other, and then trying to see if you can do it all over again tomorrow.
This realization that true wins are not limited to big heroic achievements is also why I began to change the way I reward myself the shiny sparkly stickers I use to track my daily exercise. ←Here’s a picture of one of my older calendar pages, for example. Stickers used to be put up only for each hour or so of exercise I was able to do each day (such as walking, biking, gardening, weight training, hiking, Zumba classes, whatever).
But as time passed, and as the daily distressing symptoms of my coronary microvascular disease diagnosis worsened, every blank space staring out at me was making me feel even more terrible, even though I knew spaces were blank because I’d been too ill to do one hour of anything that day.
Last month, I had not only daily cardiac symptoms to deal with, but two weeks of a brutal chest cold I could not shake. Why, I asked myself, don’t you give yourself a reward sticker especially on those rough days, when all you can manage is dragging yourself out the door for a (slow) 10-minute walk down to the village? Those are the days that are more deserving of a shiny sparkly sticker than on the days I’m feeling good, right? You did it, Carolyn! You got through a bad day, and you even managed a 10-minute walk! You go, girl!! Whoooop!
Don’t get me wrong.
I’m genuinely happy for you if you are able to reach laudable post-recovery goals like climbing big mountains. Surviving any serious health crisis is so tough and so beyond our control that accomplishments we are able to control are important and should be truly celebrated.
But can’t we acknowledge both ends of this spectrum? I’m equally happy for you if all you’re able to do some days is to get up, dress up and show up – even if you fall down right afterwards from the sheer effort of doing so.
Because on those days, as Charlotte wrote, just living life as normally as we can is a win, too.
♥
NOTE FROM CAROLYN: I wrote more about this topic in my book, A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press). You can ask for it at your 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 their code HTWN to save 30% off the list price).
Q: What small “normal” accomplishments are you most proud of during a tough day?
See also:
Non-inspirational advice for heart patients
Confessions of a non-compliant patient
The new country called Heart Disease
“To just be a person, and not a patient anymore”
‘Healthy Privilege’ – when you just can’t imagine being sick
Everybody has plans ‘til they get punched in the mouth
Living with the “burden of treatment”
Heart Sisters 
Carolyn, once again I am inspired to respond to your blog and this one really speaks to me!
I was an over the top endurance athlete who pushed myself harder every year even as I hit 50 yrs old. Eight years later, after open heart surgery, a pacemaker implant and a diagnosis of coronary microvascular disease (with no “heart disease”) I often find myself in tears for 2 reasons as I keep working at being fit – because I compare the new me to the old me, and because it isn’t so much fun anymore.
I have been told by every cardiologist that I have seen it is important to do what I can so I do, but….
To all us who keep putting one foot in front of the other, get our hair washed or ride around the block – You Go Girl!!
(And my proudest moment of a tough day is that after a day of being bedridden and pounding nitro, pain killers and ativan I can look out at a blue, blue sky or hear a piece of music or get a hug from a friend and cry because I am so grateful)
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Hello Lauren – I wish there were a “LOVE” option for reader comments instead of just “LIKE”! You have exactly nailed the point with your ‘proudest moment’ examples. They celebrate the miracle of human resilience, and YES are every bit as worthy of celebrating as the mountain climb. Thanks so much and take care…
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Oh how I can relate and appreciate these thoughts!
I am 51 and suffered cardiac arrest followed by a massive heart attack resulting in a week long stay in the hospital after my cardiac stent placement. 4 of those were in ICU. My husband and teenage son lived the horror of watching me flat-line while a team of doctors and nurses worked for over a half hour to save my life so I could be transported to a hospital with a cardiac care unit. I survived and I am fighting my way back and trying to adjust to my new normal.
I was always very active, last summer I was snorkeling in the Caribbean and kayaking the rivers of central Texas and playing team water volleyball every weekend and even beginning to train for my first 5k.
Now I exist to be proud of making it through a shower without losing my breath. Honestly there are days when it frustrates and depresses me. I am fortunate to have a very supportive and encouraging family and friends and belong to a live and an online support group. But it is a struggle and for those of us who live with quirky symptoms, fatigue, PTSD and unexpected outbursts of tears because you just feel like a burden some day…the struggle is very much real!
Thank you for sharing this post, as I saw myself in it and it encouraged me to take pride in the “little things” because they are huge to us. The other day I came home from work and it was sunny out, I got on my cute beach bicycle and rode around the block twice. It absolutely wore me out and made my pulse race, but the wind in my face felt amazing and it felt beautiful to be alive! I posted on Facebook when I got home “I rode my bike around the hood tonight!” #survivor
That was a really big thing for me, that was my Mt. Ranier! Blessings and courage to you!
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Thanks for telling us your story, Jeani. I love that “cute beach bicycle” example, proving that you don’t have to compete in the Tour de France to feel good while bike riding out in the fresh air! And I LOVE your analogy of Mt. Rainier. For so many of us, what may seem like an unimportant non-event to others (e.g. taking a shower) can truly feel like a major part of our day. You go, girl! As the late tennis legend Arthur Ashe once advised:
“Start where you are. Use what you have. Do what you can.”
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Note from Carolyn: This comment has been removed because the person writing it was attempting to sell stuff here…
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This may sound ungrateful or at least ungracious of me, but I often hate the “you’re so brave” or “I really admire your strength” conversations.
I’m just doing what I have to do to survive! Yes, I do realize that my drive may be stronger than others you’ve met or even see in yourself, but I’m conducting my life the only way I know how. Putting one foot in front of another and carrying on.
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Hello Eve – those responses sounds neither ungrateful nor ungracious to me. Many people have told me their feelings are remarkably similar to yours in the face of those “heroic” comments from others – that managing life with any serious diagnosis, no matter what that may be, is just that: putting one foot in front of the other to get through the day as best we can. May not feel particularly “brave” or “strong” at the time – it’s a coping strategy.
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Thank you – such a powerful post, as have been the comments. Helped me today!
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Thanks for that, Karen. I often think that my reader comments are far better than what I write here! So much wisdom out there…
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Carolyn,
You made my day! This blog is my Sunday morning treat–I read it before I read the paper, and imagine my surprise when I saw my name in the first paragraph and that the entire article is based off of the comment I wrote to you last year!
I couldn’t be more thrilled, and I am so hopeful that my words, Dawn Lynn Goo’s words and yours will all be able to help other people find the right perspective in the daily victories we all achieve when we just get up and put our socks on every day.
Thank you for including me in your message of hope and inspiration!
Charlotte
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Hi Charlotte! I’m so glad that I helped to make your day today! Thank YOU for sharing that original comment with me. I was re-reading it the other day and my reaction was: “Damn! That’s so good! Wish I’d written that!” – which prompted me to feature your message here. Hope you are doing well – just keep putting those socks on, one foot at a time… 🙂
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Thank you Charlotte! And thank YOU Carolyn for
giving space to this topic. It’s something we encounter a lot in the cancer world too and has made me feel inadequate that I haven’t become a mountain climbing athlete since my own diagnosis of breast cancer.
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Hello Marie – I suspect this unspoken expectation is universal among those who have faced a life-altering diagnosis, no matter what it is! Openly celebrating those athletic achievements can unintentionally lead us to believe that the only things truly worth celebrating are ones that garner media headlines.
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My 88 year old mom received three stents 10 days ago. The nurse in the Cath Lab recovery area was cheerful and encouraging. She spoke at length about her Christmas trip to Thailand. She left me at the brink of tears. People who have never been broken have no idea what life is like watching others live a normal life. People who are lucky enough to recover their function, wipe their brow and announce to the world that they are “normal” as measured by whatever grand feat they chose to prove it.
Six years ago, I had two heart attacks in 9 months/8 stents/5 heart caths/and was left with an EF of 28% and then my employer of 27 years forced me into an early retirement with a child still in university. I have seen my children forced to give up their long term goals and be forced early into adulthood. It’s not been an easy journey.
Neither my sister nor brother inquire as to how I am doing. They call mom and talk about their trips, their work, their home remodels, their landscapers, their dinner parties and rarely remember to email their travel plans for when they are out of country.
They do not call to ask how mom is progressing with her Alzheimer’s – yes it is a full time job that is rewarded with mom hugs. Then her heart starting acting up and she was rushed into the Cath Lab by her incredible cardiologist who placed the stents that saved her life. No drama here- she was 99% blocked and it was a very close brush with death. Her life is now upside down with recovery and I am at her side 24/7 getting her up in the morning, making meals, ensuring she eats meals and pills, walking, bathing, and running her household. A big part of that is keeping her spirits up – and the fact that my sister and brother are not engaged in her life has not gone without notice.
What has been done? I received two linen tea towels from Belgium, a box of chocolates for Christmas, a Chinese horoscope telling me that the year of the Rooster means I will have bad luck this year, and…this morning…that her husband is curling in the U.S. men’s nationals and is winning his rounds…. without so much as an inquiry as to how mom is doing.
Needless to say, I have given up waiting for her to ask how I am doing. I wish the media would ask my sister and brother in law how their parents’ ill health played into their concentration and how it affected their “game”. Have they forgotten about the years of caring and love provided by the very people that they are now ignoring for their personal gratification?
A dead cat on Mars would be able to see that heart patients and their caregivers are not living a normal life, regardless of whether you climbed a mountain or not. Listening to a nurse recite her wonderful Thailand vacation was not welcome and not helpful when you are home-bound with failing health.
Yeah, it hurts. Another day and another mom hug makes it all worthwhile.
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Oh, Anne. So many swirling emotions while reading your words… Where to begin? “Even a dead cat on Mars…” tops the list! Your experience with your mother’s cath lab recovery nurse was so interesting: I’m guessing that most of the friendly chatty nurses I know simply have no awareness that their running personalized updates can come across as a self-absorbed dismissal of the traumatic emotions their patients and family members right in front of their noses are going through at the time.
Re your sister and brother: we have a saying in our family: “Stop expecting a blue-eyed person to have brown-eyes!” What you see is what you get, yet it’s tempting to go through life looking at those who disappoint us while wondering WHY can’t they be more like ____ and less like ____? It would actually be a shocker if one day they suddenly stopped being themselves and started displaying empathy and compassion, so you are correct in “giving up waiting”. Better for your sanity…
Thank goodness you have those mom hugs. You won’t have them forever, but you’ll have memories of those hugs that your sibs will not have. And go find a better Chinese New Year horoscope for the Year of the Rooster!
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Hi Carolyn,
This article is so spot on, thank you so much for sharing your thoughts! I’m so glad I found your blog and I have shared it with the folks in my cardiac support group that I help coordinate.
I know what it is like to not want to get out of bed and face life and also to feel like a stunning success at life. I’m overweight and sedentary and a type 2 diabetic who spent years taking care of my family and not myself. Now I have 2 stents, both in the LAD, just got the second one last September (fortunately managed to get these before having a heart attack — I feel very blessed). Life sometimes seems overwhelming and I definitely think it’s an accomplishment to just have the courage to face the “new normal.”
With the first stent in February 2015 I joined Weight Watchers and lost 37 pounds. My A1C finally dropped below 7 after years of trying to do this and everyone was so proud of me — my cardiologist even called me her “poster child.” I shared my simple story at the annual Cardiac Rehab reunion — I just wanted to encourage others and be an inspiration.
Then over the winter I stopped doing WW, stopped exercising, became depressed after some major life changes, and gained back about 15 of those lost pounds. Started having symptoms worse than the first time which led to the second stent.
Now I feel like my doctor doesn’t even like me (I know that’s not really true but my failure in taking care of myself causes me to feel that way). Physically it’s been much harder this time to bounce back, I’m still having some chest pains I don’t understand although a nuclear stress test showed no more blockages and we’re still trying to figure out what’s going on. Back on WW, back in Cardiac Rehab for another round, and trying to get serious about exercising while feeling very afraid of those chest pains, and wondering how I ever thought I’d have the energy to try to help anyone else when I’m struggling myself.
To every survivor I would remind us of what Stephen Covey (Seven Habits of Highly Effective People) said: a public victory is always preceded by a private victory. Each of us conquers our personal mountains every single day. And every mountain range has valleys, easy spots and rough spots.
I love what you said about the stickers and rewarding yourself, and I will try doing that.
Thank you Carolyn!
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Thanks Meghan for sharing your perspective – I could really relate to so much of your experience! For example, years ago I lost about 30 pounds over the course of a year, but gained back about 10 before it was time for my next annual physical, which was making me dread facing my doctor. She scanned my chart and immediately exclaimed: “Wow! Your weight has really changed!” I felt so embarrassed and was about to start explaining about those 10 pounds when she continued, very excited: “You’ve lost 20 pounds since last year!!!” Here I’d been totally focused only on the weight that had been creeping back on, while she was celebrating what I’d accomplished! You are doing the right thing, back on track, slowly but surely…
Love that Steven Covey quote, which is SO TRUE! Good luck to you in solving the mystery of these chest pains.
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