Posts Tagged With: Congenitally corrected transposition

Day 2456: Time’s a-wastin’

“Time’s a-wastin'” is a phrase I used during my “Ted Talk” at my 45th college reunion yesterday.

Before I gave my talk, all the speakers at the event received an email explaining what would happen if we were a-wastin’ too much time during our 5-minute talks.

To help you keep track of the time, we will be holding up a sign for: FIVE minutes. Then SIX minutes. Then a buzzer at 7 mins.

I wrote to the organizers:

You can count on me to do what’s right.  Since I’ve got my speech pretty much memorized, please don’t rattle me with fingers or timers.

I also wrote this:

Mine is between 5 and 6 minutes. Okay?????

I was sure I wouldn’t be a-wastin’ people’s time by going over the limit because I had timed myself several times.

Because several people (including somebody with the same rare heart condition as mine) had asked me to record my speech, I left my phone running under my chair when I spoke, despite the no-taping request at the event.  I also recorded the speech for all of you, because  this blog was part of my “big finish” (as I’ve been spending much time discussing here, in previous posts).

Then I gave my speech, totally from memory.

When I checked the tape, I realized that I had slowly taken my time and taken up 10 minutes and 47 seconds!  So much for expectations.  I also realized that the organizers had respected my request and not held up signs or interrupted me with buzzers. If they had, it would have  upset me so much, I know, that all my preparation would have been wasted.

Because I always try to keep my promises, I wasted some time feeling bad about going SO MUCH over the limit.  I apologized to one of the organizers, and she said, “No worries.” (She said more, but I won’t be a-wastin’ your time with that.)

Without any further time-wastin’ ado, here is the “bootleg” of my speech yesterday:



In case any of that is difficult for you to hear, here’s the “5-minute” speech I had written:

I want to start out with a question to you. Raise your hand if you remember where you were on November 22, 1963. I’m different from all of you. I have no memory of that day because I was having heart surgery to get my first cardiac pacemaker. While you were being traumatized by the assassination of President Kennedy, my family and I were being traumatized by my unexpected surgery, by hospital rules preventing parents from staying with their kids, and by medical staff not knowing how to answer the questions of a confused and frightened l0-year-old girl like  “What is that coffin on the TV screen?” and “What is this giant thing sticking out of my body?”

I’ll tell you how I got there. I was born with the rarest of congenital heart conditions. My heart is essentially backwards, with the ventricles, great vessels, and valves switched and doing jobs they weren’t designed to do. Plus, the electrical impulses that control a heart’s rhythm are completely blocked in mine, which means I need a pacemaker to survive. However, pacemakers hadn’t been invented yet.

Luckily, I did well enough until I was 9, when my heart rate got slower and slower. You can see it in photographs from that time: I look like a ghost child in a family of mortals. The doctors tried speeding up my heart with yucky medicine that made me sick. Pacemakers were too new, too untested, and way too big for children to be even mentioned as an option.

Which brings us to November 1963. I was in the hospital for observation when my heart stopped and then started up again. That changed everything. The doctors told my parents they’d have to put in a pacemaker immediately, which would “stick out like a sore thumb.” When my mother expressed doubts about this new plan, the surgeon asked, “Do you want to lose your daughter?”

They didn’t lose me, but I had to struggle not to lose myself, as the pacemakers kept breaking down in every conceivable way. Once, when we were back in the hospital because my pacemaker had failed just two weeks after the latest operation, the surgeon called another one of my doctors on the phone and said, “The Koplows are here with their lawyer” — as a joke. My father and I used our senses of humor to mix things up — that December I went into the operating room wearing a sign that said, “Do not open until Christmas.”

Despite my many absences from school, I excelled academically, ran for class office,  read voraciously,  and appreciated the few benefits of being so different from my classmates, like getting out of gym class, which all my friends hated.  I read a book about Helen Keller who had also overcome physical differences with a palpable appreciation for being alive. Right then, I decided I wanted to go to Radcliffe, just like her.

When I was at Harvard, pacemakers had improved enough that I needed far fewer visits to the hospital. And just as I had avoided gym class, I managed to graduate without passing the swimming test. That’s another way I’m different from you.

Before, during, and after Harvard, I’ve lived my life with a deep sense of my own mortality — there’s no telling how long my very unusual heart will last. This makes me pretty impatient —time’s a-wastin’ and too precious to spend on small talk or on anything I don’t love. That’s why I changed careers until I found my soul’s best work as a wounded healer. I’m a group therapist who specializes in trauma.

And while I got enough personal training in trauma when I was young, I’ve had major heart-related crises in the latter part of my life. My poor, overworked tricuspid valve leaked badly, causing several bouts of endocarditis and also weakening my heart. Some doctors said I needed that leaky valve replaced, another doctor said that valve replacement would change the pressure in my heart to a catastrophic effect. Nobody seemed to know, because of the rarity of my condition.


In May, 2016, I met with the experts on hearts like mine at the Mayo Clinic. They said, “You must have that valve replaced immediately.“ Because my only child — a son with a fabulously normal heart — was about to enter his first year at the University of Edinburgh and we had plans to spend August together in Scotland, I asked for an extension. Well, I made it to Scotland, made it through my son leaving the nest, and made it through open heart surgery to get a new mechanical valve, exactly three years ago today.

So as I tell my story to you today, I wonder, perhaps along with you, what has allowed me to survive, so intact, through all this? What has helped me pick up the pieces, over and over again? As when I was a child — the love of my family and friends sustain me. Also, seven years ago I expanded my network of friends by starting a daily blog. Every morning, including today, I’ve written about my heart, my son, my passion for the healing power of groups, my song-writing, my cats, my hopes, my fears, this speech — whatever helps gird me and prepare me for the day ahead. The day after my heart valve surgery was the only day I needed a substitute blogger — my boyfriend Michael let my thousands of followers know I had survived the complicated procedure. Their comments included “Fantastic news! I’m in public but I’m dancing all the same,” and “She’s going to be alright guys’ is the best line ever!”

As a group therapist, I know that community is essential for survival. Perhaps because of all the traumas I’ve been through, I need a bigger group than most to keep me going. Thanks for being part of my group, here and now.

After I gave my speech, many people told me that they

  • were inspired,
  • thought I was very brave,
  • had an amazingly polished and effective delivery,
  • never knew any of this about me, even though we were good friends in college, and
  • were struggling with heart issues.

I guess people didn’t believe that I had been a-wastin’ time with my speech.

Let’s see if I was a-wastin’ time yesterday with the photos I took during the day:







If you leave any comments, that will be time well spent for me.

Time’s a-wastin’, so I will express my gratitude to all those who help me make it through every day, including YOU.




Categories: group therapy, personal growth, photojournalism | Tags: , , , , , , , , , | 42 Comments

Day 1724: Pre-existing conditions

I have a pre-existing condition of worrying whenever there’s news about health care  changes to laws protecting people with pre-existing conditions.  That’s because I had a pre-existing heart condition immediately after I was born.

Besides the pre-existing conditions of worrying and congenitally corrected transposition of the great arteries (cctga) I also have pre-existing conditions of being …

  • a neighbor,
  • a mother,
  • a daughter,
  • a sister,
  • a friend,
  • a girlfriend,
  • a group therapist,
  • a caregiver,
  • a patient, and
  • a photographer.











I also have a pre-existing condition of loving cats, even ones who have the pre-existing condition of peeing where they’re not supposed to.

Whether you have the pre-existing condition of commenting on this blog or you’ll have that pre-existing condition soon, feel free to leave your pre-existing thoughts and feelings  in a comment below.

This song has been pre-existing for a long time:


I also have a pre-existing condition of expressing gratitude to all who help me create my existing blog posts and — of course! —  to you, no matter what pre-existing conditions you have.


Categories: personal growth, photojournalism | Tags: , , , , , , , , , , | 15 Comments

Day 1246: Focus

Often, when I focus on starting a post,  I like to focus on past times I’ve focused on a similar subject.

Here’s how I’ve previously focused on Focus:

Day 13: Focus on what you’re doing (rather than on what you’re not doing)

Day 249: If you are having trouble focusing

If you focus on the numbers in those posts, you might focus on the fact that I wrote both previous posts about “focus” in the first year of my several years of daily focused blogging.

I’m focusing on “Focus” today because I wrote this quote about focus last week:

There is nothing like imminent heart surgery to beautifully focus the mind.

I’m now wondering about the focus of the latest focused photos on my phone.

Let’s all focus on them together, shall we?























What do you think about the focus in those photos?

What music am I going to focus on  in this focused post?

Ready to focus in on the next two paragraphs to find out?

When my sister Ellen and I drove to and from the Mayo Clinic in Rochester, Minnesota last week, we focused on the album of the musical Hamilton.

After Lin-Manual Miranda had focused on the idea of writing a hip hop musical about Alexander Hamilton for about a year, he was able to present his first focused musical number at the White House Evening of Poetry, Music, and the Spoken Word on May 12, 2009. Here‘s Lin-Manual Miranda and his piano accompanist Alex Lacamoire, wonderfully focused at that 2009 event.

If you’d like to focus any thoughts or feelings you have, here and now, in a comment below, please give it a shot.

Focused thanks to all those who helped me create this post about focus and to you — of course!  — for focusing enough to read it.

Categories: personal growth, photojournalism | Tags: , , , , , , , , | 39 Comments

Day 778: Getting back to each other

Yesterday, in beautiful, non-New-England-ish* Southern California, my son and I had fun in the sun and mild weather while we were waiting for Ron Lynch to get back to us.

If you don’t know who Ron Lynch is, let me get back to you about that, right now. Getting back to my 20’s, Ron Lynch was an amazingly funny stand-up comedian in Boston and an incredibly great teacher of stand-up comedy to me and many others. Getting back to  August 2014, Ron Lynch did his midnight Tomorrow! show daily at Scotland’s Festival Fringe, which Aaron and I got back to after spending August 2013 at the (getting back to Wikipedia) “world’s largest art festival.” (Getting back to clarity, Aaron and I first visited Edinburgh’s Festival Fringe in 2013 and returned there in 2014, during which we saw Ron perform there, several times.) (Getting back to previous blog posts, you can read about our experiences at the 2013 Fringe here, here, and here and then get back to our 2014 Fringe experiences here, here, here, here, and there.)

Getting back to yesterday, here are some photos  I took in the Los Angeles area while Aaron, Ron, and I kept getting back to each other about our plans to spend some time together later in the day:

IMG_5614 IMG_5622 IMG_5623  IMG_5625 IMG_5621  IMG_5627 IMG_5628  IMG_5631 IMG_5632  IMG_5633 IMG_5636

One thought that’s getting back to me when I look at those photos: Aaron borrowed my boyfriend Michael’s sunglasses for this trip, and I know he wants to make sure to get those sunglasses back to him, in Boston.

While Aaron and I were at the Griffith Observatory, Ron got back to us with finalized plans to meet for dinner and a comedy club, where Aaron might be able to perform, getting back to doing Open Mic. We picked Ron up  in Glendale and met his girlfriend’s cat, Eric …

IMG_5639 (1)

… who got back to us, for a moment.

Over dinner, Ron told us that somebody at the Conan O’Brien Show had just gotten back to him, hiring Ron to get back to impersonating Abraham Lincoln on tonight’s show.   Ron, who is always funny, generous, AND kind, asked us if we wanted him to try to get back to us with two tickets for tonight’s show.

I  said Aaron and I would get back to Ron about that, because our original plans were to leave Los Angeles today and start driving up to the coast to see friends in the San Francisco area. Ron said he would get back to us this morning about whether (1) he would be appearing on the show live or on tape and (2) people from the Conan show could actually get back to him with two of these in-demand tickets.

Also during dinner, I followed my own recent blog post advice of “Just Ask” and just asked Ron why he always got back to us so quickly when Aaron and I asked to hang out with him. Ron got back to us immediately with this: “Because I like you guys.”

Getting back to the comedy Open Mic plans for last night, when we got to the comedy club in Echo Park, there were already 90 people signed up to get back to the audience with three-minute sets. While we were waiting for people to get back to us about whether Aaron could perform, I took this photo:


I can’t get back to you now with the name of the club, but I CAN get back to you with why I noticed that art work: I’m waiting for cardiologists back in Boston to get back to me about possible future surgery for my very unusual heart, where my ventricles and arteries  face in a direction that is backwards to yours.

Soon, people got back to us and Aaron was able to get back up on a comedy stage:


After Aaron’s performance, Ron got back to us with this analysis: Aaron was one of the best we saw last night.

Now, I have to get back to preparing for the day, including getting back to my friends in Northern California about different possibilities of getting back to seeing each other after we leave LA and before Aaron and then I get back to Boston.

I hope you get back to me with comments or questions about this post, including your thoughts of what “Getting back to each other” means to you. And, I want to get back to sharing some favorite music with you, too:

You can get back to the Beatles performing “Get Back” here on YouTube.

Thanks to Aaron, Michael, Ron, Conan, the Beatles, Los Angeles, cats lost and found, comedy clubs with hearts, James Dean, rebels with or without causes, anybody who has ever gotten back to anybody in any way, and — especially! —  to you, for getting back here today.

* In case there’s any need for me to get back to you about this, I’m in no hurry to get back to New England.

Categories: gratitude, personal growth, photojournalism | Tags: , , , , , , , , | 35 Comments

Day 722: I told you so

Yesterday morning,  I was treading on the treadmill at cardiac rehab


and  Danise


said, “I told you so!” as she recounted a story about her weekend.

I don’t know if I told you so before, but I often listen to conversations around me and if I find them interesting, sometimes I interrupt!

If you have a judgment (or any other thoughts) about that, feel free to tell me so.


Anyway, Danise and I told each other a little bit about “I Told You So” while — as I already told you so — I was treading on that treadmill. We agreed that “I Told You So” might make a good t-shirt. I also told Danise it would make a good title for today’s post.

If I haven’t told you so before, I’ll tell you now:  I almost never say “I told you so.” Why not?  I don’t think people like it if you tell them:

  1. I was right,
  2. You were wrong, and
  3. You should have listened to me.

Who wants to be told that?

If you tell somebody “I told you so” and  they react poorly, all I can say is …

… I told you so.

See?  How did that feel?

I told you so far, in this post, about Danise talking about her weekend and my working out at cardiac rehab.  What have I told you so far, in This Second Year of Living Non-Judgmentally, about recent developments with my very unusual heart?

Even if I told you so before, I’ll tell you this again:

  1. Several cardiologists in the greater Boston area have different beliefs about what’s going on with my very unusual heart and what should be done about it.
  2. I’m hoping, with all my heart, that the doctors who believe I need major surgery soon will NOT be saying, “I told you so,” any time soon.
  3. As I’ve told you so many times in this blog, I have a lot of trust and admiration for my primary cardiologist Dr. Deeb Salem, who is a good listener and a great doctor.
  4.  On January 7, I’ll be seeing THE specialist for adults for my very rare congenital cardiac anomaly, at Boston Children’s Hospital.  How do I know this guy is THE specialist?  Several people have told me so.

I’ve told you so many things about my heart situation, lately. I’m not sure how comfortable you are, reading those kind of details. Perhaps I haven’t told you so in so many words, but it’s helpful for me to write about all this, here.

Even though I don’t say “I told you so” very often, I do like to form my own opinions about what’s going on with me medically, which can conflict with what the experts are saying.  If I’m right (and the experts are wrong), those are  opportunities to say, “I told you so.”

For example, when I transferred my care from Children’s Hospital in 1980 to work with Dr. Salem, he wanted to find out why I was born with a complete heart block — where the atria of my heart were NOT saying “I told you so, so, so, so, so, to beat after me” to the ventricles — necessitating my having a pacemaker at age 10. At that point, nobody had told me so that my heart was super unusual. Why? Because nobody at Children’s Hospital had discovered that I had congenitally corrected transposition of the great vessels (to be fair, cardiology technology wasn’t sophisticated enough to tell us so, back then).  I don’t have time to tell you so much the whole story of all that right now, since I need to go get a detailed cardiac stress test this morning — to get more data so the cardiologists can tell me so much more about what the &*#@!!&(# is going on with my weirdly unusual heart.  But I do want to tell you (so you will get my point)  what I did, back in 1980 when I disagreed with Dr. Salem’s conclusion that I might need heart surgery, after he discovered the truth about my bizarrely strange heart.

When Doctor Salem surprised me, while I was waiting for pacemaker replacement surgery in the hospital, by telling me so much about my heart, including that they might need to sew the pacemaker wires onto my heart after I had believed, for many years, that I would NEVER need that kind of surgery again, I got up out of my hospital bed and started packing my bags, to leave. Dr. Salem — whom I’ve told you so many times is a wonderful doctor — was empathic and creative enough to figure out, with me, another solution. And, since age 13 and until today — when I’m telling you so much, so quickly — I’ve never had heart surgery, again.

As I’ve told you so, above, I need to leave soon to go to a cardiac stress test today. But I have time to tell you one more story, about how I sometimes take opportunities to say, “I told you so!” to my doctors.

Last Friday, after synthesizing all the conflicting medical input I’ve been getting, I wrote an email to Dr. Salem. The subject of the email was:

By the way, here’s my working recommendation for what to do with me

A judgmental critic might disapprovingly say “I told you so, don’t do that!” regarding that email, because:

  • I came up with my own recommendations, even though I’m just the patient, and
  • I wrote such a friggin’ long subject for that email.

Would you like me to tell you what I told Dr. Salem in that email, so boldly?

You can tell me that you want me to tell you so, now. But I’m not going to tell you.


I may have told you so far, during my blogging journey, that I like to tell stories effectively. Therefore, I think it would be better if I tell you later, not now,  what I wrote in that email.

When will I tell you so much more about the contents of that email, and my prediction and recommendation about the best course of action for my heart? Probably, after I get the opinion of THE expert at Children’s Hospital, whom I’m seeing on January 7.  Honestly, dear readers, wouldn’t that make a great telling of the story? Especially if — based on what Dr. Michael Landzberg tells me — I’ll be able to say “I told you so!” to all those cardiologists who think I need a valve replacement or even more invasive heart surgery in the near future.

I told you so much and so little so far, today. Personally, I think it’s time I told you so, visually, with these other photos I took yesterday:


What am I telling you, in that photo I took at cardiac rehab? I told you so many people are stressed out over the holiday!


That’s Mary, whom I work with. If I haven’t told you so many times before this that I love working with her, I’ll tell you so now.  Before I took that photo, Mary told me this, “That diploma is in Latin, so nobody can tell how old I am!”

Have I told you that I park in a garage and easily walk the miles back and forth from work? (By the way, that’s more data that has gone into my personal recommendation about treatment for my heart, contained in my email to Dr. Salem, which I’ll be telling you about later.)  Here’s what I saw, yesterday, in that garage:


That car is saying, “I told you so that I’m a reindeer!”


Let’s see if my iPhone is saying “I told you so!” about having more cool pictures from yesterday I can tell you about, right now.

IMG_3905 IMG_3914 IMG_3924 IMG_3912

If you have any reactions to anything in this post, please tell me so in a “I told you so!” comment (or not).

Oh!  I forgot to tell you so about the song that woke me up this morning.

That’s Los Lobos, telling so many people, live, “Don’t Worry, Baby!”

I told you so!


Thanks to Dr. Salem, to Dr. Michael Landzberg, to Mary, to Danise, to Los Lobos, to anybody anywhere who has ever told me so (or told me anything else). And, thanks to everybody to whom I’ve ever said, “I told you so” … which now includes YOU!!

Categories: personal growth | Tags: , , , , , , , , | 28 Comments

Day 677: Pink

I woke up this Saturday morning — not completely in the pink — but knowing that “Pink” was my title for today’s post.

In case you don’t know what “In the Pink” means, here’s the definition:

in the pink

in very good health and spirits.
synonyms: in good health, very healthy, very well, hale and hearty.

I think that definition comes from Google, but I’m not sure.

I feel more in the pink when I include facts in my posts I’m certain about, and I’m sure the following images of “pink” are from a Google search:


(This Pink image lives here)


(This pink and Marilyn-y image lives here, supposedly)

pink (1)

(This pink and beard-y image lives here, for some reason)

When I look for images with Google, I am sometimes tickled pink, and I am also often having other feelings that do NOT have colors assigned to them. For example, I am now confused (insert any color, here, you think would fit) about:

  • how Google decides which images to show me  (like, for instance, most of the images that came up  for “pink,” just now, were of the singer Pink, or P!nk, which might be representative of the culture’s focus on celebrity),
  • why a man with a pink beard would appear on a web page that seems, to me, to be about Australia and cars,
  • how every time I use Google to search for images these days, it seems a little different and slightly more difficult (but that might just be me), and
  • where the pink ribbons are, which I expected to see early on, in this Google Image search.

Let’s see if I can find any pink ribbons, in those returns of my Google Image Search.

As I’m searching, for that expected pink ribbon, I’m finding many, many more images of P!nk, plus


(this pink and Starbucks-y image lives here)

Jennifer Lopez and Keith Urban get ready for 'American Idol'

(this pink and Jennifer Lopez-y image lives here)

maxresdefault (1)

(This image lives here on YouTube)


(This image lives here)

images (48)

(This image lives here)

That last image is close to what I was expecting to find, but not exactly.

I’m now feeling a little pink or blue or green or red or white or whatever color we might assign to impatience, since I thought this part of my post would be very quick to write.

Okay, I’m going to dive back into that sea of pink images again, to see if I can find that pink ribbon.


(this image lives here)


(this image lives here)

I think this search might be endless, actually.  I know I could find the pink-ribbon image I’m looking for, by doing a Google Search on “pink ribbon,” but color me stubborn, as I try one more time (even though, at this point, it feels like looking for a needle in a pink haystack).

images (49)

(that image lives here, on YouTube) (and by the way, if you’re looking for a music video in my post today, click on that link, and you’ll find it)

Okay. I give up.  You’ll just have to imagine or search for a pink ribbon, on your own.

If you read this blog on a regular basis, you might notice I don’t often give up. However, today, all these pink digressions have distracted me from what I thought I was going to write about

Which was ….? (And what color might we assign to the state of distraction?)

In order to pick up the pink thread I started here this morning, here’s my first sentence, which I wrote about an hour ago:

I woke up this Saturday morning — not completely in the pink — but knowing that “Pink” was my title for today’s post.

Why am I not completely in the pink, this morning?

I’m not entirely sure, dear readers. I mean, there are a lot of things in my life I feel tickled pink about these days, including:

  • the growing success of my therapy groups at work,
  • how much help it is, for me, to write these daily blog posts,
  • how many friends I have — in the blog-o-sphere and in the life-o-sphere — including  (1) Louise Gallagher who confused Black Sabbath with Pink Sabbath in her comment about my post yesterday and (2) Mark, my co-worker, who has appeared here and here and also in this photo I haven’t posted yet:


Mark pink-papers Ann.

That was the caption Mark and I came up with for that photo, which I took when I was making copies for my sold-out presentation about The Koplow Method of Group Therapy, two weekends ago.

But NOW I have to explain what “Pink Paper” means, in that caption.

Actually, a photo I took yesterday, in my office, might  help make this crystal (is that a color?) clear.

Arrrghh! I haven’t up-loaded my photos from yesterday yet, and now color me hungry.  I wonder if there’s any pink food around for me, to eat?


Close enough. I also have some pink grapefruit juice, but I am not stopping to take a photo of that.

Where was I?

Oh, yes! Looking for that pink-paper photo, from yesterday. Here it is (mixed in with some other colors):

IMG_1817 IMG_1820 IMG_1821 IMG_1823 IMG_1824 IMG_1825

We really need to come up with a color for confusion, because I’m assuming all my readers are that color, right now.

Let’s see if I can help with that, even just a little.  Here’s the definition of “pink paper” which is, apparently, a local, Massachusetts expression:

House Bill 4681, an Act to Improve Emergency Access to Mental Health Services (Section 12 Law) was passed by the legislature and signed into law by Governor Patrick. As of November 8, 2010, LICSWs in the Commonwealth of Massachusetts will be authorized to sign a Section 12(a), known as a “pink paper.” A pink paper is the mechanism by which a LICSW moves to hospitalize an individual believed to meet the criteria for civil commitment. A LICSW may order that a mentally ill individual be restrained and taken to a hospital in the belief that failure to hospitalize would create a likelihood of serious harm by reason of mental illness.
Examples of situations where a Section 12 might be appropriate include:
  • Suicidality
  • Homicidality
  • Markedly impaired judgment due to mental illness to such an extent that a person is unable to protect himself/herself.

The National Association of Social Workers (Massachusetts chapter) web site

Thank goodness, I have had to “pink paper” very few people, in my years practicing as a Licensed Independent Clinical Social Worker in Massachusetts. And when I have, these were situations where I truly believed people would be much safer, because of my action.

I’m wondering, again, what colors might be in your face as you read this portion of my post. If you have thoughts or feelings about any of this, I hope you know you can comment, freely.

I’m also aware that I still haven’t told you why I’m not completely in the pink today.

Well, I had a phone conversation with my cardiologist, Dr. Salem, yesterday.


Doesn’t Dr. Salem (who last appeared in this blog post) look pink and friendly in that photo?

These days, I am seeing Dr. Salem once every three months, so we can pay more attention to my very unusual heart (which might have some pink in it, but is probably mostly red, although, I can’t really say, not having seen my own heart, but believe me, some surgeons saw the color of it, up close and personal, when I was a little kid, when I had two heart surgeries, for pacemaker implants, which needed to be sewn directly onto the heart, back in the 1960’s).

Somewhere in that long and winding parentheses, above, lies a pink thread to why I am not completely in the pink today. In my phone conversation with Dr. Salem yesterday, we spoke about the  distinct-as-pink possibility of my needing heart surgery again, for a valve replacement.

How distinct-as-pink IS that possibility?

Honestly, I think Dr. Salem and I really have no idea, because of my oh-so-unusual heart. All we really know is that:

  • climbing stairs is increasingly difficult for me (which could mean lots of things and not necessarily that I’ll need heart surgery) and
  • every three months, we shall track the colors, size, and other important attributes of my heart.

I’ll end with some good news, I think …


All my toes and my fingers are pink!

Thanks to all who made it through this pink and many-other-colored post, today.  I think you deserve … a ribbon!


(pink ribbon, but not the kind of pink ribbon I was looking for before, found here)

Categories: inspiration, personal growth, photojournalism | Tags: , , , , , , , | 45 Comments

Day 640: All over the place

I woke up in one place this morning, but my mind was going lots of places, wondering what I might post about today.

Here’s the first thing I heard, on the radio:

On a morning like this, rainy and dark, we would expect problems on the road. Here are some spin-outs and accidents on your commute this morning.

Sounds like some cars were all over the place, too (before ending up in one spot).

Are there any places I want this post to go,  before I hit the rainy road?

For those who read my post yesterday, I want to tell you that — after I fearfully went all over the place from watching the beginning of a webinar about my very unusual heart (which had some scary data) — I watched the rest of it, which brought me to more balanced, hopeful places.

Speaking of all over the place, I just went to another place (my other blog at WordPress, which has lists of cognitive distortions and antidotes for unhelpful thoughts) to retrieve these:

This is a particularly extreme and painful form of fortune telling, where we project a situation into a disaster or the worst-case scenario. You might think catastrophizing helps you prepare and protect yourself, but it usually causes needless anxiety and worry.

Examine the Evidence.
Instead of assuming your negative thought is true, look at the evidence. For example, if you think “I never do anything right,” list some things you do well..

My mind has been going all over place, distracted, as I’ve been writing this, because the toilet has been running, running, running (while staying in one place), without stop.

I just fixed it, and that annoying noise has stopped. Now my mind can go other places.

But where?

Yesterday afternoon, my car went all over the place (because I misunderstood some instructions from my GPS system, Waze) on my way to see my therapist. I haven’t seen my therapist for a while, so our conversation went all over the place. At one point, the meandering discussion stopped at this blog, as follows:

Me: I’ve been posting every day since January 1, 2013, and I haven’t received any negative comments. Not one.

My therapist: That’s extraordinary.

My thoughts are going all over the place, right now:

  • My therapist just does not know my readers. If she did, she wouldn’t be that surprised.
  • When I’m writing a post and my thoughts and words are going all over the place, I often do imagine negative comments somebody might make.
  • What if somebody did make a negative comment here? So what?!  I like to invite negative reactions in my work as a psychotherapist … I’m sure I would survive (and learn from) any negative comments, in any place.
  • I wonder what I should eat for breakfast?

I think this post has successfully gone all over the place. Are there any other places I want to send it, before it comes to a stop?

Well, loyal and extraordinary reader Mark Bialczak wrote this in a comment, a couple of days ago:

I admire how you turn readers on to artists and songs they’d otherwise never encounter, Ann.

I like going places that my readers — including Mark — send me.

Recently, when I was walking and thinking all over the place,  I heard “Me and My Town” from Anyone Can Whistle — a musical Stephen Sondheim wrote when he was very young (before he really went places).

Even if you go all over the place on WordPress, I doubt you’ll encounter “Me and My Town” anywhere else. Here it is, from the original cast of Anyone Can Whistle.

When I was listening to”Me and My Town,” sung by Angela Lansbury, I took some photos of my town, Boston, which I would like to show you today.

Hmmm. I’m going all over the place, right now, looking for those photos I took last week. I know there were lots of photos of

[Me and] my town, battered about …

… Grass on the sidewalks, but not in the park 

… but I can’t find those images right now.  That’s not surprising … they look like a lot of other photos I take for this blog!

(Pssst!  If you want to see all the lyrics of “Me and My Town,” here‘s another place you can go.)

I have to leave soon to go another place (that would be work), so here are some photos you haven’t seen before, taken in Boston, which will just have to do:


IMG_9432 IMG_9578


I’ll end this all-over-the-place post with some words the Mayoress from Anyone Can Whistle sings again and again, as she goes all over the place in “Me and My Town.”

We just want to be loved.

Thanks to everybody who ever goes all over the place, which (I assume) would include Dr. Carole Warnes* (the expert from the webinar on congenitally corrected transposition), my therapist,  Mark Bialczak, Stephen Sondheim, Angela Lansbury, the people of Boston, and — of course! — you!

* One more place I want to go, here. When I googled “Dr. Carole Warnes” just now, I found another WordPress site, called “Adventures of a Funky Heart.” I’ll be going there (and other places) soon.

Categories: blogging, personal growth | Tags: , , , , , , | 20 Comments

Day 65: To dominate the impossible in your life

“To dominate the impossible in your life” is a line I really like, from a song I really like (“The Rhythm of the Saints”), from an artist/songwriter I really like (Paul Simon).

I’ve used that line, many times, to describe dealing with a situation that seems unbearable.

How to bear the unbearable?

Sometimes, you just have to. 

You may bear the unbearable by looking at the situation differently — by telling the story differently.

And telling the story differently is often a wonderful coping strategy.

Sometimes, though, it can involve denial — choosing not to see part of the truth.

On the other hand, how can we see all of the truth of a situation?  The truth is usually open to interpretation. As I wrote way back on Day 11, in  You Might as Well Be the Hero of Your Own Life , we make choices whenever we tell stories.  And our lives (and we) are so complex, we always make choices when we tell our own story.

So we have to leave things out.  Is that always denial?

And this makes this whole issue of “the truth” even trickier:  As we do our best to make meaning of life, we will use some cognitive distortions .

I often refer to Cognitive Distortions in my posts here.  Cognitive Distortions (a term used by Cognitive Behavioral Therapy) are just human ways of thinking. That’s why I don’t like the word “distortion.”  (Yes, I have a judgment about that.)  (Yes, I have judgments about many things.) (I’m human.)

In my work as a therapist, I often choose to use the term “Automatic and Unhelpful Thoughts,” instead of the term “Cognitive Distortions.”

But whatever I call them, I think those thoughts are inevitable, at least for most humans I’ve met.

Especially “Fortune Telling.”

We don’t know the future, but — in order to feel safe enough — we will make predictions about the future, based on our past.

I have yet to meet a human being who does not use Fortune Telling.

And I have “debates” with people I work with — in individual and group therapy — who argue that cognitive distortions are useful.

Of course, they’re useful, in some way.  Why else would we do them, and keep doing them?

However, it’s important to notice when trying to predict the future gets in our way.  When it makes us anxious.  When it holds us back from pursuing something that might help us. When we automatically go to the worst-case scenario (using a particular “distortion” called “Catastrophizing”).

So how do we figure this all out?  How do we use what we know, from the past, to feel safe, without restricting ourselves with fear?

How do we dominate THAT impossible in our lives?

So far, this post (except for the reference to Paul Simon and his song) has been all about generalities.

I think people learn better from the specific, so I’m going to give you some specifics now, from my life.

Here’s something I deal with:

I was born with a very unusual heart.

The on-line article I’ve linked to, above, is a pretty good one, I think. You may not want to read it.  Maybe you do.

If you do read it, I’m going to suggest something.  After you read it once, read it again (maybe pretending that you just received this diagnosis) and look for the things in that article that sound reassuring.  Then, read it again, looking for the things that sound scary.

Because both of those things — the reassuring and the scary — are there.

The condition is really rare, so a lot of people don’t  know about it. (As a matter of fact, I once went on a date with a cardiologist, who did not know about this condition.  When I told him about it, he made a very common mistake about it — confusing it with a much less rare condition.  I corrected him.) (That was our first and only date, by the way.)

People with my heart condition can lead very normal lives — so normal that sometimes it’s not even known they have this condition until after they die (sometimes at a very old age).

People with my heart condition can be quite sick, or can become quite sick later in life.

Once, when I was about two months pregnant with my son, I stumbled across a Very Scary Article about my heart condition, which said that women with my condition should not become pregnant because pregnancy would seriously weaken their hearts.

When I called my cardiologist in a panic, this is what he said to me, “Ann, you have such a rare condition, that any article about it uses a sample size that is so small, that the results are suspect.”  And he told me that he did not agree with the article, and he made a great case for why that was. So I stayed pregnant.  And I have an amazing 15-year-old son.

Thank goodness that I believed my cardiologist.  Because I could have easily decided that he did not know what he was talking about  — because, after all, he was making a recommendation based on a too-small sample size, also.  I might have left him for the care of a cardiologist who did believe that I should terminate my pregnancy.

But I didn’t.

But while I was pregnant, how could I make the “right” decision?  I would have to have been a fortune-teller. I would have had to have been psychic.

Which I wasn’t.

So I did the best I could.

And it was the “right” decision.  In retrospect.

That’s what’s so tricky. There is often no “right” decision.  We just do the best we can, with the information we have, believing in the experts we trust.

And if we make a decision that turns out to be the “wrong” one — that is, the experts weren’t correct, the outcome implies that we “should” have done something different — we need to make peace with that, too.

Otherwise, we will be hindered — and sometimes tortured — by the past. The past will get in the way of us living in the moment.

Which of course, happens to all of us humans.

Here’s an “antidote” I suggest to people, about making peace with the past.

Look at the Context.  Instead of automatically blaming yourself for a problem, think about the other factors that may have contributed to the situation. If you regret a previous action, consider that you might have been doing the best you could at the time.

Anyway, I was going to write in this post about a particular aspect of my condition that I’m finding difficult to bear right now.

It’s not mentioned in the article I linked, but people with my condition, if their heart valve leaks (which it often does) are prone to endocarditis.

(By the way, I’m assuming that some people who are reading this do not want to read the links here, for their own reasons.  For some people, the links might be TMI — Too Much Information.  That is completely okay with me. And, I hope, you can still read this post without reading the links and still get something out of it.)

Anyway, I have a leaky valve.

Therefore, I am prone to endocarditis.

It’s a potential danger, which my wonderful cardiologist communicated  to me, when I was in my 20s.

That was a communication I received, despite my human wish to deny that as a possibility.

So, when I was 7 months pregnant with my son (20 years after my cardiologist communicated his concern to me), and I developed a fever, I asked to be tested for endocarditis, for the first time.

Now, we (me and my medical team) thought my request to be tested was kind of weird, because (1) I had never developed endocarditis before and (2) there was no reason to believe that I had endocarditis.

I did not have any symptoms of endocarditis, except a fever.

I had a fever because I had the flu.

But, my cardiologist, when I called him and told him, “I would like to be tested for endocarditis,” said the following:

“Well, why not?  It couldn’t hurt.”

When I went to the hospital to be tested, this is what the Endocarditis Specialist said to me,” You have a fever because you have the flu.  So, there is no reason for me to test you for endocarditis.  You’ve never had endocarditis. However, since you’re here and your cardiologist has ordered the test, I will do the test.”

And when the results of the test came back, I got a call from the hospital as follows, “Get in here right away.  You have endocarditis.”

And the test caught it so early, that I was fine.  My heart had no damage.

However, the treatment was that I needed was to be on IV antibiotics for six whole weeks.  And the doctors told me that the medication they needed to use might affect the hearing of my unborn child. But they needed to use that medication.

I had to dominate that impossible, and choose the treatment.

The day I got off of the six-week regimen of IV antibiotics, was the day my water broke.

My baby did not have any hearing problems.

My heart was not damaged.

Okay, here is where the story gets even weirder.

About six or seven times since that first bout of endocarditis, I have asked to be tested for endocarditis again. Each time, my symptoms have been different. Each time, the doctors could have said, “There is no real reason to test you for endocarditis.”  But they didn’t say that. They tested me for endocarditis.

Two of those times, I had endocarditis.

Each time I had endocarditis, we caught it quickly enough that my heart was not damaged.

The other times, I was “wrong.”  I did not have endocarditis.

Several doctors who know me, when they tell my story (sometimes in front of me, to medical students) describe me as “amazing.”  They say, “It’s like she’s psychic.”

But I’m not psychic.  Nobody is psychic.

I guess the way I make sense of this story is that I must be incredibly tuned in to my health and my body.

But sometimes I’m wrong. And I get anxious “for no reason.”

About two weeks ago, I started to wonder whether I had endocarditis.

There were lots of reasons why this might not be true.  The symptoms were this: I have a pain in my hip.

That’s it.

There are lots of reasons why my hip might be sore. I walk a lot. I just turned 60.  I’ve been wearing boots that don’t give great support.

Lots of people have hip pain.

I don’t have a fever.  Before, when I’ve had endocarditis, I’ve had a slight fever.

After I first got the idea that I wanted to be tested, I talked myself out of it.

Which I’ve done before. Sometimes, when I get the fear of endocarditis, I decide not to get tested.

So, when this thought has come into my head over the last week or so — “I am afraid that I might have endocarditis,” I talked myself out of it.

I did not want to get tested. I wanted to believe that I was just imagining things.

Because I have, many times before.

However, after talking to several experts and friends, I decided to get tested yesterday.

But coming to that decision — weighing all the factors, trying to figure out what the truth was, trying to balance my fears about the future and my knowledge of the past, telling myself I was not psychic (which is true)  after having had all these experiences where a “psychic” feeling had prevented severe heart damage, figuring out how I can live my life safely but not be paralyzed by fear — was really, really hard, dear reader.

It felt like I was trying to dominate the impossible in my life.

I made my decision — I got tested.

I feel fine about that decision.

I feel fine as I am writing this post.

My boyfriend, Michael, thinks I don’t have endocarditis. He’s been pretty psychic, himself. He predicted, in 2010, the outcome of the last presidential election, when nobody was predicting the winner.

I will find out in a few days.

Whatever the outcome, I will work hard NOT to think in terms of “right” or “wrong” decisions — that is, whether I “should” have gotten the test, or not. Whether I “should” have gotten the test earlier.

I  plan to tell myself that I did the best I could, with the information I had.


I will let you know, when I get the results.

Thanks for reading, so much today!

And I wish you all the best, in dominating the impossible in your life, whatever that might be.

Categories: personal growth | Tags: , , , , , , , | 20 Comments

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