Posts Tagged With: congenital cardiac conditions

Day 849: The Art of the Heart

Yesterday, I saw some unexpected art, as I followed my heart.

                            


                  

One of the artful messages on that giant CD heart came from my heart. Could you guess, in your heart, which one it was?

More importantly, what heart-felt message might you have left on that art heart? How would you “make visible what makes your heart sing and how you carry the music of life”?

Here are two performances of music made visible on that heart (and on this heart, too):

“No Day But Today” (found here and there on YouTube) is from the artistic heart of Jonathan Larson.

It breaks my heart that Jonathan Larson’s big, 35-year-old heart stopped in 1996 — because of an undiagnosed tear in his aorta — a day before the debut of the musical Rent, which was the art of his heart, made visible.

A few more scenes — seen and not seen yesterday — from the heart of Boston, USA:

 
                   

Where we live

there’s only now

there’s only here

forget regret

no other way

no day but today.

Artful and heartful thanks to Jonathan Larson, the artists of Seen/Not Seen, Studios Without Walls, Riverway Park, Fenway Park, the cast of Rent, Idina Menzel, and you — of course! — for the heart you bring (no day but) today.

Categories: in memoriam, personal growth, photojournalism | Tags: , , , , , , , , | 30 Comments

Day 736: Endless

Yesterday in my office, somebody in a therapy session described how responsibilities and pressures — at work and at home — seemed endless to them.  I asked, “Do you ever get a break from all this?”  In response, I thought I saw an endless-yard stare — doubt and worry without end.

I knew my day, yesterday, would end. Days always do. At times, though, obligations,*  concerns,* needs,* unexpected situations,* and unfinished business* can seem endless. Why? Because there’s always more to do and there are always tasks not being done.

That’s why I invite myself and others to focus on what we are doing (instead of those endless things we aren’t).

Another person I saw in therapy — who has been working on improving  self-confidence and the ability to experience and express joy — realized something important. This person recognized that despite the mind’s ability to endlessly worry, worry, worry, worry, worry, worry, worry,  this was an important, personal truth:

IMG_4415

Considering that bad things have happened to this person in the past, I felt endlessly grateful to witness that non-endless,  5-worded sentence. I’m hoping the positive results of healing realizations (like that one and others) can seem as endless to people as

  • hopelessness*
  • despair*
  • powerlessness*
  • guilt*
  • shame*
  • paralyzing self-doubt*

and other non-helpful thoughts and feelings I observe, which can make anybody’s life seem truly endless.

Last night, after a wait that seemed long — if not endless — to me, I finally spoke with one of a seemingly endless crowd of cardiologists, regarding a stress test I took a non-endless number of days ago.

Here were my endless hopes for what the cardiologist might say to me:

Ann, we looked at the results of this stress test measuring the interactions of you, your unusual heart, exercise, and oxygen and …. congratulations! You and your heart are endlessly strong! Well, actually, nobody’s heart is endlessly strong. But your heart, Ann Koplow, is as strong as anybody else’s! You are a WINNER!

However, despite my endless capacity to hope for the best (and, simultaneously, expect the worst), the cardiologist — rather than sounding like an endless series of endlessly enthusiastic game show hosts* I’ve seen in my many years watching TV* — sounded more like a cautious, consulting cardiologist. That is, he said the tests were inconclusive. Then, he gave me his prediction of what I needed, which was major heart surgery, sooner or later.

I just met this cardiologist, so I don’t know if his expertise or his knowledge of me is as endless as I might want it to be.  And, I am meeting, tomorrow, with another new — to me — cardiologist for whom people seem to have endless respect, affection, and faith.

However, before my post today seems endless, I want to tell you that the cardiologist yesterday, in our conversation, used this word

weakened

about my heart.

Words, to me, can be endlessly powerful. I reacted to that word with what felt like  an endless amount of fear.* Worry, frustration, resentment, and defiance were all in there, too. I don’t like people using words like that about my trusty heart, which has kept me going for so many days, months, years, and amazing experiences.

So I responded, to the cardiologist last night, with questions. Questions are my endlessly useful weapon/protection/instrument/magic.  If you ask anybody who knows me well, how many questions I ask, they might answer

Endless!

The questions I asked the cardiologist, after he used the word “weakened” for my endlessly unusual heart, included:

  • Do we know for sure that my heart is weakened?
  • If we were able to compare my heart now to what it was a year or two ago, would it seem weakened?
  • If my heart is weakening, is that happening gradually or quickly?

The cardiologist responded,  to every question I asked, with

That’s a good question

which is something I’ve heard, endlessly, for a very long time. And, despite his kind competency, the cardiologist could not end my endless-seeming uncertainty* and confusion* in our conversation, last night.

Here’s a question I did NOT ask that cardiologist:

If my heart is weakened, WHY DO I FEEL SO FRIGGIN’ STRONG?

As I write this post, I am in the middle of compiling a list* of questions to ask Dr. Michael Landzberg, Congenital Cardiology Expert Extraordinaire, when I see him tomorrow morning, at Boston Children’s Hospital.

I resolve,  as my readers are my witnesses, to add that last question to my list, now.

And because of the strength of

  • that question,
  • my feelings,
  • my hopes for the future, and
  • the tiger

I am deciding to keep my profile picture

1897c2860b744829a41748f62efca093

as it is — if not endlessly — at least, for now.

Because I endlessly hope to avoid hurting and disappointing others — including inanimate objects like PENs, for heaven’s sake — I shall now present a visual series-with-end, taken yesterday by your endlessly humble photographer:

IMG_4402

IMG_4410 IMG_4412 IMG_4411 IMG_4404IMG_4414IMG_4416

IMG_4405 IMG_4407

Appearing, above, are Carla, Danise, and Kathy at Cardiac Rehab AND Penny the Pen (who has been appearing in a non-endless number of New Year posts hereherehere, here, and here).

In that last photo, as you can see, Penny is taking a break on one of the workout machines at cardiac rehab. I — even when my workout on that particular machine seemed endless — did not.

Last night, when I started writing this post (which is coming to an end), I thought of this song:

You can find “The Song That Doesn’t End” by Shari Lewis, Lamb Chop, etc. here on YouTube.

Today, as I was ending this post, I thought of this song, too:

Hope for the Best, Expect the Worst,” from Mel Brooks‘s The Twelve Chairs can be found here on YouTube, at least for now.

Also, I found this long but not endless tribute to Mel Brooks and songs he’s written for his movies and stage musicals:

Endless thanks to all who contributed to and who are reading this post — which includes you, of course!

The End(?)


* Which can all seem endless, but actually are not.

Categories: inspiration, personal growth, photojournalism | Tags: , , , , , | 32 Comments

Day 734: Actually

“Actually” is actually a word I use a lot, in writing and in speech. I’m actually not sure why I do.

My soon-to-be-17-year-old son, Aaron, actually asked me this question last week:

Do you say “actually” a lot?

and I replied:

Yes, I do.

I actually can’t believe that I didn’t take that opportunity to use “actually” in my response there.  Maybe I actually did say “actually”  and my memory isn’t actually  as good as I think it is.

Actually, I believe that Aaron and I have discussed “actually” before.

I am actually shocked that I have not used the word “actually” in any post title before today. However, I HAVE actually used the word “actually” in approximately 7 out of the last 22 daily posts I’ve written here, which is actually a lower percentage than I would have expected.

Yes, I actually took the time to check that out.

I actually didn’t think I’d be writing this actual introduction today. I actually did know that my title would include the word “actually” today, but I thought it might be

Love Actually

or

Actually Love

because I actually spent some time yesterday resting on the sofa, eating sunflower seeds, drinking tea, and watching some of the movie  Love Actually on television. I’ve actually seen parts of that movie before and I actually vividly remember Emma Thompson‘s performance, but yesterday the movie actually had about 7 minutes of commercials for every 10 minutes of movie, but I’m actually guessing there.

I’m actually trying to relax this weekend before my actually highly anticipated meeting with a new cardiologist on Wednesday, who is actually the top expert on people who actually have my congenital cardiac

abnormality

condition

problem

defect

disease

issue

which are all words I do NOT love, actually.  Actually, I am going to take the time in this post, right now, to actually come up with a word I actually prefer.

(Here’s some actual background, for new readers: I was born with Congenitally Corrected Transposition of the Great Arteries, wherein actual parts of my actual heart are doing things they weren’t actually designed to do.  I’m actually linking, within this actual paragraph, to actual on-line articles AND previous posts actually written by me, if you want to read more about CCTGA. CCTGA is actually, these days, also called Levo Transposition of the Great Arteries (L-TGA), but I actually don’t remember what or who Levo is and, in the moment, I actually don’t care.)

I actually do care about finding a word I actually prefer to those “negative” words I listed above, so how about I say that I have a congenital (which actually means “born with”) …

SPECIAL-NESS!

although I don’t actually love that word either. How about

I have a congenital cardiac SPECIALTY!

What do you actually think about all that?  Perhaps you might actually come up with a better word. (If you do, could you actually share that, here?)

Actually, I wanted to tell you more, in this post, about my yesterday.

Before I relaxed on the sofa — watching Love Actually (with the two TV snacks I actually want to restrict myself to, if I can actually manage that) — I actually had breakfast with my long-time friend Eleanor. Eleanor has actually appeared verbally, but not visually, in two previous posts, which are actually called

Day 128: I get by with a little help from my friends 

Day 154:  Worry, losing, and finding things.

both of which could have actually served as the title of today’s post (except for the actual day).

Here are some photos I actually took — with my old, cracked cell phone — during yesterday’s breakfast with Eleanor at my long-time actual, favorite diner (which has actually appeared in so many previous posts, that I’m actually not going to take the time to search for those right now, but you could actually find them, if you want, by searching for “Deluxe Town Diner” here).

IMG_4396 IMG_4397 IMG_4398 IMG_4399 IMG_4401

The cast of characters appearing in the above photos include Penny (in the first four shots) and Cindy, Gina, and Kelly (hidden, except for her four fingers). Gina (actually on the right, above ) has actually not seen Aaron for a long time, and when I showed her a recent photo of what he actually looks like these days, she actually yelped with delight. Gina actually said a lot of flattering things about Aaron yesterday, but I won’t include them here, because they might embarrass him, if he actually ever read these posts.

Do I actually sound annoyed there?  I’m not. I’m actually hungry, especially looking at those photos of yesterday’s breakfast.

I actually just ate some of this, with almond milk:

IMG_4462

which is actually pretty good.

Now that I actually can think clearly again, I wanted to tell you some actual facts about my time with Eleanor, yesterday:

  1. We actually talked about a lot of things, including our jobs and our children,
  2. We reminisced about some people we both met at my first actually full-time job, in the 1970’s, when I got hired as a technical writer right out of college, with no actual experience,
  3. Eleanor said it was actually lucky that WordPress didn’t send her my New Year’s Day post, because she emailed me about that, which then resulted in our actually getting together yesterday,
  4. She said she found it remarkable that I’ve been posting every day since January 2013,
  5. I told Eleanor it meant a lot to me that she found this recent post very moving, and
  6. When we said goodbye, I actually told her I loved her.

See! So the name of this post actually could have been “Love Actually.”

Here are some more photos I actually took last night, when I was actually at Panera Bread and PetSmart with my actual boyfriend, Michael, when it was actually snowing, here in the Northeastern United States:

IMG_4449IMG_4452IMG_4460 IMG_4454 IMG_4459

IMG_4456

Sometimes I wonder if I’m actually driving Michael — and other creatures around me  —  crazy.

Actually, I’m not actually sure what actual music would actually fit this actual post today.

This actually appeared in my mind, just now:

If you actually want, you can find “You Send Me” by Sam Cooke  here, on YouTube. I actually don’t know why Sam Cooke’s songs have been appearing so much in my mind  and in recent posts (actually, here and here).

If you were actually going to respond to this actual post, what might you actually say?

Actual thanks to all actual people, creatures, and pens appearing in this post today (actually pictured or not) and — actually — to you, for your actual visit (which I actually appreciate, a lot).


I’m actually amazed that I wrote this whole post without any actual footnotes.

After I actually published this post, I actually realized that some of the photos wouldn’t actually load. I’ll see if I can actually figure this out, today.

Categories: friendship, inspiration, personal growth | Tags: , , , , , , , | 42 Comments

Day 626: The C word

My cardiologist called me the C word, at my check-up three months ago.

I  tried not to catastrophize about it.  But I was concerned,  ’cause criticism can stick. Conversely, I considered it comical, that my cardiologist could call me that!

I concocted a cunning counter-move.

My cardiologist, Dr. Deeb Salem, is considered a completely caring and competent doctor, by everybody who comes into contact with him. But ever since he called me the C word, and I’ve clinically consulted his female co-workers — I’ve called him out, concerning that circumstance.

Care to conjecture these women’s countenances when I confronted them with my cardiologist’s comment?

They were completely confused and confounded, of course.

Yesterday morning,  as I contemplated my up-coming cardiology appointment with Dr. Salem at 3 o’clock that day, I considered comprehensive conversations about

  1. my congenitally corrected transposition,
  2. my other cardiac conditions and concerns,
  3. Dr. Salem calling me the C word,
  4. et cetera.

Concurrently, I considered this:

I know the title for my next blog post!

… a cognition I see is completely c-less, in the current moment.

I started seeing C-words, consecutively, on my walk to work, including

IMG_9306

 camera,

IMG_9317

cop (and cars!)

IMG_9323

crosswalk,

IMG_9325

and more crosswalks and crossers.

I considered what music to include in today’s post, and concluded:

Of course!  I’ll include a composition by keyboardist Chick Corea!  He was born in Chelsea, Massachusetts, where my father grew up!

Here’s Chelsea’s Chick Corea’s composition, Sidewalk:

(YouTube video of “Sidewalk” found here.)

Anyway, as I continued on the sidewalk, I noticed more cars and commuters.

IMG_9328  IMG_9336 IMG_9337 IMG_9338 IMG_9339 IMG_9340

You can’t completely see her, but that’s my co-worker Jan, across the crowded street. I wonder if that looked creepy to anyone — my taking that many consecutive shots of Jan.

Jan is definitely NOT the C word my cardiologist called me (although she may have used various c-words, out of my earshot, when she’s feeling cranky). I consider Jan to be other C-words: caring, compassionate, comical, and convivial.  I wonder if she considers herself those things?

Anyway, I called out to Jan and she crossed over, to see me.

IMG_9341 IMG_9342

After conducting individual and group therapy at work, I left for my cardiology appointment.  On the way, I encountered more C-words:

IMG_9344 IMG_9346 IMG_9347 IMG_9348 IMG_9349 IMG_9358 IMG_9359 IMG_9361 IMG_9362 IMG_9365 IMG_9371 IMG_9374 IMG_9385 IMG_9386 IMG_9388

… before encountering my cardiologist.

IMG_9395 IMG_9396

That’s Dr. Salem, in the corridor before my check-up, calling me a “pain in the ass” to his co-worker!!

I continued my cunning scheme of calling out Dr. Salem calling me the C word, as his medical assistant, Julie, cuffed me:

IMG_9398

Julie said, “He called you WHAT?!? That’s completely uncalled for!!” (or words to that effect).

Anyway, everybody yesterday seemed very pleased with how I’m doing, cardiac-wise. And Dr. Salem and I cracked up, several times, during my cardiology appointment.

After the appointment, I casually encountered my other cardiologist, Dr. Mark Estes, in another corridor. Continuing my consistent cracking on Dr. Salem, I said to Dr. Estes:

Dr. Salem called me a pain in the ass, today!  I’m going to put that in my blog!

When I saw Dr. Estes’s concerned countenance, I reconsidered.  Then we exchanged these comments:

Me: Okay, I may not write that. But I’m definitely including in my blog something else he called me, three months ago. He called me   … CHUBBY!!

Dr. Estes: That’s worse.

Before I conclude this “C word” post, I have to choose a category for it. How would you categorize it?  Also, are there C words I could have included here, to make it more complete?

Thanks to my cardiologists, to Chick Corea, to people from Chelsea, to c-words everywhere, and to you — of course! — for coming by, today.

Categories: Uncategorized | Tags: , , | 34 Comments

Blog at WordPress.com.