Posts Tagged With: living with a heart condition

Day 3166: No rhyme nor reason

Today, September 1, is National No Rhyme (Nor Reason) Day in the USA.

I started looking at and sharing National Days some time in July, and this is the first day where there seems to be no rhyme nor reason for any of the designations. Why do we need a day for any of these? There seems to be no rhyme nor reason.

Also, every other list of National Days I’ve seen has included some kind of food or drink. Therefore, when I ask on Twitter how people are going to celebrate the precious day, there seems to be a rhyme or reason for that question. For example …

Actually, the more I think about it, No Rhyme Nor Reason Day seems like the perfect day for me to head back into the hospital, since the nose balloon that we hoped would fix my cat-claw-Coumadin nose bleed doesn’t seem to be working. When things don’t work, it can seem like there is no rhyme nor reason to anything. Also, National Burnt Ends Day seems appropriate, since they’ll probably cauterize the end of my nose, where our new kitty Joan scratched me three nights ago.

Maybe there seems to be no rhyme nor reason for me to be writing this blog at 3:45 AM. However, I’m distracting myself because the Ear Nose Throat on-call doctor I spoke to on the phone at 2 AM suggested that I wait some hours before coming in to be seen. The Emergency Room at my hospital is all filled up, she said, and it would be better to wait until 5 AM to show up there and even better if I could wait for my scheduled 10 AM appointment in the ENT clinic.

Maybe the doctor thought there was no rhyme nor reason to my disappointment and discouragement about the balloon not solving the problem as we had hoped. I tend to catastrophize and assume the worst for no rhyme nor reason, and when I expressed my worst fear — that the doctors would not be able to fix this problem for me — she seemed to think there was no rhyme nor reason to my despair.

For no rhyme nor reason, just writing those words is helping me feel better, here and now.

For no rhyme nor reason, I can’t load more images from my phone for this blog post, so I’m going to switch to my laptop to finish creating it.

Is there no rhyme nor reason for these images in today’s post?

Sayings like “We grow through what we go through” help provide some rhyme and reason, don’t you think?

I love George Duke, so here’s “No Rhyme No Reason” from one of my favorite keyboardists, who left this earth for no rhyme nor reason too soon.

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Here’s “No Rhyme No Reason” performed during a 2014 jazz festival tribute to George Duke, featuring a solo by guitarist Chuck Loeb, who also left this earth too soon for no rhyme nor reason that I can see or understand.

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For No Rhyme (Nor Reason) Day, I’ve written this rhyme for my own reasons.

On No Rhyme Nor Reason Day,

I think it’s wise for me to say,

That nosebleeds aren’t the worst things that occur.

People die before their time,

At least I’m still alive to rhyme,

And Joan the cat can soothe me with her purr.

There is no reason to rhyme any comments, below.

There’s always a rhyme and a reason to express gratitude, so thanks to all those who help me blog every day, including YOU!

Categories: personal growth, photojournalism | Tags: , , , , , , , , | 21 Comments

Day 3164: Healing energy

I think we all could use some healing energy right now. That’s why I tweeted this last night:

I’m sending healing energy to all who could use it, here and now, including myself and you.

Do you see healing energy in my other images for today?

I find healing energy in acknowledging grief about losses while also being open to change and renewal.

Here’s what I find on YouTube when I search for “healing energy.”

I look forward to the healing energy of your comments.

As always, there is healing energy in gratitude, so many thanks to you.

Categories: life during the pandemic, personal growth, photojournalism | Tags: , , , , , , , , , | 23 Comments

Day 3160: How not to be wrong

How not to be wrong starting a blog post? I’m just repeating today’s title and letting it flow from there.

“How Not to Be Wrong” is one of the books I’m reading/not reading on my two-week vacation from work.

Personally, I think I spend too much time thinking about how not to be wrong, which can inhibit what I say and do. These days, I’m embracing mistakes as learning experiences and spending less time worrying about the consequences of being wrong.

Granted, it’s very important for us not to be wrong about our health and safety — for ourselves and others. For example, if I forget to take my Coumadin and if I don’t eat a consistent amount of vitamin K, my mechanical heart valve might clog and fail. So I need to think about not being wrong about THAT every day. Also, there are a lot of creatures that depend on me, so I don’t want to be wrong in such a way that jeopardizes their future.

However, I’m not wrong about knowing myself well enough to choose to focus on accepting that I WILL be wrong, every day, and that not every mistake will result in disaster.

Do you see any examples of how not to be wrong in my other images for today?

How not to be wrong on August 26, 2021 MIGHT include having a cherry popsicle, but I don’t think I’m wrong in saying that women’s equality day should be every day.

By the way, usually I spend more time arranging the order of the images in my blog posts — is it wrong that today I’m not worrying about how not to be wrong in creating a good enough post for you?

Here’s what I find on YouTube when I search for “how not to be wrong”:

How not to be wrong about guessing how much time you have to watch a video today:

How not to be wrong about sharing your thoughts and feelings about any of my blog posts? Leave a comment, below.

How not to be wrong about any interaction with other people? Express gratitude when you can.

Categories: personal growth, photojournalism | Tags: , , , , , , , , , , | 10 Comments

Day 2801: Tell about something beautiful

I want to tell about something beautiful that happened yesterday, when I went to a doctor’s appointment at one Boston hospital and then went to another Boston hospital for the first time since February to retrieve some beautiful items from my office and to see some beautiful co-workers.   The main beautiful item I wanted to retrieve from my office was a collection of beautiful questions a beautiful person had put together for my Coping and Healing groups. After I got back to my beautiful home, I realized that the beautiful bag I had placed my beautiful items in had a big, beautiful hole in it, and that beautiful  collection of questions was gone.

Then, I had a beautiful decision to make: should I take up more time during my beautiful vacation to look for those beautiful questions or just beautifully accept that my time with them was over?

I called the beautiful Lost and Found department of the big beautiful hospital, remembering that I had lost several beautiful items over the years (including my favorite beautiful red jacket) that had never been found.  I struggled to come up with a beautiful description of the lost item: “It’s a collection of small rectangles with questions on them, held together with a silver ring.”  The beautiful person on the phone said, “Wait a minute” and then returned with this answer, “Nothing like that has been turned in.” I asked, “Should I call again tomorrow?” and the beautiful person said, “Sure.”

Then, I spent more beautiful minutes trying to decide what to do next.  I really didn’t want to get back into my beautiful car and drive in lots of beautiful traffic to retrace my steps.  My beautiful husband could tell that I was very sad that I had lost those beautiful questions.  He said, “Maybe it will turn up.”  I told my beautiful son, who was ready to go on a beautiful walk with me, “I’m going back to try to find what I lost.”

When I got into my beautiful car, I realized that my beautiful Scream mask was also missing. I had put that beautiful mask in the beautiful bag with the big beautiful hole when beautiful people at the beautiful hospitals had told me I needed to wear the beautiful masks they were providing to their beautiful patients to keep them beautifully safe during this very unbeautiful pandemic.

When I parked my beautiful yellow car in the same beautiful place near a beautiful church in beautiful Brookline, Massachusetts, I saw my beautiful Scream mask on the ground, almost immediately.  Then, I had beautiful hopes that I would find my beautiful collection of beautiful questions.

I retraced my steps with beautiful accuracy, looking everywhere for the collection of beautiful questions.  I went back to the beautiful hospital where I work, returned to my beautiful office, took more beautiful photos, retrieved more beautiful items from my office, and met more beautiful co-workers. I talked to several beautiful people who I thought might be able to help me in my beautiful search,  trying to share more beautiful descriptions of what I had lost.  At one point, I said, “It’s a ring – no, not a jewelry ring, but a big silver ring holding together rectangles that have questions on them.”  Everybody tried their beautiful best to understand my stumbling attempts to describe what I had lost, but nobody had seen or could find my beautiful questions.  Knowing I had searched everywhere, I decided that some beautiful person had probably picked up the questions and might put them to beautiful use.

On my beautiful walk back to my beautiful car, I had beautiful thoughts about how we all deal with loss.  Then, much to my beautiful surprise, I saw what I was seeking, as plain as the beautiful day, lying on a beautiful spot on the beautiful sidewalk where lots of beautiful people were walking.  I knew that it had NOT been there when I had walked by that same beautiful spot before. I picked up the Lost and Found item with beautiful speed, placed it on a beautiful wall, and took this beautiful photo:

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I am doing my beautiful best to follow the beautiful directions on that beautiful card: “Tell about something beautiful.”

My beautiful readers might notice that my description of the lost item was beautifully imperfect.

Ready to see my other beautiful photos from my beautiful day?  Brace your beautiful self— there’s about a hundred of them.

If you want to expand any of those beautiful pictures, like this one …

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… or this one ….

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… or this one …

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… or this one ….

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… or this one …

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… or  this one …

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… or this one …

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… just give it a beautiful click.

What beautiful song should I share in this beautiful moment?

Here‘s “Something Beautiful” performed by Trombone Shorty with Lenny Kravtiz.

Tell about something beautiful, if you choose, in the comments section below.

Thanks to all who help me tell about something beautiful every day, including YOU.

Categories: life during the pandemic, personal growth, photojournalism | Tags: , , , , , , , , , | 26 Comments

Day 2775: Overload

Yesterday, when I was in an elevator at Tufts Medical Center, overloaded with awareness AND worry about being out and about during the coronavirus pandemic, I saw this:

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These days, we are dealing with an overload of

Thankfully, I’ve had  an overload of  good care from my long-time cardiologist, Dr. Deeb Salem (featured in an overload of my previous posts here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, here, and here).

Even though this blog might have an overload of photos of Dr. Salem, here is another one from my appointment with him yesterday:

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During the coronavirus pandemic, frontline health workers like Dr. Salem have to wear an overload of Personal Protective Equipment.  Dr. Salem, who has an overload of cardiology students wanting to work with him, told  one of them yesterday that he always schedules me for his last appointment of the day because we have an overload of things to talk about. Yesterday’s overloaded conversation included

  • Dr. Salem’s personal experience of working with Dr. Anthony Fauci (who is “a very smart and very good guy”),
  • discussions of my having had the coronavirus in March and possible lasting effects of that,
  • scheduling an echocardiogram to make sure that there is no permanent damage to my heart because of COVID-19,
  • the possibility of Dr. Salem and I writing a book together,
  • my stating that Dr. Salem and I have an overload of respect and love for each other,
  • Dr. Salem saying, “I think you’re doing great,” and
  • scheduling our next overloaded appointment for the day after my 68th birthday in February.

Dr. Salem said he was interviewed on Boston TV recently about his experiences working with Dr. Fauci, but I can’t find that interview in the overload of videos out there about Dr. Fauci.

Here’s an overload of other photos from yesterday:

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Michael overloads our plates with nutritious food, ever day.

Here‘s “Overload” by Zinnia, which has been loaded over 7 million times on YouTube.

I’m looking forward to an overload of comments, below.

As always, I have an overload of gratitude to all, including YOU.

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Categories: life during the pandemic, personal growth, photojournalism | Tags: , , , , , , , , , | 33 Comments

Day 2766: I haven’t been this depressed since …

How would you complete today’s blog post title?

I haven’t been this depressed since …

Here’s how The Daily Bitch completes that sentence …

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… which also works for me.

I haven’t taken many photos since my last blog post, perhaps because I’m depressed about the passing of our fabulous cat, Oscar.

 

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Harley doesn’t seem depressed, but who knows?

Here‘s what comes up on YouTube when I search for “I haven’t been this depressed since”.

 

I haven’t been this grateful since yesterday.

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Categories: life during the pandemic, personal growth, photojournalism | Tags: , , , , , , , , , | 24 Comments

Day 2655: The coronavirus pandemic has changed our world

“The coronavirus pandemic has changed our world” — an undeniable statement — is also the first sentence in the show notes for Anna Jaworski’s latest “Heart to Heart with Anna” podcast.

If you want to hear Anna and Valerie — both wonderful mothers of children with congenital heart defects — and also your daily blogger discuss our experience of COVID-19, click on the link in the previous paragraph.

The coronavirus pandemic has changed our world. And yet, our socially distanced world still has so much beauty, as  I choose to see in my photos from yesterday.

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The coronavirus pandemic has changed our world, but

  • Harley doesn’t seem to notice,
  • the full moon still rises, and
  • good people are still finding some good news.

How has the coronavirus  pandemic changed your world?

No matter how the world changes, I still feel so grateful for YOU.

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Categories: group therapy, personal growth, photojournalism | Tags: , , , , , , , , , | 20 Comments

Day 2591: Heads and Hearts

In my third year of blogging, when I was heading into dealing with more heart problems, I published Day 1074: The Head and the Heart.  My head notices, here and now, that I didn’t mention those heart problems in that post (although I mentioned them in many other posts, including Day 1178: What is heart failure?).

Yesterday, at the beginning of the week when I’m seeing my two cardiologists, I saw this:

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This reminds me of how I often say this to people who are in therapy with me:

You know this here (pointing to my head) but you don’t know it here (pointing to my heart).

Let us try to combine our heads and hearts together as we move forward in 2020.

What do your head and heart combined tell you about my other photos today?

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My head and heart are noticing that so many people are disappointed with yesterday’s Iowa caucuses, as you can read here.

For your head and heart, here‘s a Quincy Jones version of a tune from Hair:

My head and heart are both looking forward to your comments, below.

Thanks, from my head and heart, to all who help me create these blog posts and to all who read them, including YOU.

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Categories: group therapy, personal growth, photojournalism | Tags: , , , , , , , , , | 23 Comments

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?”

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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.

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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?”

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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.”

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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.

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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.

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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.

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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.

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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:

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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.

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

Day 2455: What helps?

What helps you?

What helps me is blogging every morning.  What helps me is sharing my experience.

Today, I’ll be sharing my experience at my college reunion in a five-minute speech about living with my very unusual heart. It’ll help if I can record it, so I’ll do my best. If I can’t record it, I’ll help you experience the speech by sharing the full text here, tomorrow.

Yesterday, it helped for me to facilitate a Coping and Healing group at work and then to spend the day at my reunion with my long-time friend Lawry.

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It helps to have friends. Here’s part of today’s speech:

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!”

In other words, I get by with a little help from my friends, including YOU!

 

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Categories: blogging, group therapy, personal growth, photojournalism | Tags: , , , , , , , , | 20 Comments

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