Posts Tagged With: living with a heart condition

Day 2492: 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: , , , , , , , , , | 38 Comments

Day 2491: 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: , , , , , , , , | 19 Comments

Day 2487: The difference between good and great

What’s the difference between good and great? Here’s one difference:

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A great co-worker and mom showed me that great card yesterday.  Another great co-worker and mom showed me more great pages of The Daily Bitch Calendar:

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Last week, when I did my first Coping and Healing group for staff,  I was basically a cucumber with anxiety, but the group was still good.  Today, when I’m doing my fourth group for staff,

  • I’m less anxious and
  • I’m very happy that the feedback about the group has been so great.

The managers at work think the groups are so great that they want me to do more and also train other good therapists to do them.

Great!

Do you see the difference between good and great in my other photos from yesterday?

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Every two weeks, I need to perform an INR test and test my blood because of my heart issues.  The results are always good and usually great!

There are a lot of videos on YouTube titled “The Difference Between Good and Great, including one by The Angry Therapist (which is a great name) and also this one by William King Hollis:

 

Yesterday, on my way home from work, I listened to this great tune by the great Jacob Collier a good many times:

 

How would you define the difference between good and great?

Great thanks to all those who helped me create today’s post and to you — of course! — for being so great.

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Categories: group therapy, personal growth, photojournalism | Tags: , , , , , , , , , | 19 Comments

Day 2480: Different

Although I’ve published many different posts, including Day 2394: A little bit different, Day 1930: Lucky to be different, Day 1835: Different ways to say things, Day 1762: Different parts, Day 1726: Different perspectives, Day 972: Intentionally Different, Day 689: Different stylesDay 690: Different styles (continued)and Day 453: Different languages (and dances)this post is different from all the other ones, just as each one of us is different from everybody else.

When I give a 5-minute talk at my college reunion on September 21, I’m going to stress how different I am, with this beginning:

Everybody our age remembers where they were and what they were doing on November 22, 1963. I’m different from the rest of you.  I have no memories of that day, because I was having heart surgery to receive my first cardiac pacemaker.

Every time I rewrite that opening, it’s different, but the meaning remains the same.

This post is different because it has only three photos.

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Today is going to be different because

  • I’ll be facilitating a different version of my Coping and Healing groups for staff at the Primary Care Practice of the major Boston hospital where I work and
  • each day is different from what we expect.

Last night, I asked my boyfriend Michael — who is different from everybody else —  if he thought that staff group would go okay today.  He said (in different words), “Why should this be different from every other time you’ve done this before?”

Here’s “Dare to be Different” by Donovan (with a slideshow of different photos created by passage2truth):

 

As always, I care about your different thoughts and feelings about this post.

There are many different ways to express gratitude to those who help me create this blog and to those who read it, and here are some of them:

Categories: group therapy, personal growth, photojournalism | Tags: , , , , , , , , , | 17 Comments

Day 2419: Keep doing what you’re doing

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“Keep doing what you’re doing” is

  • something I’ve written on my white board and on prescription pads at work,
  • often a validating, supportive, and encouraging phrase,
  • a non-judgmental acceptance of habitual behavior, and
  • a new title for this blog.

Because WordPress and my laptop keep doing what they’re doing,

  • I can’t save a post while I’m writing it and
  • only some of my photos are loading today.

Keep doing what you’re doing, including smiling,

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scanning,

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welcoming,

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watching,

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noticing signs,

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celebrating,

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avoiding danger,

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and focusing on what’s important to you.

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I keep doing groups and I keep doing rhymes.  Yesterday, I wrote this rhyme in a group focusing on “the unexpected.”

The unexpected

Needs to  be respected

And not neglected

And definitely accepted.

People keep listening to this podcast interview about my heart keeping on:

https://tinyurl.com/y43gqqvf

I keep sharing what I’m sharing in this blog, including this song by Anita Wilson:

Keep doing what you’re doing and if that includes commenting on this blog, thank you!

I keep expressing gratitude every day for the help I receive from others, including YOU.

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Categories: group therapy, personal growth, photojournalism | Tags: , , , , , , , , , | 22 Comments

Day 2411: Who you are, who you aren’t.

Who I am is a group therapist and “who you are, who you aren’t” came up in a therapy group yesterday.

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Who I am is somebody who likes clarity, so “who you are, who you aren’t” is on the second-to-bottom line in that group-generated topic list, above.

Who I am NOT is somebody with great handwriting.

Who I am is also a human being who …

  •  wears socks with information about who I am,

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  •  appreciates the kindness in others,

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  •  notices sensitivity, acceptance, and emotions,

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  •  tries to take a breath when feeling attacked,

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  • thinks there are three great questions to ask oneself before responding to others,

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  • usually validates others before moving on to next steps,

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  • loves living near the ocean,

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  • appreciates great home cooking,

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  • has an unusual heart,

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  • and shares, on this blog and elsewhere, information about living with a very unusual heart.

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Who I am NOT is somebody who has been interviewed for a podcast before, but I will be that person after tonight.

Here‘s the Who with “Who Are You.”

 

If who you are is somebody who comments on blogs, please share any thoughts and feelings about “who you are, who you aren’t” below.

Who I am is a person who feels and expresses gratitude for those who help me create these daily posts and — of course! — for YOU (no matter who you are or aren’t).

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Categories: personal growth, photojournalism | Tags: , , , , , , , , , , | 16 Comments

Day 2248: Bad news

Yesterday, when I was avoiding the bad news on the 24-hour news and weather channels, I found this as I was going through old mail:

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When I opened that envelope, I found two letters bearing bad news about medical issues I was dealing with in 2016. (If you want  details about that bad news, see Day 1407: Enough and Day 1408: The News.) 

Then, Michael, who was having fun fun fun shoveling the bad ice and snow, came inside and looked like he had bad news.  Sure enough, he said,   “I scratched your car while I was cleaning it off. You’re going to be mad. It’s bad.”

I did immediately get mad, because the bad news is that Michael has done that before, with my previous car.  Eight years ago, he used a shovel and scratched the paint on the roof of  my beloved grey Mazda. This time, he used a scraper and scratched the yellow paint on the hood of  my adorable Honda Fit.  I immediately delivered this news, “Never try to remove ice from the body of the car! You don’t need to!  Just clean off the glass!”  I think this is news to Michael because he doesn’t drive and has never owned a  car.

Then, I looked at the scratches and even though they were new and bad, the good news is that I quickly stopped being mad. That’s because of all this good news:

  • scratches can be repaired,
  • Michael has a great ratio for  removing ice and snow from my car without scratching it  — he’s only scratched the car two out of a kashmillion times, to use the new word/number Michael made up a kashmillion years ago,
  • the scratches make  my car and me look tougher,
  • you can’t see the scratches if you’re far enough away, and
  • Michael was neither scratched nor otherwise physically damaged while working so hard on the very bad ice and snow outside.

Then, Michael and I watched some bad news for people who hate the New England Patriots and also this new skit from Saturday Night Live:

What news do you see in my other new photos?

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Lately, I’ve been dealing with bad news –including how COLD it is around here —  by dancing with Michael.  Here‘s what we danced to last night:

Here‘s more news from Stevie Wonder, in honor of Martin Luther King Day.

Please feel free to share any news in a comment, below.

Thanks to all who helped me create this “bad news” post and — of course! — to YOU, no matter what your news is, here and now.

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Categories: personal growth, photojournalism | Tags: , , , , , , , , , , | 27 Comments

Day 2211: Hanging on for dear life

If you hang on until the end of this blog post, you’ll see the photo that inspired today’s post title.

I like the title “Hanging on for dear life” because I’ve been hanging on for almost sixty-six years and life is very dear to me.    I also like that title, here and now, because life can sometimes seem precarious, especially with global warming reports, the current political situation, the stresses inherent during the holiday (and exam) season, interpersonal conflicts, and a fire alarm going off during a group therapy session.

Hang on, dear readers!  Here are all my photos from yesterday:

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Work, blogging, and important relationships keep me hanging on.

What keeps you hanging on?

Thanks to all who keep me hanging on, including you!

 

Categories: personal growth, photojournalism | Tags: , , , , , , , , , | 14 Comments

Day 2195: What’s allowed

Because I often think about what’s allowed in this world, I just searched WordPress for any previous posts I might have written on this subject, because that’s allowed.

I can now allow, aloud, that I was surprised that the only post WordPress allowed in that “What’s allowed” search was Day 717: Interrupting.  Four years ago, I allowed myself to write that looooong post (which features, doctors, cows, and lots of interrupting) when I was dealing with some very confusing medical issues.  Writing about those medical issues daily and receiving helpful and supportive feedback from my readers allowed me to navigate through them.  Thank goodness all that was allowed.

So, what allowed WordPress to find a connection between “What’s Allowed” and “Interrupting” today?   I am allowing myself to speculate that interrupting, according to WordPress, is something that’s allowed. Therefore, I’m allowing myself to interrupt this post to share my photos from yesterday.

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According to those photos, it’s allowed to

  • get irritated with technology (and other things),
  • dress animals in outfits,
  • be welcoming,
  • gobble until you wobble,
  • use cognitive behavioral therapy for insomnia,
  • make it all work,
  • spend four days in Fenway, and
  • appreciate Prince

… but it’s NOT allowed to go into stores with animals and bare feet (although maybe bare other things are allowed).

Sharing music is allowed, so here’s Prince with I Would Die 4 U.

While I wouldn’t exactly die 4 u to comment, I hope u know that all your thoughts and feelings about what’s allowed are allowed in the comments section, below.

Gratitude is always allowed here, so thanks to all who allowed me to create today’s post and — of course! — to YOU.

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

Day 1858: Falling

Ever since I’ve been on anticoagulant medication  (for most of the time I’ve been writing this blog), I’ve been afraid of falling, so I take great care not to fall.

Yesterday, despite my efforts not to fall, I felt myself falling on my walk to work.  I tried not to fall, but you can’t fight city hall and sometimes you can’t fight a fall.

As I was falling and I saw the cold, hard sidewalk rushing up to meet me, I thought,

  • Ooops!
  • I didn’t expect this.
  • I hope I won’t bruise too much.
  • I’m probably going to feel this for a while.
  • I bet this looks interesting to other people.

After falling, I stayed down, checking myself.  I was glad I hadn’t hit my head or my Implantable Cardiac Device (ICD). I didn’t think I had broken anything. I couldn’t see any bruising.  People in cars rolled down their windows and asked, “Are you all right?” I replied, “I THINK so.”   A woman walking behind me asked if I was okay and she helped me get up off the sidewalk.   She said, “Did you slip on the ice?”  We looked around and didn’t see any ice.  I said, “I think I just caught my toe on something.”  Everybody else I told about falling yesterday asked, “Did you slip on the ice?”  I could have easily fallen into a white lie and said, “Yes,” but lying is not one of my fallings.

An hour before the falling, I had called to make an appointment to see a doctor about the ongoing pain around my ICD, so I had the relief of knowing I would see a doctor later that day.  And because I naturally fall into trying to look at the bright side, I thought, “Well, maybe the pain from this fall will distract me from the other pain.”

And it did.  As the morning went on, my falling resulted in increasing pain in my shoulder. It hurt to draw this on the whiteboard in my Wednesday morning group:

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Because many members of the group had many obligations and worries falling on them, I suggested that they draw a protective circle around themselves and write down the things that were bothering them outside the circle.  I invited them to include the realities of the present moment inside the circle with them.

Inside my circle, I wrote “warmth,” “safety,” and “pain” among other things.  Outside the circle, I wrote “falling,”” “hard sidewalks,” and “pain” among other things.

Since falling, I’ve seen a doctor and had an X-ray.  There are no breaks or dislocations. I’m using ice and Extra Strength Tylenol to ease the pains from my falling.

I’m falling into a prediction that I’ll be feeling pain on my birthday tomorrow but I’ll also be feeling joy for having the strength to get up, again, after falling.

Here’s a song I heard somebody singing at The Voice try-outs last Saturday:

 

While you listen to Alicia Keys singin’ “Fallin’,” here are more photos I took after falling:

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Gotta go ice my shoulder and go to work. Plan for the day: Avoid Falling.

As usual, I’m falling into gratitude for all who helped me create today’s post and — of course! — for YOU.

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Categories: group therapy, personal growth | Tags: , , , , , , , , | 37 Comments

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