Posts Tagged With: living with chronic illness

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 2467: Everything

After almost seven years of daily blogging here at The Year(s) of Living Non-Judgmentally, I sometimes wonder if I’ve written about everything.

Fortunately, there are  always more everythings, every day, to notice and share.

This blog is everything to me, so I’m planning on including it in my five-minute “Ted Talk” about Picking up the Pieces at my upcoming 45th college reunion.

Here’s what I wrote about that, this morning:

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 these years of
uncertainty and crisis? 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, about seven years ago I expanded my
network of friends by starting a daily blog. Every morning, including
today, I write about my heart, my son, my boyfriend, my work,, my
passion for the healing power of groups, my music, my cats, my
hopes, my fears, — whatever helps gird and prepare me for the day
ahead. The day after my heart valve replacement surgery is the only
day I needed a substitute blogger — my boyfriend Michael let my
thousands of readers know I had survived the complicated surgery.
The comments from my readers that day included “This is the best
news that I could receive!” “She’s going to be alright guys’ is the best
line ever!”
As I know with my work with groups, 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, today.

I’ve written several drafts to make sure that talk is everything to me and to my listeners at the reunion.  I hope everything, above, will make it to my final speech. I’ll keep you posted about that and everything else.

Here’s everything I photographed yesterday:

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Michael’s meals are everything.

Here‘s an “Everything” song:

 

I look forward to everything you choose to share in a comment, below.

Thanks to all for everything!

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

Day 2436: Girls never quit

Yesterday, after spending  time with a wise  girl in her 70s who just won’t quit and who recently received a new diagnosis of a chronic illness,  I saw this:

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The girl writing this blog will never quit

  • appreciating others,
  • observing,
  • stopping to smell the flowers,
  • healing,
  • hoping,
  • loving,
  • connecting,
  • renewing,
  • revealing,
  • looking for the beauty in every moment,
  • knowing that life is good,
  • putting herself out there,
  • believing in the power of groups, and
  • taking pictures.

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Those last three photos show my boyfriend who won’t quit until he dismantles and gets rid of that hot tub.

This girl never quits looking for videos that won’t quit, like this one by a girl who never gives up:

I hope you never quit accepting all your feelings, which you are welcome to express in a comment, below.

This girl never quits expressing gratitude, so thanks to all who help me continue creating this blog and — of course! —  to YOU.

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

Day 1882: Summon your strength

I need to summon my strength for a very early morning flight to Houston, so I choose to summon this pack of tissues.

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I need to summon my strength because I am

  • tired,
  • in pain from tearing my rotator cuff,
  • meeting new people,
  • traveling to an unfamiliar city,
  • presenting about my therapy groups,
  • on the medication Coumadin and needing to maintain a therapeutic INR with a consistent diet, and
  • homesick in advance.

I summon my strength by

  • writing,
  • sharing my thoughts and feelings, and
  • taking pictures of my surroundings.

 

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That message on the Paramount Theater in Boston summons my strength to remember that we are home no matter where we are in this world and that I’ll be attending a two-day therapy group in Houston titled “Longing for Home: Past Attachments and Reparative Re-Attachments.”

I also summon my strength by going to great musicals with people I love.

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Telling people “You Matter to Me” helps them summon their strength.

 

How do you summon your strength?

Strong thanks to all who helped me summon my strength to create another blog post and — of course! — to my readers, who matter to me.

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

Day 1813: Yeah, I have a dark side.

Yeah, I have a dark side.  So do we all.

If we deny our dark sides, we tend to project them on to people we define as “the other.”

So if we’re characterizing people different from us as

  • cheap,
  • stupid,
  • lazy,
  • greedy, or
  • otherwise less than us,

we’re probably projecting our own dark sides onto them.

Yeah, I have a dark side and I own it, as a way of not imposing it on others.

Yeah, I have these socks.

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Yeah, I have two other photos from yesterday.

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Do those photos have dark sides?

Yeah, I have a Dark Side video to share.

Yeah, I have a dark side that’s greedy for attention, so please leave a comment below.

Yeah, I have another side that expresses gratitude for all who help me create these blogs and for those who read them, including multi-sided you!

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Categories: personal growth, photojournalism | Tags: , , , , , , , , | 31 Comments

Day 1516: World of Puzzles

It’s a world of puzzles, isn’t it?

Here’s the first photo I took yesterday in my world of puzzles.

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My world includes these puzzles:

  • Why and how did I come down with a sore throat during the warmest February day I can ever remember?
  • What world issues inspired this tweet, yesterday?

What’s more important? Global warming or my enjoying a 60-degree February day in Boston?

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Your strength is your own knowledge and did you have the strong knowledge that I would include some music from the world of YouTube in this puzzling post?

What puzzles are in your world, today?

Thanks to all who helped me create this world of puzzles post and to you — of course! — no matter how puzzled you are, here and now.

 

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

Day 1417: Tough

The tough title of this post is inspired by the first photo I was tough enough to take yesterday, while I was doing some tough exercises at cardiac rehab:

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Based on my understanding  of (1) the word “tough” and (2) the staff at cardiac rehab, I assume they meant  I am “strong and resilient” rather than “difficult.”

If you want me to provide citations for those two definitions of ‘tough,” one word:

Tough!

The last few months have been tough for me, as I’ve undergone several  tough cardiac-related surgeries and suffered other tough slings and arrows of outrageous fortune.

Apparently, I’m tough enough to take it,  because here I am, writing this tough post today.

Now, some of my tough readers probably want to know how tough my day was yesterday, since I mentioned in yesterday’s tough post that I’d be seeing lots of tough doctors and getting some tough tests at my tough hospital.

I hope it won’t be too tough for you to tough it out through several other tough photos from yesterday, first.

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For those of you tough enough to make it through all those tough images, here’s my news from my tough day:

The news is good.  My tough doctors told me that all the tests show that I am exactly where I should be, after all the tough things I’ve been through.  As a matter of fact, my tough doctor, Mark Estes (not pictured), said this to me:

We’re going to keep you going until your 90s.

While recent events have shown lots of tough people that it is VERY tough to make accurate predictions, that was not tough for me to hear.

It’s tough for me to decide which tough music to include for this tough post, so I will leave that to my tough readers.

When the going gets tough, the tough get going. The tough writer of this tough blog does need to get going, but not until I express thanks to all, with three more tough photos:

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

Day 1304: Crystal Clear

Yesterday, one of my doctors — Dr. Laura Kogelman of Tufts Medical Center — said to me

Your lungs are crystal clear.

Dr. Kogelman  made it crystal clear during my appointment with her that

  1. my pneumonia is gone,
  2. my heart failure has resolved,
  3. I am ready to go back to work today,
  4. I am no more likely to contract pneumonia in the future than anybody else,
  5. we are doing a good job preventing me from getting endocarditis (a dangerous inflammation of the heart which I’ve had three times before because of my leaky heart valve),
  6. she misses seeing my wonderful dentist, Dr. Luis Del Castillo (who used to be her dentist too),
  7. it’s okay for me to go to Edinburgh, Scotland in August with my son and my ex-in-laws,
  8. she thinks it’s going to be “great” when I get a new mechanical valve for my heart in September, and
  9. she liked the idea of my transforming my future open-heart-surgery scar with a tattoo.

I made it crystal clear to Dr. Kogelman that I did NOT like her idea of turning that scar into the medical symbol of a snake climbing a rod.  I told her, “I have plenty of medical symbols on my body already” and informed her that if I do decorate that  new scar after I get it in September, I’ll probably add some flowers and leaves.

What is crystal clear to you, here and now?

Are all of my photos from yesterday crystal clear?

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Is it crystal clear to you that I made that t-shirt and that I especially like to wear it to medical appointments?

Yesterday, somebody named Jeanyne, who works at Tatte Bakery in Boston  (not pictured), made three things crystal clear to me:

  1. she loved my t-shirt,
  2. she wanted to own a t-shirt like that, and
  3. her mother,  Diane, who recently retired, is just now starting a new business marketing cool new wearable items.

Is today’s featured music crystal clear to you ?

 

Crystal clear thanks to all those who helped me create today’s post and to you — of course! — for all your crystal clear reactions.

Categories: personal growth, photojournalism, staying healthy | Tags: , , , , , , , , , | 34 Comments

Day 1301: Who do you think you are?

Who do you think you are, reading this blog today?  Who do I think I am, posing such a question?

Who do you think saw this yesterday?

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Who do you think took a picture of it?

Who do you think you are?  Are you somebody who’s heard that question from other people?   Who do they think they are, asking you “Who do you think you are?”

Who do I think I am? I think I’m somebody who

  • thinks,
  • feels,
  • deserves respect,
  • is mortal,
  • does her best,
  • respects others,
  • blogs every day,
  • is human,
  • makes mistakes,
  • learns,
  • gets discouraged sometimes,
  • is mostly hopeful,
  • is glad to be alive, and
  • took these other pictures yesterday:

 

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Who does that tea bag company think it is, telling us to sing from our hearts?

Who do you think you are, trying to figure out all those other photos?

Who do I think I am to include two different tunes today (here and here on YouTube)?

Who do I think I am, expecting you to have some reactions to this post? Who do you think you are to consider leaving a comment?

Who do you think I want to thank today?  Everybody  who helped me create this who-do-you-think-you-are post and you — of course! — for reading it.

Categories: personal growth, photojournalism | Tags: , , , , , | 26 Comments

Day 1299: Looks

As I look around, I notice how much looks matter to people.  Personally, I look at a lot more than just looks when I look at somebody.

But look at me!  Yesterday, looks mattered so much to me that I requested that people look at this photo AND I asked them “HOW DO I LOOK?”

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Look, I’m like anybody else. I want to look good.  But I especially wanted to people to look at how I looked yesterday so they could see how I look a short week after  diagnoses of pneumonia and heart failure .

And even though I asked others “HOW DO I LOOK?”  I look at it this way:  What’s most important is how I thought I looked. If somebody else had looked at that photo critically and judgmentally, their looks would not have mattered to me, at all.

Are you ready to look at other images I looked at yesterday?

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Did any of those photos get a second look from you?

It’s time to look at some music!

I’ll take a look later to see if I get any comments for this post about looks.

Look!  It’s me thanking you for looking at my blog, here and now.

Categories: celebrating, personal growth, photojournalism, staying healthy | Tags: , , , , , , , , | 55 Comments

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