Posts Tagged With: Dealing with chronic illness

Day 735: Monday matters

Today, on this first Monday of 2015, I am:

All of these actions matter to me, this Monday morning.

This morning, before I leave for the day, I am telling myself:

I matter, as much as anybody else in this world.

That mantra matters to me. It also matters to me to invite you to imagine what phrase might help you, today.

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If you thought of a helpful phrase that matters to you, I invite you to say it to yourself (and to share it here, if you choose).

I’m reminded of a mindfulness exercise I use, in my groups, whenever somebody new is present (which matters a great deal). In this exercise:

  • when we breathe in, we think of something we want to take in from the universe and
  • when we breathe out, we think of something we want to let go of.

Today, I choose to breathe in hope and breathe out fear (which matters and helps).

Yesterday, it mattered to bring along Penny the Pen with me and boyfriend Michael (who matters a lot), as we went walking and then food-shopping at our local supermarket.  Would it matter to you if I showed you some photos?

IMG_4475 IMG_4478 IMG_4476 IMG_4489IMG_4484 IMG_4493IMG_4494 IMG_4496 IMG_4498 IMG_4499 IMG_4502

This song mattered to me, when I was growing up in the Northeastern USA:

(If it matters to you, you can find “Monday Monday” by The Mamas & The Papas here.)

Many thanks to Michael, to Vahan (previously appearing in this post, which  mattered to me when I wrote it), to Mamas & Papas, to children & adults everywhere, to colorful flowers and other blossoming things, and to you, who matters on Monday and every other day of the week.

Categories: personal growth | Tags: , , , , , , , , | 41 Comments

Day 691: How are you?

Where I live, when people say

How are you?

they often mean

Hello

and don’t expect a real answer.

A typical exchange is:

How are you?

Fine. How are you?

or

How are you?

(nod and silence)

When people say, “How are you?” to me, my usual response is to answer authentically, in some way, without taking too much time or space (which is not exactly easy, since people are often asking that question on the move).

I’m not sure why I go against the cultural norms, regarding “How are you?” Here are my best guesses, in the moment:

  • Because I was born with an unusual heart and followed by doctors since before I could speak, that question has been really important for me to answer honestly and authentically.
  • I want to engage in real and valuable communications with other human beings, even if they only last a moment.
  • I’m a rebel.

That last bullet point reminds me of a song, from my past.

Before I share that song, I’m going to ask you to guess what song that might be.

Why am I asking you to guess?  Because if you were to ask me “How are you?” today, I would answer:

“I’m sad, mad, glad, and scared.  How are you?”

and when I’m having lots of mixed emotions, I like to cheer myself up.  And this is how I am: I love guessing games AND music.

I am now going to look for the song  that just popped into my head  — for the first time in years — when I wrote the words “I’m a rebel.”

Oh  no! When I searched for the song I remembered, I found that the title was NOT “He’s a rebel,” but something else instead:

(“He’s a Runner” by Laura Nyro, performed by Blood Sweat & Tears found here on YouTube.)

How are you, now that I’ve made that mistake?

How am I? I wonder.

Well, I’m glad to be listening to that song, for the first time in decades. With its interesting chords, voices, instruments, moods,  and other musical stylings, it’s making me happy.

How else am I?

I’m also happy with the idea of being a runner, right now. When I was a kid in the hospital, having heart surgeries, I really wanted to run away. But, back then, if people asked me “How are you?” I didn’t tell them.

How else am I?

I’m glad to be writing this, on the anniversary of my first heart surgery/pacemaker implant, on November 22, 1963. Last year, on this same date, I asked myself  “How are you?” and wrote this blog post.

How are you about statistical data and research? I wanted to share with you this study I found online, yesterday, when I was searching information about “Congenitally Corrected Transposition of the Great Arteries” (which is one medical name for my very unusual heart).

Here’s the complete abstract:

J Thorac Cardiovasc Surg. 2012 Apr;143(4):885-90. doi: 10.1016/j.jtcvs.2011.08.031. Epub 2011 Sep 28.

Quality of life and perceived health status in adults with congenitally corrected transposition of the great arteries.

Abstract

OBJECTIVE:

The purpose of this study is to assess perceived health status and quality of life in adults with congenitally corrected transposition of the great arteries who have not undergone anatomic repair.

METHODS:

Quality of life as measured by the satisfaction with life scale and linear analog scales and perceived health status as measured by the Short Form 36 Health Survey (version 1) were evaluated in 25 adults with congenitally corrected transposition and compared with a control group of 25 adults with mild, hemodynamically insignificant defects.

RESULTS:

Instruments were returned by 83% of patients (25/30; 11 male; mean age, 44.6 ± 16 years). Health status by the linear analog scale was significantly lower (P = .03) in subjects (median, 80; range, 15-100) than in controls (median, 85; range, 65-100). Quality of life by the satisfaction with life scale was also lower (P = .009) in subjects (mean, 24 ± 8) compared with controls. Age was negatively correlated with the Short Form 36 Health Survey physical functioning (r = -0.41, P = .04), bodily pain (r = -0.5, P = .01), and physical component (r = -0.56, P = .004) summary scores in adults with congenitally corrected transposition but not in controls.

CONCLUSIONS:

Adults with congenitally corrected transposition have lower reported health status and satisfaction with life than a control population, with perceived health status declining with advancing age.

Copyright © 2012 The American Association for Thoracic Surgery. Published by Mosby, Inc. All rights reserved.

This is how I am: I like to interpret data, using my own language. To me, that abstract means that several doctors and researchers got together and asked a bunch of people with my very unusual heart “How are you?” and then compiled the answers to conclude that people like me feel worse, in many ways, than “normal” people, and that difference continues to get more significant, with advancing age.

How am I, about that?

Fuck them.

How am I now?

Better!

Here’s another way I am: I like to post photos I’ve taken recently. Let’s see if I have any images, on my iPhone, for “How are you”?

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How are you?

No matter how you are, thanks for the visit.

Categories: inspiration, personal growth | Tags: , , , , , , , , , | 29 Comments

Day 584: The Red One

Here’s the cool music that came on, yesterday, as I started my walk to work.

(YouTube video found here)

It’s “The Red One,” written by Pat Metheny and played by two amazing jazz guitarists: Pat and John Scofield.

I learned yesterday why that tune has that title.  Somebody at a Pat Metheny concert once yelled out “THE RED ONE!” requesting that Pat play his special red guitar.

Here’s a live version of “The Red One,” so you can see Pat Metheny and John Scofield, playing away,  plus guitars of different colors (none of which look red, to me):

(YouTube video found here)

Anyway, when that tune came on yesterday, I thought

That, right there, is a very adequate title and topic for tomorrow’s post.  Not only does that give me an excuse to share something else by  my favorite musician and tell people about two of the finest jazz guitarists performing anywhere in the world,  it also provides the perfect balance of structure and freedom for the photographic component of the post, allowing me to seek an aesthetically pleasing and visually cohesive solution that embraces perhaps photos I’ve taken in the past as well as those I can take today.

Actually, my thoughts weren’t really like that. My actual thoughts were more like this:

The Red One! Wow! I love that song!  Hmmmm.  Photos? Ooooh!  I like to take pictures of colors, numbers, and stuff like that! Yay!!

And, immediately, I snapped this photo, in service of “The Red One” theme.

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That certainly fits the premise, I thought.  I mean, there IS a red one, in that picture. However, that’s a little too advertising-y, for my tastes.

What do you think?

There MUST be other photos I can find for this piece, that are less commercial, I thought, yesterday morning.  I’m sure I can find images, today, that include …

  • the color red,
  • the number one
  • red letters,
  • other red things, standing out amidst obviously non-red things, and
  • other riffs on the theme “The Red One.”

Hey (I thought) !!! What if I find and show things that are a close-to-perfect realization of tomorrow’s post theme and then –BIG FINISH! — hit my readers with an ACTUAL RED ONE.

I was very pleased with myself, about these ideas.

And, immediately, I saw and snapped these:

IMG_7711      IMG_7712IMG_7713 IMG_7714 IMG_7715 IMG_7716

At this point, I was thinking …

Ooooh!  Maybe I can make the point that when we choose a theme or a way to look at things, THAT is what we’re going to see.

I also thought

I hope I don’t take TOO MANY photos today.  I have sooooo many things to do and take care of. I don’t want to spend too much time photographing and I don’t want to get overwhelmed, later, trying to decide among too many pictures.

And then, I noticed this:

IMG_7717

Okay, then!  I reached my goal, for the day.  I found The Red One!  Now, I can relax.  My preparation, for tomorrow’s post, is done, I thought.

But, somehow, I couldn’t help myself. I took many, many more photos, throughout my day, that I believed could fit my theme.

Now, as I’m creating this post, I have two other goals: I don’t want to overwhelm (1) me or (2) you.

Let’s see how this goes, shall we?

First of all, before I show you any more photos,  I want to tell you that I took (hold on, I’m going to count) ….

ONE HUNDRED AND SIXTY-ONE photos yesterday.

Wow.  I’ve really got my work cut out for me, today.  So many choices!  I usually take WAY FEWER shots, with my iPhone. As a matter of fact, often I show you most (or even all) of the photos I’ve recently taken.

Granted, some of those photos are ones that my iPhone snapped on its own, accidentally, with no intent of mine —  but that number is  (hold on, I’m going to count) …

12 of all the photos I took yesterday are obvious throw-aways.

Eeeek!  How am I going to show you photos that meet my theme AND capture my day yesterday, as I:

  1. Walked to work, from the parking lot where I leave my car,
  2. Interacted with many people, in the morning,
  3. Left work and walked back to my car,
  4. Went to Pacemaker Clinic to get my pacemaker checked, at a different hospital from where I work,
  5. Ran into one of my cardiologists, Dr. Salem,
  6. Drove home,
  7. Interacted with my son Aaron and my boyfriend Michael,
  8. Welcomed a veterinarian who makes house calls, so she could (1) give our two cats their yearly exams and shots and (2) meet our newer cat, Harley,
  9. Said goodbye to Aaron as he left for (1) the final dress rehearsal for his play and (2) his Wednesday night stay with his father,
  10. Spent quality time  with Michael, at our usual Wednesday evening haunts of (1) Panera Bread, for dinner, (2) PetSmart, to get cat supplies and to hang out with the animals there, and (3) Whole Foods, to hang out and buy one or two items that strike our fancy….

…. without getting overwhelmed?!?!?

I shall do my best.

Wait!  Here are some things I know will help me not get overwhelmed, from past experience. I need to make this task do-able, by setting limits. For example, I am now telling myself that:

  1. I don’t need to show you all the photos I took yesterday.
  2. The photos I choose will be good enough, for the purposes of this post.
  3. The post is already good enough (AND I can make it better).
  4. I can’t think of a fourth thing, right now, but that’s a good enough list, already.
  5. If I think of something else I want to tell you, I can add it later.

Oh!  I remembered one more thing I want to tell you: I didn’t take pictures of EVERYTHING yesterday.

Okay! I shall now present you with some photos I took, yesterday, inspired by “The Red One” (in order of appearance):

IMG_7718 IMG_7719 IMG_7733 IMG_7734 IMG_7735 IMG_7737 IMG_7741

IMG_7742 IMG_7744 IMG_7747 IMG_7750 IMG_7752 IMG_7754IMG_7756 IMG_7758 IMG_7763 IMG_7769 IMG_7773 IMG_7774 img_7777 IMG_7779 IMG_7787  IMG_7790 IMG_7794 IMG_7795 IMG_7798IMG_7799 IMG_7800 IMG_7802 IMG_7803 IMG_7805 IMG_7808 IMG_7809 IMG_7812 IMG_7817 IMG_7819 IMG_7821 IMG_7822 IMG_7823 IMG_7825 IMG_7831 IMG_7834 img_7839 IMG_7841 IMG_7849 IMG_7857 IMG_7858 IMG_7859 IMG_7861

Phew! That wasn’t so bad.

Am I really done, for this post?

Well, I think I need to explain at least ONE of those photos.  I mean this one, where there is NOTHING red to be seen, anywhere:

IMG_7831

That, ladies and gentlemen, is my 16-year-old son, Aaron, who has made two previous photographic appearances in this blog (here and here).  If you’ve seen Aaron before, you would know that his hair is, naturally, red. However, it’s dyed brown now, for his play.

Any questions?

Thanks to all the red ones in my life and to you — of course — because you READ this, today!

Categories: inspiration, personal growth, photojournalism | Tags: , , , , , , , , , , , | 29 Comments

Day 387: Why I’m not afraid of going out today

There are lots of reasons why I SHOULD be afraid of going out today, including:

  1. It snowed last night.
  2. It’s 9 degrees, in these here parts 1.
  3. The expected high is only 18 degrees.
  4. I don’t know what the friggin’ wind child factor is — how the outside world is SUPPOSED TO FEEL, according to some cockamamie calculation by some weather wonk — but, I can tell you this: that’s not good, either.
  5. With all of the above (plus my personal health “conditions”) 2, today has more obvious dangers, than yesterday did.

And in posts past, I have certainly written about my fear of the elements (see here, here, here, here, here, or basically any post I’ve written during the winter months,  for obvious or subtle clues about same).

So why aren’t I scared, this morning?

Well, I’ve had some practice — at this point in the winter of 2013/2014 — of dealing with all of the above. And I’ve lived — no worse for the wear. So that definitely helps.

What else helps?

In a previous post, I referred to books I’ve re-read many time, including The Courtship of Eddie’s Father, by Mark Toby.

Image

Several years ago, I ordered this book, from Amazon, so I could own it again.  While I did not take the photo above, I thought I could have when I wrote that previous blog post, because that book I ordered (plus the one I owned in the 1960’s) looked just like that picture.  However, when I was writing that previous blog post, it was easier to find a photo online, rather than look for the book.

Why?  Because of something else that usually scares me: Looking for something I own, for fear I will not find it.

I’m upstairs, while I’m writing this portion of the blog post. I believe that book is downstairs, somewhere. Today, I’m not afraid of looking for that, either, and I will, in just a moment.

But, wait!  I haven’t revealed WHY I want to look for that book.

Here’s why: This is my memory of the last line of that book, which has been echoing in my head, since I started writing this post:

Fall in love. Love will make you brave.

Aha!  There’s another reason I might be afraid to look for that book: fear that my memory might not be good enough.

Hold on. I’m venturing downstairs.

Hmmmmm.

While I found other treasured books from my past:

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…. no sign of The Courtship of Eddie’s Father.

What do I deduce, dear readers, from that?  Well, the book could have been destroyed, when the basement flooded at our previous residence. Or, it could be somewhere else, lurking, where we live now.

But, you know what? I’m not scared about any of that. And I’m not disappointed, either, even though I can’t use  my original plan for the ending of this post: A photo of the last line(s) of that book, which I figured would be close enough.

Instead, here’s another ending, which I love.

Thanks to all those reading, today, who love, are loved, or are brave for any reason. And that would include you (even if you don’t know it).


  1. That’s just my way of saying “Fahrenheit”, these days.

  2. Not to worry. I have a pacemaker and recently received a new diagnosis of atrial fibrillation, but I’m fine.  Really. I’m not just saying that! I just need to be more careful about injuries — like slipping on ice or getting into a car accident — because I’m taking anti-coagulant medication.

Categories: inspiration, Nostalgia, personal growth, photojournalism | Tags: , , , , , , , , , , | 35 Comments

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