Posts Tagged With: living with CHD

Day 2504: Please pardon our appearance

In the past, when I have had red eye (which I am prone to developing because I’m on anti-coagulant medication for the rest of my life), I have asked people to please pardon my appearance.

I assumed that

  • people were bothered by my appearance and
  • I needed pardoning.

No more!  From now on, whenever I get red eye, I shall ask for no pardons.  Why should I?  After all,

  • I am appearing as best as I can,
  • I love the color red, and
  • nobody’s appearance needs pardoning.

I am also not going to ask you to please pardon the appearance of my latest photos.

 

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I’m also not going to ask you to pardon the appearance of last night’s special at the Birch Street Bistro in Roslindale, Massachusetts, which was delicious.

Personally, I find it very freeing to stop asking for pardons about appearances.  Does anybody want to join me in that?

Here‘s “Guide for the Perplexed” from PARDON OUR APPEARANCE by The XVIII  Century Greats.

 

I like the appearance of that dog and I look forward to your appearance in the comments section, below.

Please accept the appearance of my gratitude, here and now.

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Categories: group therapy, personal growth, photojournalism | Tags: , , , , , , , , , | 24 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 2444: Different

Although I’ve published many different posts, including Day 2358: 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 2381: Roadmap for a respectful culture

Hello, my respectful readers!

Yesterday, I noticed this big roadmap on the office wall of our Senior Director of Social Work and Patient/Family Engagement at the hospital:

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Respectfully, I realize that parts of that important roadmap are difficult to read.  I hope this helps:

Version 2

In case it doesn’t, I respectfully submit this list of behaviors promoting a respectful culture:

  • Intentionally engaging and including all constituents by participation and information sharing
  • Spending time with people
  • Introducing new employees via walkabouts through the department
  • Saying thank you
  • Asking questions
  • Listening more, talking less
  • Paraphrasing to check understanding
  • Coming up with at least 3 possible rationales for an action
  • Making eye contact
  • Saying “hi” to everyone
  • Helping those who are lost
  • Smiling
  • Show gratitude frequently
  • Asking for and accepting help when needed
  • Asking for feedback across, down, up

Yesterday, I met our neighbor Will Isenberg,  who is offering a roadmap for a respectful culture …

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I’m voting for Will on September 10 because I believe his roadmap will lead to a more respectful culture.

Today, I will be respectfully appearing on the podcast Heart to Heart with Anna, in which Anna Jaworski and I will be intentionally engaging and including all listeners by participation and information sharing about my very unusual heart. I don’t yet have a specific roadmap to my episode, but I’ll insert that link later today.

Here’s the link to the podcast. The first airing will be noon USA Eastern time.

And this link lets you listen at your convenience.

I respectfully submit all my other photos from yesterday, wondering which offer a roadmap for a respectful culture:

What music comes to mind when you think of a roadmap to a respectful culture?

This is what comes up on YouTube:

This shows up, too:

Now I’m asking for feedback across, down, up, with a respectful roadmap to the comments section, below.

Since gratitude is such an important part of a roadmap to a respectful culture, thanks to all who helped me create this blog post and — of course! — to YOU.

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Categories: health care, heart condition, personal growth, photojournalism | Tags: , , , , , , , , | 22 Comments

Day 2376: Special Operations

Yesterday, on a special day, I noticed “Special Operations” on a parked  police motorcycle.

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I thought, “I’m going to be interviewed for a special podcast tonight about my special heart and several special operations, including open heart surgery.”  As I was taking that special photo for today’s “Special Operations” blog post,  I heard somebody speaking to me and that turned out to be special operations officer Hicks:

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I explained to Officer Hicks, “I took that photo because I’ve had many special operations on my heart.”  He said something special, like “Those special operations must have gone well because you look pretty good considering you’ve had all those special operations.”   He also said he didn’t think he was handsome enough to be in a blog, which I thought was especially modest.

Officer Hicks and many other special operations officers were in Boston yesterday, in preparation for the special Boston 4th of July celebration today. Minutes after I photographed special operations officer Hicks, I noticed something special on my car.

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I thought, “What?!?! It’s true that I just spent a long time getting a special teeth cleaning and also talking to my special dentist Dr. Del Castillo, who is doing so well after having the special operation of a double lung transplant, but I don’t think that took over two hours!”  I looked more closely and saw this special reason for that ticket:

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Since when do they give out special tickets for being over 1 ft from the curb, especially since only the back of my car barely met that special criteria?

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I know that special operations officer Hicks is not somebody who gives out tickets and —  in case he thinks that I’m looking for special treatment —  I already did an online special operation last night to pay it.

Do you see any special operations in my other special photos from yesterday?

As you can see from those photos, I did a special operation of pre-medicating before my dental cleaning and did a special operation  when I got home — trying out a new cat carrier on Oscar, our cat-in-a-bag.

After my special boyfriend Michael and I walked around our special neighborhood last night (and saw some unexpectedly special fireworks and a special beach bonfire), we danced to this special 4th of July song:

Now, I’m going to request that you do the special operation of making a comment, below.

Happy July 4th to everybody who performs the special operation of reading this blog, including YOU!

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It took me several special operations to upload my photos today. I hope you don’t have to perform any special operations to see them!

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

Day 2375: 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 934: Feelers

Yesterday, I found out that Kerri,


a nurse I’ve happily known for years, is leaving Boston for sunny Florida next month. As we were bidding each other a fond “adieu,” I said to her

I always have my feelers out for kind, wonderful people, and from the moment I met you in the Emergency Room all those years ago, I recognized how amazing you were.

Feeling the need, just now,  to looked up “feelers” in the dictionary, I found this:

An animal organ such as antenna or palp that is used for testing things by touch or for searching for food.

I don’t know about you, but my definition-seeking feelers have never previously  touched on  “palp,” before today.

And, my blog-creating feelers would change

searching for food

to

searching for nourishment

… but otherwise, I feel that definition is fine, for the feeling purposes of this post.

Speaking of feelings, I told Kerri I was glad for her but sad for me and other feeling, Boston-based people who know her.

As you might have felt before, I often have my feelers out for images that strike my feeling fancy, as I feel my way through a day. Here’s what my photographic feelers found yesterday:
  

  
  
  


  

  
  
  
  




  

What do your feelers tell you about those photos?

My feelers are telling me that other  feelers might assume — from those feeling photos — that I have cancer. I do not. I have a cardiac condition that necessitates my getting antibiotics before I visit my dentist, and I get those antibiotics in a cancer infusion center, where my fine-feeling-friend Kerri works (until August).

Also, there were many things my feelers encountered yesterday that did NOT make it to this post and — as usual — I’m hoping I didn’t hurt any feelings.

Here‘s what my musical feelers have brought back from YouTube:

Bernadette Peters is singing “I Feel You, Johanna” from Stephen Sondheim‘s Sweeney Todd.
Also, my feelers found this:

“I Peel You, Banana” by Robert Adams.

Feeling thanks to Kerri, the Infusion Center at Tufts Medical Center, Cam Neely, Dr. Del Castillo, Dr. Gonzalez and Michel (not pictured) at Beacon Hill Dental Associates, everybody at my high school reunion planning meeting last night (not pictured), Bernadette Peters, Stephen Sondheim, Robert Adams, and you — of course! — for bringing your feelers here, today.

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

Day 918: Tangled up

Yesterday morning, these earphones …

… got tangled up, and it took me a while to untangle them before I left for work.

Immediately, some music got tangled up in my head.

Then, those same earphones got Tangled Up in Blue (and other colors):


Next, I got tangled up in traffic,


  
… tangled up in some confusion,


  

… tangled up in love for my friends and co-workers Jan and Mary,

… and tangled up in many found objects  (some of which were blue):




  
  


      
  
  
  
  
  




Before I get too tangled up in today’s post, I want to untangle these things:

  • The  beautiful, untangled necklace was worn by Linda, one of my favorite people at the hospital-based Primary Care Practice where we work.
  • Mary, a clinical social worker like me, told me a few weeks ago, “I’ve been doing this experiment where I look for a specific color in my surroundings, and it’s amazing how everything with that color then pops out at me!”
  • I’m not sure whether my recent cardiac surgery is helping me feel significantly better, but I’m sure I’ll untangle that and other heart-related issues when I see my chief cardiologist, Dr. Salem, eight days from now.
  • As much as I admire the incredible accomplishments of Bob Dylan, I am  tangled up in surprise that I don’t love his music and lyrics more than I do.

What are you tangled up in, right now?

Tangled-up thanks to Mary, Jan, Linda, Bob Dylan, Dr. Salem, my earphones, cats, bunnies, and  everything blue (and non-blue)  I got tangled up in yesterday. Also, special thanks to you — of course! — for untangling yourself enough to visit here, today.

Categories: personal growth, photojournalism | Tags: , , , , | 43 Comments

Day 911: Does that ring a bell?

Does the expression “ring a bell” ring a bell for you?

Here’s the definition, from Google:

1. informal

 revive a distant recollection; sound familiar. 

“the name Woodall rings a bell”

For me, the name Woodall does NOT ring a bell. Does that name ring a bell for you?

Here are some things that have been ringing bells for me lately, but differently than they’ve rung in the past:

  • Technology and machines have been misbehaving. For example, my WordPress phone application froze this morning, so I deleted it (despite the daunting  message “If you delete WordPress you will delete all data”) and then reinstalled it — feeling almost no fear  about that.
  • I’ve been summoned to a meeting today at work that’s supposed to be very important, with somebody I don’t know, with no explanation about who, why, or what I am expected to do, and I am feeling almost no fear about that.
  • As I’m writing this, I’m aware of my newly implanted large  cardiac device that’s causing me some physical discomfort, and I am feeling almost no fear about that.
  • I’ve been asked to give a training presentation about my “Coping and Healing” therapy groups in August, and I am feeling almost no fear about that.
  • I am realizing that I may conceivably hurt somebody’s feelings or offend somebody at some point  (an inevitable occurrence in human interactions), but I am feeling almost no fear about that.

Is this post ringing any bells for you, so far?

I thought of the  title for today’s post yesterday, when I was walking and listening to music that rings bells for me.

Does that ring any bells?

Here’s the tune — which used to be my phone ring tone — that rang that bell for me, yesterday:

Booker T & the MGs are ringing bells and playing lots of instruments  on  “Green Onions,” here at YouTube.

Typing “Booker T & the MGs” just now rang this bell for me:  Talking to WordPresser Mark Bialczak, a few weekends ago, about spelling the names of bands accurately.

Perhaps these photos I took yesterday will ring some bells:


  
  
  
  
  
  

If you leave a comment about this post, that will definitely ring my bell.

Bell-ringing thanks to all people, pets, food, and places that helped me write today’s post and special thanks to you — of course! — for whatever bells are ringing, here and now.

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

Day 909: I Heart Accuracy

Two days ago, somebody came to therapy wearing this t-shirt:


I ❤  accuracy,  but I would never wear that t-shirt. To be accurate, my heart (because of my congenital heart condition) does not look like that.

To be accurate, I ❤ many things, including:

  • Accuracy
  • My heart
  • Other people’s hearts
  • My son, Aaron
  • My boyfriend, Michael
  • Blogging
  • My readers
  • Spontaneity
  • Walking
  • My work, as a psychotherapist 
  • My friend Jeanette, whom I met at Film School in Boston in the 1980s and who lives too far away (in Philadelphia), which I do not <3.

Yesterday, I spent 1 hour walking, while my son was at his keyboard  lesson in Arlington, Massachusetts.

Then, I spent 5  hours with Jeanette.

❤ ❤ ❤ ❤ ❤

I ❤ these photos:


I ❤ Spy Pond.


I ❤ signs.

I ❤ green and shadows.

I ❤ several things about that picture. 

 I ❤ that paw print and “Run!”

I ❤ loving couples.


I ❤ celebrating pride (at 11:30 or any time). 

I ❤ “Turn Around.”

I ❤ “Still movin? That’s right you are!”

I ❤ the 4th of July and how my late father used to ask people this question:

Does England have a 4th of July?

I ❤ people taking naps, although I usually don’t take them.

I ❤ Jeanette.

I ❤ Jeanette’s smile.



I ❤ those t-shirts, but I didn’t ❤ them enough to buy them.


I ❤ the way Jeanette and I riffed about the big-headed bird on that moving van.

I ❤ Jeanette,  at our home.

I ❤ Jeanette and our cat Oscar.

I ❤ Aaron, Michael, Oscar, and Jeanette (l. to r.)

I ❤  Oscar and Aaron.

To repeat, I ❤  Accuracy.

What do you <3? I would ❤ it if you’d let us know.

I ❤ that Neil Young is singing “Heart of Gold” on YouTube.

I do NOT ❤ how WordPress keeps leaving off parts of this post, as I’m trying to publish it.

I ❤ thanking Jeanette, Aaron, Michael, Oscar, my late father, Arlington, Belmont, people who show their hearts, Neil Young, and you — of course! — no matter what you <3. 

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

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