Tag Archives: Facebook

Invisible Disabilities

6460_106918074940_3438260_nAs my annual cardiology appointment approaches (on April Fool’s Day no less), I find myself in that annual state of nostalgia that occurs every time around this year. It might have something to do with the fact that my husband and I trek 4.5 hours south of DC to visit my original cardiologist and surgeon. I am more than loyal in this respect.

When I moved to Northern Va over a decade ago I tried to find a new home in the cardiology mecca that existed up here. Instead, I found crowded offices that treated patients like cattle, ushering you in and out before you had time to process any of what they were telling you. Well-oiled machines: yes. The safe space I had been accustomed to: no.

453fb830a28f434d1c4288a6712507aaIt is necessary to point out that I fall under the category of “high-maintenance patients” in that I have a lot of questions and an even higher amount of anxieties. I have invisible disabilities. I need coddling. Thus, I travel to Virginia Beach where my original surgeon, Dr. Gottimukala, practices.

He and the pacemaker technician, April, have been with me in this journey of my heart since the beginning. They consoled me when I first heard of the diagnosis. They have learned the ins and outs of my anxieties and know exactly how to deal with me. They know what I will and will not tolerate. They take my calls, deflate my panic, and they give the kind of hugs that mean something. What I appreciate most: Dr. Gotti will spend as much time as he needs to with me without making me feel like I’m a hassle. I recall one visit, in the midst of diagnosis as well as my divorce from my first husband, when he walked in with his kind face and said, “How are we doing today Carrie?”  I didn’t answer. I sobbed. For at least ten minutes. He pulled up a chair, handed me a box of tissues and waited for me to finish. It could have been hours. He would have waited. Luckily it was not, I managed to pull myself together.

There’s something poignant about the literal and figurative breaking of the heart occurring at the same time in a small office of cardiology in Virginia Beach under neon lights. I remember bringing them a gift basket full of chocolates and crackery snacks after that. I think it’s the only gift basket I’ve ever bought anyone just because I thought they were deserving of it. That’s saying something.

I also appreciate Dr. Gotti’s one-liners. My first surgery went off without a hitch and as he emerged from the surgery he told my dad, “She’ll be walking down the aisle at 70 beats per minute.” (The surgery occurred four weeks before my wedding.)  My second surgery to replace the battery a few years ago went off well too. He appeared out of the operating room and told Jason that in twilight during the surgery I professed my love for him. It might have been partially true. I do love him.

I had my first implant when I was 23, so the issue of having a pacemaker was compounded by the fact that I was young, and believed I was “invincible.” My struggles were different. I was concerned with more vain issues like scar size and placement, and I found myself bothered by displacement issues. The waiting rooms were commonly  filled with patients three times my age. This was an issue I wanted to combat and which is discussed in the article “For Young People with Pacemakers” which gives a shout out to the Facebook group I created, “Young Pacemaker Patients and Supporters.” The group was created to allow younger recipients and their families a safe haven and communal space to share their challenges and concerns. It’s pleasing to see the group has grown in the last few years to almost 300 members.

So tomorrow I will drive down and back in a day to Virginia Beach for what will be a relatively quick appointment to ensure my broken lead in my pacemaker hasn’t wreaked too much havoc on anything. See Image B for a depiction of a broken lead. F1.medium

People are always surprised when I tell them I make the drive to visit him rather than find a doctor more locally. My priorities are different. My expectations are different. My experiences are demanding of difference.

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Oh Facebook Friends, I Duped You

It recently occurred to me in a coffee-time conversation with a good friend that the capacity of individuals to share in and embrace each other’s happy moments is quickly dwindling. Said friend mentioned that the world we live in today has various social media platforms on which to parade around our achievements and happy moments in front of the masses, friend or foe. I was already aware of this shift in communication, and I also knew I was overly participating in the new trend. Then the poignant moment came. He said, and I’m paraphrasing: people are so inundated with each other that no one wants to be happy for your achievements, your progress. But they are quick to jump on the bandwagon of celebrating the negative. It’s a silent participation in your most intimate moments.

UnknownThis may seem obvious but I was hesitant to accept it as reality. I have already begun the downward decline of my appreciation and enjoyment of said Facebook craze, but I decided after this conversation stuck in my craw that I needed to test this theory.

Let me begin with what I concluded from my “test.” 1.) My friend’s hypothesis is true. The masses participate more in random comments or negative observations. 2.) The positive received very little love in the way of “likes.” 3.) People mostly subtly participate (and by that I mean they stalk the hell out of your wall).

Here was my test:

  • To my pool of over 300 friends (maybe 10 actually know of and love the ugly parts of me), I posted a few random comments regarding the ways of the world or something that happened to me. I ensured each of those posts contained a slightly or obvious negative undertone. 
  • The first post received 22 “thumbs up” and 11 comments.
  • The second post received 19 “thumbs up” and four comments.
  • Then I posted an announcement of an something positive. I received two likes the first week (the usual suspects). In the following weeks it slowly raised to nine likes (again the usual suspects).

I found myself genuinely disappointed. What I had feared social media was doing to our ability to interact and communicate with each other was actually happening. A general google search on the subject will bring you a slew of articles that broach the subject and mostly with the results and reactions we’d expect.  The stats yielded from studies will leave you wanting to deactivate everything immediately. The breeding of passive communication and pure laziness has taken over for the fine art form of interpersonal communications, a skill listed on my c.v. for decades that seemed mostly unnecessary until recently. It’s actually considered a practiced skill now. You can interact with other humans without the use of social media or technology? Hired!

Forbes magazine tried to get us to stop the madness before the new year was rung in with an article titled, “3 Reasons You Should Quit Social Media in 2013″ which highlights a UK Study in which 50% of respondents noted that social media has an overall negative effect on their lives.  We all know we should. We simply can’t help ourselves. I can’t help myself.

Last week I was in a funk for what seemed like entirely too long and for reasons I couldn’t identify until I began drafting this post. I was genuinely disappointed with people in general and decided I did not want to contribute to it anymore. I also did not want to continue giving those who don’t actively participate in my life a glimpse of what it’s like. Why call me or visit me if you can virtually do it on Facebook, right?

Now I do realize the irony of the fact that I’m writing this blog post which will post to my Twitter and Facebook accounts accordingly, but I suppose I justify the madness if it helps promote a business, or in this case a writer’s work. So that’s how I’ll trek on.

Just yesterday a good friend told me they don’t have a Facebook, a Tweeter (ha!), or anything of the like. I asked why and the response was so simple and so refreshing a thought: I have never liked people eavesdropping on my conversations. It’s hard to escape a life like that when everyone knows everything. I like me time and it’s hard to be present in certain moments when you are clouded by crap.  


Jeffrey Levine

poetry, publishing, and mentoring

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