Friday, March 19, 2010

The Heart Beat Diaries

Logo from Euan Sharp's Heart Beat Diaries blog
Last week's episode of House concerned a young woman, a blogger, who fell ill with some mysterious condition that nearly killed her. Throughout her ordeal, she blogged every detail, pulling her computer to her bedridden lap as each new symptom developed.

I was reminded of this tonight when reading one of my favorite bloggers, Ms. Sparrow. She wrote of another writer, a young man named Euan B. Sharp who had been awaiting a heart transplant. Euan had just died, Ms. Sparrow wrote, as she linked to his last post.

It is beyond strange to see this snapshot of what Euan was thinking as he awaited his final surgery, to read his last tweet ("Called to heart transplant @ 1:29am. In hospital getting prepped. Let's hope it's third time lucky!").

I don't mean to turn Euan's tragedy and his friends' and family's grief into a cold, sociological case study. Reading his words makes him real enough to bring tears to someone who never knew him in person.

But after reading his blog, I can't help thinking Euan might be interested in the same angle if he had the chance.

In a February post, Euan wrote about the role of social networking technologies in the lives of people like him, the sick and housebound:

That’s the injury of undergoing a long, slow and steady decline in your health. Besides the obvious losses, like stamina and strength, there are the invisible ones. The wounds to your social life. The loss of contacts. The falling by the wayside that inevitably occurs when you can no longer attend get togethers and have to opt out of most social engagements. Gradually you’re overtaken by a creeping irrelevance, until the point that you actually begin to feel like someone’s distant memory.

At least Facebook and Twitter are able to keep you in the ongoing conversation. Probably more important than actually ‘being there’ is being thought of, being considered. And that’s where social networking has saved the day for us chronic “sickos”.
All that connection has a downside, he goes on to say:
While it’s an amazing way to still be heard despite your physical absence, you also get a front row seat to what you’re missing out on. So-and-so has a birthday coming up? Too bad, you won’t be going to that. What’s-his-name got drunk and fell down the stairs at last weekend’s shindig? That must’ve been hilarious! Sucks that you missed that one. While Facebook can certainly keep you in the loop, you’ll still miss out on the fun.

The biggest bag over the head and kick to the gut, however, is the phenomenon of watching other people enjoying their milestones while you sit waiting quietly, patiently on the sidelines. I’ve read them all: A new baby is born. A new house is bought. A new job is landed. With each announcement I hear, I can’t help but feel my life, my life force, that which drives me upward, is stagnating and deminishing. Like a rocket launched from a pad that’s run out of fuel mid-flight. Have I reached my apex? Is this all there is for me now? My peers are slowly pulling away from me. Leaving me behind, step by step, accomplishment by accomplishment. Won’t anyone wait for me?

One day my hope is that I’ll get to rejoin them in life’s ascent.
But on March 16, Euan got the call to go to the hospital for his heart transplant. I don't know what happened, but something went wrong and it wasn't successful, and he died. And now this artifact of his life and thoughts is left up in the WordPress ether, to be found by other heart transplant patients or people who ruminate on the way of life and death in this age.

It's one piece of immortality.

One final thought: What Euan -- a Canadian -- didn't appear to worry about in his blog posts was paying for his medical care. I'm glad for him and his family that they knew he could get care that extended his life from his earliest heart problems as a child into his late 30s.


Blissed-Out Grandma said...

Thank you for this thoughtful post. I, too, saw Ms. Sparrow's post and went to Euan's site, and I was moved by his words. I didn't read all that he said about social networking, but now that you've quoted it I can see how it cuts both ways. Still, he chose to participate as fully as possible rather than drop out. I admire him for that. And thanks for pointing out that he didn't worry about health care!

SLMIB said...

Why was your last comment necessary? Perhaps it was not your intention, but you come across as insensitive and snippy. In that one sentence, you strip away much of the sincerity of any of what you wrote prior to it. What do you know about Euan's healthcare arrangements and financial position, and more to the point, what do you care? What the hell do you know about what he worried about? Is it not enough for you that he had to worry about how long he had before his heart eventually gave up on him?? For your information, Euan earned a good living via hard work, determination and talent throughout different periods in his life. He was very much independent of his family in that regard, for long periods of time. As a blogger who chooses to write about a young guy who recently passed away, I feel you have a responsibility to at least exercise some genuine empathy. Pointless and untimely.

elena said...

?? Not sure I follow you, SLMIB. Of course it is easy to misread emotion in communications of this kind, but you seem to be reading malice (and expressing that fairly maliciously, too) into a comment that I believe was not meant to insinuate anything specific about Euan's independence, work ethic, or financial resources. I read it as a comment on the difference between the Canadian health care system and that in the U.S. Some people in the United States with health conditions similar to Euan's are denied health insurance and medical care on the basis of having a pre-existing condition. That observation strikes me as DN3's empathetic (and indeed, timely) way of expressing concern for those people. It does not diminish in any way the respect she communicates in this post for Euan B. Sharp.

elena said...

PS I just want to add that I think that everyone, everywhere, "worries about health care." Even with good coverage and fine hospitals and dedicated doctors and nurses, things can go wrong. Part of what makes Euan's blog so important is that he talks about living with the awareness that his life is in many ways beyond his control. That's poignant and sad in this particular case, and I think we could all find ourselves in a similar situation. Because he was so honest about the way his prospects were shrinking due to his disease, Euan's words elicit compassion, concern, and sadness knowing that his wait ended this way – despite the hope and optimism he also communicated.

Daughter Number Three said...

Clearly, SLMIB, I do not know the particulars of Euan's health care arrangements or financial position. I'm sorry if you interpreted my final comment as in any way impugning Euan.

All I know is what is on Euan's blog, which made it clear that he had worked successfully as an animator, and that he was Canadian, which I assumed meant he would be part of the national health care system, like other Canadians. From my reading, he did not write on the blog about worrying about paying for any of his care.

This seemed noteworthy to me because it is unlike the experience of some of my American friends who have life-threatening illnesses.

I am very sorry for your loss.

Ms Sparrow said...

Thank you for your tribute to Euan.
I was frankly surprised at how deeply his sudden death affected me. Maybe because it seems so unfair or maybe because when watching House, we come to expect the happy ending.
I'm sorry that SLMIB misinterpreted your point about the Canadian universal health plan. I too am glad that with all the problems that Euan lived with,
bankrupting his family for his health care was not one of them.

SLMIB2 said...

My Google account is not letting me in for some reason, but I rejoined just to say this. I am not interested in a debate about it, however the fact remains, there is a time and a place for throwaway, soapbox-type remarks - this was not it. Yes this is your personal blog and yes, I have entered your 'domain' by reading your words, however when you choose to discuss the recent death of another, on the internet no less, you should adhere to unwritten rules. I find your last comment in particular to be both discourteous and dismissive of many factors. Speculation is neither helpful nor appropriate. Food for thought.