life, love,art. heart failure and assorted ramblings

life, love,art. heart failure and assorted ramblings

Don't Talk Like That...

I write to find out what my heart thinks....
I write to expose and work through the ugly parts of this disease, open heart surgery that was less than successful and more recently an S-ICD (internal cardiac defibrillator) implanted in my chest that will hopefully restore my heart beat in case of sudden cardiac death. I am here to celebrate my life, to uncover my fears, to hold on to love, to learn how to live a full life with heart failure, to honor my creativity, and to explore all of my emotions out loud ...before anyone can say
"Don't talk like that!"


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Thursday, February 17, 2011

I'm Working On It....

Revelation #1

I have had a wonderfully simple and incredibly enjoyable DIY (do it yourself) life. I grew up in an extremely harsh and emotionally volatile environment but I grew up strong. For the most part, this has served me well as an adult. However, I am now realizing my definition of strong firmly incorporates the idea that asking for and accepting help is a patent sign of weakness. Combine this ingrained defense mechanism with an overpowering need to prevent this disease from consuming my independence and you have the perfect irrational inability to ask for and/or receive help.
Intellectually, I understand the problem I just do not have all the answers yet, but I am working on it!

Revelation #2
is not an all together new one, but it always bears further investigation.

There is a gigantic emotional support void between disease diagnosis and the end stages of life. There is some support at the onset and counseling available in the end but nothing for the in between. I am left out here on my own, twisting in the wind, desperately trying to make sense of this life while maintaining some meaningful purpose. The doctors are only interested in keeping me alive longer; I am only interested in being fully alive now and emotionally prepared for the end.
I know, as do most terminal patients, the gruesome details of how this will end but what I want right now and crave more than anything is some good old fashion “Slap my ass, it ain’t over yet, honey” information on how to capitalize on my existing strengths and to live fully, in the now. Not another lame relax, conserve your energy, avoid stress lecture. (Sorry, I got a little militant here. I am working on that, too)

Revelation #3
and the big finish!

I do not honor this incurable disease. I will not give it any more power over my life by extending how long it lasts.
I do want to live the rest of my life fully present with extreme purpose. I want tons of love and laughter (and no pity) regardless of the physical circumstances and/or consequences. I am stealing a quote from the movie Steel Magnolias, that says it best, “I’d rather have 10 minutes of wonderful than a whole life time of nothing special.”

You may have realized by now that I am really good at indentifying problems but not so great at immediately identifying a solution. Again, I am working on it!

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