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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Music is loading really slow lately...sorry...

Sunday, April 1, 2018

and so I missed my own opening reception....


Nope I am not in a wheelchair, but that is the symbol they attach to me for parking purposes, it is embarrassing.  

As the disease progresses, so does my need for my “gimp” parking.  It used to be mostly in the summer, at the grocery store in 98-degree weather on blistering hot black asphalt that I truly appreciated parking close, but now I appreciate it all of the time! 

So last night’s opening art exhibition where my work was exhibited, (and jazz concert) hit me with more surprise and hurt than I could have imagined possible and I cannot remember when I have felt so disappointed and hurt.  There was no accessible handicap parking or anyway to get close enough to even drop me and this lousy equipment off. Incredibly unexpected feelings of hurt, anger, frustration, guilt, not good enough, sick and ok anger and hurt again washed over me.  And as I desperately try to figure out how to keep my energy possitve..I do not ever want to waste my precious energy on negative stuff.... this was part of my 2nd communication with the city…..

Thank you for such a prompt response.  I truly appreciated your effort in securing parking to accommodate me.  It somehow made it even more disappointing when I could not participate when that effort and the handicap parking you arranged was made inaccessible by unattended police vehicles blocking the entrance. It was obvious that there was a miscommunication but I do want you to know how much I truly appreciated your attention and understanding.
I am regrettably new at this "handicap thing”, but wonderfully blessed to have the opportunity to continue being active... with help. I never....never thought I would understand how frustrating and demoralizing it could feel to be excluded.  I am not proud of myself but do have to confess, like many of us, I have been guilty of grumbling at the empty handicap parking spaces at the front door of public places when I had just hiked in from the back of a hot parking lot! I never genuinely understood how important simply participating in life and my community could be.
I applaud you for your valiant efforts to correct the problem and after this experience; I would be honored to aid that effort in whatever way you think may be helpful to make these important and necessary changes.  It is my sincerest hope that no one in Casselberry ever again, feels the rejection and disappointment I did last night.
"Ooooh" Child"  Beth Orton

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