Dear Friends and Relatives:
This is a difficult Schlagbyte…I am reluctant to share this story because I am afraid you will see me in a different way; but this is the reality of my life and I want to face it openly.
Over the past several months I’ve been getting easily fatigued, and short of breath with only the mildest exertion. I’ve had high blood pressure for years but controlled and closely followed, but now my heart beat is irregular. Thorough diagnostic evaluation including biopsies, reveal my heart is working harder because of a rare disease called Cardiac Amyloidosis. My heart muscle is slowly being replaced by the buildup of an abnormal protein called Amyloid. This disease comes in several forms, some treatable but not often curable.
My type has been developing over years, shows up in the elderly, and generally continues for years; so, my demise is not imminent and I don’t want you to hear or read this as a farewell letter. I just have a diagnosis; don’t let it create an expectation that I have one foot in the grave and the other on a banana peel. I’m living and still have a story to tell, I’m exercising, writing, clowning, and not so short of breath that it’s stopped me from flapping my lips albeit not quite as fast as goose droppings through a slide trombone.
How do I feel? Like I’ve just gotten a pink slip in my pay envelope informing me that there is a termination date for my employment in this life; the reality of what’s happening inside me has changed my world. I treasure my independence and like to believe I have some control of my destiny even though I understand it’s by and large illusory.
My dignity is important to me; debility, immobilization and vegetative states are unacceptable. I want to have some say in how I approach my final chapter, and I’m thinking telling this story may be my most meaningful legacy. Actually, it’s the same story I’ve been telling for years: success in life has nothing to do with what happens to you, but rather the choices you make about how you come to what’s happened; that it’s you who have it not it that has you; and that it’s possible to be healed even if not cured.
So that’s my story and this is how I’m coming to it. I surely want your prayers and blessings but please don’t hover over me, or deluge me with potential cures, because I am in good hands. I’ll keep you informed periodically, meanwhile I’m living my life to the fullest.
I am enormously grateful for the experience of my life and have been so blessed to be surrounded by love, purpose and the opportunity to do my dance. Dance with me, let’s laugh, and celebrate the ridiculous together, while I walk a talk that I’ve shared for years.
Thank you all for being with me….. I say this for all my relations, Mi Takuye Oyacin