My life as I know it

Me and my son Max at Thanksgiving in our new home

Where do I start?

For many of you, this picture shouldn’t be a surprise – for others it is likely shocking.  I’m in a power wheelchair on Thanksgiving with Mary Ann, all three kids, our close friends the Meads and their kids, and Mary Ann’s nephew and his partner.  We’re also in our new house, a mid-century modern Eichler home in Walnut Creek.  Everything about this picture and this event is about changes to my life.  

So where do I start?  With my foot dropping last year when Mary Ann and I walked our dogs every morning at 6AM at our other house in Orinda?  Or with going to numerous doctors and check ups and MRI’s and worried looks and denial on my part of the final diagnosis?  Or the rainy day last January when I was officially told I had ALS, where then was followed a parade of health professionals including palliative care to offer their support. Went straight to the Beach Chalet for burgers and beer, and tears.

I’ll make this blog a series of remembrances, both serial and free stream of consciousness, and current events about what my life is like now.  With that, I leave with a picture of me a little over a year ago.  That’s who I was – I am different now.

This blog is not about seeking sympathy. Instead I want it to be about hope, overcoming adversity, and celebrating life in real time.

2 thoughts on “My life as I know it

  1. I don’t see you as a different person than you were — the physical “container” is different but you are still the same Harry I have loved for over 20 years. (Yes, I realize that compared to many, I am a newbie as there are many whose lives have been intertwined with yours for far longer.) In fact, what I love about being a small partner in your journey is that you HAVEN’T changed! The Harry I know is the same Harry who said, upon greeting me for the first time I had seen you in a wheelchair, “Pardon me for not getting up” and joked about how you, in your new electric wheelchair, was banging into walls and destroying the trim! If you had been sad and depressed (and I certain you have those moments), then I would grieved for the Harry we had lost. But we haven’t lost our Harry because you are still our Harry.

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  2. Creo que hoy tienes todo lo que has construído y te has ganado, somos el fruto de como tratamos a los demás. Tienes una esposa espectacular, que cuida y te mima, tienes unos hijos que te quieren infinitamente y unos amigos que están y estarán a tu lado para siempre. En Cuba tienes, al menos un amigo, que te recordará para siempre.
    Estoy muy agradecido de haber conocido a una persona tan especial como tú.
    Tu amigo Yosvany.

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