the gift, the limits

I worked on a new project, which was Postcard Project ‘lite’, a postcard sending that I could do unassisted, with my own hands. I wanted to know whether the elaborate postcards done with assistance of Linda and Cheryl were more important than those I did from start to finish with my own hands, no matter how long it took. Postcard Project ‘lite’ had a less than average response, which was for the most, no response. That was sad but I guess they choose not to be with the me that is currently me. Linda has noted that my ability to do basic functions is currently in rapid decline. We hope this stabilizes but for example, I was unable to lift up a drink bottle to have water last night, but needed to wait an hour for an aide to come. So doing complex postcards would require waiting for the best of days, and two hours working then would be days in recovery. Hence only 80 postcards sent during Feb.

As C. Bronte writes:

THERE 's little joy in life for me,
And little terror in the grave ;
I 've lived the parting hour to see
Of one I would have died to save.

What I do, and what life I have, is due both to the kindness and care of those I have fortune to know, the caregivers, and friends who come and remain but also to what I can create and carve for myself.

“It is not bad, empathy.” I said to Linda
“No,” she said tonight, “It is just that some have hearts too large.”

I do not write when I can not function. When I do, I steal bits of energy, scraped from here and there, when I wake from seizures, the dull fog lifting to a sort of light hum. I want, before the pain settles on me, like cancerous boils within, to explain why I keep searching for gifts, and things for those I am told, are already dead.

A gift is sacred, because the only purpose of the act and object is to make life better. And there is very little that can be brought down to that: a life lifted.

Rarely, in giving, there opens what Anne of Green Gables would talk about as ‘Kindred Spirits’, and this too is a gift, to find part of you in another person, and part of them in you. And so, carrying this part of them, I listen to their voice, and find what it tells me will please them most. And if they are dead, then I must hold on to what I have found, and do what deeds survival dictate until another ‘Kindred Spirit’ or the hope of one is opened to me.

Whether it is 1 postcard or 6,000 it all is the same, a life lifted, joy given, happiness where there was not before, a smile shines forth for a moment like a beacon. That moment illuminated is one I will never see and yet, I hope, in thinking of those gifted, and in the showing and reshowing of the postcards, letters, pop-ups they send, I smile as well. And so, though an ocean or mountains separate us, my bleak day breaks into a curved lip and a far away gaze.

This is the possibility that opens like a flower from the sacred nature of a gift. I am surprised by the ways in which it can matter, and ways in which it matters to me. Postcards give strength through medical visits, clutched in operations, carried thousands of miles, a scrap of cardboard torn and sent from a ship at sea, it came to me.

I cannot be where I was, when gifts sent out in a stream as I had the energy and capacity. Now, both are stolen from me, drained in the night by spirit foxes. And so, like this writing, I sneak them out, a few at a time, because perhaps like me, they are needed now most of all.

I have many shades of consciousness, awareness and ability, or even basic function, as incontinence arrives at last (whether early to the party or late, it never seems appreciated), along with daily speech loss. Others spend spoons, I spend my body as a good conversation can leave me blind, unconscious, unbreathing, all three or something more exotic.

Too bad I am addicted to good conversations. This is why I don’t email, or write, because I can’t. Because I can’t breathe: because days go by without my awareness, and I lie in stupor in a hospital bed. It really isn’t that complex, they call it degenerative terminal illness.

But, I still want to be found doing, when my time comes.