October 26, 2020
Today is one of those pre-winter days; grey skies dripping rain and sleet, no wind, only stillness. As if nature is bracing for the harshness of what’s ahead.
I’m feeling similar, waiting for my disease to progress…for me to be so far gone I won’t know or care about the next day.
I haven’t felt this gloomy in a long while, but as time has passed, I’ve learned to let these feelings run their course, to accept what I feel, to gingerly step forward and face whatever lies ahead. While I practice accepting what will come, I also pray that I go quickly, that I won’t live long enough to be more of a burden than I am. There seems to be no purpose to my lingering. I know my posts have been helpful, but I shy away from the real truth lately. I don’t want to scare anyone or cause increased anxiety during an already anxious time. It is only when I’m writing, I feel I can be truly honest…but when I get the most honest, I don’t post.
I have no idea how others have walked this path. At what point in time do they lose all memory or cognition? Of course, I realize this is a unique journey for everyone. There is no clear path or definitive timeline. But I find myself craving more transparency—what would it look like if people were more open, honest, generous with their experience? If they realized their examples would help so much and so many? Or maybe not. I don’t trust myself to judge right now. And even having said just the opposite, I’m not sure I want to know what lies ahead, if my educated guesses are correct. What small part I do know is not pretty.
Already I feel incapable of carrying on much of a conversation. I’m conscious of the mixed-up, scrabbled words that come from my mixed up, scrabbled brain. I’m strangely aware that I can no longer remember and that the list is lengthening and the timeline shortening.
Yes, this is a pity party post. But I’m not apologizing…how else could one possibly feel when there is no medical cure, or deterrent to halt the progression, or surgery to correct an impaired brain?
My isolation is magnified by the Covid virus. No casual chatting or socializing or hugs or sharing space without fear. Masks are a constant reminder that we need “protection” from one another…when the truth is, we need comfort and consoling from one another. But that would put the young people at great risk—not a wise practice.
I’m willing to take the chance of catching the virus, but Keith isn’t ready to risk it, wanting to continue to take care of me. I respect his wishes without resentment or remorse, realizing he loves me that much. Still, he could have many years ahead of him, and the sooner I’m gone, the freer he will be. But alack—it always whittles down to respect and honoring—and of course, loving. And oh, I do love this man.
What a life we have shared. How steadfast we’ve been to each other. How blessed with health, wealth and beauty in our lives. With children who are good citizens and good people, as are their spouses. With grands who are loving and bright, and who make a positive difference. And now a “great” who has a sweet, soft soul, and a sharp, witty mind.
Well, I’ve purged and feel better. Released my bad energy and am now ready to see the sun.
I am loved. I have been loved all my life. I will continue to be loved in the next lifetime, where I will run to Mom, Dad and Galen’s arms.