Going on

Today I have been thinking a lot about ‘going back’ in different contexts. I think we believe that all of us get second and third chances. And we do. My response to a person who says, “Oh, I’ve always wanted to play the piano…..” is to say, “If you call for a basic lesson tomorrow, in five years you will be able to say, ‘I’ve been playing now for five years’.”

But also, after a hectic schedule like the last 20 days of medical tests and seizures, a feeling of needing to go to a life where I live without stress, where there is a routine, but often referred to as “going back to our routine…” Except, now, I realize that there is no phrase, ‘going back’, there is ahead, there is what will come and that is all.
Linda and I talked tonight about how nice it would be to take a few weeks to just create a routine; me doing the postcards and her making her bosses at work happy. Her immediate supervisor has heavily implied that since I am making Linda miss work, it would be better for everyone if I was put in a ‘home’ where I could be taken care of. That effectively she divorces me. I am certain that as we approach our 15th anniversary, it is not the government of BC’s position that if their spouses get sick, they divorce or abandon them to be more productive managers. Linda’s supervisor is just an able bodied bigot, and I told Linda to tell her quite plainly that I am dying, since that makes 99% of the population run away.

But if we do that, slip into the routine we will not see that neurologist by the end of August, and if we don’t, I am not sure what point there might be after that (in terms of strength or ability to do tests or get usable treatment). So that’s it, for me ‘living’ means that the neurologist says, “This stabilizes at point X for a year or two” or “With treatment Y, we can go on for at least a year, who knows how much more..” There is no going back, and I go on whether I want to or not.
People ask me questions, questions I cannot emotionally answer. Questions which are the equivalent of ‘choose one more thing you want to do while there is still time.” It is like choosing a coffin. Something I could have easily done a couple years ago; “Hey, this one looks nice.” Only now, have some mob guy stuff you into a car, pull you out in front of a funeral home and put a gun to your head. Listen as the trigger pulls back and the barrel indents into the back of your head. “Choose a coffin.” You are ordered.

Different isn’t it.

There is no opportunity for “do overs”, there is no chance for “fresh starts”, I look at my life and I think, Did I do all that I could at THAT time, or was I always waiting, waiting for my degree to be over and see where that led, waiting….

If Linda were not in my life, would my life be one that was worthwhile? Is my only true accomplishment that I have loved one person without reserve?

I built my life on the tenet of service and personal freedom through truth. And much of that will die with me. But I will die a woman who does not participate or collaborate in the facades of our dysfunction; personal or collective. Is that enough? Probably not.

I want the Angel to wrestle with me. Before I had so many fears about pain, about pride, about how I am viewed. I think most of that is burned out of me; I have begged, I have no fear for what normal people would fear about pain as it is one of the things I am losing. Today, going into the heat, I bled internally in three places I could SEE and yet, felt nothing. Oh, are you going to smash my toe with a hammer, haha. Oh no, are you going to leave me helpless, unable to move or speak? haha. Blind me? That happens almost daily. I lose hearing, and am losing hearing permanently. I woke today, as I do other days when the pain rose me to consciousness. Dragged myself, literally, out of bed because of the pain. I have pulled myself across urine, across unwashed bathrooms, leaned my head against toilets, bruised and torn muscles to stay alive, to reach my objectives. This is real. This isn’t a dream. This is what it means when you can’t breath, or your body is spasming and you are going to go into heat stroke.

Come Angel and wrestle with me. There is something more dangerous than someone with nothing more to lose. Someone who has and is losing everything and CAN’T FEEL their body. Emotionally I can be hurt, but that is because I choose to be. That is a choice I made, part of going on.

The truth is all of us are going on, yes, sometimes we can try again, or go back and get that degree we wanted, spend those 10 years in the job we dreamed of. But sometimes we can’t. I didn’t write the script.

If you spoke to Moses, speak to me!

I am scared, scared of the future, scared of no future, scared because every month past was better than the one here. And will the weeks be like that? But fear and being scared is natural. I will continue to live and take chances. LIVE. LAUGH. WEEP. Up to now, it has been easy, a few days of recovery, a few hours of pain free. Now, everything I do isn’t a minute equals an hour of pure pain but a minute equals five hours of total pain; insanity inducing pain, soon it will be a minute equals 12 hours. Now it will be hard. Everything will be hard. That is what “going on” will mean. Now we will see what drives me. And what supports me.
Tonight I labeled and matched 20 names to 20 postcards. I mailed three postcards. I talked to Linda for an hour. Then another half hour.

The doctors, the politicians, the people walking by on the street don’t care because they don’t have to care. I am just one of a thousand faces. And soon, after a vacation and a few lattes, I will be gone, in bed, out of sight. If I burned this city, they would care, because they would be angry, because they had lost THINGS, and they would be angry. Angry at me. Who should I be angry at?

When I go, be it now, next month, five months or a year or more, they will find a box of postcards, a box of stickers.

What was she doing? Someone will ask.

Fighting the wind.