The 'Have to' life, and how it dies.

This post was reprinted in my other blog 'My Undead life'

I do not ‘die by inches’ but I die through the breaking of each self held delusion. This disease now, and so I now, am not the same person I was two months ago. I try to convince myself otherwise by forcing myself to keep to a routine until I am broken by it.

There is a mixture of pain and relief in recognizing that I am not what I once was. The pain is that I have fallen even farther away from any who would speak to me. I am not someone a regular person would talk to, except in sympathy, and now, I am not a person that a disabled person would talk to, or a chronically ill. For those who have only limited energy, even though it is 10 or 20 times the energy I have, why waste it on a relationship which can bring only personal pain and grief. My mother used to tell me that I bring pain to all who get close to me. She must be right in this, for she is 2000 miles away, and happy.

But while I realize that I will now be more isolated, and my heart will ache more, and I will leave the apartment less, which is not happy. In breaking, there is a relief in knowing that I can find a new pace, that I don’t have to be exhausted all the time trying to keep up to a dream.

I hear people talking about how “it will be sunny this weekend” and I don’t know what that means. I cannot understand because I don’t know what weather it has been, in my two rooms, both boarded up with soundproofing. I don’t know what it means about sun that is good, as without someone to help me plan or do something, I cannot go outside. I sometimes, after the two hours of a shower, think I should go outside, but cannot think where. With only 2 or 3 days of memory, most of the places I know to go are not there anymore, and I am too weak to go other places. I think about sitting in front of the door if it is sunny. Would that be better than sitting up in the apartment, would it be worth trying to get in and OUT of the dodgy elevator which misses the floor by several inches?

So I do not die by inches but by jumps, in recognizing I cannot do X or cannot keep up with Y. Other people, those who do not know me, who are not here, a caregiver, do not realize how much has changed in 5 months, much less a year.

Someone was caretaking me again for the first time in several months. They kept expecting me to inform them what to do, which when I am tired, is not possible. I cannot make those decisions, I can only hang on and survive. L says that she watches me do these things to survive and cannot imagine doing them, but only giving in and dying a long time ago. I don’t know what to say because I never planned to do them, it is merely that I do what I do because it is in front of me, and the alternative is far worse. Having my liver overheat and spill toxins into my body and blood is something I had done, and it only bearible because I was paralyzed for at least six hours toward the end, one eye open. I was able to fall off the bed and stop the heat cycle, and pain cycle.

That I can remember beyond two days.

So to go to boxing knowing that I will raise my BP so that I will end up bleeding later, or maybe there, through my nose, and that I will pass out. The point is not to pass out but to push so hard that the blood must, against the entropy I contain in the disease, spread to every part, and reverse the worse of the damage. I cannot access that, but only raise the level higher and higher and hope, by the time I pass out, that I have done enough. That I do not suffer for days, like now, in pain though on ‘breakthrough pain’ medication, and yet have fallen just short of what I needed to sustain my life months longer, instead of weeks.

L says that the paradox of the things I do to live, so extreme, and also the depression, and the desire to self harm, to put a knife and stab through my lungs over and over is a paradox that makes sense. I can have both desires and it is natural. Death would be one of the few constants, or resolved issues in my life, so it makes sense to desire it.

I wish I was human enough to feel something when people talk about a sunny weekend.

I wish people understood that I am not the postcard project and that the project, like so much of my life: my writing, my ability to read text (gone again), my ability to process and make decisions over time, my understanding of many things – all this is gone. It is hard to type, and yet every email ends with the expectation of a response, though I have not heard from that person for a long time. Do they know I must trade the only time I have for two days to relax, or watch something, and not focus on doing the things to live: the sit-ups, the hours in the toilet trying to shit, the medication, the sleeping, the hour or two talking to L so that I die as more than just someone she was taking care of, but as a couple. I have to trade any time for the email, which will take 60 to 90 minutes.

I did the math and even living a fair long piece of time: the amount of time I spend on postcards, or cards would, for a woman in her 40’s equate to 3 months volunteering in another country. That is the time I trade. To send out packages, as I am doing now, takes 4 days. How many days do I have? Is that 1/20th or 1/100th of my life, and will the person who gets it understand that?

No, we always understand things from our own time and experience. So to hear back at all, or an email or tweet of ‘thanks’, the 10 seconds spent is enough. I spent $6 on a single postcard to sent out, the most yet, though I pay $1 on average, sometimes $2 or $3, then another $1-4 on stickers that can’t be gotten elsewhere. And specialized stamps, to make it personal, so a $5 postcard is normal. I go without medicine, and Linda and I go without food when there have been bills, and we wait for the payday. I look for money I have hid away, coins of $1 that I can give Linda so she has choice, or can put $3 of gas in the van to drive to a job interview. And the response rate has dropped, declined down to 2%. Oh well.

Linda has a haircut. She has some interviews. It is an investment. She has had two haircuts and I have had none (she got the one with a groupon coupon, half price). But let the living take care for the living, and the dead for the dead. She knows, as do I, that the living expect the living to go at that speed, with those standards. Much like she should look as if employed, not as someone who has to borrow to pay the rent each month.

We do all that because Linda won’t disillusion me, that those who care and act are in our experience 1 in a 100 or less (1 in 1000?). Linda smiles to keep my dream alive, that people can become a caring community again. But that is not the nature of humans, particularly not busy living ones, who have to do the things the living have to do. ‘Have to do’ – for me, that means, ‘Have to sit in a hot room and work to ensure that I don’t have a lower intestinal and colon impaction’ (after two, that stays in the memory). For me it means, ‘Scream if you have to, but drag yourself from the wheelchair into the bed, or they will have to call the fire department to move your passed out body’. I think ‘have to’ for the living, for those who are busy with full lives and friends means meeting people for dinner, or seeing the relatives or something like that.

‘Have to’ – I wonder, would they pass out and go into seizures after 40 minutes of talking? Because I do, unless I can use my thumbs to hook the oxygen on my face. This is not an action which makes me better, or worse, but this is my ‘Have to’ which is a very LITERAL thing. I tend to be literal. Because I am at the point where pain and consequence come if very small things are not done, as they HAVE TO be. So, when someone says they ‘Have to’ pick something up at the dry cleaners or ‘Have to’ drop by the bakery to get those tarts, it confuses me. Particularly when someone they know is ill, is depressed, or is grieving. The lie of ‘Have to’ stop them from finding the time to sit with someone, to simply drink tea with someone who hasn’t had that luxury for a long time: the one of another human being wanting to be with them, to share time and experiences with them.

I have stopped looking for love, for I cannot see the love of one acting for another. When asked ‘who is my neighbor’ in the basic tenet of ‘treat your neighbor as yourself, he gave the story of the Good Samaritan. That, for his audience, it was an racial enemy, who was hurt for reasons unknown, and the person who acted never knew why this man was in a ditch hurt. Whether the man had been a robber who had been assaulted by his partners, or an escaped convict, or ‘had it coming’ did not matter – he assisted him as much as he could, giving him BETTER than he gave himself – the best room at the inn.

That ideal has been a challenge to me. It has been a mirror which has shamed me because I live up to it so very little. And I have found that it is somehow taboo to talk about standards, or the expectation of deliberate caring, not random acts of kindness to check off a karma list for the day. I have found it is very taboo to expect others to talk about how they feel and what standards they hold themselves to.

But then, oh no, someone might not talk to me? It has been a week and I can assure you, I fought on, desperate fights at times, hard ones, where it seemed even breathing was a luxury that I could barely afford. Too much blood loss. That I can’t really afford.

What is your moral standard? What do you expect out of yourself? The best? The adequate?

Do not spend the energy protecting the 'Have to' life. Becuase I can assure you that it ends. I have tried to be here as much as possible for as many as possible but now, I am the one in the ditch, bleeding. It simply is how it is.