How to love 1,000 people? How to live palliatively.

I am supposed to say “I hope you had a nice long weekend” because it is polite. The truth is I REALLY hope and hoped that you had the best weekend you can remember.

I am not sure who reads this blog but this weekend Linda, Cheryl and I, did postcards and for all of Monday, I sat and wrote postcards, and I had matched postcards, for hours. Since I don’t have a memory longer than 40 hours or so, all I need to do is look at about 500 postcards then try to find the right postcard for the person. We did 80 post cards. I wish it was more. I have about 36 pages of 30 postal stickers, all with a name and an address: Yes, that is over 1,000 names.

1,000.

I wrote those postcards the way someone living in solitary writes: dreaming of you, your life, imagining what is, what could be, and hoping that your life has a small edge left for me, if even to observe. They are sent now. No picture of the postcards lest it spoil the surprise.

I live in a beige room. I sit in the same wheelchair spot.

Today I saw photos of me having a drink: last Thursday or Friday. But I hadn’t remembered going out. I don’t remember. I have no memory of it at all. I just remember sitting in this room. Do you understand what that means? No matter how often I go out, I’m always here. The same wheelchair spot.

I hold back writing in the blog so much: because it isn’t all my story or is just something I don’t want to burden you with. So, a lot of what happens I don’t write, sometimes because I am simply too sick. I am sick a lot now, I have degenerated conditions that have no solution, no medicine, no machine, just sick and if I get sicker, go to hospital for morphine or get better until tomorrow. I don’t write and publicly thank the individuals who sends me things off the gift list. I want to. I don’t do that because I don’t want to hurt the people who are having hard times, or no income or who just made a different choice. But please don’t think it didn’t and doesn’t make a difference.

I was up until late last night, but I couldn’t sleep but a few hours. My brain tumbled on the fast spin cycle through real and horrific knowledge, things I am helpless in regards to, and some things I don’t want to know but know anyway. And in the midst of that, midday, I read the manga Dengkei Daisy 1, and Crown of Love 3. And even though I was having a hard time of it physically, I got that warm feeling from a good read, a REALLY good read: that post orgasm type of mental peace. Those minutes I felt those flickers was the best feeling I have in my memory. If you want to know what difference your gift made, it made the one good warm feeling I had, and the one I will have to hold onto for the night and day to come.
I think that is what they refer to in palliative stage as ‘taking the good moments when they come’.

So if you have a relative or friend who is sick, or recovering, or homebound, or has had an accident and a voice inside whispers to call, visit, or tells you to send them something, or buy them something off their wish list… listen to that voice inside. No one else is going to do it. And find me the person that doesn’t regret NOT reaching out, because they were afraid; worried; trained to be polite and not bother a person; other reason here, and I will show you a sociopath, or someone who I hope will learn what children know. When you care about someone else, that feeling flows over and MUST be expressed, and so you draw a picture or write, or get a gift.

Desmond Morris, who wrote The Human Animal, says we are hard-wired so that we can’t care about more than the size of a small village, about 200 people. I say Desmond Morris has a theory, and it is flawed.

I know over 1,000 people. I know what you like, what you don’t, if you are funny, if you are shy, if you are gregarious and I care, and I’m working on loving the lot of you, if you will allow me by letting me in.

If you want to know what difference an Amazon Gift certificate makes to me, or to so many others, it is this: choice. I don’t have a choice how much oxygen is in my blood, and I am usually a little purple/blue this time of night, my feet are black. I don’t have a choice if my heart has lots of erratics or even stops beating for seconds at a time (that one is like a Bear sitting on you to fart! Even when it finishes, it still HURTS). I don’t have a choice how much hurts, or how bad, or if one leg is gigantic, or if I have progressed on Congestive Heart Failure, or taking a breath is like swimming toward the light, every six to 10 seconds. I can’t control when my blood pressure spikes or drops or my heart barely pushes blood, or the seizures, the malfunctions of the kidney, liver, lungs, the bleeds into the brain, the breakdown of skin though I sure try. But I can go through the great catalogue that is Amazon, and see if there is a romance for Linda, or a volume of a missing shojo manga we all like, or some PJ’s, or a nightlight, or something to make Linda smile, which makes me smile, or vice versa.

That’s what I think about when I write postcards, and cards and when I order stuff and send stuff out and every time I receive a gift certificate, or a wish list item, or a card, or letter, or gift.

Are you lonely?
I am. Aren’t you?

Palliative uncovered: wheelchair boxing, being in the now, and what's left.

Palliative comes from the Latin meaning to cover, or cloaked. That isn’t me, hiding, cloaking things. Dying is like childbirth, it is hard to hide if people are really looking. But we have been taught not to.

We are born, thus we die, and there will suffering somewhere in between those two parts. But what details do I talk about, the two weeks of fevers alternated by going into cold shock day after day, having to be wrapped in blankets, the stopping of breathing during each day, and shallow and stopped breathing each night, and waking up with purple fingers. My systems are shutting down, and I sleep a lot. I am less HERE, where-ever here is. Breathing is more difficult as the diaphragm fails, no eating, little drinking, failure or irregular workings of internal organs, spontaneous bruising and hemorrhages, the general withdrawal. That is where I have been this week.

After getting back from boxing Linda said, seeing her caregivers guide to end-of-life in my hands, that I shouldn’t look at that.

“Why, how do you see me?”

She swallows and says, “Palliative. If asked a day or two ago I would have said you have a couple days.”

Yeah, that is kind of how I felt too.

She continued, “But now, with the exercise, longer.”

“Longer?”

She hesitated, and I waited to hear ‘months’ or ‘till fall’ or ‘summer’, Linda is the person who breathes for me, and helps me in everything from getting out of bed when too weak to do anything but wait for her to come home (as has been recently). She checks my breathing, she starts me up again if I stop, and this week cames home at lunch to make sure I haven’t died while she was at work. I was breathing so shallow she couldn’t hear me at all until she was right over my head.

Still, she is the optimist, she is the one who wants me to hang around no matter how bad it gets. She continued, “With the exercise....weeks.”

Well that sucks.

I have enough consciousness now with endorphins to remember that being okay with dying is not supposed to be fine, particularly when not that depressed. But that is where I am, and have been When I just sit and stare out trying to breath (yes, oxygen can be very demanding of attention), or cleaning up with help and putting post it notes with people’s name on things. This are the chores of dying.

I had an annoying worker. So I told her to leave. Dying takes all my energy, doing anything or being with Linda is more important. I don't have the time for her. I miscalculated and had a phone call and talked 45 minutes. I immediately passed out after that and stopped breathing. It took three hours for my body to recover from that 45 minutes, strong enough to speak (slurred) and eat a little.

No, this isn’t how it supposed to go, I’m the heroine of this film and how can the film go on if I am not onstage. Oh PLEASE don’t tell me now that I was just an ‘extra’ – a walk-on?

Today I fought hard against the desire to sleep or just lower my head and stop breathing (the irony is that my body, due to the nature of my disease will continue to look okay, and have ‘good skin’, right up to being dead), in order to get ready for boxing. No energy to put on foundation…ah, this stuff is a feminist plot against the fatigued!

Once more at spinning the revolver and pulling the trigger. Sweat or die, or die trying to sweat. Boxing is two-fold, to get back in shape as quickly as possible and to sweat as much as possible by exercising to and beyond the limits. If a phone call can make me unconscious, and I am living off endorphin fumes now, I wonder what I will like tomorrow? But I really gave it everything, starting off with sit ups (about 130 in total) and push ups (somewhere over 100). I went until I had nothing and I went on, one arm wouldn’t straighten, I tried to make one more push-up again, and again, and again, and screaming I got one arm straightened, and slowly straightened the other one. A collapse.
I didn’t care about tomorrow or tonight, only now and that I believe this was a way to extend my life. So I boxed the heavy bag as if my life depended on it. I used the swinging of the bag to throw a lot of fast punches, averaging three punches a second, to hit but not give full power and rip muscles. Sometimes it swung back and I let it hit me, building up my strength and resistance to attacks.
Linda said I boxed with a face that she had only seen on characters in movies before they are to run down a hill into battle and certain death, “AHHHHHHHHH!” I didn’t scream but I was, very, intense. I think I might have scared the other people there.

Boxing and Epee are sort of similar in that you need to be in a relaxed state with your arms, in the beta zone, but with instant focus and then action. I was rusty, and dropped my right hand a lot. The coach for the night said he would spar with me. He put in his mouth guard saying to Linda, “I know her.”

What?

Most of these moves occur in less than a second, the trick is to move your arms with enough strength to block a hit but to move your other arm with precision and force to the target. I tend to focus on gut/heart hits and head hits. So here you can see that he threw a hook to the side of my head, which I block. Meanwhile my left fist is already accelerating at the space it sees. He has pulled his arm back but my arm is extending and accelerating, and there is a gap of strength as he is just pulling his arm back and not quickly enough. Though I drop my right fist my lefts gets through to make a full face hit (minimal force). It all take less than a second.

Here you can see the coach planting a jab on my defense, it doesn’t break through but I follow his arm back and as his hand goes to cover his face, I lower my arm and extend into the abdomen (he retreats to lessen the power).

In this last exchange I have seen a chance at a hook, and extend, with my right, the left is covering the face. As I get to him, because I can’t step forward or twist for force, I lean forward to give it more OMPH! He blocks with his glove and shoulder.

But all of this happens very quickly (micro seconds to a second). Here is a video of a few seconds to show you how the better you get, the less you AND your opponent get hit, since you are always practicing defense, the relax and focus and looking for opportunities. There is practice but little violence here.

I continued on, for 90+ minutes and when they called break I shadow boxed, or worked on. What if I was too weak to come again? This was it.

I got back home and the workout had made me sweat and restarted my intestines, which along with my colon had stopped the start of the week. So I am back, EFM lite.

The thing is I don’t know what I want, what I am fighting for, I wish I did. I wish I had a vision, a giant vision and that I could take everyone along for the ride, for the joy of it. But I don’t. Maybe I can get to a place where I can. Right now, it is just trying to survive. We are going to hook up the large oxygen concentrator as a makeshift overnight oxygen provider while I sleep.

It seems I am supposed to relax, rest, and remember the good times, the seeing of fireflies, to try to recapture those memories. Yeah. Why don't you take that idea and file it where the sun don’t shine. I MAKE memories, I don't live off what used to be. I make miracles, and if there was one needed, it would be now, I wouldn’t mind a bit of outside help, if Miracle Inc. is reading blogs now.

See, I played double bass, which has exactly the same stringing as the bass, and yeah, I’m her, the girl in the picture, I’m sitting here with a body and a life where two of my four strings have broken. And that SHOULD be the end of it. Except that by doing all this math in your head when you play, you can actually play all the rest of the notes and avoid using a whole string while doing it. But TWO? Well that just makes it really hard, right? It means that it won’t work perfectly, no low bass, no super high, limited, but I can keep trying, can’t I? Till that miracle comes.

Linda’s co-worker mentioned something about how she should tell me not to ‘go to the light’ and Linda told her casually how it was green really. What!? Linda told her that sometimes there is a party I have to go to or I say, “Let me go, let me go, they are calling for me.” And how one time there was an ice skating party (I don’t remember this at all). This freaked out the worker. Guess Linda is beyond the veil what is typical too.

Maybe I will die, and yes, I am more withdrawn now, but I am going to try everything I can to figure out other ways to deal with that, and other ways to keep going, and processing nutrients. Linda put two of the new problems on the wish list. One is that her beater died (food beater?), and she found a half price one which has the speed and such she needs. The second is that my feet are back in pain, due to my body going cold, even with two blankets on my lap my feet hurt all the time from the cold (with two wool socks on as well!). We will try to deal with these as we can, if you want to help, I am grateful. But it is a choice. I don’t promise life, wish I could. I do promise that I am trying really hard to FIND a way to look forward, to fight. Because I need to fight to find a place where I can enjoy being in the HERE (many people think about what comes next, and they aren’t actually HERE), but still challenge myself and work hard to keep myself alive (Which takes about 50-60% of my time each day, now). And yeah, the pain all the time thing sucks.

Pain sucks, so does, knowing that I will be alone for a international holiday of getting together with friends and family. So I have another holiday, December 6th is Canada’s National Remembrance and day against violence against women. This year is the 20th anniversary. No more violence (odd code for someone just from boxing and who talks about fighting a lot). I want any meeting of people to be a meeting of equals, whether that is at a free clinic for street people or any medical or other meetings. I respect you, you respect me. Then maybe the emotional abuse that seems built into the medical system, the beating you down as an equal and competent in your field as the doctor is in theirs (or more competent) would be gone. No more women, no more people falling through the cracks. I believe in that. I guess that is what the gifting from me and the postcard project with Cheryl and Linda is about: that someone out there knows you and cares.

If I die now, or in the next days or week or two then let me found both doing and being: being with Linda, being where the joy is, being in the NOW. But still doing what needs to survive. Because if I/You don’t survive, then the story ends. I want to care about what happens next (I don’t really, not inside, but I WANT to care), the only thing I know is that I have two doctor’s appointments and a blood draw. But I would like a hair cut. And Linda saw a raccoon last night. I would like to see that. Or an owl. “It is a start” a fictional friend said, enough to start having a life maybe.