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.

How does a hero live? Die? and Fight?

I didn’t go away. I just found that I was the passenger, not the driver anymore when it came to my body. That kind of sucks.

I am going to blog as often as a can, many times a week, once a week. As often as I can, but then, every day for many days we have had to make calls, stop calls, decide 911….every day.

I need to get stronger. Not just because I spent most of a very small inheritance on gifts (for family, and online friends). If you haven’t gotten any it is either because a) I had a grand mal/small stroke and don’t know you as that part of my brain withered and died as it was crushed by a surge of electricity or blood (which is like battery acid to brain cells). b) I haven’t been able to afford to send your gift to you or heard from you to verify that like gifts/are a friend/do what friends do stuff.

I also got more things for the postcard project though as Linda says, “You have enough already for the rest of your life.” Yes, maybe, but like getting and wearing new clothes, it is fun to have new things to send, new stickers from Japan, new postcards from Germany, new stamps with pictures of the three of us, custom made, stickers of us, custom made. I guess those are gifts too, part to me and part to you.

I need to get stronger because in two weeks I am being transported to San Diego. I made a promise a year ago to go to the Eisner Awards if I was alive now. I made it. We are going by van. I sold my manga to fund my part. It seems that there is a belief among some (Cheryl, Linda, others) that I will die July 27-29th. I hope not.

At the neurologist, I found out that the neuropathy progresses, though how it progresses beyond ‘very damaged’ I would say I don’t know, except I do, since two neurologists have told me. I will lose more and more use of my arms until I won’t have use of them at all. Already I use my forearms more than my fingers: to scratch my nose, to pick up things, to catch things. The teeth are for opening things or positioning them. As Linda says, “I don’t know how it will be, but you will find a way and that will be how it is then.” I miss hands, and I will miss the limited use I have even more, if I can live through into the autumn.

Having the last aspects of hope shredded in front of me by specialist/doctor apathy and budget cuts, this body will continue, unattended, as I and others try to keep it going each day. I am a different person now, than I was. Being a passenger on your own body does that, as does pain that makes time stretch and bend, and hallucinations frequent. My dementia continues as seizures and heart, lung and conscious failures increases, and the heat accelerates and adds to all of it.

Having the last choices wrenched from me, I experience some peace for the first time in my life.
I was born and then taught to be a hero, to live the life of the hero. I think that much like adults who tell you not to smoke while puffing away no one ever expected me to actually BELIEVE. I was and am a ‘True Believer’. I remember my father telling me that we needed to live a perfect life like Jesus but we would fail and like all humans need God’s sacrifice to ‘atone’ for us. I was young, but raised scientifically (at school I used anatomical names for everything including raising my hand in order ‘to defecate’ or ‘urinate’ in first grade, much to the horror of the teacher and principal who eventually got me to say I needed ‘to go’ as I wouldn’t say ‘I need the girl’s room’, I told the principal plainly, “No, I need to empty the urine out of my bladder, which room is social acceptability”) so I said, “No one has lead the perfect life YET.”

My father said, “No, but if everyone, all billions have tried then ALL fail….”

“But it is theoretically possible, right?”

My father thought a long time and said yes, it was. And I believed him. And since that moment held myself to that standard, which I failed (at perfection), but I strove to attain it. The neurologist asked about my cut scars and I said, “I am an extreme Type A, and I expect perfection, and dislike failing and when overcome I write my failures where they can be seen.” We then talked about the high incidence of self destructive counter-coping behaviors among student doctors. But as I was leaving he said that due to my sexual abuse and open self harm, the other (male) doctors had withdrawn treatment. That I had not been treated or even taken as a patient by doctors and specialists for YEARS not because of the science of my disease but because of “your deep emotional complexity”. I felt physically as if he had kicked me across the room, my gut hurt so bad. I later decided to ask him if he would write that out, and if he would, I was going to start a suit against the government of Canada that medical treatment for chronic and other conditions should be given REGARDLESS of sexual abuse, emotional abuse or other patient history.

To be told that I was like the AIDS patient in Texas who had been put in a room, given water and no treatment because….of who they WERE, of what they HAD, until they died, it was crushing. It turns out that those four young males who had marked my body and mind still marked me in a way where treatment to me and others with abuse was delayed, or denied, that male doctors were continuing what the abusers loved most of all, the power to hurt me. Sexual abuse isn’t about sex, but power, domination, and establishing that they are dominant (Sounds like Medical Specialist but sexual abusers take it to the next level). I thought I had cracked open and left that binding on my soul behind me, without knowing it was being passed in notes, like a class deciding who to bully, from one medical to another. In three years, all prescriptions, medical aid, home care and life quality has been given by female doctors.

I am learning how to fight in a different way. Fighting to keep my dignity as a human being, fighting to stay here. A very different type of heroics than I have had the rest of my life.

I had lived in an odd community where I was in a feudal system, and minor nobility, I was trained for court, I was trained BY the court, to serve at tables of royalty, to know etiquette, but most of all to know who you ARE: the unseen awaiting rulers. God was coming back and we were going to assume our roles over humanity, and so we should treat them as such now, and practice now. I don’t think they expected me to take them seriously. Or to link Jesus to the tales of the Knights, of the Round Table, that Jesus was the embodied noble, a servant to all. I would be a Hero of that court.
If something is 'right' (note, not if “I am right”), then regardless of the consequences TO ME (not ‘to others'), I must continue. That is how I lived, that and with the conviction that choice is the most sacred of what makes us divine. That those who desire to take choice: tyrants, abusers, despots – the are recognized as doing wrong. But in daily life, to refuse to sign a contract unless it is taken to a labour lawyer, or require management to sign the same one, leads to threats of job loss. I have lost my job over: gender equity, civil liberties, religious law and equality as well as almost losing five years of university. The bully cannot conceive of a person who will not be beaten down regardless of consequence, and who goes and gets an ombudsperson, or lawyer. To knowing participate in an act or the continuing of an act I know to be wrong is immoral. And I will not choose an immoral life simply for convenience. Nor will I allow those around me to take the choice away from those who are the most vulnerable. And I don’t give up.

Those actions makes those in authority really, REALLY angry. It also gets you labeled a lot of things, like ‘nutcase’ but then, as I told people, I am follower of Jesus (okay, I didn’t tell them Jesus, the knight errant or that I thought that Don Quixote should have continued to see a world of gold, and fought for that instead of living in a world of iron and steel).

This ‘Revolutionary Girl’ AMV embodies the type of hero I have tried to be, and have been, for Linda, for others.

To give some context Revolutionary Girl Utena, which deals with abuse, desire, gender roles and society was, even symbolically so effective that 1/3rd of it was banned for release in the US (including DVD). Utena is determined to be a ‘prince’ and dresses as such. She sees her classmate Anthy, who tends the roses, being physically and sexually abused by a male classmate and intervenes. She accepts a duel challenge and arrives with a bamboo blade only to find the male with a steel sword. The winner of the duel ‘owns’ the ‘Rose Bride’ (Anthy), which the student council who have rose rings, believes will lead them to power. Utena fights so that Anthy might make her own choices, and have that freedom: to choose either for good or ill, but her OWN choices.

Utena’s blade cut to almost nothing, she is told it is useless and to give up. A Prince does not give up, and so with six inches of bamboo against a steel rapier they charge (she gains the Rose Blade after this). Following her victory, many turn against Anthy, who is so used to abuse and being treated like an object that she has given up resisting. Utena finds her, breaks up those who have ripped up her dress, whips a tablecloth from a table and creates a simple roman style dress pinned with a rose. Utena then dances with Anthy, openly declaring their bond and they move to an abandoned housing building and live there on campus.

Sometimes to be a hero is to be against the system, and the actions of those in it. To be alone, fighting for just one person, a person who may decide to betray you, or refuse, at least for now, to leave that system. But the point of the hero is to give them that choice, that space where they are not an object, not abused, and able to grow…as a person. However, the abuse and anger they used to take out on Anthy is directed at the Utena, the Hero.


Linda and I decided a time ago that in order to make the most change in the world we needed to get inside the walls of decision making, to be INSIDE the World Trade Organization meetings rather than outside. Because of the 500 people inside the walls or the 25,000 protesting outside, to be one of the 500 could bring about positive effect to millions of people. Linda taught international business, we co-taught pink, green and grey markets. I did the research, and we worked together and decided together to move back to Canada (it was going to be the US but then ‘married gays are worst than terrorists’ election campaign made us rethink that – we already had experienced hate crimes, no need to seek out more). And then, in getting ill, I found that we had overlooked a huge percentage of vulnerable people. I faced that I had been a poor Guardian, a poor follower of Jesus.

How I had failed, and tried to redeem myself is summed up in Pumpkin Scissors. In the series Pumpkin Scissors, after the war, a unit is set up, small and originally for propaganda purposes, called Pumpkin Scissors – scissors to cut through the tough skin of war and corruption. They were to bring hope back to the people that reconstruction and equal justice would be for all. A small group of only six, they are lead by Alice Malvin, a noble who believes that justice and duty to ideals is more important than her sisters’ opinion that femininity is paramount. She leads the unit and while they are armed she usually only has a small short sword with the family crest. (a 34 second clip that will demonstrate exactly her personality).


The new addition, Randel, was part of the secret 901, the ‘will o the wisp’ anti-tank corp, who needed to have no fear of death in order to attack tanks with anti-tank guns while atop the tanks themselves. Large in body and covered in scars from doing unspeakable acts Randel is shy and grateful to now be able to make a difference in little things in people’s lives. He is devoted to Alice, who he believe is allowing him to redeem himself. While in truth Randel’s dedication to the ideals of Pumpkin Scissors inspire the rest of the team to follow Alice (who is a little hot tempered and sometimes attempts the ‘impossible’ – not like ANYONE we would know.).


To know how to fight, to know when to fight, to know how to face the impossible alone, when I am now a passenger in my own body, able at best to send messages out. It is an experience that is unique, and because of that, special (painful but special). I honestly wish, if the results were not death, for others to know this feeling. It is not knowing in your head that you are dying, or even in your tests that you are dying, or in your first body changes that you are dying. It is that state where death is inevitable. People can see it, and no one asks me how I am doing. They talk around it, trying to ignore it because they don’t know what to say. We have no experience talking to those who lie on the edge, so we read books, or we talk about the weather. Cheryl comes to see me, and she and Linda talk about how quickly I am changing, how quickly I am dying. But they don’t talk to me about it. And so I am even more isolated.
At the end of Chrono Crusade, Sister Rosette lives in this state and it is summed up well the feelings that come at the end. Because Death is a bit like a dodgy bus service: You have to wait around for it regardless of how late it might seem to be, there isn’t another option. So to find small conversations, when I have the lung capacity, or small pleasures (or if I am lucky, orgasms – I’ll explain that one later), and watching the one thing I was sure I had control over alter and turn into something else: a stranger. First the body, the legs, the belly, the lungs and heart, the eyes, the arms, and fingers, all eventually strangers, distant strangers. That is the hardest part, the inability to get back up. To have to accept and not confront those who abuse power, those who abuse you, who abuse others, who try to remove choice, as you are too weak, fighting a body which seems no longer your own. But I am still here, fighting.

If you can’t read the four pages clearly, click on then and then click backspace with your browser to return.




No, at that moment, I want to leave the pain, I want to die, but I won't die. But that time will come too.

I keep letters and postcards by the bed and computer, to remind me that I am not alone. And that after a lifetime of preserving choice, when I was most vulnerable, most isolated, weak and chained, they chose, Linda choose……me. To Alice Malvin, I and those who rescue us from ourselves. Thank 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.

Loss: the 'real' Bucket List

How do I speak of what is secret and precious? I guess I just start.

Loss. It is the pain of having something removed, something thought and assumed was mine to keep forever. The pain of having the choice taken away; having that possibility taken away leaves an ache.

Loss comes with chronic and degenerative illness/disability. If you are born with one and often if you are not and get one for no 'why?' at all, then society shows and tells you over and over what you are missing, making your loss public instead of held in the privacy of your heart.
Someone might want to be a ‘Stay at home’ mom, but no one wants or thinks about being a ‘dependant and ill mom’ or a ‘stay at home person’ who watches the life they planned for themselves being done by others. They don’t think they will have to lie there and hear of cousins or nieces and nephews, who now do what they had planned for themselves, if only able.

Within disability and illness we talk about spoons or coping but we don’t often talk about the loss that we feel, see, brush up against daily and weekly. We don’t have an easy theory for the pain of loss which hits us in the face every time we leave our stable environment; or haunts our dreams. There are the things, little things, we fight to hold onto: the ability to talk with friends, to drop down to a restaurant when we want, to go to a movie, to have a date, to go shopping, to go spontaneously for a drive, or to go spontaneously anywhere. As time passes, we give up some of these fights as we put our energy into survival. For me, every loss makes me feel withered and small, that it is not the choice I have lost but part of me.
I get bitter when I hear people talk about doing the crosswords ‘while they are waiting.’ Bitter because each day I work at my highest levels just to email people. And each day I am ill and cannot email, I fall behind. I will never have the capacity mentally to do a crossword, nor a life where I have so much time that I am ‘waiting’. And that is the loss I feel over just a crossword puzzle.

So how then do I as a woman dedicated to sports sit on the sideline? How do I accept that I spent 14 years in order to NOT teach people about Victorian Literature or History, or English Literature or Creative Writing. And instead I try and grasp the cloud-like wisps of living with disease and dying and write them down. To fill the critical ‘between the lines’ of every heroic crip story, and every disabled person or dying person who pogo stick hopped across their town or wheeled across a distance to raise money for research. I write the rest of the story. I write about the nights we spend lying there, just thinking, and the mornings and the trembles in the hands and new symptoms showing up and not knowing if they are going to stay.

Loss is painful and it seems in many ways, every time I think I can take it, the pain of loss hits again. Does it ever end? As soon as I come to peace with myself, and accept this is who I am, I lose something else. Or am reminded of something that I had not thought of. Or worse, I forget that any loss I have does not affect only me, or redefine me but force others to redefine themselves and our relationship.

How to describe the feeling I have when I wheel out and Linda and Cheryl are talking in low voices? They see me and Linda stands, looking down on me and says, “Why don’t you go and play on your computer in the study, Cheryl and I are talking about ‘Adult’ things.”

It is the pain, so gasping and sharp it is on the edge of ‘exquisite’, like the feeling when salt is applied to a wound, that first overwhelming microsecond.
Somewhere in all the loss, in all the little memories of pain, and in the dreams and body memories that make me cry when I wake to find myself in a hospital bed, there are still moments of sweetness. More than just a willingness to trust a partner or someone and be taken to places where people may not know my condition, may make things worse and so those with chronic and degenerative conditions have a horrid time. That happens and yet, I and I think ‘we’ risk again.

The questions must be asked. What is important now, not the ‘before’ life but now? What can I be, what can I do? What life can be constructed? These questions are answered. For those with less time, they are asked and answered every adjustment, every major change. How do I want to face my death? How do I want to be remembered? Who am I after all?

There was a movie called ‘The Bucket List’ with Morgan Freeman having cancer and no treatments work and yet he has all his hair and looks great and is sharing a room with a billionaire played by Jack Nicholson. And the basis is that what have we denied ourselves over the years we should get back in dying. So with unlimited money it is not about growth but about how to be selfish and shallow: that dying doesn't include caring, family, or self examination, it was about driving fast cars and jumping out of planes in exotic countries. The movie not only got immediate popularity but for the “Me” generation, the generation now, people started making their own “Bucket List” of what they wanted to do before they die.

Someone said to me recently that in North American, with so many needs met for those who have the money, there is no spirituality. Maybe so, as the generation which has the money and power seem to want even death to become about pure consumption.

For those of us with Chronic Illnesses, degenerative illnesses, chronic conditions, terminal conditions, I have found, for me, and others that there is another list, a genuine ‘Bucket List’ which has nothing to do with the fantasies of an able bodied life. Those dreams are burnt away. I dreamt of seeing my name up there in the top 10 nationally in fencing Epee. Now that seems so...well, not where I am. And while I would pay a lot to be able to fence on a strip, a piste again, with full motion and power, to stand with the strength literally radiating out of me as I move my body, limbs and torso, fingers and mind all in unison of microseconds. Just one bout. And yet that is not where I am either. That is not on a list because that is part of what accepting loss is.

There is a list, almost invisible, written in the heart, because it is not a list that others or I control. Indeed, the aspect of having a chronic condition is learning that however type A I might be, I am not in control. And so, in hours and minutes and days of dying, in the talking with those who do matter, my family and friends, we talk, we rest, they help me to bed, they watch over me. The knowledge that I will not be here again, I will not come this way again, I will not see this summer again perhaps, probably, informs us all.

We talk of places, San Francisco, and of things like food, or experiences. I remember seeing fireflies and it turns out that no one has seen one for a long time. I saw some when I was 21 when I lived in Gettysburg, PA. I ask if they are dying out. The others think maybe so. And I think, and say that it sure would be nice to see some again. Because there is something magical about fireflies isn’t there? Ray Bradbury knew that....they are the eternal summer, the magic of a warm, quiet, still night. And then the conversation goes on and we talk about a road trip maybe, fantasy probably, because fireflies cannot be produced by wishing, nor controlled. I will not use my last strength and funds to chase fireflies. There are so many other things I would like to share seeing with Linda and Cheryl (like Sakura-con! And trying Jyudo, the Japanese Archery. And doing some 5K’s).

So fireflies and meeting Cheryl’s family go on the real ‘Bucket List’ because that is the list that maybe will happen and probably won’t before I kick the bucket. And I can’t buy them, I can’t own them, I can’t will them, they either happen or they don’t. And I think that is the same for many of you.

Whether for you it is the smell of fresh bread you have baked or if it is a day, a ‘good’ day, without that many rests, on the park, not to hot, watching the kites, flying a kite, coming back a little browned and exhausted. If that is on the Bucket List, then that is what you remember as you lie in bed, when the pain meds don’t work very well. Or you are so tired, so very tired that maybe it is time to really sleep this time. And you think of that day, because you had that day, together with the person you loved. It isn’t fast cars or expensive meals. But it is what gets you through the darkness.

Tomorrow or the day after I will write about the three things I have to remember from my Bucket List and the ones that I hope for, I think about, like holding a kitten. I haven’t done it but I think about it, day-dream of it. I hope that the people who read will share a little about loss, or about that experience they remember which gets them through the night.

Last week, the second night in Manitoba, we went out towards the van, Linda, her father and I. There had been flooding of the marshes and standing water and in the darkness between house and car I looked to the left, and slowed as I looked again and said, “Linda.. fireflies.” And she came and looked, and I wheeled into the black to see a patch, a ditch and a bit of wood lighting up with green dots against the dark. And Linda stood beside me.

I don’t know how long, a minute, more or less we stayed and watched. Because now, after all these years, had come the fireflies. That I will remember, always, because it was on my list of things I wanted to see. The list of things I knew I never would see. And yet there they were. Even if the rest of the trip wasn’t what I wanted, what can erase a moon, and fireflies, where none had seen them, where none of us there had seen any for ten to fifteen years?

I may seem very simple to you. Fireflies. But to have been there with Linda, to share them together is worth more than anything I can think of that I would do alone. That is one of my things I did before I kicked the bucket, I saw fireflies again. Unexpected, and yet, as precious to me as a taxi drive with Linda through a Japan town after midnight, the quiet streets and the warm glow after floating around on natural hot springs for an hour. After seeing through the mini tropical garden and green hazed smoke which came out of the vents from the spring itself. The memory of those nights, that feeling of contentment I will bring back to rub until all the sides are smooth from knowing it again and again.

Loss will continue, the pain will continue, death will come forward, my life becomes limited. Yet mixed in there will be that single minute, on a field, with Linda, her father behind, and the illumination.