“Hi Nu, that’s Filipino? My name is Elizabeth.”
“No,” she said, “My name is XXXX but I’m new.”
Oh.
Less than two hours later she literally RAN for the door leaving me able to only move parts of my fingers but not talk. She had said several times, “I shouldn’t have been sent here!” Seems she wasn’t trained on seizures, oxygen, or even what told my needs were. All she had was a name and an address. I had asked her pre-seizures how she knew whether or not to turn up the heat without knowing if a person had MS or was heat intolerant? She said she looked in the book if she could find it.
It was one of those days. I had problems getting out of bed; I had pulled my shoulder and part of my spine, and couldn’t raise my hands above my head – definitely a low ponytail day (you know those hair choices made for you – like the other day when I spent 15 minutes putting in earrings because I, dammit, was the person, who was in charge, not the disability/diseases).
Tonight is the start of Remembrance Day. It is supposed to be for WWI, the War which would end all Wars (they seem unbelievable optimists from our jaded position). But since almost no one observing it knows what is to be remembered; I will remember for them. It was not death they mourned but death preventable, death from pride, death from vanity, death from the avarice of leaders. Death because those, both men and women in command would rather have 100,000 human beings charge across a field against machine guns than admit they didn’t KNOW what they are doing.
Of course it doesn’t end there. There are those killed because of stupidity, whether that happens to be from a home care agency in Victoria to the intolerance in each country which rack up a death toll in the dozens for T-individuals. Then we can add in for North America another couple dozen in the US for gay men, some more lesbians, bisexuals, the abuse against pagans, atheists, Muslims and other minorities. This is supposed to be the day we hold the mirror, no not to THEM (whether that is leaders, or the political group you oppose) but to ourselves.
Some wanted to know what I was 15 or so years ago, and I can say with certainty I was far sicker than I am now. This is what I looked like:
If you saw with your heart. I was anorexic, full of self hatred and channeled hatred for all those who were not ‘the elect’; which was everyone from Catholics to Atheists, Gays to those who have tattoos. I was so full of righteousness it was killing me; and the chains were put there by me. I was holding, in my heart, what I been trained and believed with all my being were to be hated. And so I punished myself harder than anyone else could. I have always been true to my heart, my beliefs, and I have always been wrong, or ignorant or both.I was lucky enough to know that I needed to be free, gone from the life I was “destined” for, and instead at a ‘secular’ university where I was frequently insulted by a teacher, many teachers. “What?!” came the screech as I was out of my chair and striding toward the front of the class of 100 students. And which point my philosophy teacher and I would shriek premise versus context at each other at such speed for up to 30 minutes that at times she would simply stop and say, “Time for Wittgenstein now.” And other times I would be left shaking with pent up frustration my finger outstretched waiting for the argument which never did appear in my mind. I stomped back to my desk. (Don’t worry, I got an A – teachers are basically bored and I was at least amusing).
These poor teachers, so much ignorance, so much isolation, and so challenged an individual, I was pushed and pushed every minute. I began to understand one thing, that life was something you either joined in or watched. But whether you liked it or not, this was the only game, and if you wanted something changed, then you had to play. And that meant getting hit, and stomped on. I decided then that I was going to get off the sidelines, I was going to go out there, on the other side of the glass:
to stop just thinking and analyzing life, and start BEING in it. I started trying things out, taking chances, intellectually and physically.I started to become the collection of individual, including myself instead of just a repetition machine of whatever group or person impressed me that year (or some parent or pastor). And I developed the one trait which has stuck with me through the years; a form of believe that I try to live beyond all others and have several times almost died by: That to know what is right, or good, and to do otherwise is the greatest of sins. To be asked to lie, or die, is to tell the truth. There is no consequence, only what is right. Many times, I have been pressed, and emotionally pushed when finding the very person who led the harassment and persecution against me, whose existence has made mine unbearable: finding that they have suffered loss or needed consolation. Oh the hours I gritted my teeth and sat there until I could feel what it would be like to be where they were. To give, to show care without actually caring would be a lie, and I don’t lie. Good must be followed.
I have lost jobs, I have almost lost an entire degree because on this point I would not move. People have said, what if you are in the time of the Nazi’s and Jews are in the cellar and the Nazi’s show up at your door with guns demanding you tell them if there are Jews there, surely I would lie then. I said, no, I would tell them to come back when they have something more legal than a gun and shut the door.
I met Linda and because she believed; believed in me, believed I could be loved, should be loved, that I was something more than a sacrifice, I gave my chains to her;
I started what would be an almost decade journey of healing. And she kept me alive. When it was time for me to stand in front of the trucks, she stopped me. When it was time to board an airplane with a one way ticket and suitcases full of cigs and liquor for bribes: or to buy a land rover and fill it with medicine she stopped me. I gave her my heart. No, I didn’t just give her my love, I gave her the ability to determine my heart; to live or die, to stay or go. She taught me that “I need you” is the strongest words in English. I have protected her, I have forced myself to do nothing so she protected herself; I have come to right the wrongs against her; I have forced myself to sit aside as she fights against her nature to right those who wrong her. Every person, every individual person who says something against lesbians, who says something about how disgusting they are…..you are speaking about Linda.See, for me, I am a beast that is chained, I am inhuman (at least one parent and most of my supervisors have said so), but when others talk, even unknowing, without realizing the implication of your statement about how gross it is that LINDA gets pleasure from being a lesbian, I do not tolerate. And you don’t want to see or hear me when I don’t tolerate. “May your children be born with the worms of death crawling out of them, may maggots eat at your living flesh, and may my hand be the one to bring the coal of your unending suffering to burn forever within you. You will pray that someone had slit you as a fetus from your mothers belly and cry that you had not died in childbirth.” Oops, sorry, got what Cheryl calls a bit Old Testament. Um, please don’t say things about Linda. I do keep a list of every statement and person, from Bishops on down, when the time and the world changed enough to file them in the Hague and have them charged as individuals who perpetrated Crimes against Humanity. Yeah.
Linda is the only person in my entire life who I know has seen all the darkness of me and sees it as light. She is the only person who has not left me. She has been only person who will not try to make me into a lie, to ask me to lie for them, to make them more comfortable.
So here we are, two lesbians in the darkness fumbling our way.
No, more metaphysical than sexual, try to keep your mind on the topic. And for us, as this disease has spread in me, while we have progressed, bounced from one specialist and one hospital visit to another has been an unending revelation of horror. It is worse and more than not knowing what day or month it is, but not even knowing what that means, what time means. I don’t know what to do without lists, I don’t know who I am supposed to be until someone comes. When Cheryl left the other day, I simply sat there, not moving until Linda got home over two and half hours later. Why? Because I didn’t know what or who I was supposed to be. I had no cues. If Linda had written, “Write or work on the computer until I come” I would have done that. I know that sentence because we talked about it. I need more lists. I am currently having the failure of two organs at least. We are trying to deal with that, one day at a time.Linda is there, Linda tells me I will be okay, Linda tells me I will be able to breath again, Linda starts my heart if it stops. Yes, we fight, we get frustrated, I get upset at things that make little sense to her; she moved some things, she took some money from beside my table. I told her, “You didn’t just take my money, you took part of my MIND!” – I have so little functional memory, I have no idea why things aren’t where I remember them except that they aren’t there – another thing not there. So to have a loved one do this deliberately…..tears and frustration. But who is it who stays, who gives me tissue, who carries me, as I am now lighter than I was when I first got my drivers license (and I was anorexic then!), to bed? Who is it who holds my head to drink, who remembers to help me drink (since I don’t feel the need to drink, nor to pee): to remember the dozen of pills, and when I need to have them all? Who fights for me against the over a dozen different agencies and individuals who are asking, demanding that I spend all my energy doing the same tests one more time to ensure that they don’t get sued? Those who still offer no treatment.
I have learned that when you sleep in a coffin, if you don’t choose how you are going to spend those days, others will choose them for you.
As for me, I want to spend my time doing what is important; Linda, love, caring for those close to me (which as it happens, means those spread from Africa, Australia, New Zealand, EU, UK, the US and Canada). That slightly confused look on the girl’s face; that same look is on my face several times a day which is why Cheryl and Linda are there. So that, like today, Linda could explain what “pizza” was to me, and that it is good to eat (it is like a thin pie with stuff on top!).That is my remembrance day; that the people who matter make themselves known. I carry the experiences and understanding of dozens of people now dead but still alive in me. As my Grandfather said, “Always make time for dessert” (and “Of course, I’ll have cookies!”), from my friend who died from Marfan’s, “You worry too much, and you don’t look enough for the good surprises” and then he would laugh. From M. who taught me that laughing is worth having blood seep out of your sutures from your heart transplant at 15. And from the boy who gave the class ex-lax cookies and would be dead two years later; and said to me with a plaintive and honest face, “why don’t they like me?” From him I learned that there are lonely people out there, people who need love even if they only know how to hurt themselves and others. From the children dead, in accidents, in genetic illnesses, I learned things like how to blow a dandelion so the seeds spread across the field. I will not romanticism them, because then I cannot learn what they were telling me. I learned that to bring a child, to bring anyone happiness, even for a moment, no matter how painful or difficult their life, or how much brain damage or organ loss, it is a gift which will both be gone in a few seconds and stand forever. I learned that people will do anything for hope: for more life (so much they sometimes lose the little time they have in such a chase). And I learned that people are so scared of seeing what the reality of being sick and disabled is they would not only rather die, but rather kill off those who might threaten their version of reality (stay away from these!).
I learned that family are those who genuinely act like family, and sometimes the most silent members are the ones who listen and know how to be there at the right times. I also know that I WILL die, and that by doing so I will cause Linda and Cheryl and maybe many others unbearable suffering. For Linda it will be suffering by the minute, by the hour, stacked in bricks.
To know and do nothing, to know and not create memories that are good, that isn’t me! I will not lie, I have been in considerable pain (and I mean pain that leaves you barely conscious, when it does). And if I want to stop getting weaker, I expect I will have more pain. But I will give Linda minutes and hours; give Cheryl minutes and hours, and give my real family, those who care about me, the minutes and hours that will help them remember, the real me. Because anyone can scream in pain, but only I can turn it into a sexual innuendo. I can make people laugh at the worst of it. I know the worst of it and haven’t shown you, and from now on, I think I will know more and more of it, and maybe things unimaginably bad. But I will fight, sure, to live, but more important, to spend the time I am alive helping those who matter know me; see me; remember me. Because some day I will be one of the dozens of dead who make up OTHER people, and I can’t say what they will remember from me. But since I am NOT dead, that is still malleable.
This is who I am: the dreamer who will wake something inside you that you did not know you had. I do not wait for God, I do not wait for people to be better, I do not wait to be treated better: a new Jerusalem will rise, because people will change. Because I KNOW people CAN change. And if it is possible, even it is considered impossible, then isn’t it worth believing in, taking joy in?
I am GLAD I sent out postcards. I sent out two postcards yesterday. I will send out more this week; I am glad I reply to comments, I am glad I reply to emails. I am in pain, I am tired, but I am determined and I am going to be happy too. No, I’m not always happy, and never at peace. I am a human after all. But because of something I thought of in my head, I have dozens of people helping me send out postcards to over 250 people. Over 800 postcards have gone OUT, just from me, with the help of so many. And how many more postcards have come in to me? A few hundred when you include letters and packages. And six months ago, this wasn’t even an idea. So because of an idea, and not to get hokey, love and the willingness to risk my heart, myself,
to leave myself exposed and to act without caution, without a net, to give it my all. The postcards go out to five continents, and as for my other projects, they too will rise. And if every postcard that was sent was torn up immediately, it would STILL BE WORTH DOING. Because better to be a stupid dreamer who loves a dream enough to live it, than a person who risks nothing, changes nothing and believes in nothing. Not a single card sent to me has been destroyed (well except those guys sent with their pictures of their penises). Because someone cared, someone changed the world.Linda believes in me, Cheryl believes in me. They believe in more than that my dream of postcards starting a worldwide change in people caring for each other in a tangible way (hey, the larger the object, the harder it is to get it to start turning – and six billion is a large mass, but it IS turning!). But Linda and Cheryl know that I care about the two of them more than I care about myself. And yes, that I will get it wrong but that I will figure out how to prioritize so that we have fun, so that we ALL have fun. Aren’t you tired of being sad? I am. Pizza is a kind of pie that you put things on; dandelions spread when you blow on them and that stomped leaves sound cool. This is my remembrance day. What is yours? What will yours be?
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20 comments:
"Hi Nu" - Mehehe :D
Yea...I hear you... It was an incredible waste of life. It's really scary to think back to those sort of events and especially before that, with the Red-Coat's muzzle to muzzle war tacticts they had. If you were in the front line, you were GOING to die...and to the generals, you were merely a weapon to be used once and discarded.
You are also so right about looking at our own reflections in the mirror... Are we doing everything we can, in order to promote peace or are we merely booeing from the sidelines at the indescribable horrors that is still rampant in this day and age...and not only through wars.
It is not the dark ages any more, where the government only gives us protection and leniance because we work their fields... We do have voices and if we were not to stand up against attrosities and causes to remember...then no one will...
How does the saying go? Help me here...something about good men doing nothing, being just as bad as bad men doing something...?
That is what rememberance is about...shaking us awake so we don't forget to use the hard learn't lessons and to use our own common sense before we learn another hard lesson...
I never had anorexia...but I have been accused of having it on many occasions, as I am sure a lot of people with MFS has. Compounding the fact, is that I have very strange eating habits and difficulty eating possibly due to a Hiatial-Hernia.
Supper time as a kid used to be a constant war usually associated with screaming, fighting, being locked in bathrooms and getting spanked... How do you explain or even know as a kid that your body simply refuses to accept food at that point in time and that if left alone, you would eventually be able to eat and that you are not starving... even though you look it.
Initially my family just gave up on trying to get me to eat like a "normal" person would...finally, with the dx's, they have started to understand a bit better. Yet, old habits die hard... Even though they know my BMI is actually pretty good, they just can't sometimes help saying "You are so thin! You should eat more!".
One of my friends used to joke that I eat little kid's souls as they never saw me eating...lol. Another used to say that I am so thin, I am going to fall through my own arse hehe.
I too have lost jobs...due to being immoveable. I have a set of programming "morals" I just can't break... To me, it is like lying...or stealing...or letting the Nazi's in... Me and bussiness is constantly at war because to me, how bussinesses make profit, is immoral... I am not saying they should run at a lost...not at all... Just be more honest in your dealings with clients and what you ask your developers to deliver. It's the same as when you cut corners when building a house. The one difference, is that you can't intentionally leave a brick out of the house just so the owner would have to pay a small fortune to upgrade to one that has that brick in...
Love, true love, unconditional love, that is love...not what people think about when thinking of love. I envy you in having someone as special as Linda. Someone willing to give of them selves no matter what and who will love you no matter what. Love is not about your appearance or capabilities...that is transient...
I believe in you.
I can't believe in the world...but I believe that the world can be changed to be believable... And I believe, I try to do it every day in as small as it might seem ways...
In personal life...I remember a few very special people in my life, that toke the time to care about me...whom I have lost contact with.
Somehow, I want to say that some of my family won't actually appear on that list...but, time will tell if my mind, emotions and the manic gremlins is just lying to me about that.
What a beautiful love letter - to Linda, to the world and, I think, to yourself. Much deserved, because you are bringing love and beauty back for so many people, me included.
I really like the challenge you put out there - what's Remembrance Day for? Why it's not just a day off with ceremonies to be ignored. Thanks for that.
Argh! Inspiring words so well put to finish a post for which I do not currently have an adjective! So what have I done today? Nothing, really. How embarrassing.
I also had problems getting out of bed today, but mine were of a less important nature, and were self-inflicted (should have gone to bed on time).
It is clear that I have nothing to say, so I shall stop saying it. Thank you for your patience ;-)
(P.S. I am still here!)
That was a hell of a remembrance - and possibly the most touching love letter I've ever read. I'm not sure how to answer your question yet, so I'll stick to other comments for now.
Poor Beth, and poor Nu! Agencies do tend to underinform their aides when they send them out. I think they're afraid that if they're honest about a client's difficulties, the aides will refuse to go. "Well, Mr. Steward has Alzheimer's, he's an incurable lech, likes to flash his aides, sundowns badly, gets violent, and is so unsteady on his feet that you'll need to steady him while he's attacking you so he doesn't fall down and hurt himself." "Ack! No!"
So instead they just tell you Mr. Stewart needs someone to feed him dinner, get him into bed, and listen in case he falls, and send you off to be molested and assaulted without warning.
In your case, the differences are medical rather than danger to the aide, nonetheless, I would want some serious specific training before functioning as an aide for you - before I would feel that you were safe in my care (at least as safe as you ever are). And I'm easily in the 99th percentile of medical training and education for home health aides, so I can imagine that Nu probably felt completely adrift.
The agencies do a serious disservice to both their clients and their aides by behaving this way. The clients don't get the level of care they should, which can range from inconvenient to fatal, and the aides get to flounder unnecessarily, and sometimes be put in harm's way.
I always remember things that make me smile. I try to. and sometimes I am glad I have a poor memory because some bad things have just faded away into nothingness.
Beautiful post. Scary post. I thought you're care giving company had learned their lesson.
And again I am sorry that you have had to be so angry in your life, and thank heavens for Linda who obviously helped you to heal.
I was going to write, see you soon, because it feels like I should pop over any day for a visit. But well, I won't since I can't afford a travel around the world:)
Good nigth
The guns have fired today. The ceremonies are mostly over. I think about the futility of marching off to get killed in a cause that really makes no sense.
Francesco's Mediterranean Voyage stopped at Gallipoli. He walked along the beach, and the camera looked up almost-cliff, and you can't help but realize how incredibly STUPID that battle was. Francesco stopped and said, "Look," brushed some soil away, and uncovered a human bone.He gently covered it again, and explained that 2000 people died in one day. It took 2 years to gain 800 metres of ground.
Francesco puts a rose on the grave of a 16 year-old who died at Gallipoli. Then he talks to a couple of New Zealanders, one of whom says they found a grave where a kid had lied about his age so he could go off to glorious adventures and see Europe. Instead, he died at Gallipoli at the age of fourteen.
I'm watching Jesse Cook while I type - but I should be listening to Eric Bogle's "No Man's Land."
You know, Beth, you've misquoted the reason for Remembrance Day. It's supposed to be so we can remember the gallant sacrifice of all those young lads, who were killed in glorious battle so we could all be free... and that's complete bullshit, say I. Your version of it is so much better, dear lady.
I remember my mother's story of how she and her twin sister went on a picnic in London, and were strafed by a Messerschmidt. Somehow, miraculously (or I wouldn't be here!) the pilot missed them both. Either he was a terrible shot, or they were incredibly lucky, or he was just playing (playing?) and never intended to kill them. Or maybe he couldn't stomach killing two attractive young ladies. I'll choose that last thought, thanks.
I'll remember you, dear, as someone who made me look at life, and people, differently. I hope I'm a better person for it. I think I am.
Love, hugs and respect!
Neil
Linda is so lucky to be loved this deeply by you. And you are so lucky - blessed? - to have her to love you back. I started to cry reading this.
Thank you for continuing to write, for sending post cards and finding just the right picture for every person and every blog. Thank you for writing Zed which I can't get out of my head since reading it this summer. Thank you for being honest, and being fierce and making the world a warmer place.
I'm back to work after taking my little mini-vacation, so I have to be brief and just say the most important thing:
Real love between two people is too precious to despise. Whenever two hearts have joined as one, it should be celebrated, glorified, and encouraged. For one person to find true joy in the existence of another is an enviable state. For two people to find mutual joy in each other is the holy grail of the human heart. As someone who has never had such a relationship, I want to thank you for sharing the love of your marriage. It cheers me whenever I know of two true lovers. I may never be so lucky, but I would be a small, pitiful person if I wasn't glad for your good fortune.
Hey :-)
I totally have nothing to say, again, I just sent you an email and I wanted to say on here that those pictures you post are very cool, but why is that girl in the last picture sniffing her fingers? ;-)
Also, a quick joke because if I stop laughing I'll probably cry*: Question: What's a lesbian with long fingernails?
Answer:**
* Yes, I'll totally make you read thru my long whinge right here to get to that answer!
My parents are visiting and my mom argued with my son about which light he should leave on during the night... And that's just the last thing she lectured us about! She also cut my blackberry "bush" which is more like a stalk now and I think she went and planted my bulbs which I wanted my son to plant. Seriously, two more days, I keep reminding me that murder means a sentence for life and that's not worth it, but seriously, every passing day makes tie in a cell with meals and clothes provided for seem like a very attractive idea indeed ;-)
** Oh yeah, the
Answer: SINGLE!
"Because anyone can scream in pain, but only I can turn it into a sexual innuendo."--CLASSIC!!!
Keep plugging along, woman--I think of you every time I fence, and you inspire me and give me perspective. Know that you have tons of people sending you positive thoughts from around the world!
Over here in the states it is called veteran's Day but I like your personal version of remembrance day much better.
It is good and right to remember those who have been harmed and persecuted and villified for simply being different.
You know I have always been skeptical of all the blather one reads about soul mates but having met you and Linda has made me rethink that. If there were ever two people who were meant to be together it is definitely you both.
My remebrance day is taking care of me and regrouping. It is watching anime. It is talking to friends.
This post really touched me, especially the part about how the Postcard Project is worth it no matter what. It brought up a lot of emotion I have yet to sort through, so I will simply post the first thing that came to mind, a quote (I might be getting it a little wrong though) from Mother Teresa: "It may be a drop in the ocean, but the ocean would be less without that drop."
Or there is the parable of the boy throwing beached starfish back into the sea, when someone says, "Why are you doing that? There are billions of starfish. You can't possibly save them all, and the world wouldn't miss one less starfish."
The boy replies, "The starfish may not mean much to the world, but throwing it back into the ocean means the world to the starfish."
I know, cliches, but still sorting through those emotions and those two are the first things that connected.
I do wish your agency would at least give your staff some decent information and training. I liken what they are doing to care staff not knowing that they have a client violently allergic to peanuts and bringing them a special treat and sending them into anaphylactic shock. Simply fucking inadequate. Once or twice makes a good story but this much ongoing stuff is sickeningly stupid.
Remembrance day for me is not so much a military thing but to honour individuals who did the right thing in any difficult situation or who have been victims of violence or the other bad things.
So I honour equally someone who got shot protecting children, people who are victims of landmines, stuff like Chernobyl radiation spill, people who in wars and out of wars genuinely fight for motives that are about protecting others or serving others... and I also honour those people who did not fight because for them that was the right thing that they had to do.
I honour people who suffer at the hands of your staff and any other such creatures, I honour people who risk themselves against forms of tyranny, whether it's in war or in social care or in opposing freedom of speech or civil rights. When they are in it for glory and power and kudos, that is not the honourable part. But when they do it because it's dirty and someone has to do it, that is real glory and honourable acts.
I like what your remembrance day is, and your 'New Jerusalem' of change. Not sweeping in dramatically, but I can see the banners in the distance, and every time someone does the right things that need to be done, they come a little closer.
Today is about remembering lives cut short and about sacrifices made, it's NOT about the generals or the winners but the ordinary lads and lasses - and I really believe it's also about a quiet, determined sort of celebrating and recommitting to life. A key message is to live before you die rather than to be afraid of life - we all die some day, but some people will day not having lived, and that seems such a terrible waste, an insult almost. That mirror is held up to us and our society, and it challenges us to do something with our lives before we too are poppy food.
I believe in you - that you are probably very spiky and hard to live with at times, that we would argue like heck if we spent time together, but I know we would also laugh and make sick jokes. I know that we share values - truth, integrity, the importance of love and reaching out to others, the magic of a book or a picture and the importance of SHARING that magic with others. You'll be remembered, and perhaps more importantly, you'll have lived and encouraged others to live (I don't say inspired, I know that's not a word you like - but you are a great example of someone set on a path and insisting on using what resources they have to do something positive, for their loved ones and for a wider circle of people, and that's... well, encouraging...).
Your home care terrifies me, but "Hi Nu"...so funny!! Its too bad that she was put in a situation that was WAY over her head and abilities.
The story of you and Linda, and your absolute love is a beautiful, and hauntingly perfect one. How any one can see it as anything other than a perfect love story is beyond me. That had to be one of the most amazing love letters ever written. I cried because of a bit of envy, and just because it's so beautiful.
My remembrance day? It's called veterans day here and I think of one of the most amazing veterans I know-My father in law. He is a WWII vet and former POW. He was held by the Germans for 9 months in a prisoner camp. The amazing thing is, he lived through hell, starvation, never knowing if they would tire of them and just line them up and shoot them, or live another day, and the miracle is, he holds no real animosity toward his captures. That is what makes him great..not just that he survived a POW camp. He talks of literally starving, begging the guy next to him to give him just a tiny bite of the raw rat that was caught, making soup of grass, water and bugs that were caught. Yet, he will talk with tears about how the German soldiers were just as hungry, cold, and miserable. The German armies were out of money, their troops were starving. They were holding him prisoner, yet he has compassion and forgiveness for them. He didn't see the political sides, he was an 18 year old child, but he saw the people, the individuals, the common threads that made them all part of the whole and he loved and he hoped. TO me, he is one of the greatest men. He speaks truth, to the point it's painful. He loves fiercely. His family is everything. I'm blessed to be included in this family, because he loves me. I think being loved by those who are great is the most amazing gift there is and this day, and remembering them, is what it's about. The great people I know aren't rich, or famous. They are great for their truths, loves, and personal beliefs. You Beth..are one of the greatest. And my remembrance includes you too.
GEESH..what is with me and all the long comments. I'm really sorry. I guess I just like to ramble.
"Seems she wasn’t trained on seizures, oxygen, or even what told my needs were." - Guh! Nothing makes me more furious than people who don't know what they're doing being sent to do jobs where people's lives and well-being depend on them.
As for your words on Remembrance Day and what is to be remembered, those are (sadly) very true. There are few (if any) forces more destructive than human ignorance.
"I was so full of righteousness it was killing me" - I know what you mean far more than I would like (but to tell my personal story in that regard would take up more space than a blog comment).
"That to know what is right, or good, and to do otherwise is the greatest of sins." Yes. Yes, THAT. I can't claim I've always lived up to it, but YES.
On a side note, the second ("other side of the glass") picture is very beautiful, as are the fourth ("in the darkness") and fifth ("coffin girl") one. If you'd pardon my curiousity, which anime(s) are those from?
"It is worse and more than not knowing what day or month it is, but not even knowing what that means, what time means." - While I don't know what it's like to be in that state, I really feel for you in that regard. (Which is NOT to say I pity you, because I'm sure pity is the last thing you'd want. Just, I'm sorry you have to go through that.)
As for Linda - the kind of love you have is all anyone could wish for. The two of you are living the meaning of marriage. (So much for "Same-sex couple are eroding marriage and family values!", eh?)
"people are so scared of seeing what the reality of being sick and disabled" - I am scared. But at the same time, I am not afraid. (If that makes sense.) I do want to do my best to not turn away from seeing your reality.
You might be familiar with the feminist saying, "Get used to being uncomfortable, because those are the times when you LEARN?" I think that saying is a valuable one, and your words have reminded me of it more than once.
"a new Jerusalem will rise, because people will change" - Yes. YES. To speak about spirituality after all (which always makes me feel shy), you're teaching me a lot about what it means to be a Christian. Humans dread change (don't we?), but being a Christian is about exactly that - change. To let the Holy Spirit change you, without reserve.
In conclusion, yes, yes, and yes.
As always, your post is so incredibly rich that I struggle to find where I want to start my comment...
First, as others have noted, what an incredible love letter to lovely Linda. Your love for each other is palpable over the usually-cold Internet. I feel so happy that you have each other... then sometimes wonder if I will be that blessed in my lifetime... but I have my son and, although another kind of love, I can't imagine a stronger bond than I have for my beautiful child, who I carried under my heart for 9 months, over my heart for the next 2 years and now he walks around is if WITH my heart, as many parents will tell you.
With regards to caregivers with shit training: I know for a fact that a certain large company here in town went from hiring people with at least a home support worker certificate (6 months of training, which can be fairly decent) to PAYING people to be trained BY them and then working for them! Nope! No schooling required, we'll teach you then you work for us! Money right away! Who CARES if you're passably fluent in English, fake it!
It's SO sickening, but what does the government expect? The charming Liberals came into power and they chopped the starting wage for community support and home support to (and this is UNION, mind you) $13.87 from $16.79 or a few cents near that (it was around $3 less per hour). Since the new contracts were hustled through in 2006 (signing bonus of you take our shitty offer of a 'raise' of a whopping $0.50 now and a little more in a year!). Um, yeah, guess what union I was in when I was injured nearly 3 years ago? Hint: the LARGEST union in BC with some 35,000 members in the, ahem, government and social services fields!
Nope, I'm not bitter. Nor am I bitter that I could be your caregiver right now (and I'd be DAMN good at it, with PRIDE, fierce pride in my work!) if I hadn't been traumatically injured at my own job... then tossed to the side without assistance when I became of no use to them anymore...
Umm, this isn't exactly helpful. My point was I fear for you and everyone who must rely on thie pathetic excuse for a care agency and the union(s) which cover these workers - some of whom are certainly excellent, but these days, largely ignorant and grossly unqualified.
I'm so, so, SO sorry that you've been subjected to their idiocy. There is a place in hell for the folks responsible for this sorry state of care and I DO hope that it feels JUST LIKE what you and I go through on a daily basis (although I can only understand the burning, stabbing nerve part with the muscle spasms, I think an eternity of that should suffice for their heinous crimes!).
Moving on in my rant, I want you to know that I still am here, still holding my hand out in friendship. Know that even if you can't reach back, I will still keep offering it to you, humbly, for when you want and need me.
I just want to let you know that I read all this, even though I don't know what to say in response. I'm touched, at least. (And I am probably going to say this on a lot of your posts in the future... so, thank you in advance!)
I think this is beautiful. So well written - thanks Elizabeth.
Drake: Yes, I frustrated that the people in 1918 really believed that they horror they saw, the waste would stop forever anyone doing war again. Yeah...didn't work - now we torture people AFTER we go to war - we've really picked up their thoughts.
"Evil flourishes when good men do nothing" - is that the one?
I can't answer that but from you describe, I am not surprise you have some emotions about food one way or another. They still don't get that you are genetically always going to look thin (ergo elongated?) That you have thin fingers and long hands and feet and the rest?
I think you and I would pretty much agree (if I did programming) - becuase the company isn't treating the client with the respect they want themselves, in the way they program - they are essentially lying in how they present the product.
Linda does have boundries, she has said, "No." or "I'm going for a walk." Because she knows that how I am acting is an extention of abuse, not who I am, and she can see the difference in that. But yes, she works so that she can always be with me, and I with her - so that as she changes and grows, I am not threatened but uplifted.
Just because something seems impossible doesn't mean it shouldn't be tried, particularly if it is good, or noble.
I hope and believe people will be there - sometimes the people you don't count on surprise you as being the most steadfast.
Lene: thanks, Linda was like, "Its not a love letter to me," but she has a different view of things. To her I was just stating facts, not wooing or praising her.
Abi: It is okay, you can do it another day? I just think sometimes, for myself, I am so busy I forget to remember how I got here and what brought me here, and is this where I want to be?
Perpetual Beginner: thanks. I don't know if it is a love letter or a belief. Nations fall, stock markets fluxuate, but Linda remains.
True, what could they put on my file to NOT scare people (I think even listing my degrees would scare them away). The other thing is that I change very rapidly, so I was talking to her about how th new "medical training" (60 minutes) they gave so home care workers with 4-6 weeks of training give opiates and stronger and life or death medications instead of calling an RN (60 minutes to replace and RN?), that Beacon is saying, hey, take the home care worker to jail for negligence, not us! Then suddenly I am turning funny colors and blood is coming out of my nose.
The previous worker for night said I needed and LPN minimum - and I have had RN's for just showering and such - but the problem is to do that, to select a core group to pick from would 'upset the schedule' and so they go on senority and a 18 year old or a 63 year old who is 4'11" shows up at your door, and I am thinking, "Just trying to do my laundry will crush this woman, she's shorter than my jeans!"
Oh well, the problem is that because they won't adapt a system for the huge variety in health care and home care needs, people are recieving abuse, neglect, or dying. Which is why there is a huge investigation now going on on Elder Care (hmmmm, with only one agency in town, who might be getting investigated?).
Anna: That sounds lovely, some nights Linda struggles to find something for me to think about to drive away the nightmares.
Yes, I am sorry too, this is actually what I am working on this week - a little less anger, or trying to not be angry, since it is literally destroying me now.
Well, maybe I will see you soon, some comporation wants to finance a world tour of me doing um, inspections of disabled washrooms?
Neil: I am in envy that you have see it an I have not but Gallipoli is a suitable end to the journey.
Such waste, and all to support a navel movement that stopped 200 yards from it's goal. Sigh
No, I didn't misquote it, actually only in WWII did the idea of gallent deaths come up - WWI, when 11/11/18 at 11:11:11 they believed all war had ended, that the waste, the incredibly waste was over. "Never again" was the motto of Rememberance day. The poppies of flander's field tell us of those potentials never seen, never to be see. We just changed it, made it about why we CONTINUE in war. Because they were wrong about us - nothing it seems can teach humans, that horror is horror. Horror becomes glory, then needful then those who do not love horror are traitors.
Well, I still have a change to change how you see things (I am trying to implant 'world domination').
CJF: Yes, I was a thing created and bound into a purpose that was twisted and it took a long time to untwist it, to help me take the chains off myself.
Thanks for telling me to keep going, that it makes a difference and us Raynaud's folks need a warmer place, at least round the hands and feet.
Yanub: I am sorry that you haven't had that. I did not believe that there was anyone for me. I thought I was too different to be matched with anyone. Which is why, Linda and others worried that if Linda died before me, what would I do? As is, no one knew, except to watch very carefully. It has been hard work, to stay together, to be together. We have been accused of being unhealthy, of being co-dependant. We have our own time and hobbies but of COURSE we are co-dependent! Together, we freed ourselves. How can that be replaced (Well, I have invited her to start dating as preperation - but was squashed, literally for that suggestions).
Desdemonia: Thanks, I work hard, about 60-90 minutes every day to try and get the right pictures. I guess I try harder, I am terrible at HTML, but what I can do, I do try to improve.
Hang in there, I understand the ability of family to push every button and expose every wound as if it is thier right and I am very sorry that you are suffering that right now. Hang in there.
Your joke, very true, I have my nails short and before people were like, "Oh that's becuase you play the double bass" and I was like, "What?.......uh, I mean, sure!"
Alex M: Keep going, I hope you break your goals wide open. I hope you fleche at astounding speeds, and use such tricky as will work, and such hard work and training as will fill the rest and that you have 'magic touch' where you hand find the point by itself (those magic minutes where you can't seem to BUT hit!). Thanks!
Cheryl: Thanks, I know that the US has its version (so as not to do what the rest of the world does!). But also becuase of the civil war, another, "Never again".
The core to finding a soul mate is to have a blazing soul. And having met you, I believe there is a soul mate out there, that perhaps like me, spent years wondering 'why am I so different' - I didn't find Linda because I deserved it, I was just lucky and Linda says the same (because love makes her say strange and illogical things).
"Who are you?" I asked her once when we were getting to know each other and it seemed she was glowing, my feelings for her were so intense. I wondered if she was really human (found out, oh yeah, snores does all that, but stil..). "Who are you?" I asked her, "To do THIS to me?" No one had ever made me feel this way before. I hope and believe that you will to.
Friends are important, so is clean laundry and taking time for yourself.
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