Tuesday, April 27, 2010

Care taking the dying isn't dying. Nightmares and wishes: needing help

I would like your help. In truth, I need your help, in very specific ways, and one of those ways might be your going for a nice meal, or just going out, if you can’t eat. I need you because I am too weak now on my own. I realize that. I can’t survive on my own, much less do more, and I want to do more. Help me please. (Help is not a dirty four letter word)

I went to the video store today (big trip!), not exactly when I wanted, but when my disease allowed me to, having woken me up bloated with bowel troubles though I spent yesterday preparing, with most of my energy, to leave as soon as I got up. But the disease is a mountain, and you don’t go through the mountain just because you want to. On the way back was a corner preacher who had ‘signs of Satan and the End’ of which one was ‘Lightning’. I like lighting. I told him, “Lightning is good.” He said, twice without stopping in this sort of joyful singsong, “All you need to know is that God will raise the dead, God will raise the dead and 5 Billion of us will be ground up for fertilizer in concentration camps, God will raise the dead…..” I told Linda that maybe his emphasis was wrong because if I thought 5 billion people were going to be ground up, I would have a bit more emotion and less joy in my voice. Also, it really did sound like God was raising some sort of zombie army which would round up, put the living in camps before mulching them. Is that REALLY what the person meant? Linda advised against going back. Surreal. Linda was there, to push, to help. She was there to stop me using the rest of my energy on questioning the Zombie army of God and the evil of Lightning. She is the kind of help I need.

Despite what they want to tell you, all people will have medical issues, no matter how many blueberries, or green leafy foods you eat. So when YOU get into the medical whirlwind of testing, treatment and ‘it is probably all in your head’, I letting you know that people get nightmares, lots of them. I did, as did those I know. Those nightmares are probably pushed on by fear of that which can’t be spoken, the pain you live with and that medicinal treatment IS a type of abuse – orders, demands, pain and blame. Plus there is the fear of yet another odd and painful test (“We need to put needle rods into all your bones and then zap you with electricity”). I never had the Zombie army of God nightmare, but I had lots, and they do end. But the truth is, it is better for you if they don’t. You will likely have nightmares if you get treatment because…what if it goes wrong, what if it doesn’t work right after a while and you have to do it all over again, or what if it is out of your control (it is) and you get worse?

I theorize that faced with horror, nightmares are our brains way of preparing us to deal with what we have already accepted in our hearts, or fear in our soul, has to be done.

When they say you have a terminal disease, the nightmares don’t end. But when they have done enough tests and the days you have, the nights you have survived rival anything you have seen on a horror film. Then the nightmares end. When you have a significance chance of amputation, and have to do things every day to make sure that doesn’t happen; or when you have had infections where you drained the pea-soup puss out of them, or hoped the area of skin gone stopped bleeding or didn’t spread, then what is horror in a movie where a person must amputate a foot to save a life (Saw)? None. It isn’t a nightmare, it isn’t a horror film, it’s Tuesday.

Night before last I had a dream that I was pulling bright blue connected and hardened mucus from my lungs, which was literally ripping the tissue and choking me into inability to breathe. As I got one out, another thread in my mouth I would feel and pull on and out came another unbelievably large and expanding blue choking mass from deep in my lungs. This was not a nightmare. This was a fairly pleasant dream. I thought it was real, until hours after waking up I realized that no mucus I have every pulled or coughed out of my lungs was blue, so I asked Linda if I rolled onto my face instead – my heart was very, very, very erratic yesterday and perhaps it just stopped beating for long periods of time (the heart pain woke me up yesterday). See, no nightmare.

So the comfort to take from it is this: you have nightmares because you want to survive, and you are preparing to survive. Take faith in your own capacity to hold on.

For me, long past the nightmares, it is the isolation which sinks me, like falling through icy glacial lakewater, to watch those above, so far away. Or like looking out a cabin door and seeing and knowing the great expanse, without humanity, before contact. We are a culture where babies are collectively rejoiced, and adored, children are treasures, and then sick, elderly or dying are annoyances or negative impacts on the lives of the non-dying. I read again and again about adult and busy children with senior parents and how hard it was for them (the adult children) to ‘go through’ a mothers’ cancer, a fathers’ dementia, the illnesses and death of a parent, or loved one. That is a lie.

I wrote about being sexually abused. Linda lived through comforting me from the nightmares I had for years during counseling, and yet she doesn’t know or really understand the experience or the thinking, the reactions etched into the body and mind from being sexually abused. The same is true of A.A.N., my auto-immune disaster to the brain, and neurological neuropathy disease, she lives with it daily, but doesn’t know it to live it, only what it takes to care for it, and the pain and changes she sees. In that same way watching Philadelphia Story doesn’t gives anyone the experience of dying of, or the sacrifices of taking care of a person living WITH and dying of HIV/AIDS. It is an Opera and TV fallacy…that talking about it is knowing it. But you don’t. A parent or loved one dying isn’t you. We have cancer, WE have dementia, WE have Parkinson’s, WE have MSA, WE have the pain, the cramps, the nausea, the loss of muscle control, bladder control, bowel problems, the lying in bed in pain, unable to be turned. US. Just because we are too tired, or it takes days to make ourselves understood, plus no one is interested in narrating for those who die, so our experience of consciousness while dying is omited. Replaced instead by those with 1,000 times the energy we have towards the end, who stand up in the stead. Even the woman who had a partial stroke, wrote a book and talks about having it skips, except for a mention and a few pages, the 500 plus days of confusion, frustration, and other aspects of rehab.

Care taking is an experience, loss is an experience, those may be your experience, but loss isn’t the same as dying.
But dying without the caring which creates loss, the care taking which is love and sacrifice in action, is a harsh and lonely place. I am asking not just for understanding but for friendship which is action. That friendship which reaches out, which uplifts, which lets me know that there is more outside than the two posters on the soundproofing boarding and the rat-tat-tat of rain hitting. A friendship which ultimately may not have a quid pro quo, though I try, I may not be able to engage or gift back, or email back to the same level, certainly when my hand speed is 1/10th of yours, and the strength to lift my forearms only lasts for the first few hours of the day (and when seizures wiping memory eliminate the best of plans and intentions, leaving only the gnawing that I was going to send something to someone).

I started the postcard project for change. If you go back and look because people on the BBC and in the disability community said that people, that the AB people needed to change: the world needed to ‘get us’, understand our needs/limitations. I decided that they were right, we needed a BETTER world, a different society and viewpoint than we live in. But I wasn’t going to wait for it, that I, Elizabeth McClung, fuck whether I was disabled or not, would make a change as I could. And one thing people who are disabled need to feel, particularly in some isolating and degenerating illnesses, is not being alone. A postcard for those who are ill, who are disabled, who have impairments of all kinds, and for those who will one day be in the above groupings.

For me it has been three stages. Once I found out that a) I was going to die quickly (diagnosis A) or Diagnosis B) I was going to die quicker, and in ‘horrible ways’. I thought I understood that. HA! The truth is I was sick, like having a bad flu sick but I had 1/10th the energy of before (so about 1/3rd the energy of everyone else). And while I ‘intellectually’ got it, I didn’t get it in my heart. Not in every shadow of my being. It was indeed a very fast learning experience, and I like to learn (the discrimination and being talked down to was total crap but learning changed me, and I appreciated that). Until something changed that couldn’t be changed back. See, it is one thing to HAVE one side with bad circulation and so the ‘red side’ and the ‘white side’ and one side getting weaker all the time because, well, something will come along, something will reverse that, you know, some treatment or something. And sure, when the pain is high or depression comes, there is ‘Why me’ but I can come out of this ‘okay’. Until your eardrum blows, until you have a stroke that bleeds into your brain, until your heart is damaged, until your brain is permanently damaged, until you live through the death of millions of your nerves: so many the spine had to enlarge the channel to try and keep up with all the pain signals. Dropping stuff on my foot was funny, being unable to taste food on my tongue…not funny (the back of my throat still has taste buds, and my nose does too). Having a wound that doesn’t heal for over a year is disturbing….having a medical condition like progressive anemia that goes untreated for over two years, something I thought was ‘important’, you know, having those red blood cells to carry oxygen not replicate, not carry blood, have less and less as no one acts except to stop talking to your face and start talking out the window, or at their shoes…that was less funny.

Then came the honest to goodness, “I could die” moments, or “You did die very briefly” moments, which while realizing that as long as I still come back that is fine, right? Except after a few, the statistics start to click over in my head. And doctors say odd sentences, like regarding the upping doses of painkillers, and when I say, “But you told me that would damage my liver.” They say, “It will last long enough.” So it is intellectually getting through more and more that yeah, dying. And then, I had 1/25th the energy I used to have. I set lines in the sand I would follow, but they fell, they all fell. From: “I will go out twice a week on my own”, “I will shower three times a week”, “I will get dressed and wear make-up every day.” – goes to “I will go out one a week”, “I will get dressed three days a week in non-PJ’s” and then it goes to where a shower means that you are done for the day. And I am not able to put my socks on, not able to put my bra on, not able to put clothes on. And somehow, at some point, so much of what I wanted in life, the extra, the good stuff becomes about keeping to doing those lists every day (list to follow when I am too confused, so I do it anyway), the lists that keep me alive. I fight for that every day. The lists that allow me to shit, and eat and sleep. And then, when a timeline is drawn out, maybe a year, maybe 6 months, it seems like every decisions is made by death, by what can be done before….., well, no one likes to say it, but you have to start saying it. Before I die. “I need to let Linda know about the books before I die.”, “I need to watch that series before I die.”

Then it just becomes about staying alive, because death is like a cloud around you, step on a crack, and you break your own life line, get a cold, get in hospital, lie down too long, forget to drink too long, fall over too hard, anything that tip the balance. And of course, the pain. That’s the hardest part, like wading through snow up to your chest, pushing forward against that hard wind and rain which is always there. And this is when people slowly pull away. Well now I am 200 times weaker, and I scream not daily, but moan hourly from pain, a grim contest of wills, of planning, of determination, that is when I have to reach out over and over again, only to find silence. When a sock weighs 45lbs to me, and typing hurts so bad I cry. But I still send out up to 16 emails a day (that takes 9 hours, like it took me three days to type this). Just grim determination not to give up, and determination to keep trying to have relationships, to BE here, so people can understand. I think often people can’t. I wish they could, To accommodate even the memory problems I have are difficult, to care take for me even 4 hours is extremely difficult but to live it...it is like being flayed and put in a bath of hydrogen peroxide and then being flayed again.

So, yeah, I can’t escape my dying because it is shoved in my face, in ways I will talk about next time. But I have a dream and a determination too – that the disease may have swallowed most of me, that 80% of me is in the beast, but survival just to survival when I know that in the end I will not survive isn’t living. Laughing is living. Joy is living. Something MORE is living. And I am making a DIFFERENT list, one of the things I am going to do, not to survive, but because I want to. Manga that I need, not just to have pain control, but because I WANT to read it, I want to smile. Things I want to do WITH YOU. For example, I want us, all of those with different impairments, illnesses or not, to plan and GO OUT for…..dinner, cafĂ©, starbucks. I want to go out to dinner with all of you, and have us share it here. I will talk about the when and where, and the other things on my list next time. But you get the idea, yes? I am searching for fun.

I will say goodbye soonish (4-50+ weeks). And I don’t think I will change society much. I would rather spend time with friends, spend time living to find those moments of smiling. I started giving gifts and sending postcards, trying to change the world before the recession, and then friends died, and some decided deliberately that they couldn’t take it, couldn’t stand the pain of caring anymore. So they left. I state this: the more we as a society reward or accept those who run from what they fear (the ‘I’ll pray for you’ and out the door, the ‘It just hurts to much to see you like this’ and gone) the more it will continue. And those who ran WILL find out also when the great exodus occurs in their life once the whiff of illness comes from THEM. So making them feeling good about leaving because they feel bad...second hand, does them no favors.

That why, for those who stay, another part of the ‘fun’ list are the gifts, the boxes and boxes I have of gifts which I want to give out, NOW (while it is possible). But they are mostly unique, imported from Japan, Asia, the UK, Europe, and Australia. And I don’t want to give the wrong thing. And I don’t want to be like my grandmother, where for the last five years, her house had tape on the back of everything and siblings went around erasing others name and putting their own. And I am fragile and weak. So Readers and Lurkers, it is time to de-lurk. I want to know you, I want to know you are searching for fun and joy and I will try to aid that. But I can’t send you a wall hanging, a framed art picture, goth fun, a limited edition set of yaoi postcards, a yuri/lesbian towel unless I know you might like it. Unless you want to write, I don’t know to sent a stationery set (I try to send all who write me letters a stationery set – HINT!). How do I know who to give manga to read, and which, or DVD’s to give to watch if I don’t know who you are and what you like? And more importantly if I don’t know that you want to have deliberate laughter and joy too.

There is a sort of plan, which I will explain more with the next post, along with the grim aspects of dying, survival and MORE than that. But it goes like this, gifts are things to make people happy (I don’t like or believe the ‘obligation’ thing), and for everyone who has given me gifts, I try to give back, to show my appreciation, to show as I can, what it meant to me. Sometimes, that is the extra two hours to make another, special postcard to say thank you. I try to give postcards to all who send post (HINT!).

Sadly, a well meant gift can instead remind me of what I have lost: hair, function, the alteration of face and body, not going outside, not being able to….(fill in the blank). I assume people don’t give gifts to make me (or others) sad. So I have changed the wishlist, and will continue to do so. I have on there the things I need to survive. I have on there the things Linda needs to survive, and I have on there things that I need for pain control, for bed days but also things I want to look forward to. Isn’t that the point of wishes? To work for them to come true? So, starting now, for each person who gifts from the wish list, or who gifts a gift certificate from Amazon.co.uk or Amazon.com (to: mpshiel@hotmail.com) I want to work toward giving a gift package. So please a) let them put your name on the, so Linda and Cheryl can put it on a yellow stick it note and put it on the manga, DVD, medicine and b) email or write to let me know what your like, what you do, your hobbies, your interests, do you like queer stationery, yaoi stationery, yuri stationery, goth stationery, what books you like, what amuses you, (and if you have children or young relations that you like to spoil – as I have lots of kids stuff – and YES, Hello Kitty stuff)? That was I can try to match what I have to what would give you joy. A joy exchange.You are giving me something special or helping me work toward something which brings laughter instead of nightmares….I really want to do the same.

I hope that makes sense. I know that many people have been kind over the years. I hope you understood I tried to show my appreciation. For the packages, with my current limitations, my brain issues and my weakness, two hours a week with a careworker is a day’s energy, and I want to be able to sort items to match with names. Building relationships and joy within the limits I havethat means I need the names, if you are on the postcard project, the name is all I need (unless you have moved) and the interest to laugh, to joy. For example, I try now to spend 4 hours letter writing a week (that is half a day), which makes two letters. So another list I am working through (a slow return in writing people who write me, but I am trying to create better than just surviving).

The nightmares are over, and so soon will life, but now we have a time, and I want to make as much of it a place where good dreams happen.

Saturday, April 24, 2010

First US the gated community, now USA the concentration camp? What do White American’s fear so much?

My parents are in Arizona. Being Canadians, they have no passport stamp, indeed, they have no visa, no evidence whatsoever that they are not in the country illegally. But they are white. So they don't have to worry.

Today Arizona passed a law (SB 1070) making it legal and the duty of the police to stop and require proof of citizenship or legal status: that the person is NOT an illegal immigrant. Or…..one presumes they are detained. So if a person goes to buy milk and does not have their green card on them, and the police FEEL they might be illegal, they can and will be detained. And because the law has been made to stop Hispanic illegal immigration, now the abuse recorded is not only DWB crime (Driving while black) which causes you to be pulled over and abused but AWH (Alive while Hispanic).

Because the United States grew apart from the British Empire and did not WANT to be under a government which required papers be shown to officers, or for example the ability to make you house soldiers (that’s in the constitution). So it is not a crime, nor is it a requirement for any US citizen (including myself) to carry proof of citizenship. I am a US citizen, period. I am also a Canadian Citizen (and no requirement to carry proof when I go out wheeling), nor was there a requirement when I lived in the UK.

See old INS (Immigration and Naturalization Service) gave out green cards and visas, and my father worked on immigration and discrimination law and many, many clients. And the best advise was, stand still and shut up. Because unless there is CAUSE to believe the person is an illegal immigrant, there is no law which requires proof. However, the states along the border of Mexico bent this, having local sheriffs and others target places where Hispanics could be detained and provoked into ‘probable cause’. I was in one of those raids on a bus, out of New Orleans, where some ‘good ole boys’ came in and started yelling, “Prove you are an American!” to every person on the bus. It was for show, I was on the bus, I had no proof I was American (I wasn't at that time) BUT I was white. Like every OTHER white person and person who did not move, the sheriff just yelled the question and moved on past me. It was a show. Across from me were three Hispanic men. The Sheriff was near and I wanted desperately to tell them, as I could see the panic rise, for them to ‘Sit still and say nothing.’ However, I KNEW if I did that, I would be detained in a cell that night, because I 'ruined the fun'. Because the same way it might be illegal to arrest a bus driver on the Canadian Border who hadn’t actually entered the US, but was handcuffed and put in a cell for...delaying from entering to put out a cigarette (another joy of an officer out of control - I have seen Canadian ones too, and written about them), seen as a slight to him. This Sherriff was the same type: high on testosterone and a belief in themselves over the law.

One of the hispanic men jumped up and ran for the toilets, one jumped up and was caught. “Yaaaaaahoooooo!” Called out the sherriff who was next to me to his deputies, “Boys we caught us a RUNNER!” and they went outside to bang on the toilet side of the bus and then open it and drag the man out. The terror on the face of the man was FUN for them. This was the GOOD part of the job. Was the stopping of the bus legal. No. There was no ‘probable cause’ that this bus was a smuggle vehicle. Or paperwork to show the driver was paid for illegal smuggling, or anything except the knowledge that illegal immigrants have little money, and take the bus and who is going to have an immigration lawyer on mile 76 of Mississippi highway out of New Orleans? So “Yaaaaaaahooooo!” And a shame I carry for being too much a coward to stand up to a bully. Yeah, I was the face in the crowd THAT time.

Problem is INS, after 9/11 got folded into Homeland Security and renamed BCIS (Bureau of Immigration Services), but under Homeland Security all sorts of odd things could get passed. For example the requirement to carry the green card, which before had not been enforced was enforced IF ASKED BY A BCIS agent. What Arizona has done by signing Senate Bill 1070 which, by fiat decision takes the enforcement of the requirement for green card presentation away from Federal Agents (Homeland security agents) and has made it a STATE crime which requires local police to check of ANYONE. Well not ANYONE, but anyone they believe is residing illegally….by sight. Arizona Governor stated, “Racial Profiling is ILLEGAL, it will not be tolerated in AMERICA, and will not be tolerated in Arizona.”

Um, yeah, except that racial profiling isn’t ‘illegal’ but only prohibited in ‘guidelines’ in certain circumstances by federal agents EXCEPT for a blanket exception for “national security” and “border integrity” cases. Yes, that is illegal immigration, the same agents that Governor Brewer just slapped in the face with SB 1070 can and DO use racial profiling. Though President Bush promised to stop racial profiling, after using it for several years as an ‘effective weapon against terrorism’ for airports, borders and other locations, no federal legislation has passed making it illegal. Indeed 46 states do NOT ban racial profiling based on religious appearance (Muslims), and 35 states do not ban racial profiling of pedestrians. So, walk to the store in Arizona for milk and get in jail…..if you aren’t white. A 2007 report found that already 32 million people in the US had been impacted by racial profiling.

Now I live on the border and cross frequently. There is always profiling. If you are male with facial hair and in your 20’s – expect to wait, and if you have a guitar or a surfboard expect to be searched and wait a LONG time. Because Victoria has been used so often as a dumping ground for people who can live ‘free’ or without a home that it doesn’t want more coming up from the US to live on the streets. However, Cheryl can enter freely, as can any American or green card or Visa holder with simply a driver’s license. It is EASY to get into Canada from the US. Cheryl, a federal employee, however cannot get BACK into the US without a Passport. That’s right, US citizens need a Passport, not to go into a foreign country, but to get back into their own. And I suspect that Mexico has the same policy. What it means is that the US is now the largest ‘gated community’ – an ‘us only’ policy which means if you can’t afford a passport, you are not the type of person that the Government wants visiting Canada. If you can’t PROVE you are ‘one of us’, then you can’t get back IN to your own country. Doesn’t that seem a bit odd?

Canadians entering the USA, as I do regularly, have absolutely no visa, nothing but, “Where are you headed” and “Thank you.” – and away we go. So we have no proof whatsover that we are not coming into the USA to stay and steal your jobs, induce a crime wave and overburden your health care. Indeed, tens of thousands to hundreds of thousands of Brits, Irish, Aussies, Kiwis and Europeans come to work restaurant jobs, to bar tend to work illegally. When I was in the UK, several of the people I worked with had gone to the US, stayed past their visa, worked, since, ‘why not?’ And of course Canadians are one of the top 10 countries of immigrants to the US. Also, with the 'snowbirds' (older Canadians moving from north to south during the winter) one of the largest group which CANNOT show they are in the country legally are senior citizen Canadians (and we know how much THEY jaywalk, and do odd jobs!). Will the Arizona police start targeting those with Canadian accents and a knowledge of the number of Gold Medals Canada won in the Olympics? Or will the police in Arizona use on the streets of Arizona the EXACT same racial profiling that the federal agents maintaining the border of Arizona are using?

Two days before the bill was signed, Governor Brewer asked for Federal Troops to come to the state for security (odd since she is authorizing local troops). Of SB 1070, it is item five which is well, inane, “Allows a law enforcement officer, without a warrant, to arrest a person if the officer has probable cause to believe that the person has committed any public offense that makes the person removable from the U.S.” – the classic official ones are ‘loitering’ or ‘jaywalking’ or ‘related to gang activity’ (since federal law means that no proof is required at all). That's what was used in the South in the 1920's-1960's for a police haul-away.

What that means is now it is down to the police, and the leaders of the police, to visually isolate and determine people who they believe they can remove from the USA (I am guessing they are not looking for Treason but Illegal Immigration). Since the Governor wants the National Guard to stand with rifles at the border of Mexico to ‘defend’ Arizona against ‘trespassing’, it is clear that Hispanics are the primary target. Unless, they REALLY hate the Canadians who visit Mexico while in Arizona and bring back onyx chess sets? So maybe my parents will be shot by the National Guard?

The thing is, for a country which fought for INDIVIDUAL freedom, the individual right, which still pertain, where a person can be free to move about the country, a citizen does not need to produce ‘papers’ in order to simply walk down the street. That is the LAW. But perhaps, soon, not the reality.

Because how does an officer know the ‘good’ from the ‘bad’? Simple. It doesn’t matter. That’s the beauty. The definition in the law of ‘Tresspass’ is “a person is guilty of trespassing if the person is:
a) present on any public or private land in the state and
b) is not carrying his or her alien registration card or has willfully failed to register.”

That means if a person is ALIVE and does not float in the air (the feet touch the ground which will be either public or private land), they can be suspected of ‘tresspass’ and required to present alien registration card. That includes if the person is a US citizen and is not federally required to CARRY proof of citizenship. Yupper, get the wrong officer and you, my US citizen, are going to the pokey….because you can’t prove you aren’t tresspassing as an illegal. Literally guilty until proven innocent. The entire State of Arizona declared itself either a war zone or a detention/concentration camp, where police look over an entire State where the population is guilty until they prove that they are innocent, if they can (and for example, my parents CAN’T!). But I am guessing that since my parents are white, they won’t be stopped. What do you think? I am guessing that US citizen who are white won't be stopped? What do you think. Why not watch the protests and see the racial make-up of the thousands opposing the signing and the dozens (hundreds) approving the signing.

Those very people holding USA flag and cheering for SB 1070, though white, could LEGALLY be stopped on a midnight beer run and yes, detained until they provide proof that they are American Citizens (how many in that crowd do you think don't have Passports? Or might not carry Birth Certificates with them?). Ahh, but I think going into the house of the Head of Police, the Governor and others and throwing them in jail, all LEGALLY, might not be what was intended for SB 1070. And indeed, might lose you your job....for doing the law (hey, you felt in your gut that they were committing and act which might get them deported, and they were on public or private property). If you think this is extreme, already police go into houses of various ethnicities in the early morning, no, not for terrorism, but for immigration. And no, not whites.

But since the ‘enemy is everywhere’, what is the next State going to do? Perhaps a state law requiring tattoos, or chips inserted in all residents? All to know the ‘good’ from the ‘bad’. You think I jest? Section 12 of bill SB 1070 already allows to cover costs for lawsuits or actions against officers due to their actions in this manner. It means they can SCREW UP and they don't have to pay the cost.

Why oh why Arizona do you want to be in a concentration camp so much? What do you fear SO much? The argument is, “It will make everything better.” Better health care, safer communities, better schools, crushing this one minority (you know, the old 'stab in the back' idea about a group) will make it a better place for everyone. – ahhhhhhhh, will the trains run on time?

Wednesday, April 21, 2010

Doing postcards: the process, Bunny Drop and Kit says 'love never decays'

This week Cheryl, Linda and I did 74 postcards. Postcarding is our Quilting. I realized that I have never really shown the process of ‘doing postcards’ so people might think lots of things from me just writing ‘heya’ on a postcard to me over some Gutenburg style press.

We all get into the study and do the ‘matching’, which is the longest part of the process and takes 4-12 hours. That is where we go through, I usually go through the hundreds of postcards looking for the right one. And if there is a family of six, that means not just six individual postcards picked for each person, but that no stamps or stickers the same can be put on two family members postcard (because who wants to get a postcard EXACTLY like your brother/sister – makes you feel ‘not special’ – and that is the exact opposite of what we try to do). After the matching we do the stamping. That means we clear the two hospital tables, and fill them with stamps and ink, and then bring the stool next to my power chair. The stool is because since I can’t feel my hands, I need a steady flat surface to watch my hands or arms push on. Sometimes, I use my foreheard, or my chin to try and make sure the image comes out clearly. That is because if I have too many ‘white spots’ on the left, it means my left/weak side isn’t pushing with the arm, I am too exhausted, so I used what I have. Or we ask Linda to step on it.

Some people are very pristine with stamps and ink. Since we are doing a stack each and working sometimes though the night, we are not pristine, as you can see here. Also you can see, the unmounted stamps are down on a hospital tray, on acrylic and we call out what we want.

First, as we had 7 or 8 new stamps that week (we have invested in getting new stamps, now our problem is in getting more ink!), we had to try them out with the various types of ink and paper, so on gloss, is the distressed ink too much, does plum make it ‘pop’ or should that be purple? We do five to ten of each stamp to get an idea and then get going on the postcards. For a family, one person does the whole family at the same time, to make sure there are unique stamps on each postcard.

That evening, there were issues as I had low blood pressure and wasn’t responding to heart or other medicine and with heart erratics kept passing out. That just happens. Every weekend is different

People wonder, “How can you get that many postcards done?” and the answer is sort of like, “How do you run a marathon?” I don’t, I run one step and then I run another and another. Yeah, I feel crap, but so does Cheryl sometimes, it is just get on with getting on, whether that is blowing blood out of your nose or just waking up and trying to do another stamp until you start feeling better.

The dialogue is like this

Beth: “What does the Rabbit go best in?”

Cheryl: “Denim Blue”

Beth, “No, it’s a slick card, feel that.”

Cheryl: “Just the royal blue then.”

Linda: “Can you pass me the black and that flower from last time, the one I do green.”
Beth, “Wha? The flower you do green? What does that mean? That makes no sense.”

Cheryl: “Here it is,” (passes a stamp of a flower over), “it was under the dancing skeleton.”

Beth turns on Cheryl, “Flower in green and you KNOW what that means?”

Cheryl shrugs.

Beth “Oh, did you say dancing skeleton? I am doing a goth card, I can use that!”


Cheryl: “Is she pressing that big Lion still”

Linda: “No, I think she’s passed out.”

“Tilt her back”

Linda pushed my head back. After 30 second, “Come on Beth, breathe, you gotta breathe,” 20 more seconds, “come on Beth, breathe.”

I’ve woken up but I can’t get my lungs to expand, my throat is expanding, as I try to open my mouth and gulp air in but I am too tired.

Linda pulls me upright and lifts my torso free, and I gasp air and breath for a minute.

Beth, “So was I doing the windsurfer who lives in Oklahoma?”

Linda: “Why don’t we call it a night?”

Beth: “Why, I only have three…er….six….a couple to go.”

Linda: “And…..they will still be here tomorrow.”

Beth whines, “Nooooooo!”

Linda: “I think you not breathing is a bad sign.”

Beth: “But I’m breathing NOW!?”

That’s pretty much a typical night except a lot more, ‘Look at this’ when we do a good stamp and trying out difference colours and ‘how did you get that?” and then trying to make the same image. Music plays softly in the background and the postcards go up flat atop the books to dry. And we have a stack of 25 each and if one person is taking more time (LINDA) then we take a couple each from her. Some do better with one stamp than other. It is not a bad way to pass an evening (except for Linda who is saying, "Why do 'I' have to step on all of them?" And we go, "Because you are the only one who can feel her feet!" Or the time she stamped a lion and got a giant white spot in the face....and managed to match it perfectly and not even we could tell where she had laid it down a second time - on a 5 inch by 5 inch stamp!

The next morning, after 3 to 6 hours of sleep, I am in the study with stickers and the black ink government pens which won’t run. And the table has the stickers on it, so I can put stickers on the postcards, some weeks are sticker heavy and we sticker each card first and some I do it all afterward, and then I write them all. I am covered with this fleecy blanket of Kit the Kat, skelanimals, that Linda found for me – you know, because Love never Decays. Then, every so often Linda or Cheryl, who are packaging the Amazon sales, come in to the study where I am writing and stickering and collect the postcards for photos or for putting the names down for how many where sent and who they were sent to. And they are put into bags (one for Canadian Stamps, one for US stamps) and then all are posted on Sunday.

That’s the stamping process, it starts Friday and can take the whole weekend, but I try not to do that, though it does seem to take up part of Saturday evening every week. We have to talk to try and remember what stamps we did for the person before, what postcards we sent, what they liked, if they emailed and what they said. Some stamps we can only do by size, if the postcard is large enough or if there is time. For example this stamp, takes about five minutes more to do. It is really cool but it takes a while.

And after all this banter and back and forth and talking and passing around stamps and debating and saying, “Well this looks good so far…….are you going to risk another stamp?” We end up with this, the finished postcard, ready for writing (and stickers).
So that is the postcard project process, at least the ink to the paper process. Before I go, I would really like to recommend the manga book Bunny Drop. Much like Transparent is a good series to talk about chronic invisible illness’ and the discrimination and caregiver issues around that, Bunny Drop is a good manga which speaks and shows in art caregiving. Because the basic aspect is that no one really knows what they are getting into with caregiving, you just end up making do as best as you can, getting help where you can and as you can. It also gives a viewpoint of someone who is less able to communicate, who has perhaps diminished capacity, or sundowners or dementia. Linda, Cheryl and I among many others recommend it. If you have care or caregive, I really recommend it, particularly those who balance caregiving with a career. It is the sudden onset of caregiving needs which makes this book particularly relevant to having an illness, having a sudden need to caregive, finding out there are all these systems but a) how does anyone know about all of it and get it all organized, and b) who has time while holding down a full time job?

The manga brings up the worry and frustration of trying to think of everything and failing, as we do, being human and all. Even though the people we take care of, from children to seniors are often the most vulnerable. And I learned recently how vulnerable and weak I have become. It is good for me too see both sides, and realize how hard care giving really is. Being ill doesn’t have respite, and I can’t say, “That’s it, I’m crap at this illness, I quit.” But care giving is the gift which only love really gives, as it isn’t easy, and pushes you as a person. I’m glad to see that shown, but also the vulnerability of the one being cared, and the cost to them. As we say, “Elizabeth pays. If Beacon workers forget, if Doctors screw up, if Linda forgets, in the end, Elizabeth pays.” That is the nature of a high care need illness.

Almost time to start preparing for more postcards!

Sunday, April 18, 2010

The street where I live and spring flowers, 'Danger Area' on the Beach, hummingbird matings and my fine ass

I want to show you the street where I live. And why it is worth hanging around despite the noise. Because it is a nice area and within wheeling distance to a very nice and old park and to the beach/waterfront. Because when I go to wheel down to get a DVD (of the very terrifying and lovely Pandorum) from the DVD rental place, THIS is the sidewalk I wheel down.It is more than just nice and even, so no sloping to the left or right, but also a floral burst of outdoors.

And I usually see squirrels every trip, sometimes crows follow me, I have seen an owl on this trip down this street and when I return, I see this robin, looking very regal for someone looking for worms (the two crows were on the other side of me, the female picking branches for the nest and the male guarding her – sweet ‘twue love’ crow style). And I guess robins like to preen since THIS is the view from the van (we went to pick up Cheryl from the Coho) of the fence directly in front of me.Squirrels often use this fence as a highway. I like that we live in an urban/secret rural beltway.

At then end of the block of the Sakura Blossom tunnel, which has many zero entry apartment buildings with seniors living there, stands this older, 1940’s building, which has a fair sized bamboo forest off on the side. Linda said, “That place NEVER looks that good.” Well, in spring, and when the sun is out, a lot of things look good. I remember that from the first spring in Cardiff – grey, wet, nasty tipy flagstones which soaked you like landmines, and row houses that looked like someone crying frozen in architecture. But then the spring sun came out and it look really quite nice. I asked Linda ‘Wow, why don’t we move to THIS area?” coming off the round-a-bout

She replied dryly, “This is OUR street, we are at the other end...in sunlight, you just haven’t seen it in sunlight for six months.”


Where we live now however is very nice, and we looked around at many different apartments to try and find the right place. Where we live now was the best we found at the time (since we were living in a ex-crack dealers apartment beneath someone who liked to try and listen to us having sex – we REALLY wanted to move). So, another block down and there is the flower store. I showed you the purple Mumms we got, but I had wanted the blue (Linda wanted the purple, and I wanted Linda to be happy). Here are the large blue ones ($7.99), the smaller bundle for $4.99 was already gone, alas.

We are fortunate to be within a block of a shop that sells a great variety of flowers from these gorgeous lilies,to mumms and carnations and more, all in amazing colours, ranging from $2-$12. So though I may be trapped inside and fearing the noise and the heat, without a view of outside, I have life and colour, like these pin cushion (or the bird of paradise behind). And of course, what is spring without a sunflower?
Wheeling on a half block are more houses and apartments. Many of the apartments have cement pot in front where gardens are kept, or are landscaped,
as the quality of gardening is quite high here. A lot of old heritage houses, built on bedrock on one side of the street (close to the old Cathedral on the hill), as you can see with these houses, sporting the lovely purple bushes (name?), but not exactly wheelchair accessible. On this side of the street are a mix of post war houses and apartment buildings from the 1960’s to 1980’s. Here is the fence of a side street showing even when things are ‘let to go’ it comes out nice, in springtime.
Two blocks along is one of the apartment buildings we desired to get into, it looks like it was made for people living in Hollywood during the 50’s (does it come with a LONG mother of pearl cig holder? Yes, I wanted to vamp it!). The whole area is curvy with multiple gardens, these balconies and as you see, ramps for the inhabitants. I think it is more expensive than where we are now, but I imagine some aging film star in there saying, “Oh darling, you remind me so much of a young Catherine Kelly, who was all the ‘wow’ amoung us B-list film stars and sure to launch into the A films, and who knows maybe star next to Cary Grant…” wink wink, “that would have been dreamboat days! Come by sometime and I can screen my films for you, like “A Fallen Tomcat” or “The Smitherson Sister”"

It was places like this in L.A. where older women with way too much jewelry were "the third daughter of the Count, you know, and would have been doing the Royal Circuit if not for The War, her country just didn’t exist after that.”

Sorry, odd memories as the people who lived in Pasadena between Lake Street and MIT were an interesting mix (including Ray Bradbury). Back in Victoria, here is a back garden from an apartment compledx we wheeled by.
Crossing the street, I took a picture of this heritage house turned either boarding house or bed and breakfast, I think it is a bit of both. I like it because it has not only an atrium but also an roof deck which is used as an observatory for star watching at night. This is the street where I live. One of them.

After wheeling home we went to pick up Cheryl from the Coho (here it is heading back to Port Angelesthat day it was delayed since a semi-truck backed OVER a car, not a good day for the car), and since I was in the van, and the sun was out, I suggested we go to the waterfront. We parked across from the duck pond, and used a trail I had not used in a long time. I liked this section of the waterfront as it gets pounded hard by winter storms and erodes and changes the nature of the park often. Sadly none of the “Do not walk during winter” signs were up with a pictogram of a little man falling down a cliff to his death under the word, “Erosion.” I did find instead an actual slope going down to the beach! Hooray! This meant I could go to the beach for the first time since being in a wheelchair.

Linda assured me that she would help me back up. After getting down (with help), I wanted her assurance again, because that was going to be an ‘inch at a time’ climb for me. And to my joy, we found a ‘danger zone’ with lots of XXXX on where people were not supposed to walk, stand or stop.You can see the danger XXXX under my wheelchair!

Coming back Cheryl went down and said, “My God, the whole thing is eroded underneath, you were sitting on nothing!”

I was all excited, “Quick, take a picture showing me sitting on nothing, that would be so cool!” They took the picture. Then Linda and Cheryl reminisced about all the signs like ‘Do not continue if you have lung or heart issues’ in Hawaii and other places I get my picture taken next to or just they take the picture as you see me heading off PAST the sign on my oxygen (SEE, the logic was that since I HAD a prosthetic lung, technically, I didn’t HAVE a problem anymore….except it turned out later that day, I did.). I am wearing these jeans because though skinny, Linda helped me into them saying that they ‘made my ass look sexy’ – how she sees that in the chair, I know not, but there you go, the slimming, ass sexy jeans and danger girl.

On the way down to the beach we saw a songbird robin, which had a beautiful singing voice. All the birds were in mating patterns.

The good news was that I got to go down to the beach and wheeled to the end of the pathway, I did not however try to balance my back wheels and make my way through the driftwood. That is for another day. On the way back, I was taking pictures of the driftwood when I saw something. It was a seal who was popping its head up for water, and must have found something good beneath the kelp bed to eat. Here is the brief shot of the Seal head and seal ass I captured on film.
We did make it up to the top of the slope. Huzzah. And just in time to see this humming bird. It was resting between doing very, very fast loops for mating attraction. Or so says Cheryl. It would hang in the sky, and then faster than the eye could see, it would swoop down near the ground in a fast loop, up again, and then looping again. I actually managed to catch it as it was heading down to the ground. The mating dance worked because as we watched, it ended up at the top of one loop (we would lose sight of it near the ground and all the bushes) with another hummingbird a foot behind. They headed off doing a set of helix type counter swoops around each other – ahh to be a hummingbird in love.

Across from us, while the hummingbird was swooping was this songbird (unknown?) in the bushes. One of the things I like about Victoria, and where I live in Victoria, I saw so many flowers, and a host of different animals, from marine life to various birds all in the space of an hour or two.

After this I was slurring very badly, and Linda took me back to the car. We drove two blocks up to the same Drive In my parents generation went to, the Beacon Hill Drive Inn, which uses lush cream, ice cream, and I had a hot butterscotch sundae before heading home for my nap. I might not get out often but I am glad when I do.

FYI, Linda has added a few medical items to the wishlist, including some of my camelbak drink holders, since one temp careworker decided the sip tube WAS going to come out, regardless if it didn’t after using all her force to pull it, push it bend it and eventually break it, in order to wash it. “I’m done!” Sigh. Also some digestive breakdown for my intestines and other fun but necessary items, like Batteries for the monitor where Linda can hear me, when I am too weak to move or call her.

Next time, it is us doing the 74 postcards I sent out today (74 – woot!).