Thursday, September 30, 2010

My blood test: got an immediate call to ‘discuss with doctor’

I went in for the blood test last Wednesday. The doctor called Friday saying I needed to come in, she wanted to talk to me. She didn’t work again until today, Wednesday.

I had that seed of stone in my chest, and every day it grew, pushing against my breathing, weighing me down.

In some way, my life was going to change: had already changed, I just didn’t know how yet. The nightmares started a night later.

Sunday my computer became inoperable, a Trojan which erupted into endless virus’, cutting me off from restore points. This took my mind off impending medical news, by causing my mind to spin so fast that sounds of metal shearing against metal could be heard if you stood close enough. Without the computer, I can’t blog, I have no voice which can reach the outside world. Worse of all, the computer was thwarting my will. If there was a drop of divine blood in me, that would have been one ‘smote’ computer.

I think we are all glad that I cannot bring the hammer of thunder at will (No, I am still coming after you Jon Hammond, for no one bullies Linda (tsk, tsk, tsk finger waggle): oh no you didn’t!)
I gave up most of Monday in order to switch my day (getting up in the AM) so I could go rolling outside on Tuesday. It was sunny. While rolling I was thinking of ‘rules of three’ and trying to figure out what else had gone wrong to complete the ‘three’. While I had plenty of bad things happen including a strong bout of dementia, in the last few days, few were large enough to be called ‘BAD’ (when moderate dementia putting my life into ‘frappe’ in the blender isn’t “Bad”, that shows how life is viewed: I am not trying for the Booker Award anymore, I am trying for a day without a nose bleed, and to make it to boxing on Thursday.)

I could not help the thoughts, which ran round like pet hamsters on their wheel, “Is it Lymphoma? Another blood disease? With the anemia an elevated white cell count, that could show?” “Or will they have to radiate the thyroid?”

I can’t tell who I hate more: those outside the Ghetto of Loss, who know not of how quickly things can be lost, or worse, hanging there forever until that phone call comes, or is me, who cannot stop the quick jagged breath, fighting the constricting of my throat, that fear?

Tuesday night…wasn’t. I was up night due to cramping. When I finally got to sleep I had Linda promise to wake me in a couple hours to get up for the doctor. One side was the immovable effects of a body (if they had just given me that android body transplant….), the other side was an act of will. Another week of not knowing? A call from the hospital instead of the doctor due to a delay? No thanks.

The sun was good yesterday and today, it felt like the warmth spring gets right before it becomes summer. Today everyone was mowing lawns, after a week of rain the warm sun had made grass happy. Squirrels were out in force playing the ‘lets dig up this and check if it is still here…yup…now let’s bury it two inches over.” Game.

After wheeling to the doctor’s office, I was told, “okay, I’ve got you on the list, now just come back in 90 minutes.”

Blech. Wheel back, drink, rinse and repeat.

The news was grey: neither horrid or great. While nothing in my body seemed to be operating optimally, B12, D deficiencies were of the greatest concern. We knew this from the hospital tests, however the hospital had no suggestions. The doctor explained some of the functions that D affects. My kidney is operating ‘okay enough’ (is that how you want your major organs described?), but the water I was drinking was straining it. The Doctor had returned from a conference and that stuff about drink 8 glasses of water a day: Bogus. The two things that make no difference on your bowels are: drinking lots of water and exercise. The solution to constipation: whatever works!

The doctor was feeling bad thinking of all the people she had advised following the belief that laxatives ‘leave the intestines and bowel weak in the muscles’ and was wrong. So, no longer will I be drinking a minimum of 5 liters of water a day. Anemia, yes; dying thyroid, yes but nothing that wasn’t progressing normally.

I felt oddly cheated: the 90 minutes, the days of waiting, all because of significant D and B-12 deficiencies? I was glad I didn’t have a marrow or blood cancer, and now, after it all, with an adjustment to my drinking and sublingual B-12, and vitamins, life goes on.

AND I got my computer back.
Sometimes it takes work, stress and a lot of effort to get back to ‘routine’.

Oh, on Sunday, we sent out a total of 205 postcards for the month (click on the picture to see the postcards in detail).

Saturday, September 25, 2010

Dark Road: forgiving and unforgiving

Once you have truly landed in it, whether you were the person who said, “I am sure we can make it through, the water won’t flood the engine” (I’m looking at you Linda!), or the person who drove, both are in the drink now.
I promised myself when I returned to North America, to Canada that I would not fall into the trap of obsessing over ‘who did’ or ‘who said’ or ‘not my fault.’ I mean, we are the country which held two inquiries, over multiple years and disbanded organizations for (take your pick): blood bank failures in buying CDC condemned plasma, an elite unit going out of control in Somalia, or the bloody helicopters. Canada’s military helicopters have been bought (not yet delivered) by THREE different Prime Ministers, which are then investigated by the next Prime Minister, the helicopter order cancelled, a new tender offer, the company that wins is…..the same one as before. Now 20 years later, still no helicopters for the military but lots of finger pointing (and three orders paid out). That is what Canada is good at, bringing everything to an absolute halt while it is determined, “Who can be blamed.”

I failed my promise and have reduced myself to 'reaction'.

We are in a ditch, a dark road, the sun is going down, we only have each other and instead of coming together as the only support, we are busy playing, “you told me….”, “Well you said…..”

Whether you are the person who is ill, or whether you are the caregiver, either way, it is a long dark road. And, I think, too often, each side envies what they see as the clarity on the other side. I know I do. ‘If only I was healthy and a caregiver….’ Yeah, because I would have to keep up with the progression of the disease on someone I love whether I was ready or not. I would have to deal with their grief, their loss, their lashing out, and look beyond it to see the fear inside them.

The times we need to cling the most to each other, these are the times when we feel alone. And nothing like a night which will not end in front of you for making a person feel alone.
It hurts when people seem so able to be there to emotionally support Linda and so unable to 'get' where I am. Yet it is only natural that people would be able to identify with someone who has or is experiencing loss. Much, much harder to identify, or know what to do, when someone has an experience totally outside us. Bad Cripple has not one but two significant bed sores, dead flesh, which will cost huge amounts and will keep him immobile until Xmas at the earliest. He needs support: emotional, financial, practical. And it is my own helplessness to help him that silences me.

I may end up knowing that experience, a bed sore, but I will never know the emotional, financial and other pressures of being a partner and caregiver longterm. Never. Nor can Linda understand inside the skin, of what makes up my day, or week. If only I could hear the concern she voices when she tells me to ‘drink up’ because she is reminded of some time when dehydration made me so, so ill. If only she could slow down enough to realize what unloading worries does to a person who had moderate dementia and short term memory. Does she know how much I care about her? Does she know how trying to create ANY routine for us to live in is like running laps, endlessly: a grit the teeth and focus or fall down trying effort? And that it always gets harder?

I can hold you, but I can’t stop thinking about the car stuck in the dark road, my body stuck in the dark road. Perhaps in the days she makes the routine easy, without thought, warm and caring are the days she works twice as hard, doing it all and absorbing it all. Perhaps we are both trying so hard to be ‘that’ person for each other so that when it fails, I feel I fail Linda and I fail myself.

Wednesday, September 22, 2010

Blood, blood, blood.....and drugs.

I gave blood, so now I am stoned. I took all these drugs Linda gave me so they could get the needle in me. I do not like needles. I have a phobia. I think the drugs were supposed to relax me. They didn’t relax me for the first eight screams, but maybe the four after that were a tad less full of gusty terror. Before I was very chatty, and kept asking the new interns what size they were, "OMG! You are total a zero or a two, aren't you?" Now that I think about it, just saying to a girl suddenly, "You are a total zero" might make them think you aren't asking the size of tops they wear.

Once I was in the room and lying down, I started a video, and was supposed to be relaxing. But instead I showed the nurse who was waiting for me to chill a video on the PSP of an anime guy who was rubbing his nipples and naked, but wearing elephant trunk underwear. "Look, ELEPHANT!"

Linda had her head hanging down and was muttering, "Oh God, every time, new ways to humiliate me."

The nurse, who had taken my blood before, just said, 'Yeah, THAT might distract you, so why don't YOU look at it instead of showing it to me.' I think she was starting to regret having that student intern in with her in order to watch how to deal with 'special' clients.

Here is the video I was showing her, well, between 15 seconds in and 30 seconds in - it does get BETTER after that, or at least less full of anime guys licking each other (really good song, and video).


Naked men, elephant trunk underwear, and 'boom boom boom, together in my room', along with a lot of screaming and it was done!

Once the needle came out, I did get VERY sleepy. Those drugs kicking in. And I kept mumbling, “I want the shiny band-aide, shiny!” Because there are ones they keep for children that are cool, with holographic sparkle stars. I could claim that the drugs lowered my inhibition to being childish but we all know that would be a lie, I just like cool shiny band-aids, or Hello Kitty ones.

So I am off to sleep now, back up again later.
I leave you with a pretty/creepy picture of the flowers Linda and I bought together. I am not sure what kind they are, but they look BLUE, right? I sometimes get colours mixed up, which could make driving difficult if they ever let me have a license again.

Wow, giving blood really takes it out of you. (Drum roll... badum*bum!)

Monday, September 20, 2010

'Talk like a Mountie Day', Pirate booty, and my morning scream

Shiver me timbers!I be missing ‘Talk like a Pirate Day’ already: so SO many uses of the word ‘booty’. Onward to ‘Speak like a Canadian Mountie Day’ where you have to say, ‘Please’, ‘Thank you’, ‘May I assist you?’, approach anyone who appears to be emotionally of physically troubled to assist. Plus you get to say, ‘Do you realize the speed you were going? Try to remember that there are deer out here as well.” And “Cannabis? Personal Use? Please wait until you get home to have that, miss. Thank you. Please take care while driving and avoid littering.”

Linda is out cycling to return books to the library, pick up pocky and get flowers both gay and glamorous. Her mission solves my distress upon realization that we had not enough ‘bloom’ around the house (or pocky), so I pitched in for flowers. Wet stuff now falling from the sky (Linda calls it 'bane' or 'rain', whichever), an indication the seasons are changing. However, the construction and noise continues. A care worker from many, many months ago, E., returned today with, ‘Wha? They are STILL working?”

I woke this day with a scream, as my calf went into full locked spasm. Don’t you just hate when that happens?

The spasm was severe enough to rip the muscle and the bleeding under the skin could be seen a minute or two after Linda massaged it down. As E., the care work who had returned looked down in concern I sheepishly smiled and said, “Hi, I guess that was sort of ‘welcome back’”.

A short post to let you know I am trying to blog as regularly as I can (even daily as possible), so please drop on by. Sarcasm, wit and odd word usage to be expected. Don’t miss the blog post below on Hatley castle (plus Victoria, BC 1900’s brand opium and me molesting the wildfowl), with 24+ pictures and three weeks of work.

Now I MUST bid adieu as I return to my research on ‘The disabled female: masturbation and orgasms’ Disability rights, indeed!

Sunday, September 19, 2010

Return to Scheduled Programming: Hatley Castle & doing the 'Naughty' with the Geese

Avast mateys! And fare thee well to ‘Talk Like a Pirate Day’. I been a-wenching, appraising the fair and buxom, which be staring a lot at me’ Pirate Queen Linda.

Being out of it from mid-Friday to late Saturday, I missed most of the weekend, but wanted to talk about my visit to Royal Roads a bit ago (meaning, I have no idea, but it is the last place I went).

Royal Roads is not only famous for the filming of MANY films, including being the Academy in X-men, but has a famous and slightly strange history of one of the great powers in the British Empire and coal for the ships.

Here in British Columbia the richest man and family was the Dunsmier’s, the coal Baron’s of the province and providers of the coal for ships for the entire west coast, one of the critical coal stops and an important position for the British Empire. We went to visit Hatley Castle, of Royal Roads, which was built by James Dunsmier the son of Robert Dunsmier (who built Craigdarroch Castle in Downtown Victoria but died a year before the 1890 completion).
When Robert died, James, one of the two brothers, got the coal company and railway to go with it (now the E&N railway, protested for being completely wheelchair inaccessable!). Due to tragic family dysfunction, Craigdarroch Castle, after 10 years of construction, with 39 rooms and 28 acres of gardens was occupied solely by Jame’s mother, Roberts’ widow. And at her death in 1908 James simply auctioned of the contents of the Castle (Which still has the largest and finest collection of in-situ stained glass in all of Canada). This included the commissioned nine muses lamps but thankfully not the exotic paneling (picture credit Robert Wong). Several decades have been spent trying to restore the castle, only one of the lamps have been found.

James decided to move across the water from town and build not just a castle but a manor, with full grounds and a wall surrounding it ($75,000 just for the wall). Even though he used a completely different architect, the whole, ‘I’ve got a bigger tower than you do!’ makes it seem more than a bit of ‘I’ll show you’ to the dead father Robert. The Hatley Castle was complete in 1908, the same year James sold his Parents castle (odd similarities regarding the two). Everything with Hatley castle had a ‘F-you!’ aspect to it. For example, the gardens, particularly the Conservatory, which cost as much as building the entire wall around the dozens of acres and 10 km of road, was filled with white orchids from India along with a Banana Tree (in a Pacific Northwest Rainforest?). No need for the Chinatown of Victoria, as The Hatley estate had its own on-estate Chinatown to house the 120 Chinese gardeners. The “Castle”, with teak floors and oak and rosewood paneling overlooked the dock and water where his yacht the “Dolaura” waited.
The ‘Dolaura’ was 210 feet long (some yacht) and cost $200,00, having mahogany paneled drawing rooms with a huge fireplace, a dining room to seat 24 and a private suite which had sitting room, plus three other rooms including a tiled bathroom with venetian marble and silver bath fittings. This all on a yacht near some of the roughest seas, and ship wrecked coasts.

The Castle was James’ “I’m taking my toys and going home” pout after he was elected not only to parliament but four years later became Premier of BC. That was short lived being forced to step down less than 2 years later due to charges of conflict of interest attack over railroad legislation (he owned one). He became the Lieutenant-Governor three years later, in 1906, but refused to sign Royal Consent over an Anti-Oriental Bill (the Lieutenant-Governor is the Queen’s Representative and because Canada is STILL a commonwealth, the representative can take power away from the parliament at will. So if the Queen’s representative says no, it does not become law – he did this.). Due to his massive hiring of Japanese labor for his mines caused another outcry and pushed him into stepping down as Lieutenant Governor in 1909. Forced to step down from the two highest offices in the province: Premier of the Province, and then as Lieutenant Governor within 10 years, he dealt with it as boys sometimes do. He sold his entire railway and coal holdings for $11,000,000 and retired to ‘The Castle’ to fish, hunt and play with ‘the boys’ (seriously, that’s what the bio’s say).
He died in 1920, his daughter and wife in 1937 leaving Hatley Castle in caretaking. The Government bought it for just $75,000 and turned it into a Military Academy, for junior officers (so it was a sort of X-men academy), which it remained until 1995, when it, under lease to the Federal Government became Royal Roads University. It is a low residency university and ‘The Castle’ as well as much of the Gardens and other parts are completely wheelchair inaccessible. Welcome to Canada!!! No Disability legislation here, or MBA’s for wheelies.

Seriously, as attractions go, much less as a ‘university’ (err….), this is one of the worst inaccessible examples, particularly as it is regularly used for weddings, but the gardens, including the parts USED for weddings are also completely inaccessible, along with Hatley Castle itself.

The disabled parking used to be right next to the castle (but they were turned around and ‘staff parking’ was painted on the back of the signs). But now, it is at the bottom of the long hill, and out of about 400-500 parking spots there are a total of…….one parking spot. Luckily it is close to the ‘accessible toilet’ of Harley Toilet. Having to come in through the ‘servant entrance’ is bad, having to go to the loo in the middle of the parking lot, the ONLY toilet in the parking lot, is well, puts an emphasis that though the Federal Government might have disability equality in the Human Rights Act, that doesn’t mean they won’t treat you as a second class citizen…openly. (me, bitter about having to wheel into a porta-toilet in the middle of a parking lot to pee? Naw!)

But enough with that, on to the gardens (the Castle, being inaccessible, was not an attraction). While Linda and Cheryl walked up the three steps to the winding walkway up the castle, I had to follow the car traffic out and then up the hill to the service road. Thank God I was in Indy! After a bit of this I put indy into high speed tank mode an ‘broke through’ onto the grass.

It turns out that what appears to be flat is actually large clumps of grass, often in ridges and sometimes covering things, (septic tanks?), which mean that there was a lot of high speed weaving around and screaming, as Cheryl and Linda stopped and stared. Then of course, Linda starting taking pictures: after all, I might tip over! (THIS is my caregiver?)

Hatley Castle and grounds really go for the ‘we got lots of Ivy, and it’s really old’ that the Empress goes for as well. In this case, some trimming would help as the ivy was completely covering several windows but it does make for a pretty picture.

Here is the upper garden (white orchids) and a lower lawn, which was probably good for croquet (it is actually played quite a bit around here). Now it is used for weddings.

Here is the lower lily pond, which is as far as I can get to the Castle, so I am doing my ‘Tiger’ pose (actually I am more trim now, due to boxing plus being really ill and not eating! Vain much?).

While Linda and Cheryl climbed up, it was back to the road for me and up to meet them around the front of the Castle. I really don’t know why they don’t have a ramp at the corner of the three steps to get in, but they don’t. It does some nice front gardens and oozes, “I have oodles of money and I am going to just sit here in it, when I am not off shooting things.” James did have a daughter but she died the same year as her mother, so the money and effort poured into a property (which had its own CHINATOWN, sorry, I just couldn't get over that - they pulled it down in WWII) which was never given the love of a family home.

On a personal note, my grandfather, while in the military in WWII, used to have to clear and clean the acres of the wall surrounding the estate – my grandfather wasn’t officer material, so he cleaned for them, but he sure could scrounge: I grew up rowing the rowboat wear a giant bag in front and back label ‘material of the Canadian Naval Service’ which was supposed to be a ‘life-preserver’ but I was terrified would sink like cement. Seeing Royal Navy stamps on tools, supplies, lamps and everything else around his place was standard. In fact, he told me that he started his house painting business by stealing two extension ladders from the navy with a pal. At East Sooke he still had (and used) one of those ladders. Go Navy!

So here we are, arrived at Hatley Castle! Linda fussed around with the Camera and the 'Is the auto flashing' for so long we have a previous picture of us smiling and Linda hauling ASS, too late. This one is the picture she would prefer to have published though.

We were off to the gardens, while much of it was inaccessible (literally one step), it gave me opportunity to take pictures. The upper garden building used to be covered in 1910, and there was also a greenhouse, this upper garden building cost as much as building the km’s of wall around the dozens of acres of his estate. But it is very fetching. Much of it now is a rose garden but you can see how it is adjacent to the Castle where those flowers were placed daily in the Castle.

Here is Linda in one of the sitting and viewing areas within the upper garden. While Linda and Cheryl took off to the gardens, I was playing out with the super macro function of my camera on the flowers. Meanwhile Linda, out in the rose and other upper gards was taking pictures of the scores of bee pollinating and nectar gathering.
Now what is an over the top Castle and Garden structure without some peacocks to wander through them? This being Victoria, that is pretty much a ‘must’, a ‘Fashion Do!’ along with swans if you have a pond. The lower lawns were full of Canada geese. But lucky for us, it wasn’t just a Peacock, but a baby Peacock as well. Here is the smaller female (the male is the one with plumage) with her baby. I had never seen a baby peacock before. So that was nice. Also this ‘family picture’ (my fav) which I am giving to the family to send out for this years’ Christmas Card.

After a last picture, we were off to the ground which had all sorts of exotic names like ‘Desert Garden’ and ‘Japanese Garden’ (which this picture is supposed to be, not very Japanese in my experience). There were lots of other signs but not a lot of upkeep, or accessibility, as here is just one example of the inclines, and those were often loose sand, gravel and had to be done in ‘tank gear’.

We did find another mother guarding her peacock peachick (I had to look up what a baby peacock was called), though in this photo with two moms and babies is ‘muster’ or ‘ostentation’ (group of peacocks) of peahens and peachicks. Cute, but the names do sound like something I got as take out recently, or was that chickpea?

By this time I was tired of the inaccessible nature of the place so I decided to take on the little ornamental bridge (since if other people can walk over it why not wheel over it?). After a few runs at it, I got up the steep incline. It was a nice stream, but I couldn’t get DOWN until I took up my foot plate and reclined the chair as much as I could in order to stay in it. With, “Oh God, oh, Oh, OH MY GOD!!!!!!!……ahhhhhh, that’s wasn’t so hard.” I descended. Linda and Cheryl were laughing, but since I could not fathom why, I merely ignored them and rolled on with grace and deportment.

Time to go, since I was getting slurry. Which is when Linda got ‘The IDEA’. See, it is not always me who instigates these things. Though I admit I wandered with INDY over to the Canada Geese with camera at the ready to see if they would take flight, perchance. But it was Linda who was urging me ‘put the speed up’, I stared at her. She pointed to the geese and made a shooing motion, ‘make a run at them!’

Well, as it happened, I had recently been wondering why adults give up the joys of running at flocks of birds they way kids will, so I started bouncing around the terrain (Which helped with the “AAAAAaaaaaaooooooaaaAA!” shouting) at high speed toward the large flocks of Canada Geese. However they just walked aside giving me the ‘look’ like I was the girl from the chess club which had barged into the ‘cool’ party and suggested we all play ‘Boggle’! (no, not Bong, Boggle – it’s a word game.)

So thus ended our Hatley Castle Adventure, with me almost caught molesting the local wildfowl. We took off while the getting was good.

So ‘Good Sailing and safe Port’ at the end of Speak like a Pirate day. I would like the point out that Victoria WAS a ‘Free Port’ much like Port Royal and Nassau, it is just we didn’t get a LOT of piracy since it was the GOVERNMENT importing the opium, gambling, setting up prostitution (still legal here!) in order to try to attract American ships. Victoria, BC even had its own brand of opium: Tai Shun. To see a period can of it and a history of Victoria/Vancouver Island Opium check here (miles are determined from Victoria, so 12 mile pub is 12 miles from Victoria). When you visit Victoria, make sure you go to Fan Tan Alley in our Chinatown (the oldest in Canada), one of the last ‘escape and small shop’ alleys that the Dens would have a back door onto in order for patrons to escape any busts. Now has great corset shops, alternative music shops and all other form of interesting places.

Friday, September 17, 2010

Beth’s health status – September 15, 2010

A while ago Beth asked me if Cheryl & I could post periodically to give you a health update on her. The idea being that the two of us have a longer memory and can update you with progression/regression over time.

Today was not a good day for Beth. She’s been feeling nauseous, ready to puke at any moment, and has had abdominal pain all day. Over the last 48 hours she’s been in the bathroom probably about 25% of the time.

She’s tired and very, very weak. When she’s weak, it exacerbates many of her other conditions. I went to a caregiver’s support group on Monday night and when I got back, Beth’s cognition was particularly bad. According to the careworker, Beth had had some TIA’s and had lost her vision. I checked in on Beth to let her know I was back. “Who are you?” she asked. “Linda,” I replied, but I don’t think it really sunk in. When she had supper later, it was served on a built up plate, where the front has a lip about half an inch high, and the back about 1.5 inches high. “Is this a dog bowl?” she asked. She has used this plate every day for the last 3 years and didn’t recognize it. I needed to explain to her that sometimes her hand doesn’t turn easily and how she could use the plate sides to help push the food onto her spoon. When she gets like that, I feel a tenderness towards her and want to protect her from the reality of her disease and all the bad stuff in the world.

This wasn’t the first time, by any means, that Beth has been confused, but it is happening more frequently. That worries me. How far will the dementia go? Will she permanently forget who I am or she is? Questions, particularly if they are asked quickly can be overwhelming for her. It takes a while for a question to sink in and then a period of time passes before she can find the words to respond. I try not to get impatient, but sometimes I do and I try to finish her sentences (often incorrectly) or I make the decision for her. This frustrates her and takes away her choice. But some days she needs me to make the decisions and I end up refusing to because I want to give her choice or I expect her to know the answer. The small questions often cause the biggest problems. How are you? Is this okay? Do you remember... They can be overwhelming. Then I see the distress on her face and I want to take the words back and keep her wrapped in a cocoon where nothing will harm her.

Tiredness and weakness causes cognition problems. Bet what causes tiredness and weakness? A lack of oxygen, erratic/slow heart rates, fluctuating blood pressure and pain are a few contributing factors. Pain is another big one. She’s still recovering from her hour of boxing last Thursday night. Ripped muscles which were starting to heal got damaged again on the weekend when she had seizures. She felt so horrible that she pressed her lifeline button - heart erratics, weak breathing, high blood pressure and seizures. When she has heart erratics she clutches at her chest, trying to rip out her heart as that is where the pain is coming from. “If I could rip it out when it’s happening, I would,” she told me again this afternoon.

Spending time in the bathroom is a necessity, but it brings its own troubles. Beth spends multiple hours on the toilet each day. She’ll have cramps and pain for hours. Her body tells her she needs to go, but the bowels don’t always do what they are supposed to. The bathroom is the warmest room in the apartment. Even with a fan on, she overheats. This causes weakness but also brings out the dementia. Half the time she needs to crawl out of the bathroom as it’s too hard for her to transfer her weight to a wheelchair. She didn’t have enough energy to get from the bathroom to the bedroom this evening. I got her onto a towel and dragged her to the bed. She passed out halfway there.

‘Are you my mommy?’ she asked when she came around. I usually only get this question after she’s been on the toilet for hours and it is late at night. At first, I used to explain that no I wasn’t, but that her mommy asked me to take care of her today. But that led to more anxious questions – where’s my mommy? Why did she leave me? I’m learning slowly. Now, I just say yes and that seems to make her feel safe – someone is taking care of her. Someone will help her to bed so she can rest.

She needs lots of sleep, and every day she keeps losing functional hours. Between the sleeping and the bathroom, there’s very few hours for her to do her work and to relax. She asks me to wake her up from naps and in the morning so she doesn’t lose functional hours, which usually means she’s short-changed herself on sleep. If she wakes up on her own it is because the pain pills have worn off or her bladder is telling her to pee out all the toxins that have accumulated in her body.

She’d love to go out and exercise – wheel a 5k circuit or participate in the Terry Fox Run. But it was all she could do today to sit at the computer and stay conscious long enough to work on emails and watch a little TV. She has goals she wants to achieve – get a blood test (we’ve been trying for two months) – write a blog (she still has one she wants to write about our vacation in July) - go boxing – go outside. It’s frustrating for her that her body won’t let her make these things happen.

I see Beth’s health steadily deteriorating. I watch the disease take over her life and change who she is and what she does. A year ago she could visit summer markets every other weekend – she’s been to two markets this summer. A year ago she could write a blog in about 4 hours, 3-4 times a week. Now it takes at least 3 times as long and she’s lucky to manage 2 blogs a week. A year ago she would be on oxygen about half her waking hours, now she’s on it whenever she’s awake.

Beth and I talked today about what the end might be like. Will the deterioration be relentlessly slow and drag out her days with no quality of life. Or will it be mercifully quick with so many multiple system failures her body just shuts itself off. We hope the latter.

Wednesday, September 15, 2010

The Intimate and the …..well, the Uke?

I had another post but some things take days to say, though I am working on it.

A song for you Linda, and that vulnerability you have kept, which trusts me to love you enough to hold you emotionally without pain. I am sorry when I fail in that. I am thankful that you commit to this, to ‘us’ and let that vulnerability show again, even when it is hard. And for all that you do to remember me, above and beyond the disease, and come for me to bring me safe home. I have no home; I only have it with you, when safe. Thank you.

Linda, I have held on, and I hold on. I will never give up on ‘us’, never stop loving you, never. We didn’t have a ‘good marriage’, we ARE married. Our Riches, Our Poverty, Our Sickness, Our Joy – my body might be knocked about, but my soul is full.


Well, I can’t sit around being moody and ‘significant’ ALL the time (well, I guess I could be moody less, since I have that pegged). So this one is a song I was going to have about me, and had a video for it, but I found this one, which you should see now, before it is removed. It is for all the Uke’s out there (and yeah, those girls are guys, just a little cross dressing) – for Yaoi love and Uke’s: the one who is a bit more, um, well, er, the Seme is on TOP, does that help? The guys being clueless – Uke’s, well kinda.

Characters from Loveless, Sukiso (anytime a boys school has the new student fighting off his roommate by midnight and voted to be the ‘school prize’ for being kissed while crossdressed, accept that yaoi is nearby!), Ouran Club – yeah, ‘host clubs’ are about yaoi fantasy, SURPRISE!, Junjou Romantica. Watch it twice and then try to get the song (and some images) out of your head.

Monday, September 13, 2010

Euthanasia

I don't talk about Euthanasia, in order to set trends. I just want to plan a solid exit. You know, DIE.

But it seems if you have a disability, then that is political. Someone with MS arguing they have no quality of life is harder to take than someone with ALS (though Stephen Hawking just put out ANOTHER book, and he has it – but then he is the ‘good’ exception, but we don’t allow for other diseases to have ‘bad’ exceptions?).

I have noticed, as my grandparents were put into a morphine drip coma due to their children talking about pain control (VIHA is trying to get me into the palliative three month unit and I can’t morphine but tell someone that a 90 year old is in extreme pain….morphine ahoy!) and got prescriptions administered without even a doctor’s exam, just a phone call to a doctor, chart change and whee!, 10 days to death or less!

Not old enough to die young?

I am interested in Euthanasia as just that, a deliberate thoughtful choice to terminate life. Again I shouldn’t have moved I suppose as it is okay in some states, other countries but not here (unless you are a senior citizen – oh wait until the baby boomers get to be 70 – I think that policy might change). I have read the accounts of terminal hospitals, of the massive under-funding, and how as it is put in ‘Dancing with Mr. D.’: They just paid 50 million dollars for a machine to tell one type of cancer cell for another in the main hospital but here, in the palliative hospital, we don’t have enough staff so that your spouse does not lie in their own feces, regardless of how important they USED to be.

There isn’t funding for dying. There isn’t staff. There isn’t focus. Just because there is no choice doesn’t make you live forever, honest.

I appreciate that I and several other who read here fall into the category of “Oh my GOD, if I ever get like that, kill me!”

Once I lose the function to get the kind of ingredients to ensure a speedy death, or mix them up, then it is Euthanasia, before that it is just ‘suicide’. However, since countries which do it regularly know how to do it, they have you drink the drink, and less than an hour later you are dead. Is it a sin? Compared to what? How about lying in a bed, screaming obscenities in hopes that God is offended and kills you as one elderly lady woman I saw and sat with did? Or am I supposed to stay alive for a ‘political cause’ – which is odd as no one seemed to mind all the farmers walking into sheds during horse and mouth and pulling shotgun triggers.

No doctor, no effective pain control, no organization or individual wants to take responsibility. I do. I want to be responsible for my life and death. But I can’t. Not once I get too weak.

‘Act Now!’ – should I go boxing to ensure I have the strength to mix up those pills? To grind them and drink them? I have always believed that Euthanasia should be allowed as a choice. However, if the person is experiencing emotional or physical suffering that CAN be relieved, to be driven to a place where death seems the only reasonable alternative says a great deal about that society. And for those who want to ‘will to power’, it is hard to ‘pull yourself up by your bootstraps’ if you can’t lift them, or the boots.

So what about it, Euthanasia as a reasonable option? Or the nice name: Suicide, before I become too weak.

My heart stopped last night, and my breathing: they both slowed and stopped. But then they started again. Curse it.

Look to Linda.

Saturday, September 11, 2010

Boxing, Chi's Sweet home, Vampires and 4 other DVD reviews

Ow! I went to the gym, it took over a week of planning but I made it to the start of boxing. I ain’t dead yet! I focused on sweating by overloading my heartbeat and blood pressure. The best way to do this is to do things a ‘speed’ which means getting some trance/techno music on and doing for example, 2 sit ups per second for a minute. The idea is to go to the maximum heart rate, 202 beats with the highest blood pressure possible, caused by forcing my body to do extreme actions at extreme speed, and after about 25 minutes, the sweat started on the forehead, then the torso and then everywhere. It only took: 50+ push-ups, over 200 sit ups and about 800 punches on the focus mitts and 3000 on the heavy bag. I ended with 160 punches with focus mitts in two minutes with Ian, hooks, upper cuts, jabs and crosses.

Now I am sore. Oh how sore. OW!

I am trying to do blogs that have lots of pictures but the problem is that I have the pictures done the text half done but don’t get the energy or time to get them done. I want to blog EVERY DAY. But I also have blog posts like the graveyard in Oregon I want to blog about.

This is the difference in the reality of a progressed disease, I do not make a ‘final lecture’ about how great my life was and disappear behind the curtain. That is why I like the book Harmony: he kept editing it from the hospital bed he would soon die in. I will NOT say how great my life was and disappear, because THIS is my life too. But right now I have to FIGHT for anything I want to do.

Chi’s Sweet home, which I reviewed earlier (get your copy now, full colour!). This week I talked to Ed Chavez, Managing Editor at Vertical, and Chi just hit the New York Times best seller list. It is the #1 series of the eight different Japanese magazine on stories or serials about animals (they really like that there), and now on the Best Seller list.

I got Linda to sit down from her caregiving, doing errands, applying for jobs, applying for medical aid (we have 8 days of medicine left – Whee!), applying for a sling, and the whole rest and spent two hours going through romances with her. That is her ‘relax’ when she has time, or is waiting, and she had run out of ones on the wish list, so now there are more, most are $.01 plus shipping. Seeing Me Naked, about Elisabeth who comes from a famous family and ending up with a career and partner which her family, which does love her, totally disapproves. The ‘Naked’ is her self and desires, to accept that she does deserve what makes HER happy, is a book that I think a lot of people would like (since these romances have 120 to 65 five star reviews it seems to be true). Also Losing It, about a woman without girlfriends who is overweight, unhappy in her career and no romance in the future, just an elderly neighbor to talk to. As she decides to change her self, not to some ‘thin and successful dream’ but realistic expectations things happens, like her one and last sex experience comes back to town, no longer the shallow manipulative jerk (or is he). For those who feel they are still forging their new self, fighting with their own expectations and looking for the ‘more’ – those are two.

I have to rest, so the doctor’s and Linda says (until Thursday and boxing?). I will be watching TV, or since we don’t have one, DVD’s of TV shows. In order to make the most, I need to watch and resell the DVD set as close to release as possible, that is why most are bought in advance with the gift certificates. Because Vampire Diaries cost $37 and I sold used for $34.50 minus amazon commission (the first week there is a large demand, which decreases them more people who watch it and sell it on). No one really buys DVD sets from the wish list, but they are good value and I recommend them if you want to give a gift to me, as I am able to resell them once watched, plus they provide pain relief (this is actually a medical fact, the ‘distraction factor’) and help me when I can’t move about – plus, what I sell for, I put back into DVD’s (or manga sometimes, as that is bathroom reading – all 14+ hours a week in there). So I recommend Human Target ($27), Medium Season six, Bones, or Supernatural (see, new is $37, used is $36 - get used as you don't have to pay the tax, but you do have to pay $3 shipping) or the Mentalist season 2. They are releasing in the next few weeks. I am watching Criminal Minds Season 5 (Cheryl brings it in the morning) and I have used credits to get season 2 of Fringe for the following week. Then I am OUT OF DVD’s. – Fringe ships tomorrow to get here Thursday, Cheryl brings it Saturday. So that means I have to lock in what I will watch for the next two week in the next couple days as advance orders also ship ahead of time.


So, for the readers, here is a review of the hottest and best TV in recent DVD release, in five sentences each (um...not!).

Vampire Diaries: The first four episodes IS Twilight, the producer admits in extras being told that casting wasn’t important as they ‘already had an audience regardless’, basically it is a) girl who is innocent and has NO power at all, except to make people fall in love with her, b) broody vegan vampire, who doesn’t feed on human blood (or kill animals to get the blood) who falls for girl on day 1 of seeing her, c) bad boy brother who is also a vampire and who 150 years fell in love with a girl who looked like today’s girl, which got them both turned to vampires – the ‘Salvatore Brothers’ and then d) everyone around girl gets powers, like brother, best girlfriend (powerful witch), parents, uncles, etc. It is a huge soap opera where the brooding of who is in love with whom or who wants to kill whom that day is the topic. Things like SCHOOL are forgotten. Main irritation: The ‘biting an apple sound’ when they bite a human – I AM a biter and as a child used to bite the neck and I can assure you it NEVER sounds like an apple.


The Plus: um, if you really don’t want to think, and love Twilight, this is Twilight Plus, with added brooding! Also, hang your irony hat before watching ‘MYSTIC FALLS’ –ack! And 350 year old vampires can only seem to last a day or two here, apparently the most dangerous place on earth. Gay rating: -4 (no one is gay, black individuals killed off, Asian characters killed off, so I am sure gays would be too, homophobic remarks) - also another penalty for NO LESBIAN vampires, BOO!

Flash Forward: A single stand alone series where everyone sees the future but 20 million die as planes crash, cars crash, etc. Many interwoven stories about what people saw in the flash forward, some embracing what they see as fate, some trying to change what they see coming in six months. The first half felt like LOST – because it was designed to replace lost and go for five seasons, so important clues show up, but they meander around like the people in LOST who it seems take a lot of pot every day. Suddenly, show is cancelled for second season the it is pedal to the metal action, and evil organizations, genius’ who did programs in hospitals, all revealed leading to a thrilling cliff hanging conclusion (almost a cliff hanger) – overall, a good watch but not worth the hype. 3.5 out of 5 stars (check ALL over the bonus screen for easter eggs on ‘My vision’ with about 10 people giving their vision of what they saw, touching, funny, strange…). Gay friendly rating: 2 (one the one hand, only ONE gay character, some anti-gay comments and the ‘evil lesbian’)

NCIS season 7 – Apparently this became the number 1 show on regular TV in the seventh season, weird. The first episode is genius, but the rest are very spotty as we delve into side characters, and people’s pasts. Lots of guest stars but the logic of the death to be solved is often illogical (a 5’4” woman hauls a dead 250 lb Marine through a field and hoists him up as a scarecrow as just ONE of her kills?), sometimes catching the killer is forgotten completely and in one episode there is just a random shooting, no law much like the horrific walk in and shoot in the head transgender shooting of season 2 I think (the ‘some people just deserve to be killed, American Idea). Still maintains the ‘girls can only hit or kill girls’ attitude along with the patronizing of females in general. Humorously ALL contacts in the middle east are…..white, and the Muslim we find is WHITE with interviews with a Muslim Cleric who is African American. Okay, are there NO actors left in the US who are Arabic? However accepted gay banter is up and one ‘don’t ask, don’t tell moment puts this at the highest gay rating yet: 2

Two medical TV shows just out on DVD:

Trauma: Excellent show about EMT’s and Paramedics in the field and how they interact with hospitals. Informative if you have taken trips in ambulances many times like I have (Medics can give drugs, EMT 2 can do some tasks, EMT 1 can do others – some types of in-tubation is allowed, some is not – the old ‘maintain fluids until a REAL doctor arrives). Shows the limitations of both the medical and paramedic system, also one episode when the 911 system is down and calls go to 30 minutes, we get a very close hand look at what call centers for 911 do. As one Paramedic is an M.D. but doesn’t want the crap politics of doing rotations and because doctors don’t go in the field, she is torn between doing something that will save a life and getting written up or suspended, or letting someone die. There are also three characters with PTSD, one with a drinking problem, and two who are adrenaline junkies, including one who bottoms out, and needs therapy (very good therapy by the way) before coming back. Highly recommend, 4.5 stars out of 5 and hope this shows up again.

Mercy: this show covers what hospital shows DON’T, the ICU, and the admitted patients. So we get to see chronic illnesses as well as people who have to go in and out of hospital often and the choices they make. This is shown from the people who are there all the time, the nurses, who will see the patients 8-12 hours each day they are there. An openly gay character, a woman with battle PTSD displayed in excellent detail, and a newbie in her Hello Kitty smock round out the RN characters (including the time she has blood all over her smock after a horrific experience and throws it away with ‘no more flowers for a while’). There is a minimum of sleeping around, and exposure to a series of cases, also showing that RN’s are often the patients’ defense, even against the doctors who just come once a day. An episode of an intersex condition (not really one that is common), and portrayed pretty much EXACTLY like what happens, including a traumatized young teen with 6-8 doctors forcing them to spread their legs so they can comment and prod. When that happens in the world, it is sexual abuse, but in a hospital it is……science? Yeah. RN to the rescue, thank goodness. Some patients know they are going to die, some try not to, it is life. I would definitely pick up a copy (about $20 now I think). 5 out of 5 stars – directed and written by a female and you can tell the difference in tone, about life, not that ‘critical moment of adrenaline’. LGBT rating: 8 for 3 appearances of LGBTI individuals including one regular actor.

So have a good weekend, remember Linda’s romances please, and me as I ‘ow, ow, ow’ all the way through the weekend. Off to see the markets before they close tomorrow, don’t know how much sleep I will have though (5 hours, then three later?)

Wednesday, September 08, 2010

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

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

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

1,000.

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

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

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

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

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

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

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

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

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

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

Are you lonely?
I am. Aren’t you?

Thursday, September 02, 2010

Roland, El Cid, fourth grade and real honor

In fourth grade, at 9 my life changed. My teacher, Mr. V. was the Vice Principal, a big black man who used to mete out corporal punishment and was infamous for it. Our classroom would get timid knocks on the glass, to have this GIANT (to a 7-9 year old) Black man open it and stare down growling “Why are you here?” equals total terror. Other teachers used to send bad students to knock on his classroom door as punishment, though only a few even in our class knew that he didn’t give out corporal punishment, just really stern looks. I was one of those.

Mr. V. was a man who managed to channel his passion for teaching into driving his students to a level of perfection that was unusual (probably as unusual as our third grade teacher reading us the Hobbit, and Lord of the Rings). Every Friday was multiplication day. When math time came around, the papers were handed out (the times tables from 1X1 to 1X12 and 12X1 to 12X12) and EVERYONE had to do it in less than two minutes. Or we did it again, and again, and then next week, and next week - we had a year, until we got it. It was timed so that first we learned the times tables, then we memorized them, then we did them so fast that we didn’t even think. To this day, I know what seven times seven, or 9 times 6 or 12 times 8 is before I can even get the words out. I don’t think it, I know it, and every student he had knows it, without ever thinking.

He and I used to play chess during lunch. My father had been playing chess with me, no holds, since I was four, and three years after fourth grade I finally won my first game against my father, then two more years until I would win again, consistantly. So I played Mr. V and lost. I don’t think Mr. V was used to a fourth grader who wanted to play chess 200 straight days in a row and lose every day. I chastised him if I thought he was taking it easy on me, in the way children do when they don't know that they shouldn't chastise 'fearful Mr. V.' - I think I amused him.

He gave me a book, an old book he owned, rebound and kept together with black binding, literally nameless. It was the tales of 11th century knights. It became my standard, because I knew after reading that book what a ‘standard bearer’ was. Because that is how Roland became the Page of Oliver (one of the 12 elite knights of Charlemange), taking the job because the standard bearer had riden from the field of battle in fear. This left Oliver alone and without a rally point. Roland, a fatherless peasant but childhood friend of Oliver stripped the standard bearer and rode out in armor, carrying the banner of Oliver, saving his life several times. As my grandfather used to say, “People either eat the broccoli or the dessert first”. That means that some people choose the hardest first, leaving the easy for later, while other take the fun stuff first and leave the hard for last.

Roland taught me that fear is faced, not run from. I was inside playing chess because as an often sick and fragile child, the playground was a little TOO violent for me. But Roland is the knight of lost causes. Because he was in charge of the 20,000 rearguard of Charlemange when faced with overwhelming odds (the tales put it at 400,000). He had been given Oliphant, the horn which no mortal could blow, by Oliver, if he was in need of help, he was to blow it.

This is where interpretation differs, as Roland refused to put into peril Charlemange and the Army. As his 20,000 knights became 1,000, they begged him to blow Oliphant, but he refused. Even with a circle of 100 knights, he continued to refuse. Only with a few knights left, and wounded did he blow Oliphant, the strain causing blood to pour from his nose and mouth and into his brain.
In some versions, Roland is seen as the reckless knight who wanted too much glory, and in one version even being killed at the end by Oliver for his foolishness of these deaths.

The book was very unusual, in that it had one theme, that of individuals who, regardless of exile, of the orders of those with greed or other motivations remained ‘true’. And to be true means to take full meaning of the task given you, the ‘spirit’ of the word. Roland did not blow the horn Oliphant because that was his job. He was to ensure the security of army of Charlemange and guard it, not save himself, so he only blew Oliphant to make sure the Army knew of the threat.

Roland WAS a real person who really DID die as the man in charge of the rearguard in Charlemange army’s exit of Spain, recorded in annals of the time. Another REAL person in the book was El Cid, the undefeatable.

El Cid, living in a Spain tat was being taken over by the moors, served the king of Castile, and grew up fighting the strongholds of the moors. He was no great nobleman, his mother was a minor aristocrat and his father not so he was the hero of the peasants, a man who rose to greatness due to wit and valor. At the Battle of Cabra, El Cid rallied the troops under him, turning the battle and routing the Emir of Granada back to his city. For this ‘unauthorized’ action, he was exiled. He continued with his troop now as a mercenary, until Alfonzo, the king of Castile suffered a huge defeat eight years later and recalled El Cid. The name is a combo of spanish and arabic, meaning ‘The Master’ or ‘Master of Military Arts’ or as he was known, “The Champion”. The title was used during his lifetime.

With an alliance of both Moorish and Christian soldier, El Cid led and gained cities, territories around the great city Valencia (on the Mediterrian side of Spain) creating in Valencia and territories a place where Christians and Moors lived together in peace. The Army and the civil and army administrators were both Christian and Moorish. He died in 1099, right at the end of the 11th Century, and his wife ruled after his death but three years later, the city besieged, the tale is that El Cid, embalmed, tied to his horse, led the great march out of the city, bringing citizens to safety, through those surrounding the city as none dared to attack. So even dead, El Cid, in saving the city citizens, gained one of his greatest victories. El Cid is not a myth but also was a real person, in fact his sword, tested and shown to be 11th century was bought by Castile and is in the Museum of Burgos.
The book showed that a name was created by being true to yourself, and resisting influence. And that, despite or indeed because of your attempts you may be hated, for years even, but in the end, the impossible, a safe territory for both Moor and Christian existed, because of El Cid. It really happened, here is his signature.
I remember thinking that this was a rather odd book since I put off reading a month or two because I didn’t want the battles and feats of valour, but reading this, all the ‘Heroes’ turn out dead and the ‘valour’ they held was often mixed with exile, hatred, and death.

El Cid was undefeated due to his extreme and unusual tactics for the times, which included ‘brainstorming’ session with aides, then using unusual tactics which included what we know today as ‘psychological warfare’ planning how to create the greatest terror in the troops right before he attacked them. He also used ‘lightning attacks’ on paralyzed troops as well as independent trained troops, and small groups to attack in odd places in order to distract the enemy (sort of like SAS or the like). He also took suggestions from his troops themselves. There was no barrier to victory. For him, in collecting and inspiring those around him, he had no prejudice, accepting moor and christian alike.

I still have that book, and it still has no title. If a peasant can sacrifice himself for honor unknown under the armor, why not a woman? If El Cid was disliked for being successful, and for not being influenced by bribe or corruption, then so too could I. Another 100 chess games and I left Mr. V. classroom, my parents transferred me to a private school and I think every teacher except the Vice Principal at that school soon hated me.

I think it was because I DID things, I tried and failed, and faced the teachers and openly admitted it.

That is the one thing I miss, DOING. Today, even resting in bed I pass out, and the care worker was able to eventually bring me around. I spent a day working on and finally freeing a pill swallowed into my lung, which had festered (oh, finally!), and I bleed from my nose. Not exactly getting out and DOING, not ACTING is it? I may be alive when statistically I should not, but so what?

Yeah the night is long. I would like to say I don’t why I told you about 4th grade except I do. I want to be part of a world where I am burned at the stake or strapped to a horse dead to DO things, rather than literally rotting in parts. Too bad I missed that world by around 1000 years (and not a lot of female commanders…..that we KNOW about).

The battles, the things to be overcome now are different, but there is still work, and the unimaginable to be accomplished. There are a few places now where men and women work together equally in admin, and where people are viewed on their merit and potential, not by skin color, gender, disability, religion, or other issues. But that isn’t HERE yet. And I will fight for that, when I can. Until then I will try to get out of the house, then I will try to get back to boxing, showing women that the stereotypes are untrue, it is a thinking puzzle game that is kind of fun. And I will use it for my own risk: life and my sweat glands, with 10 minutes on the heavy bag at two hits a second.

I leave you with a narrative of red haired Sora and blonde Layla from Kaleido Star, both who shared despise and failure, but refuses to give up. That is the point, not to ‘refused’ to give up, but to keep refusing, no matter how bad it gets.
In order to do what all others see as ‘cannot be done’ it takes years of discipline and hard work (and yes, pain) but it is right there in front you. Your dream is ALWAYS in front of you, waiting to be dreamed and sought. Why do you wait?

I have run thousands of miles for races or ultramarathons I never was able to compete it. So what? I failed. The injuries healed and I ran again. I did compete, I did run. If I got a medicine right now that could cure my orthostatic hypotention, I would run a 10K and then a marathon using a walker. And if you don’t understand that, leg braces and all, then you don’t really understand me. It isn’t about walking and running, it is about DOING, about TRYING. One day I will find the right words for explaining it, since I know someone right now who is doing it, risk, and a life changed.

The greatest risk? It isn’t doing something that might cause you loss of function, or damage your body forever, but instead being paralyzed BY risk. You may not believe this but a calculated risk is all we get in life, and if you never choose to take one, then all you have done is given in to a fear of the unknown. Except it isn't unknown, because for the rest of your life you will know what you achieved: Nothing. Because you choose to do NOTHING. What are you risking? Failure? It is an honor to try and fail compared to not try at all. No, not honor from the people around you, but within you, knowing who you are.

Linda says I talk about the dead a lot now. Maybe I can just finally understand what it means to be near helpless to the crush of a disease sitting on you. I hope that like Roland, at the end I can sound that I held to the end, and finished my charge.