I apologize for being out of touch. I live on an island and a ferry brings over my post. Every year, the boat which brings the post has to repaint and fix things. That happened, only there was more to fix, so according to Linda, I have not be able to send postcards, or letters or gifts for almost a month. And the same is true for any things you have sent me. I feel frustrated and that I have failed people in being there for you. I feel so far away, unable to help or be there.
In health here are some baselines: I can speak two hours maximum a day, after that I cannot convert enough oxygen and pass out, stop breathing and go into seizures of brain damage. I can think clearly, but at about 1/5th your speed for two hours, and then it becomes very difficult to make a sentence. And I can focus at least one eye for four hours before needing to sleep. An average email will take 40 minutes if it is 2 paragraphs and 90 to 140 minutes if longer. I can look at books when just awake for an couple hours, then a couple hours of manga, then nothing, waiting for help to come, unable to read or see for the last few hours. If I can see, I watch DVD’s as I am able, using the visual aspects to stimulate my mind, reach the information on history or connect information to keep my mind from degenerating further. Because, sitting/lying around until assistance comes, with only sight in one eye, gasping to breathe and with the dragging weight of fatigue is not as fun as described in the 'Fatigue, illness and you: fun filled days' brochure. Don't buy the time share, and PLEASE don't buy the 'full package' (ohh that sounded rude!).
For example, thanks to an Amazon.co.uk gift card, I bought, waited then watched Beneath Hill 60 (region 2), a true event: exciting and tense war story from WWI about civilian engineers from Australia who, after Gallipoli, mined deep under the European trenches. The Germans did the same as it was a battle of expertise, with a war of mining to set explosions, counter mining, blowing up the area around enemies tunnels to bury them alive, all done up to 90 feet BELOW the trenches, and the man in charge of the Australian crew, high on awards and highly recommended.
Also this month, I have had to choose between pure survival and the energy needed to write or email or blog. On bad days, it seems like ‘This is it, however this ends, it will be soon.” And on good days, it is, “I can hang on for a good long time.” I end up my worst enemy as I use my energy to try and keep to energy levels of before. So on good days I spend energy ‘catching up’ until like a boat running into the shore, I hit the end of energy with a boom. Much like the last three days, when I sleep or am awake but unable to move, on a full oxygen mask with complete blue hands and purple arms, shaking in body shock.
After Xmas, there were some DVD sales, which I got, as well as some presents, which I bought, but have yet to find people to give them to (as I forget the 'right person') or energy to wrap them. Five boxes of gifts, waiting, because for those who care about me, and act, in kindness or even to pity me, I want them to know that if my life is better due to them, I hope I give them something to make their life better as well (like Emily the Strange!). Do they like puzzles? I have one puzzle left from my visit to the Ghibli Museum, a Victoria Francis gothic rarity, and some Yaoi fun.
Though due to limited funds, I cannot give as I might wish, flooding every person with exotic and rare treats: because often my disposable income is limited, I might have $1 to someone’s $10, so I want to make sure my $5 or $10 or $20 finds something wonderful, a TREASURE.
I try to make sure to send a gift to anyone who sends me something, but am frustrated because with the disease either destroying or limiting my access to remembering people, I can’t remember what a good, a great, or a perfect gift is for you. I have everything from the lush and rareyet totally cool Sui Journals (plus many other journals), and limited edition stationary, goth heaven, and things both wild and wondrous. So if you get something from the Wish List, can you please help me and let me know the kind of thing you like, so I can send it to you?
Things added to the Wish List include: the last volume of a manga series which is now out of print (2 different series, I am so close to getting all of Land of Silver Rain!), also several romances by authors for Linda – one cent plus postage and up a bit. I look at the covers and go, 'Linda is a perv' with the perv titles and the odd shaped male chests on the cover (does this really turn on anyone but gay guys?). Hard and Fast? Hot Finish? Linda says covers do not reflect the funny writing inside (err…okay, but those covers are very, PERV but um, well, she does need down time - and we all have our little secret reading material)
Speaking of my secret reading material, Moonlit Promises, a BL book about caretaking (which is going out of print, ahhh!), two highly rated YA books on identity while dealing with lymphoma (which my grandmother had) and heart transplant (I look for books close to my medical experiences, and having to face the future of no-future, and dealing with it). Also on the second page, there is a set of cutlery as I cannot use half of my mouth anymore, and have limited mobility in my hands, but only have one set of the built up cutlery. And manga from Black Jack to a game of my heroine, Joan of Arc, which is TURN based and does not rely on my 1/5 speed nerves (I will blog about the intersex heroine Joan of Arc a bit later) for about $10.
But you can see, I hope, how it would help me if you could let me know what kind of cool things to send you, your interests, from Bettie Page to Vampires. Our wishlist has needs which may appear random but are specific for specific reasons: Supernatural: The Complete Second Season (about $20+ from vendors) is on the wishlist because I have two main problems watching DVD's. One is that in the time after the stroke, the hospital said my brain would not record long term due to trauma, also damage to the temporal lobe means I don't write long term memory. I also have a limit of 18 to 36 hours on my memory so unless it is emotional I honestly have no memory of it (including seeing my workers for the first time, every week. ME: "Have you been here before?"). A DVD set that I don't watch every day (in order to remember the characters) I remember nothing, so I am completely confused if it requires a large arc story. I watch things like House, In Plain Sight, Criminal Minds, Law and Order because the episodes are single, and I don't need to remember a bunch of characters and who is pregnant and who is lying about this or that. Supernatural and Moonlight are on the wishlist because both are highly recommended, both are in the 'dead' zone of time after my stroke, and Supernatural has a mini-horror film in each episode, which I like, I am told I have seen it, and liked it, but I have no memory of that, so I can watch it every 2 or 3 months. So when I get set, and am away from watching an episode for a week, no problem with Supernatural, I have a computer program that starts me at the place I left off. And after watching an episode, I always start the first 10 seconds of the next one so the computer can remember FOR ME what I have watched and where I am. So this is a DVD set chosen for the best use specific to my disease (Due to an increase in pain, I need more action DVD's, and Moonlight has over 630 5 star reviews, so I am hoping it is riviting. The functional aspect of the wishlist is the same with the pancake maker for Linda, who uses pancakes to make our food budget stretch out and give me food with the right amount of texture for me to use part of my tongue (I can’t use half of my tongue as it is nerve dead) and teeth on one side to eat. The manga Black Jack is about a Doctor who works outside the law because he is not constrained and can act with compassion then. The Wish List fills very specific needs, from Firefighter Diago manga about Diago who fights to make sure everyone comes home alive, to learning how to care about himself and make sure he survives as well (an idea I am slowly getting - saving everyone includes me too!). They all work toward specific emotional and physical needs: a bump in the quality of life, and choices, encouraging me to keep trying, or to be there when I or Linda need to rest (or I can't move - which is LIKE resting).
I want to ensure that I can do the same uplifting of living for you, from wallscrolls (anime girls, couples together, spring time, sword maidens), stationary, Hello Kitty stationery, or these Hello Kitty band-aids, face masks and other medical supplies going to the Peds unit here in town. There are Toroto special washclothes from Japan, the Ghibli films and other DVD sets, mousepads of all kinds, manga for those who have never tried, cult light novels, fun manga and manga about chronic illness,
Emily the Strange art and rare stickers along with Edward Gorey Art and limited Stationery for the goth, to just fun NEW Supernatural books ready to be sent to YOU.
So please, if you are one of those who chose to help our quality of life (from down time for Linda with books, or Supernatural with me) off the Wish List PLEASE let me know if you want to try Burn Notice, or what you might like (DVD’s, books, manga, stationary, art, graphic novels, plushies, and more) – PLEASE. If you help me understand you in an email, I can do something, that is a gift for me, helping me understand you, because I can’t do it without your help. When the issue is the disease I don’t take responsibility for the disease, I try to figure ways to work around it. Your sending me an email is one way to work around it.
Linda has put items on ebay here, a prelude to a large ebay sale in April. Thanks to Linda who has put it up for me, so I can pay for some children’s books, graphic novels, manga, and boxes of gifts from a friend I have made who gets some of the remainders from the publisher and lets me choose what I think would make a good gift. I hope to be able a) pay it off an b) start sending them out so kids don’t think nice things only come at Xmas (adults too I hope).
I am thankful the Amazon.co.uk gift certificates given to me as they help me see DVD’s on history which have been hidden or ignored over here. In the UK, Australian, New Zealand, Chinese, Japanese, European war films (which I enjoy as a war historian), I can get and have sent to my house from Amazon.co.uk. These are films not available here because US audience don't care generally about Austalian fighting in Indonesia in WWII. I do, I love watching these and seeing the connections come together in my mind.
Sadly, for US audiences, if it is complex, the public would rather choose a ‘bad’ US hero, like Inglorious Bastards, than an actual ‘good’ German in WWII. I was riveted by the film City of War, the story of John Rabe, a German for Seimens’ Electric in Nanking since 1910. A film was made about him with high name A-list actors, by an Academy Award winning director. It showed how he ended up, without guns, or any support, to save over 200,000 civilians from the vast destruction in Nanking. Because he was a member of the National Socialist (in 1937, he was imprisoned back home), and used an unopened giant Nazi flag sent to him as Director, lighting it up to tell the Japanese Airforce to not attack that area. The Chinese came to believe the flag itself was bulletproof. John Rabe, having saved so many, his house a museum in China, he was arrested in Germany, his diaries taken, interrogated by the Gestopo. Yet when the film was released, a budget of 20 million plus, the thought of a ‘good’ German meant the city of Amsterdam made more in the opening of the film than the entire United States (as it opened in only 4 screens and quickly fell to 1 screen then none). It is the willing ignorance that confuses me. Do people not have the faith that they can approach that which is complex? Perhaps I see my own disease and the avoidance of care due to ‘too complex’ in this attitude. I recommend seeing the film. I wish I could have saved 50, or 100 much less 100,000 or 200,000 human futures, dreams and lives.
One I wish to see, also from the UK, not US ironically is This is War, and is a documentary of a marine who invaded Iraq. For the first tour, one Marine, Mike Scotti, took a camcorder and filmed what he saw. It is the genuine feelings and responses of the front lines of the invasion of Iraq. It has won over 10 awards and is likened to Apocalypse Now and other great films. But is not distributed in the US, except by online DVD (under title Severe Clear). Released in UK theaters I will order it from the UK when I am financially able, along with other films about Poland, and Afghanistan (seeing the Russian Outpost 9 and the documentary Resperto of the US in Afghanistan is illuminating). I think the people who read here are not afraid of complexity, and are curious and trust themselves enough to decide for themselves.
Oops, so much for a short update, time now for me to rest, Linda is here. I will add the rest of the reviews and news next time.
1 day ago