Monday, January 31, 2011

a masturbation interlude: oils, gels and apple cinnamon

My ‘serious’ blog post has taken 4 hours and I have progressed only 2 more sentences and a headache. So, a masturbation interlude.
I was sent Kama Sutra: Raspberry Kiss Stimulating Gel by Their Toys, yes Adult Toys to review. I had envisioned a disability friendly heat arousing breast action while I played an erotic lesbian anime game on my computer (okay, I am an anime otaku, I love the 2D girls, but I love the 3D ones too).
The point and the problem is this: How does a woman who requires near constant care get her groove on? I still have a libido (oh…..ohhhh……ahhhhh) and while I AM touched every day, it isn't sensual touch but medical for heat, oxygen and health checks. That is not doing it for me. And honestly, I think it if WAS getting me aroused, I would have even greater problems finding health care workers: “Oh yes please, check my temperature again, slowly this time, let those fingers slide up and down my spine….yeah.”

So, either I can get assistance (BUZZZ! Asked and found workers um, ‘creeped out’ by the idea.) or figure a way to get the most action in the least time. Which is really hard because getting ready, or even clothes off takes time. Is there a 'quicky' for someone like me? Plus I am already IN the ‘privacy of my home’ (where the workers get their masturbation done, but are freaked out that I will), and not so much a voyeur that I like people walking in with sandwiches during the ‘ahhh….ahhh….so close….come on!’ section.

I hoped that Sexual Heighteners would do the trick, combined with a good book or an audio visual experience like a eroge anime game (there are hetero ones, Otome ones – girls point of view, lesbian ones, bisexual, yaoi ones – the lot). I got two potential breast tingle products, but the first, Climax Kiss (sounds great, no?), was a peach flavored lube. I was told to add it to my ‘intimate areas’ (that would be the vagina, and the vulva) for a ‘juicy addition’ to sex.

Sigh. So, not really for me at all, then, it is a lube for my partner because peaches are nice and vagina’s don’t actually taste like warm apple cinnamon: When we first got together Linda and I got a basic sex positions book. The book was very 'this is what you should feel' and it clearly stated that the vagina smelled and tasted like ‘apple cinnamon’ This became a common puzzlement and over the years a joke as we were like, “Do you smell the apple goodness?”, “No, not really” Of course, this was before American Pie, which seemed to reinforce that vagina’s are like warm apple.

Rating out of 10 for disabled masturbation: ZERO.

Rating for sex books that say all vagina's smell the same: ZERO

Rating for guys who associate vaginas with the smell of apples: (I give up!)

Linda says that it is actually a form of patriotism, that saying women smell like apple pie is saying they are part of Norman Rockwell's America: baseball, turkey and apple pie. Thus all-american women MUST have the apple pie scent. I guess as a Canadian, that's why I smell like moss, fir trees, and tundra.

The Kama Sutra Gels, also sell a mint flavored DEsensatizing Gel. They don’t mention the practical applications of the gel. And I can’t quite figure them out, unless it is to make the guy last longer? Dunno.

My Sensitizing Gel tried by both Linda and myself on the breasts (several times!), waiting over several minutes for the promised, “a tingly tasty treat for sensual body exploration”. We got no tingles. Disappointment factor: HIGH. Turns out it is another lube, but packaged as a non-lube, and that tingly, is for the tongue of your partner, not your own body. So, another useless masturbation product. I am all dressed up, with the engine at idle. Sheesh, getting naughty can be quite the challenge.
There was a gel ‘Formulated especially for women by women’. These women however must have been a bit high since they decided to title this vaginal gel: WET. Yeah, that’s the product name. So apparently some women though that going, “Hold on, I want to get super WET!” was cool and sexy and what other women wanted to say. “Oh yeah, bring on the WET” – because when you think of romantic, feminine, the dream of the prince carrying you to bed (or butch) the product ‘WET’ doesn’t bring those images, as Linda says, “It just means you got caught in the rain”
So I am frustrated (in SO many ways), the sex shop has failed me. Right now, the closest I have to inspiration is using some pop rocks I keep by the computer, licking them and then sticking them in my bra and hoping for the best. I do think if it works, the ‘Pop Rocks’ method of breast masturbation could be a giant leap forward for teen girls and high schools everywhere, as Principals start doing locker checks for Pop Rocks.
There are a lot of different health conditions which affect women and limit mobility and sensation in the vaginal area (even depression can decrease sensation significantly). So far the best method of success I have had is in being open enough to find what gives you that sexual tingle mentally, whether that is a traditional romance book, yaoi, yuri, traditional romance of being carried off, pirate fantasy, whatever. And who cares if you are like me and over six foot tall and would need a giant viking to carry you off and that would involve being slung over his shoulder. That is why is it called 'fantasy', so put the ‘sensible’ voice aside, put your mother’s voice aside (really, what is she doing in your sex fantasy?), and deal with the fact that you like (whatever it is you like) whether is it furry cowboys or women with swords (nothing phallic in either, of course). Once that is done, you are half way there, high anticipate, enjoyment of experience, and a mental fantasy assisted by
literature or game, or video, or movie that enhances enjoyment. I am still looking for that extra bit of sensation for those who may not have the hand control or the sensation to use a vibrator on and in with satisfaction. A product which works while the mind creates arousal would be optimal. The mind is a fantastic thing, and I just need to connect the fantasy to the physical aspects of orgasms. Female disability neuropathy masturation is a GO!

A LUBE is not it for solo: first it is going to leave a smear in the book, it is hard to get off the hand entirely and leaves marks everywhere. And second, while a lube might be great if you have a partner to eat you up, a female with a disability statistically does not, so no lube unless you want to ending up frustrated, with oil stains on your favorite erotic book and your bed smelling of peach. Okay, the last might not be so bad.

Body Shop body butter on my torso and breasts after a shower, makes it so that as I heat up, the smell of citrus grapefruit arises, using the body heat to create the scent. I need to find a product that can work with the body heat or just breast rub to create heat and sensativity. And no, I don’t want Ben-gay athletic rub.

Your masturbation reporter signing out: vigilant, horny and with breasts overdue for tingles.

Sunday, January 30, 2011

Self loathing, mirrors, and tomorrow.

I don’t know what percentage of people self-loathe some aspect of themselves, some part that they can’t seem to change, and can’t accept either. But that part used to include about 95% of me. Ironically, it the best, the most empathetic, the most sensitive, the most dependable people who get stuck in a box constructed of themselves. My GP of old told me if I could learn to accept and instead of trying to change who I was to be what others wanted, to change how I saw myself, so I could start looking up, and not always down, or in the twisted mirror I seemed to carry around with me.
So I did. I went to therapy for abuse, and I took medications, and I found an equilibrium which didn’t require that I be busy ALL the time. I was busy so I didn’t have to think and so I could stack up accomplishments which were never, ever going to be good enough for the voice inside my head.

Because the voice was me.

I have been working all day, morn, night and morn again and the day before to write a blog about discrimination within communities. Because there is nothing better and nothing worse than finding some group where you belong. It is great because during the honeymoon period you are connecting to so many people and you have so much in common. And then, over time, you see the cracks, how this person doesn’t talk to that person and how this group thinks they are ‘more’ of whatever than you are, and thus better. It was like with a lesbian group we joined. To be able to dance, or to go to dances in a group and defend each other from attacks, physical attacks was great. But then it turned out there were ‘real’ lesbians, which were the ones who knew they were lesbian from age 4 or 5 or as one declared, from age 2. And then the little comments from the butches about femmes, or lipstick lesbians. And those who had invisible disabilities were excluded and those who had mental illnesses were avoided in case people thought we were like ‘them’.

And so, the more we needed to be together the more things would split apart and then people would put on ‘the face’ and pretend they weren’t hurt or angry or excluded. And this is what I came out for? To lie? And I ended up feeling more isolated than before.
I go on, but not just pretending not to see. So not lying often means that writing what I see, or even when I talk about myself, that seems enough of a mirror for people to get bothered. And people say, “That isn’t me.” Really? Because it has always been me: the person deliberately not looking at myself as I work to make sure I was in the ‘right’ group, the subgroup which wasn’t thrown out, or excluded. And it made me insane. So I stopped. But the truth is that I am probably a bigot in some way, and so are you.

I find that some people, when they look into a mirror, and don’t like what they see, they avoid that place. I know all about that, as I didn’t have any mirrors in my apartment for over 15 years - that's not a metaphor (You see, I was fat, fat, fat, disgustingly fat!). Then there are those who smash the mirror and the person holding it. That is easy, because often it is easier to make people run away than to change. Because that is the third option – to change what you and I see. And what is the point of driving people away? To prove to yourself that you are unloveable? I know that feeling too. ‘No one can love me, and so I will show this people the REAL me, and they will leave.’

Well, except that I have always seen the real you. Did you think those distractions worked? No. And I’m still here.

And I’m still going to hold up mirrors. And I still get emails that emotionally hurt me every day. EVERY DAY. Because people don't like change. I don't like change. And yet I must change.

Change is terrible, change is wonderful, change is unavoidable.
My father told me a story: how at a party people kept saying to the piano player, “Oh, I’d give anything to be able to play like you.”

And the piano player said, “You can. You just practice eight hours a day.”

My father wanted me to understand that I needed to dedicate myself to perfection, to being ‘godly’, to being a perfect human being. Of course, the more I looked, the more I found I was not a perfect human being at all but full of flaws in action and emotion.

So I amended the story and I tell people the secret to playing like that: it is to get a piano lesson. If you want to play the piano, if you want to change, if you want to accept yourself, if you want to learn a language, if you want to do anything, the thing that stops it is….you. Tomorrow start with day one of playing the piano. And in a year, you will have played the piano for a year. And in five years, you will have played the piano for five years. All it takes is a day where you start.

So tomorrow I will have my post done. Because I work on it day by day. And because it is the things which are NOT said which are the very things that need to BE said. Like how there are no ‘muggles’ in the world of Harry Potter, and there are no ‘Neurotypicals’ in this world. Because if relationships have taught us anything it is that we all think differently and there is no way to know what another person feels or thinks without them letting us know. Six billion brains and no ‘typical’ among them. And that is tomorrow.

Oh, the self loathing, there is no one else with the potential you have, the contributions you have to share. If we could only put as much energy and focus into that as we do building our cages of the mind, we might feel that all so elusive and unique emotions: contentment, happiness.

Wednesday, January 26, 2011

Wish by Joseph Monninger, and the three types of people met in Chronic/degenerative illnesses

I read Wish by Joseph Monninger, recently published book about 11 year old Tommy with Cystic Fibrosis who is on a ‘Make a wish’ trip with his 15 year old sister Bee, who is surrogate mom and caregiver. Grace, the mom spends her energy landing loser guys and disappearing for nights and days. Wish shows a lot about how people interact to those with obvious chronic diseases, and life shortening ones. Bee, as narrator, shows the real and fake faces people put on, the assumptions people place on Tommy and as the caregiver, is a strong voice as she wants Tommy to get his dream trip. Also, it gives the physical aspects of living with Cystic Fibrosis (a patient with Cystic Fibrosis also features in Mercy: The Complete Series, the TV series about Nursing, and thus, includes chronic illness, as doctors may only care about the disease, but the nurse must advocate and care for the person).

Tommy loves sharks, the great white in particular and he wrote up his wish so that he could go out to California, where he is friends online with Ty, a big wave surfer out of Mavericks who had a shark attack him, and chomp his board. He is supposed to go down in a cage, to see the great white shark. That’s his dream, his wish. Except that everyone but Bee assumes about Tommy, no one listens, but decides for him what his wish is, what he must mean, that he is just a kid after all. So he is greeted at the airport by a volunteer who has a cap with a shark fin on it, and plunks it on Tommy’s head. This is not the way to greet a marine biologist. Tommy talks online to marine biologists, he is on shark online boards: he knows every attack, every kill zone, and why the great White is dark on top (they get sunburned), how they put their eye above the water to look for splashing, he is serious.

What happens when you want to be taken seriously, and people don’t because you are sick? Talking about his ‘wish trip’ to the dive cage:

“Still,” Charlene pretended to shiver. “You’re brave.”
People always said that kind of thing to Tommy, as if saying he was brave or smart and daring covered the fact he had cystic fibrosis. They figured the teeter-totter had dipped so far down against him that they could put anything on the other side and he wouldn’t notice it was phony.
While they had approved his trip, the group had no intention of him going into a cage. Cystic Fibrosis stops the body from absorbing fat from food like other people and the lungs are always full of fluid. So Tommy is thin, and takes vitamins, but is still undersized and doesn’t put on weight, a stick boy at 80 lbs, who will die in his 20’s. It is a Chromosome 7 genetic transmitted carrier, and to keep breathing he wears a $10,000 vest that vibrates, to free up the crap on the walls of his lung. And he has to have inhalers around at all times, Pulmozyme for when he can’t breath, because if he can’t do the vest or the inhaler, then he dies. And one part of this book which shows that the author doesn’t have CF, is that going on a trip without the fear that the vest may break down. Because at home, there is always a back-up, the hospital or something, just as there is for me, but to go out on a trip, with a vest that they can’t afford to replace, that is walking the tightrope without a net.

Grace is busy making the moves and phoning Bob, who she met on the plane, and Tommy finds out that the boat which was supposed to take him out to see the sharks is going to have a group of kids on it. Because people decided ‘it is all for the best’ or ‘he isn’t serious’ or ‘he won’t mind’ and after writing the essay over and over and getting his wish approved, it is only hours before he finds his wish isn’t his. It is a vacation for his mother, and it is just a wish to be bundled with other ‘good works’ for the organization. Finally at Pier 39, he sees seals, just after finding out that his boat and trip aren’t ‘his’ and his mother was trying to be a public figure of the ‘perfect mom’ before ducking out for calls to Bob (who didn’t know she had kids) trying for a hookup, using the money given by the organization to cover costs for Tommy’s “Wish Trip”. And so when she demands he stop watching the Seals and take a picture instead to show how much fun he is having he doesn’t turn, or respond:

..he had taken the shark hat and worn it like a good sport, and he had accepted the news that the other kids might be on the shark boat tomorrow, all without protest. But now the seals lay right in front of him, the real animals, his shark’s favorite food, and no one on earth was going to interfere with that….He had finally reached his shark’s world and though it’s probably crazy to care so much about something that you refuse to undermine it in the smallest way, he did and I admired the heck out of him for that.
The next day, a bus load of kids from a school for the disabled and they are going to be on the boat for whale watching and the shark trip is a far second thought. But they thought it wouldn’t matter to Tommy. The volunteer who brought the hat, Mr. Cotter finally understands that his idea of what Tommy should want is not the same as listening and accommodating Tommy:

“You look after him, don’t you?” (Mr. Cotter to Bee)
I shrugged.
“Taking care of someone can teach you a great deal,” he said. “It’s troublesome, and it’s easy to get annoyed, but your heart, well it gets stronger. You do it for Tommy, of course, but you do it for yourself too. I took care of my wife at the end and I wouldn’t trade that time.”
“Was she sick for very long?”
“For quite a while. More than two years. I learned to love her in a different way.”
Back from the trip, Tommy cries and Bee says what those with chronic illness experience know all too well:

(Tommy) “I thought it would be different. I thought I was going to dive in the cage. That’s what they said. That was the whole point of coming out here. But it didn’t happen.”
“You saw a shark,” I said. “And blood.”
“Anyone could do that.”
(Bee) “I’m sorry. I get what you are saying.”
“It’s not your fault.”
“I know. But I understand what you mean. It was nearly what you wanted, but it wasn’t, and now you have to pretend that is was, right?”
Grace has gone and doesn’t come back that night, or the next day. So Bee decides to salvage the trip and they take some of the money from the envelope and go up to see Ty (and his little brother, also 15, called Little Brew). With Ty, Tommy can be Tommy, no expectation or projections, and they adjust to the living of Tommy, making jokes about his voice in the vest. They and Tommy play along so that the thing you have to do with a gun pointed at your head twice a day, for as long as you can remember, and as long as you live becomes fun for one out of the 8,000 days.

Ty is going to take them surfing the next day, before they take the plane back. And Tommy sees the board with a great white shark bite in it, and while it isn’t the shark cage, it is having friends for the first time, and people who groove with you on your disability time and wavelength. Ty makes money filming big wave surfing for hangouts and clubs and other sports where the reels are projected on the wall, and then change every month. First Bee rides down the wave cradled by Ty (in his 20’s) and then it is Tommy’s turn, in his life vest, with his surfer name they gave him the night before from his pale skin, Snow Pony.

It was obvious they had all talked about Tommy’s Condition and they all tried to help. Tommy ignored them. I saw his jaw set as he tried to climb up onto Ty’s board as I had done, but his arms were too weak…then Honey came over and let Tommy use his board as a second point of balance, and with everyone helping, Tommy finally clambered onto Ty’s back. Little Brew gave out a whoop, but you could tell it was forced.

I wanted to stop Tommy. It wasn’t a good idea to let him run the waves. I knew it. Everyone there suddenly knew it…

Then Tommy surprised us all.

With extraordinary effort, he pushed himself onto his knees. Then inch by inch, he lifted the top half of his body so that he knelt on Ty’s back, his hands slowly leaving the safety of the board…He raised himself, only for a second but for that second he surfed as others surfed. He stood, as much as could, proving something to himself. ..He was a boy and he was on a surfboard and he did not want to be the sickly kid. But he was of course, and that was in his movement, too.
And things go very wrong. But would Tommy have chosen to do it again? Yes. For there are some moments, which are stolen from the drudery of chronic illness living, and the disappointment of what people have turned our dreams into, and our disappointment at what dreams we have left. For us, things take extraordinary effort, because that just is, it isn’t brave or inspirational any more than studying hard at school to get into a good college. We want a better life, and that’s going to cost, in effort and body, even if that better life is just a day or a moment.

Wish is an excellent book about the interaction of chronic illness’ and the way people react. Some, in fact most, run away in various ways, distance themselves, or ‘if they happen to have a free afternoon’ they might see you. Which is like announcing they have no intention of friendship, for friends make regular meetings, plan things together. So there are those who, like ‘Whack a mole’ pop up a few times a year, because they can’t get past the barrier of what they imagine (either that you are, or what limits they have around illness) to find the real you.
In chronic illnesses, in visual degenerative illnesses, in life shortening illnesses there are the three types of friends who stay. One group will never admit that you are sick. No matter how bad it gets, they never use the word ill, or sick or dying. They talk about leaving the hospital like inquiring about a train schedule. And the numbers who do this are more than one would expect: about 25-30% of those who stay.

They project their assumptions on you, like the volunteer did on Tommy, like the organization did. Because it was ‘for the best…because…you know.’ Being around these people is hard and tiring. They drain your energy whether you try to live up to their expectations or not, the fact that you are still ill seems a burden on them, a sadness you have forced on them. And as they continue to not acknowledge it, they can’t express dislike of the disease when things go wrong or for example I have to cancel a meeting or activity. They are mad at me: because if you can’t talk about the disease, you don’t know me, because the aspects of the disease are failings in my (insert assumption: character, will, positively, etc).

As it can become surreal, they can only be honest when I or Tommy is hospitalized and unconscious. I have watched while someone who refuses to accept that a person has cancer is irritated because they have to go to the hospital to ask if the person is done with the book they lent them, while the person is helpless and having their clothes changed. Do they think if they ignore anything that implies illness it makes the person feel better? The person is suffering and grieving, and they can’t be a part of it, because they refuse to accept it happened, like someone refusing to accept a suicide occurred.

I’ve had careworkers quit (people to take care of ill people) because they didn’t want to care for me, because they don’t want to think about something (getting ill themselves?) and I remind them of that.

The second group are the ones who ‘accept’ you like those who ‘accept’ your being gay, but still hate pride parades. While they want to know all about your illness they either cut you off half way, saying ‘That’s enough’ or just ignore what you say. Then, over time they constantly act in ways that endanger or exhaust you, showing that they might know things in the head, but aren’t planning on changing attitudes, habits or their life to be willing to accommodate you. The mouth says they care, but the actions say they care…about themselves, but not you. Because going left or right is a choice; but taking heart medication at a precise time isn’t. And to treat both as the same makes them scary, and dangerous.

Do they refuse to accommodate because it is easier than changing? Or because they want to see themselves as a friend, but aren’t willing to change to do that? Virtually every day, a person, today is was a woman who KNOWS and states how I can’t remember, can’t remember beyond a day, but then asks me questions about the last time we met (me: “I don’t know”).

It took a couple years before I stopped adding, “I’m sorry” to “I don’t know.” Why am I apologizing for a disease symptom? Why am I ashamed, or need to ask forgiveness for being ill to anyone, much less to a ‘friend’? If the disease does this TO me, then I am the one who is being inconvenienced far more than the other person. For the women, my answer was ignored (as it always is) and the questions continue, including her asking what movies I have seen in the last few weeks that are worth recommending. Maybe I used to recommend good films to her. If so, she isn’t talking to me, but to a past ‘me’: the ‘me’ she wants. People often want the ‘other’ you, the active you, the you in remission. But they forget the baggage and stuff that happened during those periods, just that you weren’t like THIS. So they blunder on, demanding that I or Tommy BE what we are not.

This second group CAN be made to accommodate you, but only after they make a large fuss and then mention the trouble in accommodating you many times when you are there. Would a friend want to distance you like this?

All this only humiliates me. It humiliates everyone with a chronic illness, degenerative illness. But we take it, because they tell us how they are our friend in the same way they imply how difficult that is, and we take it because we are so lonely. And because these are often the individuals in charge of care, of health facilities.

The last group, which is small, and 10% if you are very lucky, but honestly maybe just one or two people: those few who know that you can’t have the thick juicy happy times without the thin and horrid times. These few are those who accommodate without a fuss. Who recognize what parts of life are grey and try to make those bright, they bring themselves to the worst parts, so that you are not alone. They accommodate you at best and at worst. For Tommy that was Ty and the surf crew, who helped him reach a dream, a dream with the danger of life and death (not a lot of 11 year old C.F. 50 foot wave surfers), who gave him a nickname, a place to forget how different he is. These are the ones who make us feel a full person again.

Most of the time I don’t feel like a person, but a problem. What does Tommy think of a mother who disappears on sex hook-ups, no wonder he idolizes his sister. The way people treat me or react to what is just the crappy part of the day to me says I am not part of the ‘human’ experience. When I am too exhausted to try and fit in anymore, when I am too exhausted to accommodate those who are able bodied, then I find those who know I am dying grow frustrated, and have reasons to go.

For me, who has such little human contact, even a not so great human contact is better than none. So the leaving hurts, double so because I was unable to pretend to be something they already mentally know, even if they haven’t emotionally processed it. How can I tell myself it isn’t my fault when they just disappear, or I see them leave?

This third group, who know I will not remember a postcard I sent them and send me a picture of it, or describe it in detail without making an issue of it are the small times when I feel that I still have worth, and that I am still human, or mostly human.

I was fortunate to spend a Xmas dinner with some people who were in the third group and didn’t need to finish my sentences (due to brain fog, and speech problems, I am often lucky to get out two word with the first group before they finish my sentences for me…incorrectly; while the second group gives me a chance, then steps in as I get tired and not only finishes sentences but starts and gives the whole sentence for me…..also incorrect – the energy it takes to say over and over, trying to get enough steam to get the sentence fully out is so draining, I begin to wonder if this is some sort of game to them, as I begin to gasp for air).

So to spend an hour, but in this case a whole evening with people who let me stop for seconds, for even up to a minute so I can breathe, and gasp and then continue as if it was nothing is a blessing. That is what makes an experience great. A bad experience is when the food server finishes your sentences…wrongly, on your order, and leaves. Why? It is because they are intolerant or scared of speech problems. But those who bring the food cut up for me, who listen to what I have to say and engage me at the level of intellect I am at that time are somehow more than friends. I realize the level of energy they must put out to be calm, to be deliberate with me. Often they are those who have had illnesses, chronic illnesses, or accidents themselves. They understand how important it is to have a voice. And to have a group that, yes, slows down to the speed of the slowest member – which is now me.

That is true friendship and love.

They asked later how I was, and Linda said that I passed out as soon as the car went down the road a bit. They were concerned but Linda said it was good, “She spent all her energy being happy.” Those are the diamond experiences of this part of my life.

From Wish:

Later on Tommy sighed and said he didn’t really know why he loved sharks, but that it didn’t matter. You didn’t have to explain why you love something.

He said sometimes he thinks he likes sharks because his illness made other people leery, made them afraid that what he had could pass to them somehow….creatures ran not only for their lives but because a shark was the other side of their characters. So he was not afraid of sharks, he was a shark, and CF marked him among other people. That is why Ty and Little Brew meamt so much. That was why one day, filled all the way up, meant so much to him. In the California sun he had shed his sharkness, left it for a moment and he had risen up, a surfer, a boy again.
So, to each and every person who spends the time and effort to accommodate a person with a stroke or seizure disorder, or chronic illness, degenerative illness or other conditions, please know that it is noticed. Those hours filled up, those days filled and the sense of ‘other’ disappearing, along with the feeling of frustration…for the first time in a long time.

Any event with someone like that is better, even if it is just a cup of tea together. These few, they know they don’t have to fill up the silence with speedy chatter, or know when I need the chatter to help me focus from the pain. They speak at my speed, the slower speaking so I can understand and process what they are saying. For everyone who has ever done that, it is a great gift, and thank you. Each person you helped feel this way, they may not have been able to say it but thank you for not making us feel a burden, or pointing out our differences from the rest of humanity.

Being accepted, free at last to dream, to try, to BE, it is the greatest gift. And to accept is to know that it costs us, and that we already know the risks and would trade safety or play life and death for a single good day. We know that standing by to support us will be painful emotionally, and yes, I will die, and with that support I can be ME before I die, or writhe alone, an ‘other’.

From Wish:

What we both understood, I think, was that we would meet again like this. We knew it. The day would come when we would stand on either side of a hospital bed, Tommy between us, and that would be a different day. That would be a day without end
(part of this was posted in my blog for those who have life shortening illnesses, are terminal, or caregive or care for those who are: My undead life. Comments posted there should not be about ego, or memo's or 'Hey Beth, hope you're okay': I need someplace to write what I can't write here. Because I'm end stage. And because I need somewhere to talk, as I have no one to talk with (and few 'get it'))

I will be posting 2-3 times a week again. I got ill, and now I am recovering. The first part is scary, the second part is slow, slower than I used to but in this game, I’d rather be the slowest player and IN the game than not.

Wednesday, January 19, 2011

Calling all aviation lovers! Get your dream plane.

Calling all aviators and plane lovers! A few weeks ago I was on a looping and focused (but thifty...errr...mostly economical....except for a few postcards) buying spree of postcards to get just the right postcard for one person. And she likes planes. I sent her a plane postcard, and I still do, but I wanted to get the 'wow' factor of the first time. For me, that was a personal challenge - one which just happened to click with my mental damage and forgetting the day before except...oh yeah, I have to get xxxxx the perfect plane postcard!
So, wow I have an abundance of Airplane postcards with more coming in groups of 2 and 7 and 16 and...well you get the idea. Many of the postcards are one of a kind, ranging in age from 1907 to 1980. So if you are in love with types of planes, or know someone who loves planes, then please do me a favor and let me know (click on the picture to get the name, I used this picture because you can give the names of the planes). Because I spent days and days (about 40 hours in total over a couple weeks) finding these postcards a few weeks ago, and now, more airplane postcards will be coming in (along with a few old Steam Railroad and old Cruise ship postcards, some white star cruise lines). So if you love Clippers, the Bee Gee, the Mars Martin, or obscure military planes, or race plane winners, please let me know. Seriously. The early ford planes are coming, but I couldn’t find a lot of early Supermarine postcards. If you would like some of the rarer postcards (drawn by famous artists) of the China clipper or menu’s from the Clipper service (sent to me from Argentina!), please let me know because I want to make sure these go to the right homes. Yes, all pictures shown here except the rainbow and stack of sent postcards are pictures of postcards that are here for you to say or email, "I like Bee Gee, can you please send me one, or perhaps a float plane?" And I will send you one...FREE.

The Postcard Project is just about over. I explained why in a blog called 'my undead life', but it is because I am so ill I can’t send out postcards anymore, not like I used to, and these will be the last of the postcards going out, 5,700 is a good number and maybe I will make it to 5,850 or 6,000 post cards if I live long enough but right now, I have special postcards

that need a home (seriously, some very rare postcards not pictured here which I tried to get for several weeks before getting for my maximum price, plus a bit, and then postage to come from UK, Asia, South America) that need the right home.

Over the next week or two, I will keep putting up pictures of more postcards. All you need to do is spread the word to the aviators or plane fans you know and let me know (email is mpshiel@hotmail.com) what makes you or a friend of yours really happy. I don’t want to put up pictures of ALL the postcards, so what you get could be a wild surprise, but I have a Zepplin (the Akron), though I tried for many other period Zepplin postcards. I have US post early planes that are float planes with helicopter additions from the early 19th century (what plane is this???).
If after your requests or getting postcards you choose to look over the wish list or get a $5 gift certificate from Amazon, that would be a personal choice (link in right corner). If you don't, the postcard is still free. You ask, I send.

For me, the thought that each plane postcard I was sending was a bit of a disappointment compared to the first one I sent which amazed the person haunted me. I couldn’t stand that idea of disappointment so I kept looking, searching and finding (oh, from Dec 14 to Jan 16th my notes say). That kind of long term obsession is part of the stroke and brain damage, they say. It is focus, which without being led off of, the thoughts just go round and round ‘must get the best airplane postcards’. I thought Linda had caught it after a week, but now I see it went a bit longer than that. I think I better stop looking for the perfect airplane postcards (well after tonight!).

However it happened, it happened, maybe not balanced to get over 60 postcards to find ONE postcard for ONE person, but hey, that’s the disease and I sure hope I do find one that amazes them. Either way, these postcards are coming from four continents, and I want to make sure they go to the right homes. During that time, I have focused so much on that, and the legal art for the blog that I haven't focused on the needs for a life in an apartment. I have NO watch right now: my watch literally exploded (the pressure from my blood expanding my arm so quickly and so many times, caused over 16 fractures to the watch band). Linda found a watch which has the minimum requirements and put it on the wish list: that it has glow in the dark indiglo and that I can trigger it with my teeth if my hands aren’t working.

This weekend, while working on the postcards (47), that were going out, Cheryl and Linda called me over to see a rainbow.

My disease progression is such that I go from my hospital bed to power chair Indy, which takes me to the study computer, then to the bathroom and back to the bed.

On Sunday I usually sit in the Study, where there are no windows and write postcards and cards for 4 to 5 hours straight (OW!). So anything different is appreciated. I made it to the window to see the full rainbow. It had been raining since late Wed. night, and I hoped this meant the rain was over. It started raining 20 minutes later. But hey, I saw a rainbow!

Take the good where it is found, even when it lasts only for a minute.

I will have rare and unusual aviation, cruise and railroad postcards (mostly planes) coming in to me. I bought them because I love someone, and because I have a disease that made the love loop and loop and loop (which isn't bad, as I still love them, I just know way more about aviation than I used to). So I want to find more homes that love these postcards: If it makes you feel good to look at your favorite plane, then let me know. I just want to send out personal rainbows, because I know that having those seconds or minutes of just looking at something wonderful is beyond description. Let me send you a personal rainbow. PLEASE, spread the word.

Tuesday, January 18, 2011

A date out, an adventure.

This week has been a bit groggy, as I slept for 40 hours or so and then woke up with a fever. But last week, I went out on a date! This, Linda says, is something not done for some time (many animals of time). It also took a great deal of planning. But isn't that the point of going on an adventure!
So why does it take two to three days to plan going out? First is getting the sleep schedule lined up so that I am up and strongest when we want to go out (as I weaken each hour awake). So to go out at 7:00 pm, I need to make sure I nap at 5:00, and since I sleep every 6 hours, I have to move it from when I am sleeping on Monday so that on Wednesday I nap at 4:30. That way I can get up and be ready to leave around 7:00. That Monday, I was recovering from Sunday's postcards, so I overslept three hours to help me move the time. Then, there is the shower on Tuesday, since that takes two hours and exhausts me, not best to take it before going out.

Going out itself just involves getting my hair braided (by Linda, who does a fab job, and likes to do it), make sure the pain patches are changed, get assisted for dressed in my clothes.I am wearing my new top from Hot Topic of a rib cage with roses and thorns intertwined. I figure it will help the EMT’s find my heart if needed, and looks cool. Also wearing my leather jacket from the UK, which Linda said I wouldn’t wear after I got ill (HA! Take that Linda!). As you may notice in the picture, there are fans to blow the cold air (63-65 degrees) into the bedroom and then directly over my head and body, to keep my body cool. Or I wake up all red, or I get paralyzed (heat lock up the MS people call it), or can’t sleep. And ice under the pillow and beside my head, changed every 2-4 hours. Thanks to Linda and the pain patches, I can sleep – but that is at a cost of being up 3-4 times for Linda. Also, I have to take pain pills as well every three hours in order to sleep, and heart meds. This is why Linda takes well deserved respites and we have care workers to help me nap, so Linda can catch up on sleep.

Okay, off to the Canoe, which is a brew pub down a VERY steep hill going down to the harbour. I went up the long ramp from the parking lot to get to the door, and asked to go to the balcony section. Last time (when was that?) they told me it was wheelchair accessible. I was told to go back down the LONG ramp and then UP the street to an outside door. The street was so steep (like seattle and San Francisco steep), that I was doing 4 to 6 inches at a time. Ready, push! Ready push! When I got to the door, it was locked and could only be opened from the inside.15 minutes of wheeling and locked out. Beth is NOT amused.

Linda came (the pub has a parking lot but not a single blue badge spot there or on the street) having parked the car and we got inside to the balcony. I love the pubs that use all the local yellow and red cedar and fir. I went exploring and found that we were directly above the bar downstairs. Whee! This is the advantage of being in a wheelchair - people will let you go just about anywhere, so couples moved aside so I could see down on the bar. I was curious george on a trip outside in a wheelchair. I don't get to see new stuff often so I want to see it ALL.

We had a ‘groupon’ which is an coupon that is offered each day, for your city, and we get things like mexican or Thai food coupons for restaurants that offer take out (so we can have a 'going out' night when I need to stay in bed). One of the unique aspects of the ‘groupon’ coupons is that they include alcohol. So this night out of $30 cost us $12 back in Nov or so. We buy one when we have a bit saved, and it means a night out when we can.

I tried the beer (ack, aftertaste! Where is my carsburg export?) and then had the pint of cider. Oh yum, it was like super good apple juice. We also split a single meal of ribs, potatoes, green beans and the like. Linda liked the food and looked great in her jacket and shawl (which she STOLE from me). She wanted to take a picture of me with her braid in the mirror so you could see her handiwork.She is envious because my hair goes to the middle of my back now, plus showering every 5-6 days makes my hair look great.

That pint of happy apple cider made me the goofy blasted girl who was giggling, leaning over and trying to grab Linda’s boobies. I laughed at just about anything, and on the drive home kept saying ‘WHOOOOOO, look at the lights! Ohhhh, wow!” – all that on one cider (date me, I'm a cheap lush!). I should probably drink more than once a year. Plus about 5 of the 12 meds say, 'don't drink', but then the rest say, 'don't drive or operate mechanical equipment' and they know I am using a power chair (???). Oh well, I guess running over a few people in INDY doesn't count.

After I was amazed by traffic lights, we came back and watched some TV together (on the computer screen). It was our time. I don't remember much, the lush that I am. But it was an adventure and we did it. Worth a couple days of planning.