Wednesday, September 30, 2009

I never meant to come back from Hawaii.

In some days I will be heading to Hawaii, I think it is in a week.Some people think or say that I begged and emotionally manipulated my way to a vacation. Others have ideas about what Hawaii means to me. Most don’t know that all this time in planning I never believed I would return from Hawaii. Or that I worked on a suicide plan and started stage one because I believed that Cheryl and Linda were going to Hawaii to only make me happy. Or that I have spent almost a year working to go to Hawaii and 10 weeks working every day, every minute selling things, including hundreds of dollars of books. Nor have I asked for aid to go to Hawaii, or taken money with one exception (that I found out about). Times are hard. I don’t want to do that to my friends.

I have diminished mental capacity (in certain areas). I also have limited physical capacity. It has and will take me eight times longer to do the same blog as it did my first year of my disability. This naturally restricts what I can share about my life. Even though I work, work, work. I feel I am on a train where the events around me are rushing by, and I can never be in the same time stream as anyone else around me. I do not know what day it is. I know I had a disagreement with Linda, an argument. That was last week. I know that because someone told me in an email I read today, I don’t know what the argument was. That is what having no memory beyond a day or two means. You can come up and punch me today and I will be mad. You can come up in four days and ask me how am I, as it looks my nose is swollen and I will thank you for noticing and think you are nice but tell you that I have no idea what happened, I must have fallen down. That is one of my impairments.

So I am not going to Hawaii to make memories. I am going to Hawaii because I love Linda and Cheryl. Linda has never been to Hawaii. Cheryl has never been off the continental 48 states. I wanted them, my family, to go with me someplace where they could experience someplace new. I dreamed it, I dreamed what it could be and I wrote it on my brain board. But just because you try doesn’t mean it is going to happen. You simply don’t know what is possible until you try. So I tried. And I convinced Linda and Cheryl to try.

I will likely not remember being in Hawaii the week after I get back. I will return to my room, across from the construction, and try to survive the winter.

These last two days I have been on oxygen almost continuously because I pushed too far, and the weekend took it out of me. That is what happens, I do something, I plan something, like the plans I have on my board for getting my wheelchair onto the breakwater: something I did because Cheryl had never been on the breakwater. And I wanted all three of us to go. And then I try. And when I do, I do it all, I leave nothing back, no reserves. So I pass out. Or stop breathing. Or aspirate. I have aspirated into my lungs every day for nine days. When that gets infected, I get a fever.

Over the past 12 months, Linda, Cheryl, I and others who help have sent out the equivalent of $14,000-$19,000 to other people (in the Postcard Project and other ways), many people that we know almost nothing about. As one example, we of the Postcard Project have sent enough postcards for every mile to cross the USA: 2,900. If I live a few more months, you could drive from one coast of the United States to the other following the trail of postcards laid end to end. But they don’t lie down on the road but reside all over, here is a picture one reader sent of the postcards they have received.The Postcard Project, like Hawaii, was something I wanted to try. I wanted to believe, and put my heart, my money, what I could sell, and yes, my writing, to create a community which believed that people are important. In the 70+ weekends since I started, I have NEVER had a weekend without creating, matching and sending postcards: whether hospitalized, whether ill, whether passed out. Much of that is due to people who gave in ways I can never repay: financial support, stamps for the postcards, postcards, and some weekends, Cheryl and Linda physically carried me. One weekend I leaned because of fever, when not passed out, with an oxygen mask on my face, finding Linda and Cheryl having collected postcards from a list I made earlier of people ‘most in need’: the dying, the lonely, the children, and those who needed encouragement when tragedies had struck. People mattered. And, so when I was conscious, oxygen mask on and at maximum, I worked on postcards. Worked knowing if I died or was hospitalized that Cheryl and Linda would post the postcards I finished, or help finish and post the remaining ones.

Is it so strange in this world to say, “I will be there for you.” And attempt with all human effort to do so? I made a promise to people: “As long as I live, you will get a postcard through your mail box”

But I also have OTHER plans and dreams. And because I am open about them too on the blog, and open about my worries, or anxieties, I have many, many complaints, all Anonymous (I kept about 80 from the hundreds). The following is typical of what I get lately.

Anon: Why in the world would you have a wish list for people to buy you stuff while you are planning a trip to Hawaii?????
I guess the answer is: “the same reason other people do.” I didn’t go on a summer camp-out, or vacation, because I can’t go out in the heat. Many people did. Most people I know have wish lists. When I can, I give those I know and care about things that surpass or come from those wish lists.

Don’t worry, because the Anon’s made me feel so dirty, I eliminated virtually everything on those lists that was not for Linda, or a memory device for me (I can go look at the list and know what I am saving towards). I am EXTREMELY thankful for those who got me gifts off those lists over the months. I am, because in the nights where I was weak, in pain, or impacted and hurt so bad I wanted to cut myself just having something to stare at helped a lot. Ask Linda. Ask Cheryl, since I know she bought often. Or Linda who said, “I would do anything to take this pain from you.” Every Anon says that my life is a lie who hurts the ones I love. Mentally I am incapacitated in certain areas. I can regress for long periods. Telling a 5, or 8 year old that because they are alive and ill, the two ‘Adults’ who take care of them will never be happy, that ‘Bethie’ is BAD, that ‘Bethie’ is a liar doesn’t help. Telling a young teen from a sheltered society where she is taught only to obey that she did not obey, is bad, and she does things GOD does not like doesn’t help. Because it not only brands all those who give me care as liars (and co-thieves), but leaves messes, emotional messes and a human wreck to be cleaned up. It is easy to destroy. It is hard to love.

Cheryl bought off the list because she loved me and knew that things on the list, like a manga or book make me happy. She likes to see me happy. That is her choice. The DVD’s I worked and saved for on my own. And when pain makes me a bit off my head, having another reality to see and live in to distract can help a lot (thank you 21st century!).

Don’t worry, people don’t buy any more and I am fine with that too. I don’t understand time, and days and weeks and month starts or ends. But I know that my friends care about me, love me. And so if someone wants to be angry because I do need specialized socks, then I guess they will be angry.

When I give gifts to friends (and strangers, because I ‘feel’ they need it – to know the joy of spontaneous caring), which I do every week, my presents to others are ordered from around the world, taking a month or two to arrive. They are limited editions or rarities of interest which I spend time to find: from soap called ‘Blood’ from Villianess to out of stock limited edition 2005 cult stationary, or sometimes just Hello Kitty Gum and something fun like a Yo-yo. I get an allowance, I have ‘mad money’ which is put in my account and that I choose to spend it on postcards, rubber stamps I think people will like, or gifts to give to people is my choice, right? If you care about someone, if you LOVE them, then you want them to be happy. I love dozens and dozens and dozens of people, most of which I have never met most of which I will never meet. But I love them all the same. The Anon's would want me to think, "Oh no, what if they are a scammer!" If they ARE a scammer, and laugh at the stuff I send, then I hope they can remember the love of the act, later, when it matters. But truthfully I would never think of anyone who has emailed me as a scammer (Well, maybe when they told me I won the BBC lottery worth 12 million pounds, or when a princess in exile needed to put 15.6 million dollars in my bank account)

Some people, over time, we will write, email and gift each other regularly. This is a choice I do and a choice some who care about me do too because we like each other. My favorite plushies are all gifts: Rabid (the Squirrel) who has holds for quadriplegic hand grips and watches shows with me, Pounce (orange stripped tabby), HKA (My punk Hello Kitty Beanie Baby), Miko (The grey cat guarding me on bed days), and Eiki Eiki who holds Linda’s heart. And when I can’t remember who gave me the plushie, Linda is there to tell me.

When I have a bad episode, or regress, to a period where I am terrified of everything, Cheryl says that if I am given Eiki Eiki I calm down. When Eiki Eiki was made, Linda chose the heart to go inside, which she was supposed to make a wish. Her wish was for my life. Eiki Eiki holds my life: Linda’s heart.

I will soon be moved from here to Port Angeles, stabilized then a day later, moved the two hours to Seattle and stabilized again, then moved to the airport. I only spend nine days in Hawaii, but six to nine days in the 120 miles getting me safely to and from the airport. And maybe in Hawaii I will do and see things like float in lagoons of 100 foot visability and watch dolphins play (yeah, it exists). I might see the 1,400 foot waterfall in the Valley of the Kings (still inaccessible for wheelies), or the Green Sand made of semi-precious stones (inaccessible for wheelies). I could explore a tropical rainforest (so far inaccessible), or see a plantation town intact from the 1920’s (kinda accessible). I might see flowing lava, or ascend to the top of the mountain, above the layer of heat that makes the stars twinkle to stare at the stars, bare in glory. Or I might not, I might not see the 16th century Kyoto Temple, I might not see anything at all. And all those books sold, and all those DVD sets sold for nothing.

But I came up with an idea and I tried. And because of that idea, and work from Linda, Cheryl and I, now Linda and Cheryl says going to Hawaii is “okay”. We are going to Hawaii and all is paid for (or so they say to ME). Yet almost every place I have on my top list to go to has an explicit warning: “Those with heart and lung conditions should not under any circumstances proceed ……”

I never meant to come back from Hawaii.

I love Linda. I love Cheryl. They know I do what I must to survive, whether that is badminton, or a 10K. And I pay the price. Is my risking my life worth looking at stars? Yes. Is my risking my life worth flying to Hawaii? Yes. Is my risking my life worth spending 50+ hours working only on postcards broken only for sleep? Yes.

I do not want them to say “She was alive, but she never lived.” In many ways, I would that people remember what I tried to do: care about people and remind them that they matter. My name doesn’t matter, the idea does. I wanted all people but particularly those alone, depressed, in darkness, or in trouble knowing that someone worked every week, regardless, because no one should be in those states without people caring. And someone did.

This weekend, I came up with the idea to go to New Orleans. Cheryl has never been to New Orleans. Never been to the French Quarter! This is a tragedy that must be remedied!

Right now, it is just an idea, a train trip to New Orleans, where I can lie and watch the country go by. But I don’t know what is possible until I try. So maybe I will come back from Hawaii. Even though I will know of it only from pictures. Pictures I took. And Linda and Cheryl will have memories. And maybe this winter I will dream of New Orleans.

Monday, September 28, 2009

Ecstacy: we go to stamp exchange (Postcards) & go to see squirrel friends

As the last weekends had been the 10K and the breakwater, I needed to catch up on postcards from the postcard project to make sure all the people who had requested a postcard or hadn’t gotten anything but bills lately got something nice! Plus, Linda had found a ‘stamp exchange’ starting at 10:00 am at a local hotel, where those who do stamping, using the rubber stamps we use on the postcards were going to do an exchange. So we worked until 4 a.m. matching the names from the list ‘just the right’ postcard: everything from WWII pin-up girls to exotic music instruments made in New Zealand.

We only got a few hours sleep but wanted to be there when it opened at 10 a.m.. We didn’t know what to expect, as it could be people asking huge prices or only a few stamps. We wheeled into a room to find myself in heaven: Tables everywhere stacked with wood blocked stamps and I couldn’t decide where to wheel to first! Ahhh! What if others got ahead of me? The collecting bug was on me. Cheryl and I went to the first table and I immediately found a Coronado Tiger. We only use about four companies: Coronado (they do animals, large blocks of wood and deep cuts!), PSX (out of print and expensive! One woman there said she paid $75 for a single wood blocked stamp) as they make unique series and images, Hero arts (top quality and deep cut), and Stamp Oasis (out of print as is Our Lady of Rubber and Magenta). There was a Tiger for $5 (if I use it 100 times on postcards, that is only 5 cents a use!). It normally goes for $30. Do I look happy holding it and a PSX complex farm yard that I found for $7?
So I went to each table, finding PSX, Hero Arts, (that was the only Coronado I was to find), and other companies, looking at the stamps and building a stack, then paying and leaving Cheryl to put them in the bag or putting them in my backpack (I got a compliment as someone noticed how cool it looked when I came in!). I hit a table every 2 minutes on average. All Linda said was, “You should have seen her at the book sales”. I got a set of Hero Arts flowers for $4 (that is 4 stamps for $4), I found another set of 4 at another table, and 2 mini's. These are the kind of Stamps we order five of, and pay $40. It was like a giant boost to the diversity of stamps I have and can send out, one section mostly botanical, and then other was cars and people. Some of the really obscure stuff wasn't there but there was a lot of really good things like borders and a few animals. But yes, after I did the rounds ONCE, Linda came and looked for child appropriate stamps and then I looked at other stamps I had missed.
And so at the end, this is what we got, in terms of ink and stamps. We FINALLY got some dark green (deep forest green) as well as a good purple. Ahhhh, I needed that. I even managed to find a Stamp Oasis Japanese stamp of a Lady doing her hair in her kimono in front of a lacquer table. Go Stamp Exchange!

So, then it was back to matching and after a nap, we started stamping. Well we didn’t start, first we had to choose ONLY a few of the stamps we had bought that day for what turned out to be the 81-84 postcards for the postcard project we were about to stamp. It was hard but of course the TIGER had to come. (I love that tiger, he looks good in black and white but he looks LOVELY in green for some reason). All the stamps but one are new ones we just got at the stamp exchange. Cool, yes? Linda found the mini monkey stamped in the corner.

So we had the stamps then we spent and hour trying them out with different colors to find out what the right color for each stamp was. Because of the neuropathy I can’t paint in the different colors, I have to find one color, or at best two (press on one side with one color and on the other side with the other) to stamp with. Linda can do a few ‘special’ ones with her secret practice, like the cat and chasing the butterfly and I can, after 30 minutes of work, could do the thatched roof farm, with the watering can and lettuce, the greenhouse, the stone wall, the ivy, trees, door and wood bench so it looked somewhat natural – it was hard, hard work. I also did the red berries, but only once or twice and then my hands couldn't anymore. Also with the different textures, it meant a slick texture postcard came out mushy looking while a different paper might absorb all the color. As has happened here with my lady doing her hair in the Kimono, but I was still very proud to see these Stamps, from the ‘Exchange’ (our money for their stamps!) in use. It was great to know these postcards were going to New Zealand, Australia, UK, Canada, US, Africa and other islands and hopefully people would like the images (who could not love the tiger?).

We didn’t finished until 6:20 a.m. and went to bed and slept. Then it was up and writing for me, writing and writing, all the US and overseas postcards, plus any post stamping stickers. Hour after hour, I sit in a room and think about a person, then write a message, and notes about my life, then on to the next card. 68 postcards went out today (already moving by van and airplane!), and the rest will be ready tomorrow. But after three hours it was time for a break: Squirrels.

The sun was going down but it turned out that there were a FEW squirrels that wanted to see a wheelchair (with peanuts)!
Cheryl met with her disability friendly squirrel who climbed her leg to get the peanut so she didn’t have to bend over and hurt her back. Here we wait to see if it can figure out to climb.

Ahhhh, it found it!
Yes, it turns out with winter coming, the squirrels had overcome the earlier shyness from weeks ago and were up, DETERMINED to have peanuts!
Even Linda who was sitting and taking pictures had squirrels sneaking up on her around the tree to investigate the ‘bag of goodies’ on her lap. Once it found the ‘Mother Lode of Peanuts’ it was rewarded with a peanut and stayed close by while eating it (Good rule that: once you know the source of food, stay close by!).
Here I am with a squirrel who seemed to recognize me in my lap, it just keep looking at me, with a peanut in the mouth, so I got out another and gave it. But it still sat there with two peanuts in the mouth. So I pet it, just a little, because, hey, it already has the peanuts, and was hanging around. A very pleasurable break.

Then back to the room and to finish the last of the postcards. I hope many people get postcards this week. I tried to find anyone we had forgotten or overlooked for a while. That was my weekend, how about yours?

Friday, September 25, 2009

Badminton with Beth: the secret facial expressions of power!

Sometimes badminton can get a bit ugly. No, not the attitudes of players, I am talking about my facial expressions.It turns out I have spent SO much time alone that I have forgotten the first rule of socializing, “smile, smile, smile!” You look so pretty, oh so pretty with a smile! No matter what you are doing: Go Social Conditioning!

One of my workers saw a picture of me from a few years ago and said, “Wow, you must of gotten that taken when you were REALLY young!” Um, er, I said, “Actually, auto-immune diseases are not really known for being great on the skin.” Sigh, I better start dragging out the facial night cream, and doing make up on days she comes, since I can’t take that kind of slapping twice. Ouch!

It had been two weeks as I had to take the Wednesday off from after the 10K. I just did two games and they were better games, lighter, close, again, loses, but close matches 12-15 in one with a comeback. I just got brain tired. One guy was a tough player and I served several aces on him. He was not amused so the next game he served all over, I had to be ready to back up, to swivel sideways, to do anything, and after he got two aces, I shut that second game down and we made another comeback, but lost. It was intense but fun-intense. I tried my hardest, and that is all everyone asked of themselves. That type of fun where you do something together, everyone trying hard, and see what happens.
Please remember, I am a trained professional, do not try these facial expressions at home. Like you would!

This is about as good as it gets, at the beginning of the match. I am developing a pot which has something to do with ‘cut muscles’ or ‘nerve dead supporting muscles’, it is irritating because I actually have a firm hard stomach underneath but there is the pot. I really, really want to go on a diet but Linda says since I am still malnourished in several vitamins and other stuff I can’t (I have a pot, yet I am malnourished?). Anyway, as the match goes on, I pull out all the stops, which includes the staring at one side while serving to the other (misdirection) and the confusing my opponents with the ‘What the hell is wrong with her?!’ psych expression! I am just telling you that, I would love to say I intended that face instead of just finding it on the pictures later.

I am noticing now that I need not just more physical stamina but mental stamina too. As you can see here in an early shot, my opponent is getting ready to slam the yellow birdie, and I am positioning myself to receive it and return it. That is how badminton is supposed to be played. However, when I get tired, I tend to have to remind myself that I am still in the game. So here we have the ‘wow, look at the birdie go!” expression when I really should be wheeling myself into position for when they hit it back, but no, I am too dazed and fascinated by the pretty birdie in the air!

Of course there were exceptions, like this face where I am going, "Is it in, is it out, looks out but, OMG! It is IN? It is IN?" Remember, these are advanced facial looks and I do not suggest an amateur try them. Here as you can see, I am using the ‘mind focus’ technique to ‘will’ my birdie where I want it to go. Either than or I am low on oxygen and a little stoned, not quite sure. I have noticed that while with repetition I can hit the birdies that come in range, I can’t deal with speed beyond a certain level. It is just too fast for my nerves to get to my spine or brain and respond. So I need to stop watching the birdie and watch the player, have my racket up and be where the birdie might be is my best bet to work back up to an adequate player.

For today, lots of wheeling and stretching and I sweated a little bit (odd thing, I shaved my pits two weeks ago, and only a very little has grown back, I think the sweat in my pits is limited to those glands, and I need to get more ‘glow’ going, but it cuts down on the shaving!), a slight sheen on my torso. So far nothing on my head or neck, both of which are causing overheating issue. But still, good plan, and when I return, on to boxing!

Wednesday, September 23, 2009

Lie #5: “I can’t handle this right now” and going on.

I’ve been hit by one of the most painful lies from a few different sides over the last few days.
When I listed the lies the other day, I missed this lie, a lie the person saying it tells themselves, to excuse what they are about to do to you. It hurts me the worst, and hits at the lowest parts of my life. Variation are “I just can’t read your letters/blog because I can’t handle any more bad news right now.”, “I just need time to step back and ‘process this’”, “I don’t know how to handle this”, or “I just can’t deal.” These statements come from AB people, probably you thought of as friends, people you may have been there for in the past. But when your time of trouble comes, when your illness comes, when your diagnosis comes, when you start getting visibly ill THEN like shaking a tree for rotten fruit, friends fall into two groups: those who stay (the few) and those who run away (with a lie to make it a virtue).

Those who are burnt-out can’t even survive really by themselves. I can understand that. Someone in a deep depression is just hanging on and surviving is all they can. I understand that (in fact, this person usually will have the ‘I can’t handle the negative place you are’ bailout of friends also when most needed).

People will decides that they do not want to face the facts and consequences of a friend/partner/mother/father/grandparent/child who is dying/has chronic condition/has chronic invisible condition or is going through burn-out/unemployment. And let us not delude ourselves, it IS a decision: they come up with an excuse and run away.
For those who act that way, I still care for them as a person. I find their acts despicable.

Why? Because that child, or friend, that mother, or partner who is dying, who has a chronic condition like depression, or other visible or invisible ones: they CAN’T run away. Oh, they want to. Some days they might pretend for a while that they can, but in the end, the requirements of living with these conditions means that if not managed, if not resisted, if not maintained, if medication is not taken, then the consequences are extreme. So no, they can’t run. And so they watch the back of a so called friend or family as they run off.
Running away is easy. It is always easy. It also makes the burden harder for those who stay, and for the person who is struggling.

Okay, hands up anyone who WANTS to get a diagnosis of cancer today? Okay how about ALS/MND? CFS/M.E.? Bipolar disorder/Unipolar Depression? Lupus? Lymes? Who wants an accident which will affect their spinal column and thus the nerves below that point? How about a layoff and unemployment? Come on, I can’t see any hands raised! What, no one wants a nice terminal illness today?!

No, nobody WANTS those things to happen to them, which is why when an AB friend tells you that ‘they just can’t handle it’ explaining why they will be/have been ignoring you, then it really puts the boot into you. You think, “What, because they thought I could?”

Be honest. Say, “I am self centered and cowardly and while you might be there for me, and care about me, if I CARE about YOU, that means that I might get depressed and when I go out to dinner, start my exercise program, go to movies or when I am on vacation, that CARING could make me feel…..bad. And I don’t want that.”

Yes it could make you feel bad. Because when you care about someone who has something bad happen to them, then you feel bad too. And sure, people have their own lives and issues and need to take breaks and can’t be there all I time. I can’t. There are more I would like to be there for, but I can’t even control or predict my consciousness. I try. That means trying to read blogs once a week, or two, or sending emails back once a week, I try.

Why, beyond the cruelty of a ‘me, me, me’ generation does this matter? Because this is the lie that will hold you in a prison of isolation. Because every person alive will go through a dark time; their period of suffering. And if all you know how to do is run. Then you have no friends. Because every time a ‘friend’ has bad news, isn’t cheerful or funny anymore because their child died, or they have a Flare, or an MS diagnosis, and you ran, who do you expect to be there for you? Who will care about you? No one.

And you will face that darkness alone.

If you are reading this, commenting, then this isn’t about you. In fact, you are probably one of the people who have been ‘gifted’ with those things no one wants to raise a hand to receive.

I have been ill, coughing up bits of aspirated food and other particles. Apparently last night I was delusional and telling Linda that the ‘radio in my stomach’ was telling me to do things. Pain, exhaustion, fatigue will do that. Make you curl up for some time.
But then you get up again. Not because you want to, not because it is fair, but because whether you can ‘handle it’ or not, no one will save you but yourself. Today, a doctor who said last time that this had become ridiculous and they would take me as a GP told Linda and I that “Well, I can’t really take on the responsibility.” What is that? #30? So we suck it up and go on. I went to badminton tonight. I will post the pictures tomorrow. Because keeping me healthy and alive is my job, my full time job. Whether I am ready to ‘take on the responsibility’ or not.

Monday, September 21, 2009

Fly or Fall? Three hours on a Saturday

Fly or Fall? I face the wind, on the breakwater, face the sea and imagine I am a seagull, riding the strong current.
We stopped first at the farmers market. More on all this later, as now I might be fevered and sick, but I don’t regret how I exhausted myself. Live. I’ll let the photos do the talking. No, not local seafood but soaps, hand carved by a local soap maker, who starts the night of the market for the next market. Then some fresh peppers. The sun shining. I found myself a small Japan town, only two stalls wide, where customers wearing kimono’s speak Japanese as they buy food for Udon, with Daikon’s and other vegetables.
From there we went to the one place I used to jog all the time, every day for years: The breakwater. When I was in Wales, all I wanted to do was jog it, I yearned it, I dream of jogging it. Longer than a km, it has a path to get on then a pedestrian u-turn to squeeze past in order to stop bikes, and roller blades. We had to dismantle the wheelchair completely. I hurt my arm, Cheryl hurt her back. We paid. But we rolled.

The wind was high and smashing the water against the century and more old stones, sending up jets of water and covering the whole walkway with spray at times. It was the breakwater. I was home.

Wheeling back we saw a large seal diving in and out around in the protected side, along with sailboats and pilot boats. So much more to tell…

Back home for hot chocolate and doing postcards. There is beauty everywhere, all over the world. It was a good couple hours. Fly or Fall.