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.

21 comments:

Cereus Sphinx said...

*Hugs*

Anonymous are usually nasty little trolls. Please don't take what they say to heart. They probably have no idea.

I'm so happy you're finally going to Hawaii! If you go and the worst happens, know that I care about you and love you. Otherwise have fun. There should be something in the mail at Port Angeles soon. A welcome home present if nothing else.

Victor Kellar said...

Well, I certainly want you to return from Hawaii but I know you need to go,I know you have many reasons and I know you always measure the risk in terms of living your life, just like the rest of us

Fuck the anons. Seriously. They're just cowards. Everyone does what they want, for their own reasons. Including those of us who send you gifts, who help you out. Anons should email me,and ask me why I do these things, if they think I am some simple minded fool falling for a scam, they will be quickly corrected

Live your life,Beth,as well as you can. The only people who should influence you are those who truly love you, like Linda and Cheryl, not anonymous cowardly voices who haunt the interente

I may not understand everything that you do, I may not agree with it all but so what? You're human, you're an individual, as am I, we are different but the important places are where we intersect,not where we differ

I wish you so much luck in your new adventure, and hell yes I want you to return but if you don't make it, at least you went out with your wings aloft

Side Note: I bought a new picture book, a retrospective of the work of Ugetsu Hakua and you had one of his illustrations,from Burst Angels,in this post. Quite frankly,it cost a lot and I'm keeping it, but I'll scan some images and send them to you and probably print off a few for your little picture album

Anna said...

I hope that Hawai will be marveloous!

Nancy said...

I think New Orleans is a great idea, and I hope your Hawaii trip is relaxing and fulfilling!

Veralidaine said...

I think the train trip to New Orleans is a wonderful goal for after Hawaii. I have never been to either Hawaii or to New Orleans and I can't wait to see your pictures from both.

I still do my best to get things from the wish list as often as I can--after my period of unemployment and with so many of my pets being sick lately, money has been very tight.

Please do come back from Hawaii. I want you to get to share more new experiences with your loved ones. And please don't let the anons get you down. It is sad that some people enjoy picking on anyone who looks vulnerable. Little do they know that lonely and sad as 'Bethie' may be sometimes, EFM is still lurking in there too.

Stephanie said...

We love you too, Beth.

When you talked about the warnings on the things you wanted to do, with a tone that that wasn't going to stop you, I think I felt resignation. I suspected you were going to take the chance anyway. Much as I'd rather you stay alive for far longer (and your ability to stay alive despite the odds is pretty amazing), it is... also kind of epic to die looking at the stars rather than simply giving up on life.

I can only wish and hope that you don't go through with your suicide plan. Making plans for New Orleans afterward is a better idea.

Elizabeth F. McClung, your name AND your idea will live on.

Lots of love,
Stephanie

wendryn said...

I'm really, really glad you are going to Hawaii and that you have another goal to look forward to. I am going to hope very hard that Hawaii is good to you and you enjoy it, and that you end up with lots of beautiful pictures to look at during the winter.

I think, despite the silly Anons, that you should keep what you want on the wish lists. I have everything I need, and I have a wish list - there's no reason you shouldn't have it there. If nothing else, it's a note to add to your brain board of stuff that you'd like someday.

Take care, have fun, and I will keep writing! I'm glad the plushies are still helpful. *hugs*

Shea said...

Thanx for the post cards!! But the online code for the entertainment book online off of ebay. It saved me tons when I went to Hawaii. Lots of two for 1 dinner coupons. I hope you enjoy your trip and have a blast. You deserve it!!

Elizabeth McClung said...

Thanks.

I am not able to share as much of my life, or the changes which have permanently altered me with you. To have a good hour or two to go outside a week makes me seem the same as last year. To post when lucid, to use emails, notes, comments and calendar to make it appear I understand time or money or when and where things happen is something I can do.

I am no longer in the medical grind mill, I am not longer out and in the world, I am just trying to survive - and that means 30% of my day on taking a dump. That means being on oxygen today, with the mask. And that means that what I expect from Hawaii is not the same as a boss or coworker who came back from Hawaii as any action I take WILL have immediate consequences - I do too much on ONE activity on one day, I may waste 1/3 of the trip recovering.

I am glad to have so many good friends and relationships with people and would welcome more. I would have sent out more packages but I cannot remember who is supposed to get what. I hope after Hawaii I can focus on that and get things sent out once I save for the postage (many packages!).

I know what Victor means about the cost of art books, since in order to try and keep copyright okay I have a copy of each artbook I use pictures from here on the blog, and yeah, they are expensive (ouch!) but they also give pleasure, not just to me but to others. And I get to use research skills to find the right books - only many of them sell out quickly, very quickly (sometimes days, or a week).

I do think I want to come back, if Linda and Cheryl want me to come back, but I also want to see what I see - even if that means my lungs are damaged beyond repair or have a diminished capability for the rest of life I have left. These are the choices I have to make. There are safe ones, there are ones that matter, and there are smart ones. I hope I am chosing smart ones for the most part and saving the ones that matter for one use only.

I never meant to come back from Hawaii until I wrote the blog, and I still am half and half. But now I have a future to look forward to; SakuraCon, the Eisner Awards, maybe doing a book of essays, a trip to New Orleans. I can look ahead, and fight to keep going, looking ahead.

Elizabeth McClung said...

Even if I can't post every day in Hawaii I will post the pictures when I return, or Linda's pictures.

I have right now, only dread at the pain which will occur over days to get me on the plane and alive in Hawaii - once there, maybe I can begin to enjoy and stop fearing I am letting everyone down.

I think if I go to New Orleans, I am going to split up all the rail and anyone can help with a section of track for $5 or $10 and then we can all go together and I will blog what we do as more than just a journal to friends but as a form of giving back, the gift which requires effort. I will push myself to do, to take pictures, and to write so that all can be with me on that trip who want to be, a choice - because they ARE involved. That is one idea. Less secret like Hawaii, less shame.

Olivia said...

New Orleans is a wonderful idea to work on. I like your idea of taking everyone along (bit like Japan and the germ of the postcard project) So please do come back from Hawaii! there will be hand-knit socks to come back for ;) That last picture you used in this post is just breathtaking.

Ms. Pet said...

OMG! I go through stages where I don't look at your blog, because for whatever reason, I haven't been able to keep up reading it, or anyone elses for that matter, and I sit at home and think, "Elizabeth is gone, she's gone, and I didn't even know it, because I wasn't able to keep up and to follow, and I'm a coward for not checking and just facing her death. I'd rather not check and believe the lie that she's still alive," and then...

I check and your still Goddess Dammit ALIVE! *grins* And it feels like a fucking miracle. And then I read your posts on the inhumanity that you have been suffering and I am just sooo enraged. Because of COURSE you should have nice things, things that comfort you, things, little things that give you pleasure, things you can hold in that hand of yours while your passed out on your oxygen or that Linda and Cheryl can place in your hand. And I can't believe people are SHAMING you, for simply asking for such basic, basic needs. I mean, what? Are you asking for millions of dollars? NO! And it's not like your holding a gun to their head, if they don't want to or can't afford to buy you anything, they don't have to. *sigh*

Why not change your permissions on your blog, so anonymous posting can't happen? That way, you won't have to deal with these idiots. Most folks who post on your blog, care about you, in some way, in some form, even if they aren't always able to give you what you need or ask for themselves.

"yeah!" for going to Hawaii! Have a wonderful and great time! I hope you come back, but understand if you choose not to. *hugs*

I don't know if this post is "sensitive," or not. But it's my honest feelings, and really, that's all I've ever had to give you, which, in my perspective on the world, is something quite valuable.

I love you my crazy, growly, obstinate, skull loving friend! You deserve all the little things you ask for, so go ahead and ask for them, and fuck everyone else, who shames you or any dying person, for DARING to want to get their own needs met, during this last stage. If a woman can't be "selfish," when she's dying, when CAN she be? I mean, "really!"

Stephanie said...

I am scared for you for the pain getting there will cause, but as long as you get through that you will have the pleasure of being in Hawaii! I haven't been there either, so I hope you do post pictures along the way or when you get back. (Please get back!)

Who do you have to let down? I think most people reading this want you to have a wonderful time and enjoy as much of it as you can. Anyway - we're thinking of you!

Devi said...

I do hope your Hawaii trip will be all you want it to be and more! Because, no matter what the Anonymice say, you have every right to live while you're alive, and to have wishes and dreams.

Raccoon said...

Yeah, I was thinking that you might have that thought in the back of your head.

Do what you can, but stop before before you do too much. Think of all the badminton you still have to play!

And, knowing you, you'll be bringing your laptop and blogging. This is good, because it will let us, your family, know how things are going.

cheryl g said...

I do not like anonymous and the hurt anonymous causes you.

I believe you will come back from Hawaii. It's my job to make that happen. I know you won't have memories but there will be pictures and I will have memories for both of us which I will cherish.

After Hawaii we can plan for Sakuracon, the Eisner Awards and New Orleans. Working towards dreams is always a good thing.

yanub said...

Well, then. If you are going to go to New Orleans, I suppose I will have to meet you there.

I reckoned you might be thinking you wouldn't make it back from Hawaii, but now you have to. Also, put the stuff back up on your wish list. It isn't the business of anonies whether or not you get gifts. You made that list to start with because your friends asked you to, so, as a friend, I'm asking that the list go back up. Look how frustrated you are with me because I don't put things on my wish list! And not just you--everyone I know is always after me about it. So, why should you drop a good habit just because of some whining busybodies who can't be buggered to do anything useful with their lives?

JaneB said...

Hello Beth. I love you. I want you to come back from Hawaii if you can! Anons are just like the voices in the the head which we argue with, the unkind ones - they need putting aside, not being granted headroom. I am an adult and responsible for myself, who chose to buy you presents off your wishlist. We're both book lovers - how do you EVER know what books such a person has or does not have? A wishlist helps a lot.

I hope you see stars, and lava on a dark night, and your beloved ones awe-struck faces in a special landscape. And that there is joy alongside the pain.

No one could honestly say that you aren't living, living fiercely and fully and humanly - you a bright comet of a person, living and burning and changing the world around you.

Have a wonderful trip! Whatever happens, know that I love you, have learnt so much from you, from your friendship, and that I will be here for Linda and Cheryl if they want me to be, even when you aren't alive. But do TRY to practise the strange, mystical art of moderation, won't you?

rachelcreative said...

I thought you might have been thinking you were not coming back from Hawaii. I'm glad you felt able to write about this.

Well I'm sad that you took stuff off your wishlist. Because when I have a little to buy you a gift (because I am allowed to choose to do that) it's good to get you something I know you really want. That's kind of the purpose of a wishlist. But we had an email chat and I have some ideas of what to get you when I'm able.

You might not make memories but you will live in the moment and make the most of every opportunity. Wishing you a great time in Hawaii. I hope you get everything you wish for from the trip.

Thank you for being a good friend to me and for teaching me so much.

SharonMV said...

Dear Beth,
I cherish your honesty & so will be honest with my feelings - please, please come back! I don't know what I'd do without you, such a bright spark in my life. If this is selfishness, then I am sorry. I wish I could take some of the pain from you, make the trip from home to the airport and the plane ride easier for you. I will think of you often & will hold the little black carved box of Queen Charlotte Island in my small hand, hoping to send some strength to you.

If you can post a few words on the blog, that would be welcome. Please let us know when you get to Hawaii (or Linda can let us know). If you can post some photos of your adventures, yes! I'd love to see them.

New Orleans - yes, a great place to dream about, a journey to plan, something to try for.

Sharon

Neil said...

I've been sending comments from a new browser, but they don't seem to have gotten to you, so out goes Opera...

If you don't come back from Hawaii alive, I will understand. However, that does not mean I WANT you to die there. Whatever happens, I hope all three of you can enjoy your time there.

As for the Anonymice (nice term, Devi!), I will not feed them; they are trolls, hungry for attention; and I don't feed Cuisine Challenged Bridge Substructure Symbionts. At least, not after this comment.

Love and zen hugs to all three of you wonderful young travellers!
Neil