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.