A few hours ago, tonight, after my ‘instant opiate’, my heart medication and two other pain pills, my heart was still so erratic, I was in that level of pain. My fingers were soot black, I had vivid Raynaud’s up to my bicep (I told Cheryl over the phone, “That’s still a good six inches or so” six inches until my brain isn’t getting enough blood/oxygen or both). Giant white spots all over my arm like someone had gripped me so hard all the blood was squeezed out, these are the places where even on the increased oxygen flow I was on, there was no circulation. Sometimes, I couldn’t talk, I couldn’t do anything but try to curl up in a ball from the pain.
This is living. I don’t know what dying is, but it sounds a lot more peaceful than this, which is why when I get depressed, when I frustrated, when I get in a funk, I pray for death, I pray for those inches which separate me from a corpse. Of course, having a pout isn’t the same as a reasoned decision of Euthanasia. The problem is that daily extreme nausea, going into shock five to ten times and extreme pain as a back drop to hours of pain so bad that it actually stops your breathing influences me to a few more episodes of depression and pouting than normal.
But Linda can’t pout; at least not entirely. She has to be there to catch me, to convince me to go on, to assist me when I don’t want to so that I can reach a place of rationality eventually and make my own choices. This isn’t a job Linda chose, to watch the person she loved, the person she moved continents with, stood with against social and family pressure to leave, slowly weaken in extreme pain. She comes and stands there, like tonight, as I fall against her and sob because of the pain in my chest. She absorbs my tears, she absorbs my screams, my pouts, my anger, my irritability, my fear, my terror. She looks at me, while I tremble in fear and tells me it will be okay. She lies awake while I fall asleep to make sure that tonight, not like others nights, I don’t stop breathing.
Linda watches and guides as “The most brilliant person I know” is so confused she gets lost in her own apartment, and can’t do simple arithmetic. She assures me, when I say, “I’m so stupid, so stupid, it took me four hours to write a blog….four hours!” That I’m not stupid, I just had a bad day, or parts of my brain had to take detours. She is there when I tell her yesterday that I am bleeding from three orifices and maybe if it gets to four, I should go to the hospital. What does she feel? When I am lucid and make a joke about it or insist on going on. Does she want to shake me and scream, when she sees me turn white and my face turn white and my hands shake uncontrollably and I say, “I hope you’re ready, I’m leaving for downtown in 10 minutes.” She has to be strong, always the strong one, the one who comforts the confused me, who holds the me in pain, the one who feeds the person who isn’t ever hungry and can’t taste. She is the inspiration to trips to the park, she is the inspiration to leaving the house.
Today it took me three hours and several times of going into shock to shower, to dress, to feel strong enough to take a shower, to feel strong enough to put on my shoes. She was there, holding me upright on the shower bench while I shook helplessly. She brought the van so that I did not have to wheel through the sludge. And she was the one to help me change and find the one pair of jeans that now fits. Two sizes smaller than the salesgirl who rows and is the same height as me (not the same build – now SHE was a model!). I went out in the snow, in a purple zebra hoodie sent to me by Veralidiane, and socks sent to me by Laura. I got frostbite for two hours, and one finger turned black. But I went out. That was my goal and my accomplishment which took, including the nap afterward, only 11 hours. To get a pair of jeans that fit my shrinking body.
The thing is that Linda has taken on this job, though it was thrust upon her, where others have not. Where few of any others have taken on this job. She deals not just with the time she spends with me, but the crucial mundane. Daily she calls Blue Cross who after weeks of being told the paperwork was ‘almost ready’, a representative said after two months, “Oh, here it is, no one has looked at it.” And the next week said she did nothing on it because Linda’s Blue Cross number wasn’t on it. Linda said, there are five pages, isn’t it on page X? After a few moment there was a, ‘Oh yeah’. Last week, it was going to be done by the end of the week, this week it will be done Monday, then by Wednesday latest, perhaps Thursday. The supplier has asked, “Do you still WANT a oxygen concentrator?” We have the tests in Seattle, I am listed as a patient in Seattle, we have the money donated for Seattle, we have been trying since AUGUST to get this concentrator. If they don’t approve and we place the order by the end of the year….we will have to pay 20% - or an extra $1,000 we don’t have. That is the reality.
Linda is disabled, I don’t want to talk about it but that affects her daily life, we are on different disability times and yet, she continues her job taking care of me. Her disability pay is 25% less than her regular pay. She has asked my parents, to help at the bank with a line of credit (as they received a sizable six figure inheritance this year which gave them the $500,000 condo), a couple thousand as a fall back. She outlined how I had worked to get the doctor to FINALLY fill out the 2006 disability tax paperwork and that 2006 tax return amendment was filed ($1,200 to come to us). How our early filing from this year means another $2,500-$3,500 in medical expenses to come to us and the accountant’s amendment the 2005 tax return will grant us the $1,000 from the 2006 tax return from moving expenses previously denied. My parents are still ‘thinking about it.’ In the words of Linda’s mother, a cattle farmers’ wife who has to work as a care worker to support the family though mad cow and whose son just fell from his construction job and broke his back (without severing the spinal cord), “What is there to think about, She is their DAUGHTER!”
I spent hours yesterday researching and adding to the Amazon wish list so that people from the UK, from Australia, from the EU, or the US, can buy things locally (I had to do searches in German!). And so that all those who ask, “how can we help the Postcard Project” can see the various types of stickers we use the most, and run out of the most. Here is one sticker from those sheets of stickers ($5.45) on the list. There are also the nature postcards from Germany (from $14.99 plus shipping, and they ship to the USA!) high quality nature postcards of Australia and New Zealand we are regularly asked for. Or you can try a set of eight Japanese Woodblock ones (only $7.84 - includes free upgrade to 2 day shipping!). I searched for five hours to find the types of stickers and postcards we are needing the most (though every postcards we are donated is used, as all sort of requests come in, but some we are desperate for!) So you can get for $9 Australian dollars for a Fair Trade set of postcards on the Sea – from whales, to sea views of town).I have put on my DVD sets that I was going to keep (you know, the ones I like, and wanted to watch year after year…..except between the gentle myth of that and the harsh reality and need to pay my way, I face reality), selling them on ebay, putting up one at a time, after my nap, as my strength lets me.
I sold one today. So part of that is going toward Postcard Project costs and a part of that is going to David at the Japan Cat Project, at his page (which has a link).
I am giving the donation because this man, besides his own acts of saving cats, (and who could use a donation of someone’s old computer as his is over 8 years old! Yup, from 1999!) has been to Tokyo and Osaka this week and found postcards for me. He doesn’t know me. He doesn’t read the blog. He thanked me for the plug and said this morning that no, no one donated on paypal and put in ‘comments’ (under the amount) talking about Elizabeth or Postcard Project had donated. That’s fine. That’s a choice.
I know David from his life, he loves, and he acts. I told him that I would find a way to support his project, and right now, if as he takes some of his time, effort and travel money to support my project, I will take some of my money I make to support his. I know he loves because I see it, I see it in his emails which are slightly mismash as the three new kittens he adopted from the park are walking all over his keyboard. He has given me a chance to embrace them, the whole cat project...am I going to turn that down? If you use Paypal on his site put in the amount, hit “update total” then log in and use the “leave comment or message” to give him a message.
If Linda had a project, I would donate to that too. In fact she does, she has me and she has the Postcard Project. I have tried, as hard as I can each day to take the burden of those costs, and that worry off of her. She knows how much I worry about funds. She knows that buying things at a fraction of the cost, that getting $20 postcards for .60 cents each takes hours of time. She is there to catch me as I work to the point I am not making sense when I talk anymore. She is there to lift me into my wheelchair, she is there to hold the toothbrush for me.
Compared to Linda, what I do is simple. But it is not easy. I have a path before me, I don’t know all the ways it will take, the twists and turns and while it might be okay for a while, you have to remember that there is only ONE path, and you don’t get to turn off, you don’t get to play the game “what could have been” or “If I started a class now…” Because we all know where that path ends. I am dead already, the only question is when. And there is no medical society to tell me that. It depends on how long I can hang on to my sanity. And the length of willpower to stay, to face what cannot be fought and fight anyway. Cheryl writes about it here. One path, one gate, and you know what lies at the end.
Dreaming about death is easy. Certainly I am at a level of pain and maintenance where many would support Euthanasia (with or WITHOUT my consent!). In a way, it is just deciding when to go. The doctors have quit, the social system has quit, all that I need to do is quit. Come on Beth, quit, just spread your wings and fly away...QUIT. The longer I stay, the more pain I endure, the worse I get, the weaker, the less control. Right now I have the energy to dress every other day, to take a shower every 4 to 5 days (good thing I can’t sweat, eh). But I have pain in my morning, in my evening. One time, Linda got her time wrong and the pain woke me, I was literally ripped out of my dream; it shredded around me as the pain shooting in from my body became all that I knew. The people next door probably think we have sex every night from the moaning that goes on. As I wait for the opiates to hit maximum, and the sedatives to slip me under. Morning is worse, double doses of pain killers and I am almost screaming at the care or Linda when they return a couple hours later – pain makes you INTENSE. So yes, I have plenty of reasons in a snit to quit. My life is NOT roses, and unless I WANT to be HERE, there is a good reason for me to say, “I’d rather be dead.”
It is a good thing I am a dreamer then. Because this is the reality: outside is winter, winter here in the Northern Hemisphere. And this is what I see. And this is pretty crap to wheel in, and with my circulation I get a lot of frostbite. But my job is to see beyond that. To see beyond the pain to something that makes it worth it. Whether that is a person telling me that my postcards brightened their day, or that they used my gift that day. I have a stack of letters and notes beside my computer of people I want to send emails to thank them for what they do for me. Have done for me. Every week, I get a bit more done. And I am going to keep selling, I AM not going to die because, had it not been for Blue Cross I could have been in Seattle last month! I am going to have a big ebay sale of Yaoi; of my manga. I am going to raise money to go to Hawaii. I will watch Linda grow strong and healthy again and then I will spend a day like this, relaxing, my cat ears twitching as I wake up to my cup of hot chocolate. That is what keeps me going on, not NOW, as now is pain, now is struggle. I must make things to struggle for.
Linda, talks about her view of the postcard project here where she includes her financial fears. Even more when the requests start flooding in. She has health frustrations as well. Because I project an image, through this blog, a vision that I am half devil, half fighter and that I will never give up.
And I have to admit that I got excited about the thought of getting on the phone with the VP of human resources, or the manager who regarding our bed said the number 1 focus of Blue Cross is providing Health Care and resources to those insured. Hmmm, is that what a wait since August and people admitted they never even processed the paperwork for two months means? If THAT is number 1, what is number 2, coffee breaks? Besides, nothing kind of freaks big companies out when they are talking ON the phone to someone talking about a wrongful death case…….their own. Look, when you have a disease that can be hidden, then you have a choice to tell people or not. When you have seizures in stores, when you have to be carried out, when the ambulance has picked you up from most downtown locations, what is the POINT. “Sorry, I don’t shake hands because a cold would likely kill me……sorry!” Little smile.
See, the truth is that I am fragile and I am scared. There are a lot of hours in the darkness where it is just the pain and the unknown, that path I can’t get off of, and I can’t imagine another day like that day much less it getting worse and worse. So who is left to clean up emotionally? Linda. She holds me, she supports my whims, encourages them, helps me into my corsets, into my new arm-warmers, buys me new Victoria Secret underwear. She buys a corset herself, and wears it, she takes my arm warmers, she buys low cut jeans on my approval and looks great in them. She lets me be part of her life, though she is more than capable alone. She is the girl in the picture in black, holding me up, steadying me emotionally and physically. A job she never asked for, a pain SHE endures on a daily basis, without sympathy, with minimal support.
Without the people on the internet, the support they give me, financial, in post, presents, in comments and emails, I would be a far more insular person. My world is large and generous because kind, generous and challenging people have surrounded me. On that note, I was just told that Lene at The Seated View won GOLD overwhelmingly for the Canadian Disability Award of 2008 (To give you perspective, her 831 votes for a gold outshines the votes for gold in Best Feminist Blog (94), or the Best Political Blog (168 votes) – in fact, her votes are more than ALL the votes in both categories combined!). Congratulations, yeah Lene, Screw Bronze! So....Lene, NOW do you believe me? She challenges me, my ideas: she writes me every week, in pain, knowing that I can’t respond that often. My world is large because the people who read, who sometimes comment, who sometimes never comment are people who are not scared to be challenged, to be scared, to be horrified, and to talk back.
I hope that people know that I have tried, as able, to give them the tangible proof I love them, as limited as my life is. What beyond love have I to give Linda? Any burden I would take, when I swore that I would be there for HER, little did I know that the burden was to live. That is what I give Linda, fighting, as often as I can, and staying. I have little else to give Linda, who even tonight will raise the legs too heavy for me into bed, will help me with the pain, and shock from the weight of my torso, the struggle to breathe. And she will lie there in the dark, waiting and listening, until she hears my breathing become steady.