My disease, it seems is at a stage where: I have all the things that are precious to me, and if I permanently destroy half of them, I might live longer, but in the end, everything will be destroyed (and then I die). So this week I am sending out many nice packages, I think 12. So my life feel like it is if I had to chose ONLY four of them, the most precious four KNOWING that Linda would smash at least 1-3 of them and the other eight. I would be emotionally invested in all of them, plus having to chose the most precious of those among the precious of my life while KNOWING that IF I am lucky, half or less might survive. See, because my disease will destroy the rest. Does that make it clear? And if I don’t act very quickly, all of them are smashed.Today, I am sad. They say that my disease makes me think like a child. I have ‘regressive’ thinking. So while I might have adult Elizabeth language it is five year old or 8 year old Beth talking.
And I am sad. Adults are telling me I have to do this or that. They get upset because I can’t do things fast enough. Or they just leave me alone. And I don’t understand that. I don’t know what I did. I know that in some way this disease I have is my fault. I know that because that is how people act. I don’t really understand all the words but they act like I shouldn’t be like this so it must be my fault somehow. Since if in doubt, as a child, it is probably your fault.
Someone will punish me, or worse, ignore me, and leave me by myself. Only if I am lucky will they explain it to me.My disease rips out memory, so I spend much time repeating every day the things I need to remember. I remember things by picture mostly. I don’t know what I did but I know that I made people upset as they went away. We were having fun and they went away. I try very hard to write interesting things and have nice pictures on the blog. But it isn't enough and I don’t know why. Maybe you can know? You can look at my memories, to see, or what my disease leaves me.
I don’t have tea parties, I don’t have human contact and I don’t go outside. People can’t come see me, but they sometimes write me. But now, they don’t. I think they are busy. I had a lot of parties like this where I invited people and no one came. At first I was told that I hadn’t told them correctly but later, over time, I was told that by being me, I cause pain to others.I am the person that people do not like to be around because I cause them pain. That is what I was told. I was told that the way I speak the truth, plainly, pains people. I was told that the way I believe things pains people. Also people fear me, or fear hurting me, so they don't talk to me, or they fear hurting me so they don't see me or send things to me, or be around me. That is who I am.
Right now I am doing postcards and that pains me. I need to find in my head the one postcard a person will love above all others, whether they care about me or not. To me, the opposite of love is Apathy. Love is where you care about a person so that you want them to feel the best they can. I love hundreds of people and try, as I can to make them feel good, make them feel good about themselves. Apathy is where you turn that switch off. You don’t feel anything, they could be happy, they could be sad, but so what? That to me is worse than hate. And yet, people don’t hate me, they just….stop.My landscape is very dark. Linda says I am supposed to let people know that back to mid March, none of the things bought except the baby monitors, or the things off the wish list that were put as purchased have come so you might need to talk to the vendor including: (Lunar Legend 5&6, Mozart Question, Emma 8, all four of the international stamps, the ‘forever’ stamps, Nodame Cantabile 12,Law and Order 8 and Town of Evening Calm – it’s okay, I bought the last two myself, I bought many of them, or Cheryl did, but the ones we didn’t, most are still missing, so please let your vendors know). That isn’t supposed to matter. No letters this week, which isn’t supposed to matter. Except I am supposed to destroy part of my life, and I am doing it alone. Very much alone.
My grandmother died, my living one, who was born in Alberta and lived in a Sod hut as a child. I wasn’t told when she died, I know it was recent, and that there was an obituary but I wasn’t sent that either. But it is okay as I visited her recently and she was the same curious person and we talked about China, Russia, Venice, the UK and different museums. Her body is staying in the morgue. Her children aren’t having a memorial service, or her cremation as one of them has a road trip planned, and leave soon. Then other people have vacations planned, trips through Europe, so they will remember and honor their mother when it is, convenient. I think of her wishes and her body and that people don’t put down they want to be cremated so they can lie there, frozen while people go on vacations. Because they are BUSY after all. I guess I say this because I can understand all to well the comments, because while every day, while I am work alone on not dying, that doesn’t mean that there isn’t a pile of things to do at work and people aren’t behind on the cleaning, or busy with…. I get that, sort of, adult Elizabeth. Child Beth doesn’t really get it at all. It hurts and yet, I am alone. Grandma is gone and yet, we don’t have her death service until everyone’s vacations are out of the way? Apathy.
I have the pinwheel because I am a child and I like to see it go around. I like the fireflies and I like the lights.
But people tell me not to go to the lights. My Grandma flew on a mail plane to the arctic ocean and pitched a tent when she turned 65 and camped and watched the Inuit. Then travelled China (twice) and was followed in Communist Russia, she cruised the world on education cruises and visited most continents. I learned to love other cultures from her. She was a cold woman, in some ways heartless and disapproved of me until near the end, when I don’t think she knew me. But she liked Linda. Linda is good. I am pain. She fed her children as a single mother in the 50’s. That counts for something. At least to me. She cheated at games every now and then. I don’t know her that well because she wasn’t easy to know. I don’t want to be like that, a list of accomplishments and that is all people know. And yet, I am alone, always alone. Vulnerable, open, exposed, hurt, alone. That is how I write, and because I write that way, it makes it easier to be hurt, it makes it easier to feel so alone, when people back away saying, “I don’t know anything about that.” Like I do? I’m making hard, hard decisions, painful ones, and I’m trying to share that, while I can explain it.The Beth now can only say that I won’t be able to go out much anymore. And when the sun shines, it doesn’t shine for me. Because I am inside. That is why I want DVD’s to watch. That is why I like books. A person can feel lonely, alone, in pain and have a book.
The book or manga doesn’t take that away that feeling, it just makes it so the mind has a plushie, a teddy bear to hug. I wish I could read 'adult' books. But I can't. Only manga, or Young Adult sometimes. And I don’t have solutions to these really hard things, I just have ways to survive emotionally until next week, or tomorrow, or the week after. Except I don’t. So I cry. And another day passes and something I love is destroyed.I am desperate, and I think and hurt like a child, and I don’t know where everyone went. Or maybe I don’t understand. I just know that it hurts inside, in my heart. And I know that people define me as they act toward me.
Cheryl and Linda are waiting for me at Postcards. I have to help them, because they help me. They hold me sometimes. Cheryl got me the thank you cards I sent out this week. They are nice. Cheryl acts like I am special so sometimes, I feel special. I still feel afraid, and I still am losing things I love in my body and my life, but I feel special. I have to go and try to make other people feel that.
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20 comments:
Regarding your grandmother, my sincere condolences.
Regarding everything else, I wish you had the sun. I wish you had everything BUT pain.
You are special, yes.
And the people who told you that speaking truth, plainly, brings pain? That you brought pain? They were afraid of truth. Truth is often hard, often painful, but it is beautiful, because it's true. Lies don't heal anything, but truth heals, often.
I'm sorry truth doesn't heal your loneliness. I'm sorry I can't teleport myself to your room for a tea-party, and to bring some of my supply of books. (No manga, I'm afraid.) Most of mine are young "adult" - plushies for the mind, as you say.
The picture which closed the last post and opened this - it's perfect. I'm sorry, though, about what it says. I understand a little about destroying pieces of your life, to try, desperately, to preserve the rest. It's cruel. And it's especially cruel that you feel it's your fault. Bad luck isn't something you earn, it's just bad luck.
I sent you a card (last week, I think) - but it may have gone missing, because the price of a stamp went up, & I didn't realise, so it was a few pence short. I don't know what the post office does with cards which have the wrong price stamp on.
The card had a squirrel on it, because I think of you and the squirrels.
Fundamentally, we're all alone. When we have other people around, it doesn't make us less alone, it just makes us able to pretend that we are not. Your grandmother's children are busying about, traveling and doing this and that for the same reason: to pretend they are not alone. In your situation, you have very little to mask the innate loneliness of the human condition. You have memories, but too many of the memories you are left with are of the monstrous kind, left there by monsters with human skins. I wish I had an answer for you about what to do.
I didn't see that, on the last post, people misunderstood you. You were clear enough. Maybe we who posted back weren't clear to you. Can you accept that? Can you accept that people aren't always going to be able to articulate to you what you want to hear, need to hear? That sometimes, it's an effort to simply comment.
There are days that are so rushed for me, and that I feel so bad at the end of, that I really don't wan't to compose a comment. I don't want to even compose a thought in my head. But I almost always do, just for you. Then, you don't like what I said and are angry. Well, like you said, you react like a child. But no one wants to upset a child, either. If people think they make you unhappy with their words, they will stop saying anything, even if they keep reading. But don't worry about me. I'm too socially ungraceful to let a little thing like you being peeved at me stop me from writing you unless you flat out tell me to.
I'm concerned that your deliveries and mail aren't reaching you. I know Carapace sent you postcards, and I sent you a trinket, but I don't know if any of that reached you. If your mail is being diverted, heads should roll in the post office.
your grandmother sounds like an amazing woman. And you are an amazing woman - not because of your accomplishments (although they are impressive), but because of your openness and love.
E-mail to follow.
I didn’t understand what you were trying to say in your last post and now I think I do. I still find myself at a loss for words in the sense that I am not sure how to say what I am feeling in a way that will make my meaning clear to you.
I am deeply saddened that your life and its preservation are bringing you to such hard choices. I know you are only going to be in my life for a while and then I will lose you but I selfishly want you here as long as possible. Do what needs to be done, I will be here.
I am sorry if my actions have hurt child Beth. I want child Beth to know that they have not done anything wrong and nothing is their fault. I am sorry that adult me forgets to explain my actions to child Beth.
I like being around you. Yes, truth can be painful but I would rather hear the harsh truth than pretty lies. You speak the truth to me and so I know that you do love me and aren’t just saying what you think I want to hear. I do hurt you and I hate it but I try to not close myself off from you. I will not stop being here.
I act like you are special because you are. You are generous, kind, beautiful, and loving. You face your life head-on and live it to the fullest you can. You speak up against bullies. You tell the truth no matter the cost. You are special and it is my privilege and an honor to know and love you.
I don't know what to say. I'm sorry. I will keep reading and keep trying to respond, keep sending a postcard every day, sending money for the joy fund and manga when I can. You matter to me. I'm sorry it's so hard, and I wish I could ease it, but this is all I can do. I wish I could help you feel less alone and desperate.
I care a lot about you.
*HUGS*
Oh Elizabeth, oh Beth. Sometimes I don't have words to comment, and that is my failing not yours. Life should never be too busy to love, and to tell people they are loved. Child Beth needs to know that. But I hope she also knows, at least in her head if not in her emotional gut, that no-one is perfect or expected to be perfect. Not her, not the people around her. I don't know how children learn that, that forgiveness is part of love, that love involves acceptance of weakness, loving despite the fact that others fail you sometimes, that life is hard and painful and lonely, but it's a lesson you clearly act on, repeat over and over. Reaching out and loving makes you human, and brave, and a learning person, growing even as your world shatters around you.
I am your friend and I stay here and listen and try to say something back even when I get it wrong, when you are made unhappy by what I say, because to say nothing would be like pretending you aren't there, aren't touching my life, aren't important. And you are. I hope your days get brighter.
Elizabeth, I'm sorry to hear about the loss of your grandmother. I liked to read about how she traveled but was sad to see she was cold toward you too.
When I commented, I had just finished something brain-draining and was very tired and having a lot of physical pain. I did get how dangerous the fevers are for you, how you can't get them down and how very serious that is for your body, though I may not have conveyed that well. I even read the blog post the night before and couldn't comment then, though I wanted to--well, my brain wouldn't work well enough to be complex on any level.
On the emotional level, I understood some but did also miss some, again just from being really very tired, even though I read carefully. Even when I do get it (or think I do), my comments don't show all of my reactions or thoughts about your blog that day, but just a sample of them--and not always even what's most important.
Please forgive my not being supportive in the way you need--I don't mean to hurt you when I don't get it. But please don't worry so much about our reactions. I love you and would rather you tell me if you are upset than not tell me and continue to feel hurt (I'm sure it still hurts, though I hope you know it's from my shortcomings rather than intentional.)
Thanks for letting us know about packages--that worries me that you haven't received some things. I'll check on it as I can.
I love you, take care of yourself. I'm sorry about how things are changing in such a difficult and rapid way way for you and you feeling so alone.
I'm sorry I was not around yesterday to comment again. I spent a full day on well, welfare applications and pulling together supporting documents. And then went to my grandparents'--my grandfather has some upcoming appointments and will be using my old scooter since he can't walk any distance because of respiratory complications. And we stayed way longer than we intended to! But it was good. I missed commenting back to you though.
I hear and understand that you're feeling alone. I don't always have the ability to say profound things about that, and by the time I read to the end of your post I have forgotten the rest of it (my problem, not your fault). So I had not responded yet.
But I wanted to let you know that you are not forgotten, right now. Because that's what I can do. We are both on this planet, and I am thinking about you with fondness and care and happiness. The picture and postcards you've sent me remind me of you and what you've shared with me and with others.
I will say more later when I can read more.
Yanub and Cheryl have said everything I could say, except they've said it better.
It's a privilege to know you, Beth, even if it's only through the Internet, and no matter which Beth is talking at the moment. So thank you for being there.
Yes, adults can be very demanding, of one's time, of energy, of one's patience. I wonder, too, if the adult Beth lurking inside you gets impatient with the child Beth who's in charge right now?
Yanub's right: I have trouble writing sometimes, because I don't know how to express myself clearly. So I'll apologize if I don't make sense.
For now, please remember that we all love you very much, no matter which Beth you are.
I think the depression will go away,but you have to be patient with it. I sometimes try to recognize and accept the fact that I am depressed, and treat myself gently because of the depression, knowing that it will pass.
I'm not going away, Beth. I'm here, listening and reading, and sending positive energy.
Love and hugs,
Neil
A few thoughts:
I'm sorry you feel so alone. I wish I lived closer so I could more clearly convey how all your friends prove you are not alone.
If you "cause pain" to others, that just shows a weakness in them. Don't you let them make you feel poorly.
It takes incredible strength on your part to keep sharing your pain. You have given me great doses of perspective, and I think your strength is what makes you beautiful and special. Stay strong, and milk what you can from your life!
Big hugs to you (and I'll be thinking of you while at the Portland NAC this weekend)!
Well, according to one comment from another anon I am Lost and Blind and Need to Repent before the Judgement. Er....I think that has more to do with who I like than anything else.
After I spent a lot of time on the last post I realized quickly that people simply did not understand aspects of what I was saying or I had not been clear. Essentially, I had been a poor communicator and forgotten how different life experience is right now and not given a context or anything for people to use. I talked about this with Cheryl and Linda and they agreed and asked them what they thought and they both had widly different interpretations of the last post and when I explained what I had meant there were like, "Well, I GUESS I could see that." - Every writer thinks they are being obvious even when there are not. I was frustrated a little, mostly with myself, and let that out in the first line. Plus, there were topics that no one wanted to comment on, and that is part of what makes a cultural pressure of isolation. So I was determined to do it again, plus I had a breakdown, and a regression and thought I should KISS (keep it simple stupid!).
I had not talked to anyone about my grandmother's death, and except for two emails, I haven't since. Though she was a part of my life and probably one of large places of affection (like I said, she was cold, hard, aloof but also taught me baking and wanted to feed me and then ordered me outside and locked the doors).
But after this I will try to move on to light and funny, which is the sign of the best of writers, to feel nothing but ash, and write humor.
Devi: thank you, I am glad you said that.
Me too, but sort of like the Dante's trials, I feel I get done with one, only to be faced with another.
Baba Yaga: Yes? I think we are all special but to want to be held in cupped hands is seens as greedy or not socially appropriate.
Yes, they were afraid of me too. I do care about people and try to help them but I won't play a part in a falsehood, as I have seen where it leads. And I ask questions. A lot. That seems to scare people the worst. Truth does heal, because I think it allows people to move forward.
I would like a tea party with you (milk, sugar?). I like Young Adult books, but to find myself reflected in society, I find either YA or Manga, for some reason, and since I don't like disappearing, I like to find myself in society.
Yes, I know logically, but not in my gut, since also logically how could a person have a millions to 1 disease and have THAT have no connection to anything they have done? ACK!
I like your cards, they have exceptionally neat handwriting (sorry, I have a visual memory now), so that is how I know who you are. I hope it does not go astray also.
Yanub: Um, that is one viewpoint, but not one which I believe. If it was, then I am of all women most foolish. The postcard project is a hoax to perpetuate connectivity as is 'surprise' packages, and other activities which I spend most of my energy. We are all unique, but I do not believe we are all alone, or that we have to be; it is just that we are in a society that for example starts with a foundation of INDIVIDUAL freedom and sort of runs from there.
The memories I have are true so they are important, it is just turns out they are things not talked about, so they are isolating. How vexing. As for those children and their mother, you are right in who am I to judge them?
Can I accept that those who write are not going to be able to articulate what I want or need to hear? An interesting an important question. It is true that often people, in the same way I saw MYSELF in my grandmothers death (both cremation, my arrangements made recently), others see aspects of themselves and respond to that, when I am hoping they respond to me. So yes, logically I do, but in the gut of writing, I'm not sure how many people are pleased when it happens to them: write a card asking how someone is, get back a letter talking about the birds in the local area. Happens a lot, still not exactly communication - since there is no interchange, since the basis is vastly different on both sides.
I do appreciate the comments I get, but as you rightly point out, I don't know all the circumstances and I feel I should be more grateful. More aware. If you feel you were attacked or not getting the response you wanted.....can you accept that those like me may not be able to articulate what you need or what you want to hear?
I was not angry, and made clear of that before posting. As I did not want that to come through, or blame, but again, what I want and what happens is not always the same. I find statements where a person makes a judgement about another to be less than helpful. I don't say, "You were angry that I didn't appreciate your comment so reacted instead of acting and lashed out in a petulant manner." - because how the HELL would I know. I believe you wrote in good faith. Your comments are not such that I believe you would direct to any child, because I don't believe that of you. And your use of 'like a child' indicates that you like many until they see it, find it difficult to accept the transformations. There are films but I am too embarressed to put them up. To have the memories of a child and be a child is not a comforting place when no one is coming for you. I was not a petulent or angry child; one reason being that simply showing anything that could be considered rebellion on my face would result in hitting even if it took all day, until the expression was gone (I believe they call it corporal punishment - when you corporally punish for thoughts, and repeatedly, over and over, until the person is broken, I think it is called 'breaking' or 'reforming'). But no, the state I was in was not anger but more like being lost as a mall - so many people going places but no one sees me, and where is my parent, my mother?
If people are hesitant to write, I understand, and yet it is exactly what I was told would happen because I am pain. That people can't stand the pain of being around me, or being with me, or talking to me, or answering my questions. I hope, like ASD, that with a bit of education, the fear of me will disappear. Except I am probably tied to the fear of death, the fear of mental deterioration and a few other fears.
I am sure the people at the post office are trying to act as if they are not alone in thier own way, which oddly includes shooting up the place. So perhaps the mail was simply delayed for a time.
Lene: the more pain, the more I risk openness, the more I risk openness, often the more pain I recieve, but if I did not risk it, would I have conversations or emails like the ones I have with you?
My Grandmother was Amazing, groundbreaking feminist in the way that will never be honored; in the 30's she converted a bus with other teachers into a living campout and toured and travelled before there were highways during summer break (she was a teacher). She died at 95 knowing that there was still so much to learn.
Cheryl: Thanks, I think part of the problem was that I was feeling the rush and pain of the choices but not understanding the process myself even until I had to explain it a few times. Much less be able to break it down into small pieces to understand.
Well, I want to be here too - well not HERE but rather endlessly travelling in Japan or Hawaii. I have fallen off the map in terms of society - I am far to sick to hold a job, even for a few hours a week, I can't do some basic skills but still have others. I am terminal but due to the rarity of the condition no one knows if I am supposed to be dead already or not? So not yet dead, and yet no place really in the disability community, since I'm not supposed to be surviving what goes on much less having it regularly occur; and no way for the normal; go to work, go home, mow the lawn people to understand and trying to figure out how to bridge such a HUGE gap in a society which doesn't keep grandparents at home or parents, which doesn't SEE degeneration.
I don't like hurting you, I don't want to, I still need to learn more tact or better yet TIMING - but yes, I speak the truth because I love you and you deserve the best.
I am thankful for the times you have taken care of the the me that doesn't understand or is 'regressed' and treated them special. Thank you.
Wendryn: I don't know why you are sorry. If it is about comments, I was the one who wrote so poorly everyone had a different viewpoint then I was the one who was frustrated because I had failed. You have nothing at all to be sorry about - if it is something you have done, I can't remember (again, that's almost a joke in our house).
I appreciate the joy fund, as I find that even joy needs to be worked for. I try not to be a burden to Linda and not to you either. Most of the time I want to die is when I am faced with the level of cost financial or otherwise at which I am to others.
I wish things were different too. I think I should be glad you aren't here to see and hear it because you care; there are some things no one should have to deal with, Linda included, and prolonged screaming from pain is one of them.
I don't think you're a poor communicator at all. It's both audience and writer who have to connect and sometimes when we realize people have read it differently we just adjust and try again.
My mom told me this weekend about how she loved the poem I'd written with an old man as a narrator and I had to ask which one. Umm, turns out the narrator in that one was me. Le sigh. Glad she enjoyed it, but that was not what I meant, not what I meant at all. That's a relatively minor difference in understanding but I just wanted to say it happens to others of us too.
I offer condolences for the loss of your grandmother, and feel sad for you that you weren't told about her death, and also that it sounds confusing about how your family are going about her death (very postmodern?). She sounds really interesting, an adventurous person. And I guess human, to relate to you how she could. Guess we all are that. I am glad you had whatever time you had with her.
My grandmothers taught me cooking too, I have memories of being very little and doing that with them. It's something I value.
I am sorry to hear about the death of your grandmother. I think many of her generation were stoic and unemotional. Most of my grandparents certainly were. It is hard sometimes to show emotions, to love and make oneself vulnerable.
It is a gift to be able to do this and something for which you have a true gift. You speak truthfully and you love.
I am sorry you are lonely. I wish I lived near you and could come over for a tea party and look at anime books. I wish I could bring my cat over for you to pet and play with.
((HUGS))
Joan
Hi....
well...I really do agree with Yanubs, comment.
and forgive us for not really understanding sometimes, it is hard. Even if I understand that that can be frustrating as a writer, and human being. It is not your fault, or maybe the readers, we are all different people trying to connect. Sometimes it works, sometimes it fails.
I hope that your today will be a good day, it is early morning here in sweden so maybe it is night in canada.
Take care
I had a friend in college whose grandmother died just before finals or right at the beginning (I can't remember which, it was 20 years ago...). It was two or three weeks before she found out. Her family wanted her to focus on finals...
You've commented on this subject before, people leaving, and being alone.
I think it's something that happens more and more as people get older, as people become "housebound," suffer injuries, debilitating illness, etc.
I know myself, after my accident. Lots of people waiting room, visiting me at the first three hospitals. Then, "Real-Life" started catching up with them, and I started getting less company. By the time that I finally left, my circle of friends had dropped from 50-75 down to, well, I think there's only about 20 people left from that time that I'm still in contact with.
And, without the daily contact with people other than nurses, having seen all of my friends "abandon" me, depression set in.
That's why I'm glad to see you go to Sakuracon, going to your wheelchair racing. It gives you things to look forward to. Since one of the things I've noticed from my own depressions is a lack of anticipation, I like that you still have anticipation.
On the other hand, there's the bottom dropping out once the subject of the anticipation has been achieved.
Of course, what do I know? I spend most of my time web surfing and reading.
I'm sorry to hear about your grandmother dying. I'm stunned that your family can put her funeral on hold until a more convieniant time. Perhaps not surprised after how they've not been around for you when you need them, but appalled.
I expect that hurts you greatly. Hurt that your grandmother gets treated with so little respect even in death, and hurt because here's you facing your own death and seeing these attitudes.
You're there in the darkness looking out. I can see you looking out and I hope to help if even a little, even if it's just a little letter from time to time.
I am trying to imagine how it must be for you to have to strip away the things, the thinking and behaviours and moods and reactions, that are dangerous and deadly. And to have to make those choices fast without knowing if they're going to work out or take you closer to death. And then to do all of that with child Beth.
I hope there's a way to redirect the dangerous emotions in good ways. I'm thinking whether defiance and that up-and-at-them feelings can be subverted into quiet stealthy resolve. That rather than having to lock away pieces of you in order to survive you can use their essence in useful ways.
But I guess with the speed of the adaptations you need to make survivial mode is not about choices? It's survival. Maybe this is a lockdown time (talking about having to rapidly change emotional range, behaviour and so on to not die). But once you'ce locked down it may offer a little more stability (in not dying) and you can add to the mix.
I'm not sure I'm making sense or conveying what I want to say. Forgive me.
My optimism says that this whilst this is a time for you to take critical action to protect what is precious and to keep on living, that once those measures are in place there may be room to allow back in some of the good stuff and some of the range without making yourself dead.
But I also get dizzy trying to figure out how you can stop yourself being depressed (angry/upset/etc) just because you *have* to. And how child Beth can do that. I have to avoid getting stressed because it increases physical symptoms - but I can only really do that by trying to avoid sources of stress and having total trust in my husband to hand things to him that I can't tackle.
It's a sort of cut and run mentality that leaves me feeling incredibly guilty ... but as that is bad too then I have to just accept it and move along. Move along now, nothing to see - fingers in ears singing a song waiting for it to go away. Does that make sense? I know it's different for me like you say because it's a chronic problem and I've had time to make that adaptation and to figure out it's necessary and to learn to let go. But you've also been training to be disabled for a while now (humour) so you may be in a better position to make those reactive changes than you realise. Doesn't make it easy or fair or ideal though.
I sent you a card which I hope has arrived by now and burbled on about nothing much. I saw it as a reach over the ocean and stretching out a paw. The action I hope says something more than the words.
Big hug Elizabeth, childhood places must be a hard place to be, when your childhood is filled with harsh messages. You sweetheart - what a vulnerable place this is, and your brain is short circuiting and taking you to places you've beent trying to escape from for years. Illness has it's own impossed child like state - recieving care immediately changes the dynamics of a relationship and it can be hard to accept that, when you want to be an adult free and able to control your own body. All your circumstances are forcing you to have the past thrust on you - you are fighting so much, and you are still producing words and pictures that tell a story. It's your story, and it matters.
A kiss to your forehead for when your brain is boiling up. And a prayer that peace goes into the places where there is fear, and torture.
And tears for a childhood and adutlhood which has been both difficult and painful. And thanks for putting into words something I've been trying to get a handle on myself.
L xxxooo
Dear Beth,
I listen to you and I understand much of what you are saying. I've been working so hard just to save what parts of life I can and trying desperately to get back some more of those precious parts that have been out of reach for me. It always takes a lot of work, lots of dealing with doctors & medical people. It is a long, frustrating,zig-zag journey a journey which is taken mostly alone.
Now, thanks to you Beth, I am working to get back a very precious piece of my life. I have 3 large pots planted with magical Sunflower seeds. And soon the giant flowers will be here. I have a garden again and I garden I am a gardener.
And now, after the lovely interruption caused by adding the sweet, delighteful and clever Chloe the silver tabby kitten to our household, and the less enjoyable disruptions caused by plummeting thyroid levels, another doctor & medical investigations, new infections & flare up of familiar autoimmune problems, I once again have more time to talk with you, Beth and to learn from your words.
Love, Sharon
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