Wednesday, December 24, 2008

Still Kicking: winter won't beat me!

There are many images within and from each of us; a person who has it all together, a person who feels inadequate, a lonely person, a frustrated one who also might be the life of the party. This is a disability blog, but it is also a human blog. I don’t think the two are exclusive, if anything one manages to highlight the other. So these are the parts of me I am going to talk about: the caregiver, the supporter, the actively suicidal person.

Here is a picture going out to a particular person and vet, but also to every person with animals or loves them, or who is lonely, or who just likes breasts! The thing is, for some people this time of year is all about family and being too busy to read a blog. And for some, like myself, though my family (biological) has probably made me cry at least two to three times a day for the past week; I will not be seeing or hearing from any of them. I did call earlier, but the calls are screened. So lets just say, not a joyful event right now. And you know what, I got showered yesterday but couldn’t get out of the house today or yesterday, I wither. Frustration. But I sit at my computer and I try to send positive messages to people. I try. But also today, and yesterday, I needed to be there for friends and more than friends, real family, the kind that matter (non-biological ones). Relationships hit bumps, and the more stress, the more bumps – and right now it seems to be a pressure cooker of stress. So it took 60% of yesterday and 90% of today being there, talking, working so we are all together, on the same side so that happiness can....and one day WILL bloom.

Also, the medications to help Linda’s illness turned out to produce some almost emergency side effects. She is getting them out of her system and I have been playing the role of Primary Caregiver. Which is a switch for me, and one that I will be paying for in pain now and tomorrow. But this is Linda, and I would do anything for Linda. Linda is sick, so Linda needs me. Nothing else matters.

Oh yes, the suicidal. Well, the problem is this, I have been passively suicidal for some time now. I have given many things away, I have finished projects, I have made sure the life insurance is up to date, I have given instructions on my cremation and burial and I have said, about five times a week, “I want to die.” Now that has gone up to about 10 times a day. So not exactly “But..but..there were no signs!” The thing is I have no hope: what I see before me is a harsh and painful death over a short period of time OR an elongated death which is even more painful and which now, housebound, I serve no purpose, I have no purpose, I have no hope. No hope. My Goal is Hawaii by May. I started to work toward that. Linda did not. She said, “Yeah Hawaii.” But we are in the usual medical vortex of issues ill people face: financial, time, medications, doctors, specialist, etc. Also, the concentrator that is supposed to be here.....where is it? And I am honestly tired, like bone tired, burnt out tired. I just want to lie down and be ill. I want the pain to stop. And yesterday, after Linda had a pout, I decided that this was as good a time as any and attempted to induce the stress or strain to stop my heart and lungs. Which also included removing my pain meds and letting them leave my body. I was only partially successful (some stopping breathing and pain of interesting magnitude; now back on pain meds, body still doesn't seem to know!).

Now, deep down, I WANT to live, the problem is I am spending 6+ hours a day fighting everything from financial issues to medical ones. I am tired. And these aren’t even issues that would help me live longer or improve my quality of life. This is just the regular rain of shit!

So what changed? I realized a few hours after waking up that Linda’s responses were off, not like Linda, but atypical, that indeed, she was sick, very sick and needed help. Linda needed me. And that even the pout was probably a reaction to the pain she was feeling, and not being able to treat. Once I found that out I worked for seven or eight hours to care for Linda, to find out the source of the problem (medication reaction) and to take care of her as best possible. Somewhere along there, a tiny sliver of reflected hope showed up. Sort of like sunlight reflecting off a wall as seen from a darkened jail cell. And maybe tomorrow I will be able to move into the type of hope that will change things; change viewpoints. For example I want to be part of the BC race series. I have to give them the money NOW (because Xmas week is the time people have lots of extra money!). So no $100, no racing wheelchair, no races. I honestly don’t know if I will be able to do a single race. But if I sign up, I am signing up for a future; a future where I am alive to do races, where I do them, whether it is a good idea or not! I want to do that; I want to sign up for hope; tomorrow will tell me if I can.

I have in many ways, lost my way. When I lie in the dark, in the pain, I do not know what to think of or remember, what to dream about in the future to help me make it another day. Many days, I feel already dead, that anything spent or given or even left for me to drink or eat is a waste because I am DEAD, the critical moment just hasn’t happened yet. I don’t think that is the type of thinking that is going to keep me going until the summer, do you? This is a HARD winter.

I guess for me and all those for whom this winter is not a pleasant one, I will not start singing about “tomorrow, tomorrow….” Or about sunshine and raindrops. I will say that life is sometimes like eating a bowl of ashes for breakfast. And you eat it EVERY day. Because one, you are too damn ornery to give in just because your life happens to be sad, pathetic or crapped on from a high place. And second, because I believe, even if I can’t remember it now, that there is something I want. Something I will fight for, will fight to live for. I am not a dog. I am not a possession. I am free, and I will live to die free.

People live in a world where there is very little belief. So I ask you to questions, “What would you be willing to die for?”

I promised to die if another could be saved; so who am I to question how this is fulfilled? I am dying, I know that through donation of organs and skin and eyes, at my death many will benefit, but I still believe that if I take this to the end, someone else does not. Silly I know, but I have my needs. When you are where I am, you can make up what gets you through those nights.

The second is harder, “What would you be willing to live for?” Not myself, and recently, the pain and hurt and working every waking moment, and the pain, did I mention that, is wearing me down. Is it enough to live for others? I have to find something to live for. Right now, that is to watch the fourth season of Bones on DVD with Linda. I watched the third season, and it was good. Of course, soup night is always when they find the maggot corpse, but it was good. I want the fourth season, and I hope they release it soon.

27 comments:

SharonMV said...

Dearest Elizabeth,
Take hold of that simple desire - to watch the 4th season of Bones with Linda. I will lend what strength & help I can. I still want to come see you in the spring, the time of cherry blossoms, maybe just at the end, when the blossoms will be falling like snow. It is a hard time for many right now, but also a time of change. Sometimes I feel as though I'm fighting a losing battle against these illnesses. I a happy sometimes, glad to be here & to do what I can. But if I start thinking that it's been 3 years since I've seen the ocean, I start to wonder if I'll ever see it again or hear the waves pound the shore. Even if I don't get better, I'd want to go on, live what life I can. Be there for Dennis. But then, I have the hope of going on, living for years. And I'm so sad that you do not have that. So I say, take whatever little bit of hope you can find, hold it close. Because having you here, your words, your heart & spirit give me hope. I am forever your friend.

Sharon

Drake said...

Beth,

My dear Beth... I want to express the pain I feel in my heart but I don't know how...

I want to help you get where you want to be, I want you to have what you want and what you need, I want you to have a purpose and freedom to be what ever and where ever you want to be.

I would give up my life if it could save yours...call it some sort of suicidal tendency. At least that way, someone would live from my death. I guess that might just be why I am still breathing because I wouldn't be able to "live" with my self if I were to kill my self and no-one benefits from it...so I suppose, I know exactly what you mean?

My heart hurts and cries for you and my mind strains to find the right thing to do or say.

Even though we are not biologically related...know that I love you dearly. You and Linda. I care for you and want only the best for you.

I can't tell you what to do or what not to do...as I can not take away the unbearable pain and suffering...but I selfishly want you to stay...for me, for Linda, for Cheryl, for all those who receive post cards from you... For David and his kittens...

Tell me how not to be so selfish... Tell me how to silence the screams in my heart and how to dry up these tears...
Tell me how to honor your memory and living the life that you don't have which I frequently just want to through away without a care...

I know you are dying...but my heart doesn't want to accept it... You deserve better...

One Sick Mother said...

Elizabeth,

Sorry I haven't been commenting much. I have been reading, but with hand issues and other stuff going on, commenting has not been that easy for me.

I don't think a blog should be necessarily about a single theme, like disability. I think a blog should be a reflection of the person and people are multi-faceted. OK there may be facets that are clearly out-of-sync; say a person who likes to blog about cadavers and needlepoint. In a case like that, it may be wise to separate the two. Unless of course, they did needlepoint *of* cadavers...

I hope the oxygen concentrator gets here soon, and then the Seattle plans can begin in earnest. I do believe once you get competent medical care, that your quality of life will improve and Hawaii will become more of a probability than a possibility.

As to your questions of for whom would I live or die?

The "live" question is the easiest one for me. I would live for my children. I lost my mother young. That was a horrible experience for me, which increased rather than abated over time for about 15 years. Therefore, I will do everything necessary and possible to prevent them re-living my experience.

The "die" question then becomes more difficult: Yes, I would take a bullet to save either of my kids in a haertbeat. But ultimately, how would that serve them? They both have special needs. Without me, their primary carer and main advocate; what would their lives and future hold?

So yeah: "Live" is really the only option I have. It is a no-brainer for me. Even in my darkest times -the worst of which were anti-epileptic drug induced (but the FDA thinks we don't need a black box warning)- I would not leave my children.

Thanks for the thought provocation, as always.

OSM

Kathz said...

For some reason your post drove me to John Donne's "Noctural upon Saint Lucy's Day (being the shortest day of the year)". It's not a cheerful poem but I've found in it reasons for hope, ever since, many years ago, I heard Harold Pinter read it at a CND benefit. (To my surprise I found Pinter one of the best readers of poetry I have ever heard.) The poem is on-line at a number of sites, including http://www.poetryfoundation.org/archive/poem.html?id=173378

The poem is about grief and loss so deep that they can hardly be borne: "I am re-begot/ Of absence, darkness, death: things which are not." Yet it also sees life beyond death; talking of the source of his grief, the poet includes the phrase "her death (which word wrongs her)" - some people live on, not just in a Christian sense, but also because they are forever with the people who loved them. And even as he is swamped in grief, the poet looks towards other lovers ("Enjoy your summer all"). So even in the depth of despair there are moments of hope and survival.

I don't know if this poem speaks to you. But it speaks to me - and does so as your blog speaks, finding love and hope in the darkness and reaching out to others. So I wish you the love and hope and joy you have been so concerned to share, and hope that, even when things are dark and filled with pain, you can feel some sense of what your love has achieved.

Lene Andersen said...

Ooh... that picture of the girl with the red eyes and the panther? Wow. Love! it!

You serve a purpose: love. The biggest purpose of all. And you'd better stay alive - there's a present coming from me and I can't wait to hear what you think. So breathe a bit longer, please? (because it's all about me again... a-hem)

Glad you found out what was wrong with Linda and was able to take care of her. Damn medicines. They help, the screw you over.

What would I be willing to die or live for? Hard question that and one almost impossible to answer theoretically. Someone I love, I guess, to both. To protect someone. This needs thinking about...

rachelcreative said...

Sorry to hear that Linda has been feeling so ill, that you're hope is feeling like it's gone.

You're spirit gives me so much hope Elizabeth and you are the one being there for others when they need it. So it seems hope is still alive.

I wish for a better day for you and for Linda tomorrow.

Ellie said...

Hi Elizabeth,

I wrote a journal entry about you and the postcards and how much they meant to me. http://bad-latin.livejournal.com/99198.html

Have a Merry Christmas. (And I hope Linda feels better soon!)

Veralidaine said...

I am sorry to hear about your bad day and that Linda was ill yesterday. I hope she is feeling better and that you can get some rest!

Hope is something I want for you. I wish I knew how to stop life from taking it away from you so often, but I applaud your determination and strength. You are a wonderfull stubborn person and an excellent friend.

I like the picture with the big gray leopard and the boy in the Santa Claus style cape. Very pretty and a little scary.

Maggie said...

Hi Beth-I'm sorry you are having a hard time with your bio family. I always have to laugh at the holidays and these presentations of the loving family gathering together to celebrate. Who are these people? It was never my experience growing up, and as I continually discover the celebrations of the past paint those of today. However, I have also discovered I do have the power to create and move forward with new traditions. I can be the one in control--I just need to set the boundaries and stick to them. As long as I don't change the rules, nobody can be confused.
Just like we did for your birthday, we can make holiday celebrations about being with people you enjoy, celebrating the holidays the way you want too. I love you.

Dawn Allenbach said...

It's been said a hundred times before, but it bears saying again -- it is harder to find things to live for than die for some days, and not just for people with disabilities. Death seems easier, and living can be so very hard. Finding people to live for is easy, too -- I'll stay alive for my folks because they've already lost two of their kids and I'm all that's left.

But when we get down to it, we have to find the reasons to live for ourselves, and that can be really difficult under different circumstances. It's probably easier for me because I don't have the physical issues you do, but we are both stubborn people. You want to die, but there's a vital, very much alive part of you inside that rails against dying even as you're cutting or doing "suicidal" behaviors. Dare I say that part of you wants to keep going because of the rarity of your condition, because people (no one reading here, of course) wrote you off long ago for whatever reason? You want to shove it in their face and say, "Yeah, I'm terminal, but I'm not going to play by your rules!"

Or maybe I'm projecting.

cheryl g said...

I like the first picture a lot. Being in a place where I can relax with a cat or a catgirl or both sounds really wonderful to me right now.

A pressure cooker of stress – you are so right about that and I can’t even seem to pinpoint all the stressors so I can deal with them.

I am glad Linda is getting those meds out of her system. The side effects list is not good. Medication that is causing more problems than it is solving is no help at all. However, you are a very cute caregiver in the picture.

I will keep fighting for you, for Linda, for me. Maybe that small sliver of hope will grow. Maybe I can generate a miracle. I don’t know but I have to try. I can be stubborn that way. My version of ornery I guess. In the picture I am the black panther.

What would I be willing to die for? For you, for Linda, for friends and family. to save another, to make a positive change in this world. These are all things I believe I would die for.

What would I be willing to live for? The answer is just about the same. If by living I can ease the burdens of my family, my friends, those I love – then I will continue to live in spite of any costs to me.

Rachael said...

I have, in the past, decided to live only because everyone else seemed to think it was a fairly good idea; ie - they weren't killing themselves also. And I have decided to live because I thought my kids would be unfairly shattered by me choosing to die. But these weren't time when I was in physical pain, only emotional/mental.
Much love to you - it's Xmas morning here and sunny, and summer. So big hugs from the other side of the world.
Oh, and Amy got a postcard from you a couple of days ago - love it (of course) and wants to know if you're really coming to NZ - I think Hawaii is a better goal - especially in May!
Love and hugs to Linda too.

Rachael from NZ

Tammy said...

Oh Beth. I LOVE that first picture, and Thank you!
I so wish I could help in some way. I just promise to be here, and take my laptop when I go out of town next time so I can keep in touch with you. I hope Linda is feeling better. It was good that you were able to be care giver for today. You may pay for it tomorrow, but I know you will be thankful for what you were able to do today (That's my motto...I may pay for it later, so be thankful for it now).
The last picture is one of my favorites too! I love the contrast of the red, white and the gorgeous black panther. The artist even included the leopard-ish spots on the panther, which is very accurate since all black panthers really have spots (some inane trivia from my muddled brain)
I hope tomorrow comes with less pain than today, and that Linda is feeling better. I love the future wish of cuddling with Season 4 of Bones. I really like that show too.
I don't travel well, a hell of a lot better than you, but I still whine a lot about it ;-) My daughter and son have never seen the ocean since we are in a very land locked state, so one of my goals for the year is to save enough money to take the kids to the ocean and watch them play in the waves and sand. My son will be the typical surely teen, but will secretly enjoy it too. So, see you have made me figure, if EFM can travel under her extreme circumstances, I can "man up" and handle a 12 hour car trip (don't/won't fly).
You have become an important part of my family. I imagine I think about you 100+ times a day. I was actually telling someone about your begging right down to cardboard sign and tin cup today for kittens and air. lol
Hugs to both you and Linda and trying to send good thoughts out to the universe for a better tomorrow for you both.

Elizabeth McClung said...

I really, really, really want to talk about some of the comments, and thank you so much for sharing yourself. And of giving me so much to think about.

Dawn: yes, that is part of it, I will not give in, they can take my life, but I will not give it. But is that enough, I need to find more. I am guessing that is something you fight too - what is enough to keep going?

I will come back after my nap and respond to every comment, thank you for commenting, I thought I would be truely alone today. And yet, my blog of being alone has made me feel less alone. I hope that is the same with others.

Raccoon said...

First, I love the cat girl with her cat. And I love the cougar/panther.

Now.

Hawaii! Yes! Which month? April or May, I'm guessing. We'll work on that with you, if you want.

You know, there are some specialty sites with latex nursing outfits...

I just read an article about the FDA requiring warnings on anti-epileptic medication, saying that they increase suicidal thoughts & actions. I know, just what you wanted to hear.

The two questions you ask? I don't want to think about them. They are hard questions, and I don't like them.

Now, with that said... Every year, just after the anniversary of my accident, I have a party/open house to celebrate the day that I decided to keep living. And I thank the person who asked me to stay.

And, I'm sticking around because I'm a nice guy. No, really! I don't want people feeling guilty because they weren't there, or because they couldn't stop me.

Linda, get better. Thank you.

yanub said...

Beth, I just sorta wore out my fingers on my own blog tonight, so I can't say much. But I will be busy as all get out tomorrow, and may not have a chance then to tell you how much you mean to me. Carapace and I have both been getting postcards for you, and they will go out Friday, the better to avoid the black hole of Xmas delivery. So, you have to live to see what we are sending. For me, curiosity for what might come next keeps me hanging on nearly as much as knowing that, even when I am tired of my life, there really are people who don't seem to be tired of me, however illogical that may be. Oh, you know exactly what I mean, I think.

OK, the typos have taken over. I think I got all the corrections but that's it for the night! Merry Mithras!

Anna said...

You go girl! Really sorry about your family. But hey, Linda and Cheryl is your true family so...

Take care of yourself and Linda. Yes, still reading the blog. Off to more christmas parties, and no, they are not my "bloodfamily". Christmas can be a complicated business when it comes to family.

thea said...

I am glad you are there for Linda. I am glad she is there for you. When I read where you are, I try to be with you in spirit, to send angels for you. (But not for you to go with them yet - except perhaps to Seattle and Hawaii... travel angels, that sounds cool! I guess they might wear tiny air hostess costumes with wings...).

Elizabeth McClung said...

SharonMV: It is the simple desires that get me from minute to minute but are they enough to get me further. I want Hawaii but all I can remember is snow, and I cannot remember the sun ever shining! That is my memory limit. Yes, I looked over some pictures and saw how many I was in and couldn't remember but seemed happy, Port Townsend, Farmer's markets, and Hoh and the Safari.

I think it is important to dream and to work toward that dream, even if I know the chances are low, it is a chance still. I want you to go to the ocean. In THIS minutes, I don't see why I can't go on for years to, except for those who see me, I am so much reduced from 1 month, 3 months, 6 months that another year does not seem possible. But then, many things I have done don't seem possible right? Why not get greedy? I am waiting for you, my friend. And you WILL have to see the ocean to see me - and the whales.

Drake: you are one of the kindest and most considerate people I have met. You truely have a heart that is NOT imperfect but one which the world needs very badly because it has made you special, made you care.

I want what is best for you too Drake. Thank you for your love. I will say that every day I ask if I have done enough. Linda says I use my will which is like no other for good and bad - and the bad is when I use it on myself, to punish and to push.

I don't know, I feel that life is such a gift, and while I still have it, I fight. Fighting FOR dying - not so good.

Drake, you work like a maniac, you need to learn how to rest and you need to find someone to share joy with I think (going into the part where you can go - shut up!). I climbed a LOT of mountain tops (like about 200) and it was never ENOUGH because I had no one to share it with. Your life is difficult and painful. Your goals will need to reflect this, because they must be YOUR goals. Why imitate the Able bodied? Who cares what they do. Do indoor rock climbing because you like the idea and you think maybe, just maybe it is possible if you have a retention harness like I had (it clicks in every inch you advance so you can rest). No one will ever understand the accomplishments you make but no one will ever be able to duplicate the feeling of accomplishment you have (do not take up indoor rock climbing just of this - this is an example). Your life is always going to be dangerous, full of risk and possible pain. Okay. Now what?

One Sick Mother: Do you want me to send you a copy of Dragon, due to the kindness of someone (sorry, memory gone) I have it and you can do the voice commands for commenting - that doesn't take away the terror and distress over the hands though).

I like the needlepoint on cadavers. That would be an interesting blog. I do try to comment on Ambulance drivers blogs as sort of 'the other side of the view' and the same with RN or floor nurses blogs but it is hard to get people to come out and see the other side. Though I now understand a "good" ambulance call is me impaled on something, actually a 'good call' is me at all becuase my medalert braclet makes it clear it will be very hard to stabilize me so they have to think very quickly.

Oxygen concentrator is in customs and should arrive MONDAY (will see what they say monday! Have a spare for going down, noisy but I can go now!).

I understand the 'live' one, if I could somehow create an abuse detector and find the people who wait, I would, I would fight for ever last breath and second to find those people. There are things of which I think we would both fight for to make sure others never felt as we did. That I understand.

Thanks for your thought provoking question. I guess the question of is there a bad enough feeling or pain to stop you, to make you quit permanently - and the answer is no, because of the children, you always will have more to fight FOR. I admire that, and envy it.

Kathz: I like the poem becuase it is a poem of a person who has passed the veil which society has, on which the marks are written which cannot be unwritten.

'Study me then, you who shall lovers be ...For I am every dead thing

I, by Love's limbec, am the grave
Of all that's nothing.'

I understand that grief and feeling, but I am not filled with that, I am washed it in and then renewed. I am the moon, perhaps not as bright as the sun anymore but while I wane I also wax and renew.

Lene: um *cough*Boy/Uke*cough* with panther. Yes very nice!

As much as I can breath, I breath, I keep breathing when I am too tired. And when I exhaust, Linda or Cheryl breaths for me.

Linda is MUCH better today, I am MUCH worse! oh well. It worked when it needed to.

RachelCreative: the snow is melting and it is a new day - Linda is energized and while I am weak, I continue. I am making list of postcards to send, I am preparing little packages. I go on. Something comes for you. Something I chose and worked on, it is you and for you.

Ellie: thank you very much for the link and the journal entry and wow, one year - they cancelled this years party, gee, I wonder why?

you cheered me up today, thank you for that gift.

Veralidaine: I too like that picture, I think it is something about the danger that is always there and part of us. Maybe that is what is so scary about people like me, my leopard is out there for people to see, nothing pretending I am healthy.

I will find hope, and until then I will find distraction!

Maggie: it is ironic because I have recieved so many emails from people about control and wanting control - what is to control, I sit here, I lie there - I AM controlled by the beast inside me, breaking up my nerves, driving drunk in my brain. But yes, who are those families, who have music swell when someone comes home. I would use the buzzer to get up and my parents would be like, "Why are you here?" and I would be, "Let me in." and they would be, "You didn't call ahead!" haha

Dawn: I am glad that your folks are an anchor for you. And yes, it is very easy, particularly when one crosses or sits on the border to Deathville, to think how easy it would be and why am I working so damn hard to be over here? Somedays, there seems no adequate answer.

Oh, I think you have PLENTY of physical circumstances, but you are right, I NEED to find a reason for myself, I need to find a reason for me to fight. And maybe becuase everyone has left, and yet I go on, is enough, maybe. Thank you for reminding me that just becuase the textbook says "progression is X, death is Y" - well screw that - as I say, it has only been 100% fatal.....so FAR!

Also, I am scared, because it IS always there, and I don't know how it will come, I want a bit of control, not on a cart with people shouting things and needles here and tubes there and the last words I hear are "we're losing her" - no dammit, let me go when I choose to go. But it doesn't seem to work that way.

Cheryl: well you know my major project is to get you dating big time - I was going to steal your picture and then pretend to be you and then sort of tell you, "By the way you have a date on Tuesday!" But then I thought how even with your back you could stomp me pretty bad. But it made me smile.

The pressure is off slightly, I am now in the bubble, and we have one major problem solved, and linda is responding normally - she said, "I'm hungry" today - she said yesterday she was hungry but couldn't manage to get to the kitchen t eat.

Second Goal, road trip for you and Linda to see your family - your family is not as my family - you need to see them, they MATTER. I know by seeing what I don't have how much you two need to be reminded what you do.

Racheal: I also have had that, though not to live by peer pressure but by fear that there might BE some sort of afterlife and I would finally get out of this one only to pop up again, with a "oh for goodness sakes! Not again!"

I am glad she likes the card and I would love to go to New Zealand, I just have to figure out some sort of scholarship like the humbolt or the fulbright which would send me there. That would be great! I have always wanted to see New Zealand. And of course then a short hope to Canberra for a knitting circle with my friends there! I have decided with my hand issues I will knit with my wrists and my teeth - I just need to figure out the breathing.

Have a happy Xmas/Boxing day!

Tammy: I was hoping to help you, give you a tiny mental break from where you are.

You were right, I was very thankful for being able to be the caregiver, I was just impatient today as I was immobile, to find out how she was as she was much improved and hardly would talk to me as she zipped about - Do I have a child? Worse, a TEEN?

I think that with maybe a stop at 6 hours, why is it not possible. I think the ocean would be nice. I think the ocean is very possible. People will never understand the costs you calculate to pay, but you can't find those magic 1/3 of the time moments (of course might end up with the disaster 1/3rd moments) if you don't try. I hope you go. Very much. So much I would offer to drive! Please let me drive, I only pass out every hour or so! No one will let me drive, I make the trip more exciting!

Don't worry, still have cup and sign, was thinking of taking it on the road with me - pictures of me begging for japanese kittens in all the major cities around!

Raccoon: I have to check the weather, if it is cool enough I would like the first week of may, as no vacation, the flights are cheap or maybe last week of april. We could meet, yes, you would go. We could go see the Kyoto ancient shrine that was moved there and then have an Onsen! I want, I want hawaii, I don't know about a road trip to SF, I suppose that is more reasonable now, that we are stabile and I just sold another DVD set on ebay tonight. Need to make a jar and put the money in it. I want Hawaii, I think I can fly there from seattle and not die. I can get there in time to sleep.

About the meds, since my anti-seizure meds were doubled same time I got added stressors that makes total sense!

You don't want to answer them - okay, I can't tell if you are joking and if not, at least you are honest which is courage also.

I think I would like to thank that person too. Becuase I am glad to know you and if you didn't stay I don't think that would happen. Do I think parts of your life suck? Totally! (By the way, parts of mine do too!) - Do I think there are parts of your life that are pretty darn good. Yeah. I don't know the whole story, like people don't really know how I can pass out midsentence, seizure then stop breathing, going to from a joke to almost dead in 4 minutes. You have to see it to believe it almost.

If that was too personal, I hope you forgive me, next time I will pretend to be asleep so you can talk to the sane one (linda!).

Yes, that actually stopped me many a time, trying to figure a way to do without Linda finding me, and now, trying to figure a way to do it without Linda assisting me and going to jail.

Yanub: I read the blog and it sounds like you are getting ready for being worn out too. I was hoping you and carapace were getting postcards FROM me - I did send you one and Carapace and others. I am looking forward to your recent batch!

I know what you mean, when I can see so clearly how crap I really am, there are these people who are blind to what is obvious and not only that are pretty adament about how they want me around. It is very difficult to have a logical discussion about my total failure as a human with them, they are irrational, and overwhelming with....what are those things again? Feelings!

Anna: You go! Another party, excellent! About the complicated - that is true and true!

Cheers

One Sick Mother said...

Elizabeth,

I hope you are having a good day today.

Thanks for the offer, but I actually have Dragon. However, I think he hates me. Computer wiz I used to be, but I am definitely NOT a Dragon whisperer.

I tried to use it on my regular desktop PC, but it couldn't hear me in this room. Something about ambient noise. I changed headsets. Twice! But that didn't work. OK fine. I moved its scaly arse to the laptop and tried in the living room.

Nope. It didn't like the living room either. Change headsets (twice): Nope.

I went upstairs to my (cold) bedroom. It liked my bedroom. My bedroom seemed to have the tomb-like ambiance it desired. This surprised me as I had always thought Dragons, being cold-blooded would prefer the warmth...

No matter. I climbed into bed to try and stay warm and started trying to train the software to understand me.

I have an accent. My accent is like none you have heard before, because It reflects all the places I have lived and a person I have lived with for many years. So it is Dublin, South London, Glasgow and New York all rolled up together. (yes. Freaky)

Dragon laughed at my accent. It chortled, kicked it's legs in the air and made fun of it. I was reading the prepared text, so it *should* have had some sort of idea what I was saying, but it chose to not even try. I read the training text, and Dragon spouted all kinds of junk in return. I tried all three headsets, but Dragon scoffed at each.

Now maybe I could have persevered, and patiently, lovingly tried to calm it down and get it to complete its training in a sensible manner. I should be able to do this. I have special needs kids. But by that time, I was in my bed, freezing; surrounded by headsets, wires, spare batteries, books and Stuff, and I decided that Dragon was a mean, nasty old bastard and I wasn't going to have anything more to do with him.

He lives on my laptop still. I hear him chortling every now and again. And his creators still e-mail me with promises of upgrades and special offers.

Yeah, right!

OSM

Neil said...

Dearest Beth: I'm sorry that I haven't had time to comment. I skimmed you post far too quickly yesterday morning, since I had to go to work, and you're right: family commitments are going to keep me aay from you and Linda for today. But I'll read and catch up this evening. That's a promise.

In the meantime, taking my cue from Beth's thoughts on Christianity...

Happy Zombie Cannibal Day, everyone!!

With group hugs, and love to everyone,
Neil
in Regina, where the temperature went up yesterday, and we don't have a wind chill warning for the first time in 12 days or so.

Lene Andersen said...

OK, boy then! Hard to tell - big eyes (RED!), the red thing is a cloak on second view, although it sorta looked lik a dress and... well. See why I get confused with the Uke? Still, love it.

I'm glad your body worked when Linda needed you - being needed is a good thing, reminds you that you don't just receive in a tangible way. Sometimes, it's hard to really understand that giving love is enough, more than enough and being able to give in a practical sense? Nice. I hear ya. Glad Linda's better, sad it took so much out of you.

marie said...

Elizabeth,

Your biological family are jerks! How could they not want to delight in their beautiful, smart, loving daughter/sister/aunt? So many people cannot see the wonderful gifts they are given.

Don't you dare let those jerks decide your value. Listen to all the people that you have touched and smile in all the good you create despite the ugliness that has happened.

Marie

Neil said...

I would prefer not that you not be in pain. But I would also prefer that you not be dead. I pray that you do see some relief, perhaps from a visit to a Seattle doctor.

I understand you feeling suicidal, but I hope the feeling passes. I realize it hasn't for some time, but I can have hope, can't I?

IS this a severe case of seasonal Affective Disorder? Looking forward to racing in the spring might help you through the winter.

If you won't live for yourself, please live for Linda; she needs you while she's sick.

You have given me a huge gift, dear Beth. I have been enlightened by your blog; I have changed - I hope it's for the better. I shall always treasure having known you through your blog.

I also hope that you get what you need: relief from pain being the first thing.

And I love the first image, with the cat, is just beautiful.

I wish for you a new family, one you can love and who loves you. That family is here on the Internet, but it's too damn hard to hug you while so far away.

So, for now its only much love and zen hugs,
Neil

thea said...

I am relieved to hear Linda seems to be more okay than before. I know you have been concerned with her additional issues for a while now. I am glad you are able to care for her when she needs that. But goodness, take care of yourself too.

Of course you're human, all of these parts together that make up you. I am glad too that you have the family that you do have, Linda and Cheryl and lots of your family in different parts of the world.

A Bear in the Woods said...

Being hopeless in the night...
I understand that.


The thing that says life to me in your post is your presence and caring Linda. I love that.

SharonMV said...

Dear Beth,
I'm glad Linda is better. Yes, I have a plan, a few more doctor appointments to sort out Lupus/and overlap of some other kind of autoimmune arthritis, another doctor (endocrinologist) to take care of adrenal problems. Some IV antibiotics to fight infection in my knee & respiratory infections. And get my IVIG dosage raised. I know my primary doctor will help. The result: I will get better. I will do things & go places & see Beth!!

Happy Boxing Day
Love, Sharon