....or Indy so I can remember that I’m not dead yet. Sorry, still split on names but I am sure this will resolve itself soon. Second thing is that after seeing me in my fox eared hat Linda immediately demanded that she be able to wear it.
She is very much like a sibling sometimes and I am surprised she even gave it back. But it suits her so maybe we will get a cat eared one for her.Next important thing is that I am writing this while wearing a corset. A black corset with lace and black ribbons down the back. Will anyone see me wearing this? No. But I have decided that I, not my disease will start to dictate some things.
I think I have to thank Abi for mentioning she had a corset, of which I want a picture (purple corset?) of her in it. And it helped me decide, “I will wear a corset today; in fact tomorrow when I go out to the pub I will wear a corset and a skirt or maybe I will wear something else but I am going to dress up!”Instead of just transferring out of bed, I’m going to reclaim sexual playfulness, my whimsy - I want it all (take a note!).
Yes it will take energy but with Linda to help, and Cheryl it is possible, and that is what I am about, right? The possible. I live with the sword above my head on thread. Maybe my foot will stop hurting or the other will go back to normal size if the letter sent gets read and I get a better doctor. But right now, I am living. Living. Not Dead. And I plan on doing that for some time. And I want to thank Frida, Cath, Tom, TJ, Raccoon, Wendryn, Abi, Lene, Robin, Anna, and so many other people because…..the plan is starting to work. I am looking forward to Manga. Indeed, I ordered some with gift certificates last night so that they would arrive in TWO Fridays from now. I want to look forward to every Saturday when the post comes.I am READING. Do you know how long it has been since I have read?
I am reading a manga series called Suzuka about track and a romance triangle on the track team because of my memory regression, I remember my track training for the hurdles, the hours spent in trying to get my lag leg to go lower, to just clear the hurdles. The running sprints until you vomit. The high jump, over and over. That is one HARD piece of metal to land on. So a romance around a female high jumper (which I did) and a male 100 yard sprinter (which I did not, I did 220, 440 and 110 hurdles) is right up my alley (plus the team manager who gets people towels and is after the guy). Reading is fun. I think I missed it. I will try to get a book or two of the series a week.There is also, to get a bit biological, two different pro-biotics on the wishlist, as we have figured out that I have absolutely no natural fauna in my intestines. So the more pro-biotics we have, the more we can try to restart that and the more I can absorb different minerals and vitamins from my food, which I haven’t been. That means more energy. Am I going to beat this disease? Dunno, but I’m not waiting around for some doctor who won’t order an X-ray. With the help of many, many people I am starting to look ahead. And I am entering the Times Colonist 10K that is in six to seven weeks. I would like to find another race before that, as I am already in training. That 10K is part of the B.C. Race Series and will give me a ranking, provincially and nationally, if I want to go to other races in the series. Will I pass out? Yeah. Will I make the finish? Wait and see. What I will say is that the head coach of wheelchair racing will be there to race, and it will be 17 years of racing for him. He is faster than me by 8-9 minutes. I am going to try and pass him. I am going to try and finish before him.
That’s right, I am not just participating, I am RACING.Hard to believe it but yes, Elizabeth McClung has a race, like competition, and has an opponent and almost has a plan. Okay, yes he is a male and has been doing this well, almost decades longer than me. He has a better racing chair than me, he has better racing gloves than me, he has better form than me, and he won’t have to be on oxygen or carry oxygen canisters. That is the down side, but my advantages are…..um……I can work on my form AND I will be on oxygen, and I will only be on oxygen for the time it took him to finish the course last year, 48 minutes. Yeah, is someone who is terminal and stops breathing and has heart problems taking gambles with oxygen a good idea? No, but it is a very Elizabeth idea. I am serious. I race, I go, and have one good hour, that is all I need, one good hour to live my life. I am willing to work toward that.
Most people can’t understand the complexity and personal devastation of this disease. I am now advanced MS in the morning and progressed ALS at night. That’s just the physical. It is my mind, ripped slowly to pieces that bothers me the most. I say that I can’t remember beyond 24 hour or 48 hours with emotional exceptions and people say, “Oh, wow, that’s me on a good day.” Really? Do you know the name of your partner or do you say, “Lady, why am I in this bed?” Do you remember the names of your children, your last vacation, you appointment this week, your appointment last week, the last time you had sex, the last time you had a romantic evening, the person you fell in love with, and how that happened?
Do you know what day it is, what month, what year? Okay, now take all that away, take everything away and you don’t know what country or city you are in and try to go get a coffee. First, you don’t know where money is kept, but say you have some in the wheelchair, you don’t know why you are in a wheelchair but you body seems to know. They ask your name, and you realize you don’t know what your middle name is. You stutter out your name and they start asking about loyalty cards and people are staring 
and you realize you don’t have a clue what they are on about, or what just happened to coffee? You have never heard of this chain, STAR buck – is it named after a horse or a spaceship? You just want to be home. But when you are there a total stranger comes in and says your name. You ask what they are doing? You want to dial the police. They say they come every week to get you lunch. They look toward the kitchen so you can tell they have been here before, so you let them stay. You ask them questions about what they are doing and how long they are staying and they laugh and say you ask the same questions every week. The agency won’t let you take pictures of the workers so that you have an idea who might come through that door. They scare you because they know so much about you that even you don’t know.That is an iota of what is like, not forgotten keys but not knowing how to get to the bathroom in your own apartment because you don’t recognize the apartment as yours and you are too scared to open doors randomly.
It is about having a conversation or sending an email you spent an hour on only to be told you did that three days ago. It is about buying things over and over and over.So because you have an extraordinary IQ, you can process information quickly, and you take every single eye and body cue to play along. A person comes in and knows where your phone is, so they must be home care. They know your name and you apologize and ask theirs, and did that problem get resolved? (Everyone has a problem) So they start talking about their daughter, and suddenly you know something, and they think you remember. And that is how you get by, spending all your time either taking cues or reminding yourself EVERY day of what you have to remember the next day, leaving lists, saying things over and over, in order to remember.
Then there is regression. Which now seems permanent. Whatever age I am biologically, that is not where I am getting my language, or my memory. Some days I am 20, some days I am 23, sometimes 18, I am fresh in the world.
I have all sorts of dreams and hopes and plans I want to try out. Linda talks about a class and I tell her that I want to take pole dancing, and laugh about how my parents would freak, so let’s do it! 
I want to take a degree to be a lawyer. I want to plan a trip to go on a Safari, and then maybe I could go back to California and hike the San Gabriels, see all the white tailed deer up there. My life is ahead of me, my choices ahead of me. I want to get up tomorrow and go up to uni 
and see what clubs are interesting, maybe I will join the frisbee golf group, only there are WAY too many guys with beards in that group. I want to do something fun, I want to learn juggling from some guy and have him try to pick me up and then leave with my girlfriend. I need to get back on my jogging schedule, because there is a marathon coming up….what city are we in again? Oh, we can do the Seattle marathon then. And these are the memories I know, the running, the practice. I like reading manga, I want to work in a book store, that would be cool, wouldn’t it, then I could buy it at discount or maybe read it for free. I can do that, work part time in the book store while I go to uni for my law degree, I mean I aced my first degree and I was invited to join the debate team. These are my memories, these are my words, this happens not once but multiple times a day.The answer is always the same. You can’t, I’m sorry sweetie but you can’t, you did your degrees and now you are very sick. “Like how sick, like something from university, a bad flu?”
Like dying.
What?
Like dying. And she tells me and I say, no, no, I’m going to go to law school, and I’m crying and I’m going to campus to find some friends and she says that no, I am too weak for that.
And I cry and tell her it is the mono or something like that and she tells me, again, almost every day that I can’t, remember, I can’t. Because I’m not 21, because I’m not 19, because I’m not starting my life with all sorts of choices ahead of me, I am finishing, and just hanging on. And please calm down or it will trigger a seizure. “A seizure? I don’t have seizures?” You do now sweetie. And please, you don’t want one.Virtually every day, sometimes several times a day. For Linda it must be hell, but for me? I had every dream, every future that I had ripped away. I was looking forward to the new semester, to pole dancing class to having FUN,
come on, you are only 21 once! Only now I’m not? And all that is gone, and I can’t get a job so I can have fun? And I am dying? And I have seizures, and by this time my speech is going, and my eyes widen in horror as my speech becomes slurred to the point of mush. 
And Linda lifts me, Linda LIFTS ME? She lifts me into a wheelchair and pushes me to the bed. And I am not going to take a year off and travel the world, or go to Australia on a six month work visa, or head out and apply around town, because I am in a wheelchair and there in front of me is a hospital bed. And THIS is my life. THIS.
I try not to cry but the pain and the difference between what my mind tells me is possible and what my body is saying, what is in front of me is too much. NO, No, no, I AM 21! I am 19! I am 23! I have choices, I have to go on the skiing trip this month and do the jumps and scare myself and everyone else!
Not at ALL like last year when I ended up at the bottom of the slope with the "Caution Hazard!" sign wrapped around me! I am not this person being lifted into a hospital bed. That’s not me, it’s not me. I can run.....why can’t they see? I can run.
They say I run like a gazelle.Everything I know is fracturing under me, like ice cracking, showing the icy water beneath.
That describes a pretty good day. This blog is the best four hours of 48 to 64 hours. There are all sorts of hell.
Right now, writing this, I think I am probably 25 to 27, I know I am not 21 but I have no idea what age I am. I know I am in Victoria but most things Linda talks about I don’t remember. I can tell they are important to her but I can’t remember, I can’t. I remember I used to try until my brain exploded. Now I just smile that sad smile which means, that she is talking to the empty shell. Sometimes I regress to 7 or 5 and that isn’t good, or 12.
12 means at least communication. Even if there is a lot of pouting. Sometimes it is 4 or 5 and I go around untying everything in sight, every shoelace is untied, and I giggle all the time. I don’t think I’ve gotten to the point where I flush toilet paper, but I am sure I will. That is just part of this disease. The chance to talk to ME, to even part of me, the me who can recognize from the bookshelves that this was a pretty damn smart person. Even if I can’t feel anything about these books, they are very interesting and odd, from 17th century chapbooks and Babylonian dictionaries to books of poisons. So talking to the me that can recognize that I am probably not 25 is fortunate, as I won’t be here for long. Hard to know how long. And 25 is a LOT less emotional than 19.
I don’t know if that helps you understand what is happening to me, or if you just find it amusing. It isn’t amusing when someone comes in and tells you everything you hope and dream and believe in, and are hoping for in the future is a LIE, because what you feel and think is a LIE. Because you are dying and now it is time to go to your hospital bed,
and you try to protest and you can’t speak, and you are too weak to move. And you try to tell them, no, that isn’t true! How can all that I think be a lie, the vacation in spring break, the job at the university bookstore, the class paper coming up, how can that be a lie? And that is replaced with the knowledge which drips down like acid that you are dying, that will die, you will die soon. And that none of the things you had planned in your brain will happen. 
All of your hopes and choices are gone, that you are going to die, and this is just part of your brain dying.I hope that helps. Parts of the brain haven't stopped dying, or haven't yet. I try with the parts I have when I am connected to keep challenging myself mentally. I am trying to create new brain connections with reading. I have even picked out some books with WORDS to read. And Linda is challenging herself too; she has chosen a book on care-giving highly recommended on the wishlist. Also after I pestered her to have some FUN time, she put on all the romances from Flipside she hasn’t read yet (flipside is a funny, 21st century romance with independent women and gay side characters – 1 cent plus postage). As for me, the first four books I want to try reading are on the wishlist: Gosick (Conan Doyle style mystery with goth girl detective), Be with You and Ballad of the Shinigami vol 1 & 2. The last three are about death, and Shinigami is about how Momo, a girl with a cat who helps people move on.
While Be with You is about what death means for those who die and those left behind. The four are on the wishlist and all qualify for 4 books for the price of three for free shipping. If anyone wants to get me a gift, this is what I would like: These four books so I can learn to read, and to learn how other people deal with dying. If not, that is okay too, I will find a way. (oh, yes, Linda learned early on that when I regress to 10 and have no sense of money that using her Visa to buy a dozen plushies on Amazon is a good reason to hide the Visa!)The problem is that not even Linda can accept the disease, and I can’t either. I force myself harder and harder to work; because I have less and less time when I have a workable mind. I WANT e-friends. But I am chasing a life, that isn’t mine anymore. Yes, I am going to race, but not if I can’t learn how to sit and read, or sit and watch TV or roll to the park and relax in the sun.
I am not 21 or 23 and I don’t have that energy, no matter what my mind says. I need to learn how to have fun as ME, not chasing something I no longer can be.My new wheelchair arrives next week. I will be embarrassed to take it outside. While I am too weak to push my manual myself, it seems like giving in.
I already have to give in and give up dreams every day. But I will, because I have too. That is how I fight now, by forcing myself to take it, and to go on.
Like all medical stuff we got hit with a big bill, as the ramp to get it into our van isn’t covered, and geez are those things expensive (ouch!). Our medical fund has taken a hit between that, the non covered medicine, and the pro-biotics. It turns out that dying, or rather NOT dying is an expensive business. Almost daily expensive. Particularly the oxygen and the full EMT station we have here at home (once the heart paddles arrive we will have the same medicine and equipment as a hospital too, except IV’s and blood transfusions).
But I am going in the 10K, and other races, and go to Hawaii. So next week, I am selling my bike. My custom make extra large frame and extra spokes and triple bunted touring bike
(the frame is 27 inches, you can’t ride it if you are under 6’2”). So if you are interested let me know. Same with my skis. While my brain tells me I CAN ride my bike, the other part tells me that no, I have limited time and if I want to have dreams, I need to do what I must to fulfill them, NOW.There is no doubt about the dying, and I don’t determine that or the regressions, I have no control over that. I do have control over the race and the training and wearing a corset even though I am staying inside today because I am a still a sexy wild woman. And Linda will see it. If you get what I mean. This is what I am after four days of being sick and having a fever.
Don’t like it? I’ll race you? Oh, you are able bodied, I’ll STILL race you! I may have the strength of a kitten but I got my attitude back, at least off and on. Thanks to everyone who worked with me to help me get that. I will wear a corset tomorrow, and I will go out. Because tomorrow may be the day I die, but if not, I am looking forward to the manga coming, and starting to read books with all words again. And that was a group effort.
Posts
21 comments:
Thanks for that description of what your disease is doing to me, it gets me closer to understanding what you are going through. And what Linda is going through
Thank you as well, for sharing your spirit with us. You are a figher, Beth. Even thinking about fighting in your current situation shows your spirit.
By the way: I noticed several images from the Megami superbook, can I assume someone got it for you off the wish list?
Hi
The thing so scary is that you express your deterioration so well. I have seen it in people I know, (eldery, sorry....) but I have never ever seen or heard it be expressed so I can understand what it is like from the inside.
It sounds like one of the worst nigtmares. Like top ten things not to wish for. Sorry.
I am just going to scream a little thinking of it AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA.
Sorry. But as long as you want to hang in there, I am hanging in here listening. The mangas were beautiful as always.
and thanks to, as my memory is crap, I don't remember. Thanks to ?????????? who wrote about the "waiting for my real life to begin" I cried my eyes out. A song with so many depths. It its playing on my you tube now. THANKS!
Take care all of you
Linda, the hat suits you. Beth, you're crazy - but a good crazy, the wonderful whimsical crazy that's good for people to know.
I'll happily teach you juggling, dear, and hit on you too, but I KNOW you'll be leaving with Linda, since I'm male, kinda hairy, bearded, and married. But we're so alike, 'cause I'm married to a girl too! :)
Now, everyone over 6'2" who needs a pre-loved Univega touring bicycle: Beth and I talked about her bicycle a year ago; if you need a good bike, BUY IT! If I could justify owning a third bicycle, I would have had it a year ago; so someone save me from temptation, please. Just be dead certain your inseam is At Least 36 inches. It's a BIG bicycle, trust me (my Apollo's the same size - I'm 6'5").
Beth dear, you've chosen absolutely beautiful images again. And yes, I was amused by your post, but only the first part. The explanation of not knowing where you are, or why you're there, or your age... that sounds incredibly scary.
Can you draw, Beth? Would your care workers let you draw pictures of them, so you'd have a chance of rceognizing them?
I like Linda in that hat, too! She looks happy.
I always thought you were pretty amazing, and I'm even more convinced of it now. You go through life like this and you aren't terrified, or at least you resist the urge to curl up in a corner. I don't think I could handle it nearly as well.
I'm deeply glad you are looking forward to things again, and reading, and planning to race. EFM forever! :P
You manage to find pictures that perfectly express what you are saying. They are perfect.
Elizabeth,
I got a card from you today. It was important today of all days to hear from somebody who cares, and I thank you from the bottom of my heart.
Your descriptions of your regressions are very vivid and sad. It must be hard enough to learn you are dying once, but to have to "re-learn" and re-experience that many times a day must be very difficult for all of you.
But this is the reason your blog is so important. It is information like this -stuff which is not in the medical books, but which other suffers of your disease (or similar) and their families NEED to know in order to understand some of the implications. You write more meaningfully about it than anyone else could, and while my heart breaks for you, I know that people will be helped by your journal and experience.
Thank you.
How about the kitty having two names? Miko Indy McClung. I like it! ;)
Way to go on wearing the sexy clothes! You are indeed NDY and it's important to feel like a real person every day. It's easy to get sucked into it not mattering if you're feeling shitty or don't go out, but it messes with your head. I've decided to start dressing a little nicer myself - can we have a buddy system with that, please? I need help to start caring about my appearance again. A pact to care when we are at all physically able would help.
Thanks for writing about your reality. It's hard to understand, but you write it so well that I think I begin to get it. And what hell it must be for you and Linda. Big hugs to both of you.
Kawaii! Linda is adorable in your fox-ear hat!
I'm glad you are wearing your corset for sexiness's sake. You ought to have more leather, lace, and velvet. It suits you.
Good for signing up for the race. If you can't wheel yourself, you can use the motorized chair, no? When else would you get the chance to go as fast as possible in that thing?
Oooh! I hear Carapace at the door! Off to buy comics! Yay!
Miko is a good name. As is Indy.
Yay for your black corset, and yay for photos! My corset is indeed purple, and I have plans to get a photo taken when I have moved into my new house and unpacked. Life is too short not to wear the nice clothes - there's no point in leaving them in a drawer when they can give you pleasure.
I am delighted to hear that you are reading again!
I am less delighted with the regression you are experiencing. You oughtn't to be able to have some of these dreams taken away from you, because they have already happened. This disease is very cruel indeed.
This does help me to understand what is happening to you, so thank you for sharing it. Very bland words from me, I realise. This disease makes me feel very helpless; I can't do anything to help in any concrete way. I shall continue to support you, though, of course!
I love the sound of your bike. If I weren't nearly a foot too short for it, I would so want it! I love bikes with a bit of history, and I also love wonderful bikes.
This comment is getting very disjointed! I am so pleased that you are taking control of the aspects of your life that you can control, and are actually doing things just for you, and for you and Linda as a couple. Although most of what you are going through makes me sad inside, your determination and success at doing things for yourself make me happy inside!
Wow the pictures you are illustrating with are beautiful and well chosen. You have captured some beautiful images.
Why not call the kitty Indy Miko? Just a thought…
I personally think the fox eared hat looks better on you. Linda does need a cat eared hat. I know just the place to look too.
Hurrah for corsets! If we go to the pub I will wear mine too. You can help accessorize me with arm warmers if you like.
I am happy to see you reading again and like that you anticipate the post and what gifts and books it brings to you.
I will be there when you do the TC 10K. I will be your own personal medic team. I just don’t trust those idiots they staff the first aid tent with. I don’t doubt that you will race and kick butt too!
I am there when you regress and your memories and perceptions differ from reality. I so wish I could tell you that yes it is mono and you will be all better soon. I see the confusion and fear in your eyes and want to protect you from it all. It truly breaks my heart. Given my emotions I can barely imagine how hellacious it must be for you. I see and I curse that someone as wonderful as you has been given this burden.
I am glad that you are going with the NDY motto. We have many things to look forward too like Sakuracon. You keep going and I will be right here helping.
i am so glad to hear that you are reading. it's the little things sometimes, but it can mean a lot.
That hat is great on Linda... she needs one!
Beth, thank you for another truthful, truth filled post. I DO recognise what you're talking about - it's that bit of dislocation when you wake from a very vivid dream. Two people, one a friend, one more than a friend, who I loved very much once, at different times, just decided to stop contacting me, with no explanation or apparent reason, and ignored repeated attempts at contact even though I know from mutual friends that they're still alive, well, in the same place/at the same address. I dream, absolutely vividly, that I meet one of them and it's wonderful and they missed me and we are so, so happy. And yet I wake up and after a few minutes of 'I'm so glad he's back in my life!' I realise no, he isn't, he'll never be. Or I dream I'm at school, in the one class where I was happy, and I wake up all keen to go into class, then realise that I'm a fat, depressed 40 year old who has to go to work not a keen energetic eleven year old. And it HURTS. It must be so hard for you to go through that again and again and again, it's horrible when it happens once or twice a year.
On a completely different subject, cats ALWAYS have multiple names, Miko Indy is a great name, plushy can be Miko when she's cute or feisty and Indy when she's being determined or when you need her strength and comfort. Even if you start out with a cat called 'Cat' they soon acquire other names, like 'Puss' or 'saggy britches' or 'madam'. There's that TS Eliot piece about 'the naming of cats', so it's not just something I think!
The racing sounds scary, and mad, and exciting, and daunting, and it's wonderful to hear that EFM has not gained any of that boring sensible just-sit-back attitude despite her rough days and weeks!
Dear Beth,
I love you. Your warrior spirit is coming out again. You help me learn to fight. Even though what I have to deal with is so much less devastating than what you go through, it is hard to keep fighting. Just last night, I was thinking no! this house will not be my world for the rest of my life - I will see forests & oceans again, I will have friends, Dennis & I will have a life that's more than this, we'll go out together, travel, I will have a garden again - not just pressed flowers to remind me. Maybe I'll take up horseback riding.
Once again, I am at the outskirts of what you live, just at the edges of understanding what life is like for you. When I can't think of a word, or phrase, or think at all, it is upsetting & annoying. I've learned to deal with it. But when I experience a lapse an my sister says "oh you're having a Senior moment, we all get those", it makes me very angry. Dennis still doesn't understand completely, even when I tell him my brain isn't working. I remember being able to think so hard that I would remember the word I wanted or an acceptable substitute, but I don't have the energy to do that now.
I don't regress, but when my brain & body aren't working, a fever's coming on, I get very emotional and can act like a child. Crying & being "petulant" as Dennis says. But I still know who I am, what year it is (maybe not what day it is), and I know that I'm sick & sometimes even recognize that my illness is why I'm acting & feeling the way I am.
It breaks my heart, dear Elizabeth to read what you go through every day. Your words again have such power, such clarity that you make even the unthinkable intelligible. It must be so very hard for both you & Linda.
I am glad that you are reading again! Due to the neurological effect of my Lupus, I have long periods when I don't have the focus to read much or at all. That's why I glad that I have my art. Maybe I should try some Manga - books with pictures! I certainly enjoy the pictures that accompany your blogs. And I'm happy that you have dreams & plans - even an opponent. No one can equal your competitive nature.
Love to you, Linda & Cheryl
Sharon
Sharon
The hat looks good on Linda too. I am glad to see you looking forward to new races. The memory issues are terrible, though if I were stuck at a certain age, 25 to 27 wouldn't be bad. I'd rather have my memory, as I know you would.
My chair's electric, Elizabeth, and we know I haven't given up--but no way could I push a manual far. Please don't be embarrassed--a lot of people need the power for distance. I don't think people who walk pay a lot of attention to wheelchair type.
Happy Valentine's Day--I wrote a tribute to the fun postcard you sent me, Lust in Orbit, at my blog.
I was going to suggest Neil for the bicycle because I have two things going against me on it: first, I'm too short, and second, I'm already in a power wheelchair...
Then I read that he' already turned it down.
Forget if the agency will let you take pictures -- will the caregivers?
Reading about your memory jumps is scary. I read that and I think "is that what Alzheimer's is like? Dementia? Is that in my family?" It's bad enough that I'm in the wheelchair. I think one of my biggest fears is losing my senses, going blind or deaf. Losing my memory, like you are, I'm not sure if it's just as bad or worse.
Six weeks before your next race? How is your training going?
Geez, Beth. I know you like black humor (and hopefully so does whatever age of Beth you are currently) so I will tell you a thought I had while reading this post: If there was a way to inflict your condition on someone, the US military would probably use it as a method of torture.
Everyone ELSE is only 21 once, but you are 21 many times, only without any of the fun parts! I have often thought how awful it would be to go back to being a young teen... Gosh, your life sounds terrifying.
It's Valentine's night and I have to go pay some attention to my SO, but I will get you your books if nobody has done so already. Reading is good for the heart and head. I have been reading a book too, and it has also been a long time since I read for pleasure. It is a nice thing to rediscover, and I want that for you.
Off to Amazon to see if no one has bought them for you yet.
Oh, and I have to say, your story of being 10 years old mentally and buying yourself a bunch of stuffed animals made me giggle. It's just so... "only in Beth's life." You know? If I don't laugh I'll cry, because it sounds so terrifying to lose time and memories like that, but buying stuffed animals seems like a pretty inocuous consequence.
Raccoon: I think a lot of the regulars would let me take them, but it is the 'new people' who might come back a week or a month later that are the most difficult (and leery: "Let me call the office about that!")
Yes, I guess, I would need to sell it on the west coast as there is where the bike gets best use.
Yes Raccoon apparently this is what early onset Alzhiemers and episodes of Demensia are like. I try to not spend too much of my time in fear as I know most Alizheimer's patients end up with all fear, toward everyone, toward a world which makes no sense, afraid all the time.
I lose sight too, but I find this worse, becuase I lose heart and I lose time, to lose 20-40% of a day in confusion a day, and then with the loss of memory all the time, the two make so much effort just appearing even someone sensible.
Training going badly
Jane: YES, that is the closest I can compare this too, and the total knowledge of another reality which is there totally taken away, or worse, slowly stripped away until all the good is gone, and to find out that you are not that person, not that age, not that future but rather have no future at all but pain, and more pain and more of this until you die.
Well, I am actually doing the racing to kick myself a kick in the butt, and I hope it doesn't put me in hospital but I am tired of being alone in a room. I want to be out there again, even if it is one last time.
Neil: Thanks for promoting the bike, I certainly don't remember talking about it you but you sure know the details, including the company. Thanks for the compliment on the images.
No, my loss of micro hand control makes drawing particularly difficult and not something I used to be skilled at before. Thanks though.
SharonMV: You DO have friends, and you will have a life more than this. can you do a window box of flowers or maybe herbs, that is minor planting and watering a few times a day? If we were there, we would come and kidnap you and take you to the ocean. Definately.
Yes, I hate it when people compare a medically complex condition with a minor irritation, I don't say to people, "Oh yeah, my kid in Kindergarden has the same problem counting" - as they find that offensive - well so I do when I am compared to forgetting something minor ONCE versus a full brain fog.
Emotional lability (strong emotions) is a symptom of many different diseases and is a legitimate condition and nothing to be ashamed about - any more than needing insulin, or a cane.
I am working on the reading, I have hopes, I am trying to keep going, and go forward. I will keep trying to fight this autoimmune disease in my brain which steals from me. Thanks.
I did go out on the deck today to view my former garden. I had a lovely pot garden (as in containers not the other kind). thanks to our recent rains, there were signs of life. Mostly dandelions & other weeds, but a few volunteer flowers sprouting up and a couple of perrenials still barely alive. I pulled some weeds. I think I'll try to plant something this spring. It's difficult when all your time is taken up with being sick, doctor appointments & the doing the bare necesseties of life. I'll have to start growing flowers again before I run out of my store of pressed ones. And I must keep with the flower stickers!
Sharon
PS: planning for a visit to the craft store tomorrow and next Sunday i hope will be new kitty day
Victor: I had megami deluxe vol 12 from Japan, I think they took some of the more popular released series over here like Mai Hime in making Megami Deluxe 1 - I still wait, I thought it was coming but is now BACK on the wait list - darn!
Sometimes the only way to fight is to accept the unacceptable and try to go on as if it is normal.
Anna: The post cost me a lot, in mental preperation and in writing so I am glad I could translate the experience. It is not particularly fun to find out you are dying soon......every day for the first time. Cheryl says that just one time she wishes she could tell me, "Yes, it is mononucleosis, just take it easy and you will be back in uni in a month."
Wendryn: Linda looks good in the hate but she has to get her own.
I am terrified, more than I seem able to explain, and yet, it is odd how even soul burning suffering can be bourne again and again, perhaps all my plans mean nothing as the autoimmune eats my brain but it keeps me busy believing I am fighting.
One Sick Mother: I am very glad you got a postcard, and today, if this was the day you needed it.
This too is my hope, that people will be able to recognize relatives of all ages and perhaps have more empathy for them, as they struggle than mere frustration. That if I have to go, let me go doing good.
There was so much to comment on in this post that I plum forgot your plans for training - yay! Goals are good. Reminders of who we are, who we were "before", who we still are inside.
I find that a certain willful blindness to reality is the only way to live. And sometimes, when you go for something everyone else (even sometimes you) don't think you can do, you surprise yourself by how close you get to it. You have to keep living, keep going. Planning as if there will be a tomorrow. As my dear father used to say "fuck on rehardless!". ;)
I read/heard about later stage Alzheimer's that it's best for the person that those around them jump into their reality. Wherever their mind is at those around go with it.
I'm still trying to figure out if, with a sort of transient, ebbing and flowing of memory loss and sequencing, this would feel like a kind of betrayal or make life flow easier. Would you, for instance, realise that on days when you were 18 those around you colluded with that view of reality? Would it feel like a lie?
But it seems most of your care workers don't have the training, interest or sensitivity to even think about such things anyway. They only seem to interupt life sometimes!
I am surprised care workers don't have some kind of uniform or badge so you can associate the uniform with the care giving.
Would picture signs on doors help you to recognise what is within each room maybe?
We are not a society geared up for brain damage, dying or anything that is the least bit different to the average.
Your kitty looks & sounds the type to have at least 2 names. Our cat is called all sorts of things depending on the occasion not all them compliments ;o)
I think your blog should be mandatory reading for everyone in the world, at least posts like this. It's so heart-breaking but not only because it's sad, but because you write so incredibly well. I know you probably feel you cannot truly, fully convey how you feel about life/your illness/etc, as there is no way we can ever fully convey our inner life to someone else. But I think you do it as well as it is possible, and perhaps even better.
Planning to do a 10K race is br*ve (sorry, I know you probably don't like the word), but baring out your soul with your writing is much br*ver. I kind of wish that Linda or someone else would create a book out of your blog (of course it would be better if you could do it yourself!), because more people should read it.
I hope I made some sense with that and didn't just sound like I'm rambling nonsense.
Post a Comment