I don't want advice about this stuff or for anyone to tell me what to do (I feel like I've had enough of that lately and it stresses me out), although I don't mind comments. I'm not looking for any one to feel sorry for me either. I'm just putting this out here because it happened Wednesday evening and I feel like expressing it to an extent.
As some people know (and some people don't), I have occasional seizures, as a side effect of another health issue I had about 15 years ago. Hard to believe my stroke happened that long ago now, but then again, not really, because time flies faster and faster.
I'm not going to get into an elaborate amount of detail abut my seizures and related factors, but I will say I can usually tell less than a minute before one is about to happen, so I can at least sit down on the floor.
But then afterwards, I don't know exactly what happened (I mean I know I had a seizure but I don't remember the part right after that involves getting up off the floor, walking into a different room and so on). This time I think I was even more confused than the last few times. I was confused about what time it was and how long ago the seizure happened (although that's usually the case). I had trouble finding my phone (it was just on my bed which is where I often keep it). I had trouble figuring out how to use my phone, how to find the contact info on my phone, what to press to make a phone call (later I saw that I had sent Darryl two little random emojis on facebook messaging which might have been me trying to use my phone but being confused). So I felt more confused (and for a longer time) than I usually do after a seizure. I feel like it took me at least 20 minutes to figure out how to use the phone.
I had been upset, stressed and sad on Tuesday. I then felt somewhat better on Wednesday, but still sad. Even though I've been in menopause for about a year or two now, it felt somewhat similar to a variation on PMS, which I haven't had in quite a while.
Then shortly before the damned seizure happened, it suddenly got substantially worse. I started to feel guilty about my FB Wall Posts/personal blog post from Tuesday, my heart started racing a bit, I felt very unnaturally negative and off-filter and as if I was on the brink of a panic attack. I couldn't make it go away and it was getting worse. It was very uncomfortable (mentally more so than physically). I thought about lying down because I didn't know what else to do. First I was going to pee, but then while on the toilet, the sensation I have right before a seizure came over me. I quickly wiped, flushed, moved into my computer room, sat down where I usually sit down there and had the very uncomfortable out-of-control sensation as if my neck is suddenly twisting itself to one side (the right side) and in my mind, I'm randomly sitting on my computer chair (even though I'm actually sitting on the floor) and seeing some random cartoon-ish images. I remember seeing a cartoon chicken.
Next thing I know, I'm in my bedroom, looking for my phone, and after finding it, having trouble figuring out anything about it for quiet a while. I was confused with words, which happens for a while after one of my seizures. I finally managed to call my mom about a minute before midnight (I know she stays up late). But then after we got off the phone, I ended up calling her back again, because I then felt a sore lump on the right back of my head, saw two red marks on the left side of my neck (probably/hopefully just scratches?), and saw that I had bit the inside bottom of my lip. I am not sure how any of those things happened, especially the lump on the back of my head, because last I knew, I was sitting on the floor. Maybe I somehow bumped my head into a door or a wall after I got up. The lump on the back of my head and the scratches on the left side of my neck make me uncomfortable and nervous since I'm not sure exactly what caused them. It sucks not knowing how something happened. It causes me to think a bit about my damned stroke.
The seizure itself also makes me feel uncomfortable and nervous because it's only been a tiny bit more than a month since the last one I had. The last one was October 7, three days after I got my latest Covid vaccine. Normally I don't have seizures anymore near that close together. For a while, I was only having one or two a year. Not one in October and another one in November. Maybe this has something to do with the latest Covid vaccine, because I remember feeling low energy, down and oddly out of it for several days after I got that (more mentally out of it than physically out of it, which I'd not experienced to that extent after one of my previous vaccines). I'm repeating myself again here, but it's bothersome because I don't think I've ever had only about a month before the last seizure. I certainly don't want my seizures to start getting worse or more frequent.
I suppose it could have something to do with hormones or stress. Despite trying not to mentally overreact too much about the election, (not that I'm ignoring it, but I didn't want to escalate my stress into some sort of toxicity) perhaps the disturbing fact that Trump won kicked in more about a week later, plus which some stressful seizure pill oriented paperwork I've been trying to deal with that has to do with health insurance suddenly telling me I might not be eligible for the pills I've been taking for years being largely covered by insurance, so I might have to switch to different generics and deal with different side effects and that's very upsetting to me, because I remember what some of my previous pills side effects were like.
Anyway, apparently it's just been one of those bothersome weeks and hopefully I feel better tomorrow. And hopefully everyone else who is overly stressed out or upset feels better too (but without ignoring real issues).
Showing posts with label stroke. Show all posts
Showing posts with label stroke. Show all posts
1/6/20
Today is the 10 Year Anniversary of the day I could have died
10 Years Ago on this date I underwent an unexpected carotid artery dissection which caused an aneurysm which caused a stroke which caused me to lose some parts of how my brain used to work before that happened.
Hard to believe this was already 10 Years ago now.
This experience changed some parts of my brain, it changed some other parts of my life, but a lot of us undergo different changes...
Hard to believe this was already 10 Years ago now.
This experience changed some parts of my brain, it changed some other parts of my life, but a lot of us undergo different changes...
Still though, even though it's gotten a lot better than it used to be, this particular anniversary date still makes me feel rather uncomfortable mentally - and also uncomfortable about the speed racing of time.
But also lucky to still be alive, active, myself and creatively expressive.
For a little while after the stroke, I was terribly afraid that I might not be able to write poetry anymore, but thank goodness that was not the case. My poetry just became a little different. Here was the first tiny poetry chapbook I created after my stroke.
POST-STROKE - https://www.etsy.com/listing/69547229/post-stroke-by-juliet-cook?ref=shop_home_active_3
But also lucky to still be alive, active, myself and creatively expressive.
For a little while after the stroke, I was terribly afraid that I might not be able to write poetry anymore, but thank goodness that was not the case. My poetry just became a little different. Here was the first tiny poetry chapbook I created after my stroke.
POST-STROKE - https://www.etsy.com/listing/69547229/post-stroke-by-juliet-cook?ref=shop_home_active_3
8/13/19
Some NEW Notes about my DARK PURPLE INTERSECTIONS (inside my Black Doll Head Irises) (Blood Pudding Press for dusie kollektiv 9, 2019)
rob mclennan's Ongoing notes on dusie kollektiv 9 chapbooks includes Dana Teen Lomax + me today 🖤
"The poems in DARK PURPLE INTERSECTIONS seek to explore and understand gestures, decisions and a sense of balance, including prior relationships, stroke recovery, ageing and depression, and the construction of dolls. “I’m tired of being a last resort,” she writes, in the poem “We haven’t talked in years, but suddenly he wants me again,” continuing: “a suicide hot line inside a middle-aged woman’s body, / stuck on repeat.”"
read more of his notes here -
http://robmclennan.blogspot.com/2019/08/ongoing-notes-dusie-kollektiv-9-dana.html
acquire your own copy of my DARK PURPLE INTERSECTIONS here -
https://www.etsy.com/listing/689260672/new-dark-purple-intersections-inside-my?ref=shop_home_feat_11/6/17
Seven Year Anniversary
Today is the seven year anniversary of me having an unexpected carotid artery dissection, which led to an aneurysm, which caused a stroke, which caused significant brain damage.
I had to undergo a risky surgery that involved having a stent inserted into my upper neck so that I didn't bleed to death.
I had to re-learn the alphabet, my family member's names, my friend's names.
I had to re-learn to read via children's books.
For a while, I felt very nervous that I might not be able to write poetry anymore, even though poetry had been my primary passion in life for years. Sometimes my own poetry doesn't make sense to other people, but for a while it didn't even make sense to me!
Fortunately, I think it was my genuine passion for words and writing and individualistic communication and creative expression and poetry that had a powerful impact on my recovery. I'm pretty sure anyone who met me these days would have no idea that I had underwent such serious brain damage.
I still have issues with some easy words, but since I'm a word-based person, I've gotten pretty good at replacing those words with other words. Actually, I think it's pretty interesting that the words I have the most trouble with are the easy basic words, but I'm fine with uneasy unusual big words.
Also, sometimes I can't think of a word, but I can think of its first letter and VISUALIZE the words length. However my brain healed itself from its neurological damage, I'm now more visual than I used to be.
The stroke didn't change my overall personality, but I do feel it made me more mentally prone to separating the genuinely REAL from the FAKE when it comes to friendship, relationships, and love.
***
Little update: The last paragraph above could probably be interpreted (or possibly misinterpreted) in different ways, in part since I got tried while writing it and lost the energy to elaborate, but I can say it wasn't directed at any one person, situation or relationship.
It was directed at various different kinds of relationships in general.
And sometimes it's hard for me to understand what "friendship" or "love" means to other people, because it means a lot of different things to a lot of different people.
And I think all of those things are fine, as long as they're genuine.
Also, sometimes I can't think of a word, but I can think of its first letter and VISUALIZE the words length. However my brain healed itself from its neurological damage, I'm now more visual than I used to be.
The stroke didn't change my overall personality, but I do feel it made me more mentally prone to separating the genuinely REAL from the FAKE when it comes to friendship, relationships, and love.
***
Little update: The last paragraph above could probably be interpreted (or possibly misinterpreted) in different ways, in part since I got tried while writing it and lost the energy to elaborate, but I can say it wasn't directed at any one person, situation or relationship.
It was directed at various different kinds of relationships in general.
And sometimes it's hard for me to understand what "friendship" or "love" means to other people, because it means a lot of different things to a lot of different people.
And I think all of those things are fine, as long as they're genuine.
***
"Post-Stroke my words are not over-
ly obvious. Why on earth should my
non overly obvious poetry be dead?
1. Telebloodied brain cadaver with pernicious red limp.
2. Telebloodied drain dagger with growing open limbs.
3. My carotid swirling, awaited a dangerous blow torch
from the crotch; clicked in, rose up, added platinum mesh
deep inside my odd head. In spite of my almost annihilation.
4. A vicious new voice will slowly seep out of my skull.
5. Will spill more pretty crooked plucked out wordage."
***
the first poem from the first tiny little poetry chapbook I created after my stroke:
https://www.etsy.com/listing/69547229/post-stroke-by-juliet-cook?ref=shop_home_active_16
"Post-Stroke my words are not over-
ly obvious. Why on earth should my
non overly obvious poetry be dead?
1. Telebloodied brain cadaver with pernicious red limp.
2. Telebloodied drain dagger with growing open limbs.
3. My carotid swirling, awaited a dangerous blow torch
from the crotch; clicked in, rose up, added platinum mesh
deep inside my odd head. In spite of my almost annihilation.
4. A vicious new voice will slowly seep out of my skull.
5. Will spill more pretty crooked plucked out wordage."
***
the first poem from the first tiny little poetry chapbook I created after my stroke:
https://www.etsy.com/listing/69547229/post-stroke-by-juliet-cook?ref=shop_home_active_16
8/6/14
“Singular annotation to feel his complication of contraries” ( a line from this morning's dream)
Weird dream this morning including the ex and the past. I don’t remember the details of the dream,
but I do remember its strange impact on my brain after I woke up. I woke up too early, hearing garbage truck
sounds and still in my mind was the visual that was taking place in the dream
at that time, which included mountainous outdoor terrain, the ex, an ex of his, and me
in the background. In the background I
was talking with an ex co-worker of mine whose father was some sort of horoscope
expert or bipolar disorder expert or something like that (in another remembered
visual from the dream, the father looked like a Transcendental Meditation teacher
from my past – which makes sense in a way, because in retrospect, after I suddenly
awoke from the dream, I felt like I had been in the midst of an unexpectedly
intense Transcendental Meditation).
As soon as I awoke, I immediately wrote down the phrase the
woman was saying to me, which had been said to her by her father:
“Singular annotation to feel his
complication of contraries”.
I didn’t know exactly what those words meant, but they were
meant as a definition of the ex – and even though I didn’t know exactly what
they meant, they definitely seemed to make sense – and then as soon as I awoke
and wrote that phrase down, all sorts of stuff started rapidly popping out of
my head. Memories in the form of words
and sounds and images.
***
Sudden ongoing increasing contraries of the ex:
Super sweet/terribly mean/almost
uncaring.
Singing goofball hilarious
songs/yelling at me/yelling at the TV/yelling out the window.
Being an affectionate hugger/telling
me my fingers felt like snakes/punching the cupboard doors.
Suddenly getting up early and
immediately launching into a loud made up song while making bacon/having a
drunk loud angry tirade about how great Hitler was.
***
After writing down those thoughts that spewed out after suddenly
awaking from the dream, I felt suddenly compelled (for the first time in years) to
open a hand written journal of mine, the first hand written journal I compiled
after I had a stroke in January 2010.
Here is what it says on the very first page of that journal:
“March 9, 2010: POST-STROKE (diary)
Juliet Cook. The earliest part of this book is much older.
I tore out some words I no longer liked + saved the other words, which are pieces of other’s poetry + odd little words that I might use in a lighter poem of mine.
However, I’m not writing poetry any more, right now. Because
I recently had a Stroke. My reading and
writing of words is slowly (slowly slowly) improving, but my writing of poetry
is not yet. I’ve been reading poems by myself & others, but it’s tough to
read them slowly or entirely understand them. I can no longer remember them
(can’t read or write or speak or remember things as well as I used to
post-stroke.) The last few years have been wonderful for me as far as
poetry-writing and now…”
***
Maybe I will add more lines from my 2010 diary soon.
It made me feel oddly emotional. I’m not sure if anyone else would be the
least bit interested though, so maybe I should just read them by myself and not
bother typing it or talking about it to anyone else. Not sure yet.
I do know that after awaking from my dream and then suddenly
reading a few pages from my 2010 diary, I had another sudden visual from my
past. Past dogs dying.
I do know that all of the thoughts/images I highlighted in
green were real life events, not dream imagery.
The images of past dogs dying were real too. And my little journal entry
was real.
2/7/13
What if you can't speak or move and nobody is there to help you?
Woke up thinking about death this morning - not in a goth, macabre, artsy way, but in a real life/death sort of way, related to myself and others.
When I had my unexpected stroke a few years ago (2010), although I had been feeling unusually uncomfortable the day before, the bulk of it happened while I was in bed at night. When I woke up in the morning, my brain felt like it was working fine, but I couldn't speak or move. One side of my body was paralyzed and I felt like I was trying to move the other side/to sit up, but I didn't get upright or even move myself halfway across the bed.
I couldn't sit, I couldn't stand, I couldn't even move my hands.
When I got out of bed, it was because a medical person picked me up and carried me outside to the ambulance.
The reason the ambulance arrived was because my husband called for it.
Suggestions have been made that the ambulance was not called fast enough (causing me to suffer more end-results, more brain loss). I don't no what to say about that, because even though I have a lot of detail-oriented recollections of what happened, I do not have timing-oriented recollections.
I do know that he called my parents, left them a voice mail, and when my mom called back and asked if he had called an ambulance, he hadn't yet, so did it then.
When I've heard that he should have called faster, I'm not sure what to think or say. Maybe he wasn't sure what was going on.
Although I couldn't move or speak at the time, I was mentally conscious and could THINK, but I didn't know what was going on. I knew it was something unusual - I knew I was being ambulanced to the hospital, so it was health oriented and serious - but I didn't know I was having a stroke.
It's now three years later and I don't think about that morning every single morning since then, but when I woke up today I thought, what if I hadn't been married or living with someone else at the time that happened?
I'd be dead.
Even if my cell phone had been right next to me, I wouldn't have been able to move enough to pick it up.
Even if I could have somehow managed to press a calling button and lean my mouth against it, I couldn't speak.
Maybe/hopefully, after some time, I could have managed to dial SOMEONE and spurt out a bit of garbled nonsense sound, causing them to realize that something was wrong - but if that would have even been able to happen, it would have taken a lot longer than my (ex)husband took - and then I guess the 'time lost is brain lost' issue would have been all mine.
I know there's a lot of medical talk about how if you are experiencing this or that symptom, get yourself to the hospital or all 911 ASAP, but what if those symptoms happen when you're in bed/asleep and thus unable to seek out help right away - and then when you wake up it's too late, even though you're not dead yet?
Is that why so many people die of strokes?
Because they have an unexpected stroke and live by themselves - because they wake up unable to move or speak, with nobody there to help them?
Even though I couldn't move or speak and was losing parts of my brain, it's not like I died right away. If I had been by myself, I wouldn't have died in mere minutes or even in an hour. So...
Lying by themselves for hours, unable to help themselves, even though they want to and would if they could. WANTING/THINKING/TRYING to help themselves but unable to make it happen.
Not dying in mere minutes, but unable to move or speak and so can't contact anyone to help - and so you spend your last hours lying by yourself thinking, 'Oh my gosh, what can I do!?! Help me! Help me! What can I do? What can I do? Help me' inside your own head for hours until your brain finally goes dead?
8/29/11
Seizure Horror Fest
At the moment, I don’t really feel like writing about this or doing much of anything, but if I don’t write/do things, then what is the point of existing, so I guess I will give this a try.
This past week was an unexpectedly unfortunate, bad week for me. It was supposed to be a uniquely creative week, involving my first time being a part of the extra-special Kerouac Fest at the Grand Midway Hotel in Windber PA. Part of the festivities were going to involve me & Margaret Bashaar introducing Margaret’s new poetry chapbook, ‘LETTERS FROM ROOM 27 OF THE GRAND MIDWAY HOTEL’ , which was inspired by the haunted hotel and published by my Blood Pudding Press. Unfortunately, I did not get to go and participate in that.
The day before I was to leave, I was working on packing my attire and took a quick break online. A few minutes after 3:00, I wrote a comment to Margaret on facebook. The next thing I knew, I woke up, was lying on my bed, and was gazing upon my new manikin with confusion, not remembering where it had come from. Even my older headless manikin seemed confusing. Even all the clothes lying on my bedroom floor and the passage of time seemed confusing.
As soon as I got up, it got worse. I felt nauseated, dizzy, faint, and as though I was about to pass out. I immediately become afraid that I was dying. About a year and a half ago, I had suffered from a sudden, unexpected carotid artery dissection which led to a couple aneurysms which led to a stroke. Was I having another stroke? Was I about to die? I felt like I was going to faint and collapse. I called my mom. As I glanced at my cell phone, I saw that it wasn’t quite 4:00 yet, so it’s not as though a lot of time had elapsed since I was online, but what had happened since then?
My sister and parents arrived to my house shortly. I was still feeling disoriented and dizzy – and we soon found out that I must have fallen down hard, because the back of my head was terribly bruised and painful. I later found out that the bottom of each elbow was also bruised. Within about an hour, most of my memory came back to me, except for the memory of when/how/why/where I had fallen down. I figured I had suddenly passed out but why? That is not something that often happens to me. I had been feeling fine that day, eating healthy, drinking plenty of water. I wasn’t drinking any alcohol or doing any drugs. What the heck had happened?
We decided I should go to the emergency room just to make sure I did not have a concussion. I wasn’t lucking forward to doing that; I was worried it would take several hours, when I still had packing and other last minute preparation for my trip, for which I was scheduled to depart via Megabus the next morning. Unfortunately, I did not end up departing. Even though my CAT scan did not indicate a concussion, they suggested the fact I couldn’t remember what had happened made them feel as if I could have had a seizure, so they wanted to send me to the hospital for more testing.
Next thing I know I’m inside an ambulance, talking with the man behind me. I wasn’t in a terrible mood because I was thinking that my hospital testing would last a few hours, then I’d be home and even though I would be rushed, I’d still have time to prepare for leaving the next morning. Well instead, I ended up being in the hospital from Tuesday night until Friday night, receiving multiple tests and lying around on a hospital bed with an IV inserted and a heart monitor plugged in. Instead of being part of an artsy extravaganza with poet and photo artist friends, I was a hospitalized, disabled, out of control old lady.
And then even though none of my testing indicated that I’d had a seizure, they still decided that I should take seizure pills, twice daily, just to be on the safe side. Well I have always been an anti-pill person; the last thing I want is some pill changing my personality, my passion, my sex drive, my interest in life, and/or making me fat. Blah blah BLAH.
I've not had a seizure before in my life; I don't have epilepsy. BUT sometimes people who suffer from a stroke then start having seizures, due to how the stroke affected their brain. BUT my stroke happened more than a year and a half ago, so why would seizures suddenly start overtaking me after all that time? After a rather crappy (sad, depressing, difficult) year or so, things were finally becoming so much happier and better - and now I'm going to start having seizures? I'm hoping it was just a weird fluke.
But even if it was a fluke, the pill I've been given is a seizure related pill – and research indicates that some people have bad side effects from it. I'm really quite nervous about it. Again, I don't want a pill to change my personality, my energy, my poeticism, or anything like that.
I don’t want it to zone me out or make me unemotional. I don’t want it to make me uninterested in poetry, uninterested in art, uninterested in knee highs, uninterested in almost everything.
I don't want a pill to change me. I don't want to be lacking in passion.
I’ve started taking the darn pill but have also started taking notes and will share some of those soon.
I could go into more detail and perhaps I shall later, but being in the hospital for four days and then feeling out of it and depressed my first few days home have put me behind, so for now I need to get to work on publishing and promoting the chapbook that I was supposed to have available live at a haunted hotel while hanging out with its scrumptious poet lady, but alas. Instead I’m all worried about seizure medicine. Blech.
This past week was an unexpectedly unfortunate, bad week for me. It was supposed to be a uniquely creative week, involving my first time being a part of the extra-special Kerouac Fest at the Grand Midway Hotel in Windber PA. Part of the festivities were going to involve me & Margaret Bashaar introducing Margaret’s new poetry chapbook, ‘LETTERS FROM ROOM 27 OF THE GRAND MIDWAY HOTEL’ , which was inspired by the haunted hotel and published by my Blood Pudding Press. Unfortunately, I did not get to go and participate in that.
The day before I was to leave, I was working on packing my attire and took a quick break online. A few minutes after 3:00, I wrote a comment to Margaret on facebook. The next thing I knew, I woke up, was lying on my bed, and was gazing upon my new manikin with confusion, not remembering where it had come from. Even my older headless manikin seemed confusing. Even all the clothes lying on my bedroom floor and the passage of time seemed confusing.
As soon as I got up, it got worse. I felt nauseated, dizzy, faint, and as though I was about to pass out. I immediately become afraid that I was dying. About a year and a half ago, I had suffered from a sudden, unexpected carotid artery dissection which led to a couple aneurysms which led to a stroke. Was I having another stroke? Was I about to die? I felt like I was going to faint and collapse. I called my mom. As I glanced at my cell phone, I saw that it wasn’t quite 4:00 yet, so it’s not as though a lot of time had elapsed since I was online, but what had happened since then?
My sister and parents arrived to my house shortly. I was still feeling disoriented and dizzy – and we soon found out that I must have fallen down hard, because the back of my head was terribly bruised and painful. I later found out that the bottom of each elbow was also bruised. Within about an hour, most of my memory came back to me, except for the memory of when/how/why/where I had fallen down. I figured I had suddenly passed out but why? That is not something that often happens to me. I had been feeling fine that day, eating healthy, drinking plenty of water. I wasn’t drinking any alcohol or doing any drugs. What the heck had happened?
We decided I should go to the emergency room just to make sure I did not have a concussion. I wasn’t lucking forward to doing that; I was worried it would take several hours, when I still had packing and other last minute preparation for my trip, for which I was scheduled to depart via Megabus the next morning. Unfortunately, I did not end up departing. Even though my CAT scan did not indicate a concussion, they suggested the fact I couldn’t remember what had happened made them feel as if I could have had a seizure, so they wanted to send me to the hospital for more testing.
Next thing I know I’m inside an ambulance, talking with the man behind me. I wasn’t in a terrible mood because I was thinking that my hospital testing would last a few hours, then I’d be home and even though I would be rushed, I’d still have time to prepare for leaving the next morning. Well instead, I ended up being in the hospital from Tuesday night until Friday night, receiving multiple tests and lying around on a hospital bed with an IV inserted and a heart monitor plugged in. Instead of being part of an artsy extravaganza with poet and photo artist friends, I was a hospitalized, disabled, out of control old lady.
And then even though none of my testing indicated that I’d had a seizure, they still decided that I should take seizure pills, twice daily, just to be on the safe side. Well I have always been an anti-pill person; the last thing I want is some pill changing my personality, my passion, my sex drive, my interest in life, and/or making me fat. Blah blah BLAH.
I've not had a seizure before in my life; I don't have epilepsy. BUT sometimes people who suffer from a stroke then start having seizures, due to how the stroke affected their brain. BUT my stroke happened more than a year and a half ago, so why would seizures suddenly start overtaking me after all that time? After a rather crappy (sad, depressing, difficult) year or so, things were finally becoming so much happier and better - and now I'm going to start having seizures? I'm hoping it was just a weird fluke.
But even if it was a fluke, the pill I've been given is a seizure related pill – and research indicates that some people have bad side effects from it. I'm really quite nervous about it. Again, I don't want a pill to change my personality, my energy, my poeticism, or anything like that.
I don’t want it to zone me out or make me unemotional. I don’t want it to make me uninterested in poetry, uninterested in art, uninterested in knee highs, uninterested in almost everything.
I don't want a pill to change me. I don't want to be lacking in passion.
I’ve started taking the darn pill but have also started taking notes and will share some of those soon.
I could go into more detail and perhaps I shall later, but being in the hospital for four days and then feeling out of it and depressed my first few days home have put me behind, so for now I need to get to work on publishing and promoting the chapbook that I was supposed to have available live at a haunted hotel while hanging out with its scrumptious poet lady, but alas. Instead I’m all worried about seizure medicine. Blech.
5/1/11
Post-Stroke Aphasia Articles
Linked to below is my Intro piece for my three new Post-Stroke Aphasia articles.
These articles took me a long time to write; I was often overtaken by mixed feelings.
But I finally did it and hopefully a few people will read and relate.
The Intro will offer you a few snippets of what to expect from the others.
Those other pieces will also be added here.
http://www.associatedcontent.com/article/7973477/intro_to_my_three_new_poststroke_aphasia.html?cat=5
*
NEW - Post-Stroke Aphasia Piece One (Challenging Words & Images)
http://www.associatedcontent.com/article/7973591/poststroke_aphasia_piece_one.html?cat=5
*
NEW - Post-Stroke Aphasia Piece Two (Love Replaced With Doubt & Debt)
http://www.associatedcontent.com/article/7976323/poststroke_aphasia_piece_two.html?cat=70
*
Piece #3 coming soon...
*
P.S.
I understand that my stroke was difficult for my ex-husband to deal with too. He had lost his first wife to cancer; she had suddenly died young. He was very uncomfortable with hospitals and health issues and I can certainly understand that. I just wish he would have told me that he was truly sorry but he really couldn’t deal with this kind of situation again in his life. Yes, I would have been disappointed by that, but it would have been better than him acting like the whole situation was my own fault and repeatedly lashing out at me due to a lifestyle change that had happened beyond my control. It’s not like I had my stroke on purpose. I wish it wouldn’t have happened. I wish it wouldn’t have made his life harder. I wish I wouldn’t have lost parts of my brain - and then my home and my husband and my credit and more...
If something bad, unfortunate, or mistaken happens, he wants to move on – not dwell on it. I can understand that to an extent, but not when it is related to a brain loss injury. He seriously wanted me to forget about it after mere weeks, but how am I supposed to forget about or ignore something that still affects my brain?
Would most people just ignore a brain injury – or expect their spouse to?
I don’t think so.
Maybe I’m wrong.
These articles took me a long time to write; I was often overtaken by mixed feelings.
But I finally did it and hopefully a few people will read and relate.
The Intro will offer you a few snippets of what to expect from the others.
Those other pieces will also be added here.
http://www.associatedcontent.com/article/7973477/intro_to_my_three_new_poststroke_aphasia.html?cat=5
*
NEW - Post-Stroke Aphasia Piece One (Challenging Words & Images)
http://www.associatedcontent.com/article/7973591/poststroke_aphasia_piece_one.html?cat=5
*
NEW - Post-Stroke Aphasia Piece Two (Love Replaced With Doubt & Debt)
http://www.associatedcontent.com/article/7976323/poststroke_aphasia_piece_two.html?cat=70
*
Piece #3 coming soon...
*
P.S.
I understand that my stroke was difficult for my ex-husband to deal with too. He had lost his first wife to cancer; she had suddenly died young. He was very uncomfortable with hospitals and health issues and I can certainly understand that. I just wish he would have told me that he was truly sorry but he really couldn’t deal with this kind of situation again in his life. Yes, I would have been disappointed by that, but it would have been better than him acting like the whole situation was my own fault and repeatedly lashing out at me due to a lifestyle change that had happened beyond my control. It’s not like I had my stroke on purpose. I wish it wouldn’t have happened. I wish it wouldn’t have made his life harder. I wish I wouldn’t have lost parts of my brain - and then my home and my husband and my credit and more...
If something bad, unfortunate, or mistaken happens, he wants to move on – not dwell on it. I can understand that to an extent, but not when it is related to a brain loss injury. He seriously wanted me to forget about it after mere weeks, but how am I supposed to forget about or ignore something that still affects my brain?
Would most people just ignore a brain injury – or expect their spouse to?
I don’t think so.
Maybe I’m wrong.
2/20/11
New POST-STROKE poetry chapbook now available
POST - STROKE is now available!
POST - STROKE is my new 2011 poetry chapbook, created by Blood Pudding Press for DUSIE Kollektiv 5.
POST - STROKE is a small hand-designed snippet of ten new poems and more.
About a year ago, I suffered from an unexpected carotid artery dissection, bleeding out by 99%, aneurysms, and a stroke - and this strange sensation inspired the poems within this collection.
Partake of more and/or purchase your very own copy in the Blood Pudding Press etsy shop here:http://www.etsy.com/shop/BloodPuddingPress
***
If interested, you may also read some articles I've written about my stroke, linked to below:
~Post - Stroke Survival and Sad Little Blues: http://www.associatedcontent.com/article/2807396/poststroke_survival_and_sad_little.html?cat=70
~Full Length Dissection: http://www.associatedcontent.com/article/5602556/full_length_dissection.html?cat=70
~A Round Thing That Starts With The Wrong Letter: http://www.associatedcontent.com/article/6187208/a_round_thing_that_starts_with_the.html?cat=5
POST - STROKE is my new 2011 poetry chapbook, created by Blood Pudding Press for DUSIE Kollektiv 5.
POST - STROKE is a small hand-designed snippet of ten new poems and more.
About a year ago, I suffered from an unexpected carotid artery dissection, bleeding out by 99%, aneurysms, and a stroke - and this strange sensation inspired the poems within this collection.
Partake of more and/or purchase your very own copy in the Blood Pudding Press etsy shop here:http://www.etsy.com/shop/BloodPuddingPress
***
If interested, you may also read some articles I've written about my stroke, linked to below:
~Post - Stroke Survival and Sad Little Blues: http://www.associatedcontent.com/article/2807396/poststroke_survival_and_sad_little.html?cat=70
~Full Length Dissection: http://www.associatedcontent.com/article/5602556/full_length_dissection.html?cat=70
~A Round Thing That Starts With The Wrong Letter: http://www.associatedcontent.com/article/6187208/a_round_thing_that_starts_with_the.html?cat=5
1/1/11
A Round Thing that Starts With the Wrong Letter
(A year that started with the wrong kind of bang has ended; what comes next?)
I few days ago, I had a little after-dinner issue that made me feel like crying. These feelings are nothing new throughout a year that began with me suffering from an unexpected Stroke, but I have been continually recovering and improving, to the point that I think most people who briefly interact with me might not even receive an inkling that anything has affected my brain powers at all. A big part of me really likes that, but it also has its challenging aspects.
Although my reading and writing skills continue to get better and better thank goodness, they are still significantly slower than they used to me. Although every month, I seem to remember details better, I still do not think I could work a regular job, because after I initially came across as pretty intelligent and productive, how could I explain my inability to memorize new things with quickness or efficiency?
And how the heck would I explain my ongoing trouble associated with handling easy little words? Food stuff is one example of those easy little words and my ongoing issue with food stuff words is what made me feel like crying the other night. Even my poetry used to be brimming with strange and specific food-oriented words, to the extent that a few people thought I had made up my last name, COOK, to fit into my own poetry-fest.
A few nights ago after dinner, my mom handed me a yummy piece of homemade gingerbread (I had to concentrate while typing this to get the word gingerbread) and she put something on it; some white stuff that I cannot remember the word of. I asked her what that white stuff was called and she told me, but I have already forgotten that word again. When she told me the word, I started to tell her what it reminded me of, which was another white thing atop another dessert thing and...
See what I mean? I couldn't think of the word of a dessert product that I have partaken of many times in my life. And I couldn't think of the word of the white stuff on top of that dessert product. Oftentimes, I can think of the first letter of a word even if I can’t think of the whole word. So I said something like "that round thing that starts with a g" and then I began to feel like some sort of an idiot, because here I was seated at the kitchen table with a group of people and the best descriptive phrase I could muster was “that round thing that starts with a g".
As it turned out, I didn't even get the first letter right this time. As I tried to describe the dessert product a little better, my mom finally asked if I was talking about Cinnamon Rolls and YES that is what I was talking about. And the main reason I had even brought up Cinnamon Rolls was due to an attempt to talk about the white product that sometimes appears on top of them, but it took me so long to make it to the word Cinnamon Roll, that after that, I felt overly stressed out and dumb and pretty much just gave up.
Here I was among a group of people and could not even manage to describe certain things as well as their little kids would have been able to describe it. I felt like they most likely would rather play with the kids, rather than spend half an hour trying to concentrate on a disabled adult attempting to figure out easy little words in order to say what I was trying to say, when what I was trying to say was simply a very small description of a white dessert product atop my mom's gingerbread that tasted like a different white dessert product atop some Cinnamon Rolls. I could hardly think of any of the words for a small description that should have lasted about one minute long.
Unfortunately, that is nothing new when I am trying to talk about food (or names or other brief descriptions), so sometimes I just don’t even try to talk about those things, especially in the midst of group settings as opposed to one on one. Sometimes I find myself worrying about not being able to think of some easy little word in a public setting (which has happened before) and then how the heck should I explain that? I don’t really feel like telling semi-random people who I barely know that I suffered from a Stroke almost a year ago.
It's so frustrating and upsetting to me sometimes, being someone who used to be able to describe things interestingly, uniquely, and EASILY and now I often can't. In addition to the little words, there's the fact that I can't write significant book reviews anymore; I can no longer specifically describe my own viewpoints on stuff like poetry, art, feminism, and much more (and since I would have to concentrate long and hard in order to think of more specific words, I just typed 'and much more').
Overall, I have been feeling less depressed, less negative, and more willing to interestingly shift my own verbiage around. But every once in a while, an exchange that ought to consist of a simple, easy, quick little conversation goes awfully wrong and really upsets me. Sometimes I worry that I am NEVER going to be able to communicate as well as I used to. Sometimes that makes me feel like crying.
***
(This is a short version of a small article I am currently working on. I hope to complete and publish a slightly longer version on my Associated Content site soon. If you are interested, stay tuned.)
I few days ago, I had a little after-dinner issue that made me feel like crying. These feelings are nothing new throughout a year that began with me suffering from an unexpected Stroke, but I have been continually recovering and improving, to the point that I think most people who briefly interact with me might not even receive an inkling that anything has affected my brain powers at all. A big part of me really likes that, but it also has its challenging aspects.
Although my reading and writing skills continue to get better and better thank goodness, they are still significantly slower than they used to me. Although every month, I seem to remember details better, I still do not think I could work a regular job, because after I initially came across as pretty intelligent and productive, how could I explain my inability to memorize new things with quickness or efficiency?
And how the heck would I explain my ongoing trouble associated with handling easy little words? Food stuff is one example of those easy little words and my ongoing issue with food stuff words is what made me feel like crying the other night. Even my poetry used to be brimming with strange and specific food-oriented words, to the extent that a few people thought I had made up my last name, COOK, to fit into my own poetry-fest.
A few nights ago after dinner, my mom handed me a yummy piece of homemade gingerbread (I had to concentrate while typing this to get the word gingerbread) and she put something on it; some white stuff that I cannot remember the word of. I asked her what that white stuff was called and she told me, but I have already forgotten that word again. When she told me the word, I started to tell her what it reminded me of, which was another white thing atop another dessert thing and...
See what I mean? I couldn't think of the word of a dessert product that I have partaken of many times in my life. And I couldn't think of the word of the white stuff on top of that dessert product. Oftentimes, I can think of the first letter of a word even if I can’t think of the whole word. So I said something like "that round thing that starts with a g" and then I began to feel like some sort of an idiot, because here I was seated at the kitchen table with a group of people and the best descriptive phrase I could muster was “that round thing that starts with a g".
As it turned out, I didn't even get the first letter right this time. As I tried to describe the dessert product a little better, my mom finally asked if I was talking about Cinnamon Rolls and YES that is what I was talking about. And the main reason I had even brought up Cinnamon Rolls was due to an attempt to talk about the white product that sometimes appears on top of them, but it took me so long to make it to the word Cinnamon Roll, that after that, I felt overly stressed out and dumb and pretty much just gave up.
Here I was among a group of people and could not even manage to describe certain things as well as their little kids would have been able to describe it. I felt like they most likely would rather play with the kids, rather than spend half an hour trying to concentrate on a disabled adult attempting to figure out easy little words in order to say what I was trying to say, when what I was trying to say was simply a very small description of a white dessert product atop my mom's gingerbread that tasted like a different white dessert product atop some Cinnamon Rolls. I could hardly think of any of the words for a small description that should have lasted about one minute long.
Unfortunately, that is nothing new when I am trying to talk about food (or names or other brief descriptions), so sometimes I just don’t even try to talk about those things, especially in the midst of group settings as opposed to one on one. Sometimes I find myself worrying about not being able to think of some easy little word in a public setting (which has happened before) and then how the heck should I explain that? I don’t really feel like telling semi-random people who I barely know that I suffered from a Stroke almost a year ago.
It's so frustrating and upsetting to me sometimes, being someone who used to be able to describe things interestingly, uniquely, and EASILY and now I often can't. In addition to the little words, there's the fact that I can't write significant book reviews anymore; I can no longer specifically describe my own viewpoints on stuff like poetry, art, feminism, and much more (and since I would have to concentrate long and hard in order to think of more specific words, I just typed 'and much more').
Overall, I have been feeling less depressed, less negative, and more willing to interestingly shift my own verbiage around. But every once in a while, an exchange that ought to consist of a simple, easy, quick little conversation goes awfully wrong and really upsets me. Sometimes I worry that I am NEVER going to be able to communicate as well as I used to. Sometimes that makes me feel like crying.
***
(This is a short version of a small article I am currently working on. I hope to complete and publish a slightly longer version on my Associated Content site soon. If you are interested, stay tuned.)
12/30/10
New Post-Stroke/Thirteen Myna Birds coming soon...
My Stroke happened almost a year ago now and here is the little article I wrote about it a few months thereafter. I am currently working on a new little article, to be posted soon. So read the old version and prepare for the new.
http://www.associatedcontent.com/article/2807396/poststroke_survival_and_sad_little.html?cat=70
Also partake of the old Thirteen Myna Birds, because an all new version of that delectable offering shall be posted tomorrow, as a special dark New Year's Eve feast.
http://13myna.blogspot.com/
http://www.associatedcontent.com/article/2807396/poststroke_survival_and_sad_little.html?cat=70
Also partake of the old Thirteen Myna Birds, because an all new version of that delectable offering shall be posted tomorrow, as a special dark New Year's Eve feast.
http://13myna.blogspot.com/
*
P.S. Socks made yummy Xmas delights for me, especially socks from Sock Dreams.
Here's a little peak (click on the link for more of my scrumptious socks photos).
http://www.facebook.com/album.php?aid=265244&id=842512457&l=d6d2fec9cb
7/16/10
Full-Length Dissection/Toxic Cheesecake
For days upon days and hours upon hours recently, I worked hard at assembling my second full-length poetry collection, so that I could submit it to a source I adore, which was accepting submissions up through July 15. I sent my submission their way the night of July 14, so pretty much just in time. Yay!
I imagine very many writers will submit there, so who knows how their readings will turn out, but I am very happy I am trying. Also, whether or not my collection is accepted by them, it now exists! I can add poems, remove poems, update other details and more, bit by darkly delicious bit now without having to spend quite as many hours upon hours.
On a not so happy note, having spent hours upon hours reading many of my newly included poems, many of them written in 2008 and 2009, I could not help thinking about how after many years of working on my poetry writing, just a few years back, I finally started truly liking, enjoying, and being impressed with and proud of much of my work. However, having suffered from an unexpected stroke early in 2010, losing part of my brain power, and still in the midst of aphasia and nowhere near fully recovered, I now cannot write (or otherwise uniquely express myself or read or remember/memorize or review etc...) anywhere near as tremendously as I used to and sometimes I really feel as if that is awfully unfortunate. Other times, I try to focus on the fact that I'm lucky to be alive and I need to continue to do my best to recover (even though I'm not sure how to do my best to recover). Frankly, the last six months of my life have been strangely unsettling in a variety of ways.
Back to poetry though, it is still important and wonderful to me. I'm glad that I still love it (and I'm glad that my personality has not substantially changed) and I'd like to think that working on trying to read it, write it, and think about poeticism has helped to improve my recovery and will continue to do so, pretty please with dark sugar on top and a reem of decadent poison darts.
My very first full-length poetry book, 'HORRIFIC CONFECTION', was published in 2008 by BlazeVOX and my print copies very recently sold out, but it can still be partaken online for free, right here: http://www.blazevox.org/ebk-jCook%20REAL.pdf.
It was easy for me to come up with that book's title 'HORRIFIC CONFECTION', because I had been working on some of those poems for many years and then had been submitting that collection to various sources for many more years. This time though, with my second full-length book, coming up with the best title did not come easily to me and I'm still not sure!
I tentatively entitled it 'ERRANT CONFETTI', but I'm not quite sure about that. Here are a few other titles I thought about/am thinking about which might be even more strangely interesting. Feel free to let me know what you think.
-CONFETTI DISSECTION
-BLOODY CONFETTI
-MACHINATED HALO
-Deadly Doll Head Dissection
-Anal Cheesecake Festival
-Toxic Taste Test My Vile Love
Of course, I suppose you might be able to think about that better if you knew what kind of oddly hideous poems where toxinated within, but you don't.
Alas.
I imagine very many writers will submit there, so who knows how their readings will turn out, but I am very happy I am trying. Also, whether or not my collection is accepted by them, it now exists! I can add poems, remove poems, update other details and more, bit by darkly delicious bit now without having to spend quite as many hours upon hours.
On a not so happy note, having spent hours upon hours reading many of my newly included poems, many of them written in 2008 and 2009, I could not help thinking about how after many years of working on my poetry writing, just a few years back, I finally started truly liking, enjoying, and being impressed with and proud of much of my work. However, having suffered from an unexpected stroke early in 2010, losing part of my brain power, and still in the midst of aphasia and nowhere near fully recovered, I now cannot write (or otherwise uniquely express myself or read or remember/memorize or review etc...) anywhere near as tremendously as I used to and sometimes I really feel as if that is awfully unfortunate. Other times, I try to focus on the fact that I'm lucky to be alive and I need to continue to do my best to recover (even though I'm not sure how to do my best to recover). Frankly, the last six months of my life have been strangely unsettling in a variety of ways.
Back to poetry though, it is still important and wonderful to me. I'm glad that I still love it (and I'm glad that my personality has not substantially changed) and I'd like to think that working on trying to read it, write it, and think about poeticism has helped to improve my recovery and will continue to do so, pretty please with dark sugar on top and a reem of decadent poison darts.
My very first full-length poetry book, 'HORRIFIC CONFECTION', was published in 2008 by BlazeVOX and my print copies very recently sold out, but it can still be partaken online for free, right here: http://www.blazevox.org/ebk-jCook%20REAL.pdf.
It was easy for me to come up with that book's title 'HORRIFIC CONFECTION', because I had been working on some of those poems for many years and then had been submitting that collection to various sources for many more years. This time though, with my second full-length book, coming up with the best title did not come easily to me and I'm still not sure!
I tentatively entitled it 'ERRANT CONFETTI', but I'm not quite sure about that. Here are a few other titles I thought about/am thinking about which might be even more strangely interesting. Feel free to let me know what you think.
-CONFETTI DISSECTION
-BLOODY CONFETTI
-MACHINATED HALO
-Deadly Doll Head Dissection
-Anal Cheesecake Festival
-Toxic Taste Test My Vile Love
Of course, I suppose you might be able to think about that better if you knew what kind of oddly hideous poems where toxinated within, but you don't.
Alas.
2/1/10
poetry (good and not so good) stuff
I wrote some poems in December and now cannot read or understand them well, due to my stroke. I also can't read poetry (or other) books well. I can read/write a little, but much more slowly than usual. I have read a lot of neato cards and notes from folks and appreciate those.
After the beginning of January, I haven't written poems and I haven't read poems by others, including those submitted to my online literary magazine, 13 Myna Birds (for which I've received a lot of submissions lately and hope to start reading those soon). I also had to send emails to several poets who I had agreed to write book reviews for, but now can't.
I do have some writing written/submitted/chosen for publication before my stroke, coming soon:
~February 2--a long piece of writing will be published as part of Delirious Hem's "This is What a Feminist [Poet] Looks Like "
~February 16--a new poem at Everyday Genius
~Soon--three of my poems, along with three of Letizia's translations at Listenlight
~Later--three of my poems in Caketrain
***
Also, my first Dusie poetry chapbook, MONDO CRAMPO, can now be read online, here:
http://dusie.org/
(And my next Dusie thingee will be published soon...)
After the beginning of January, I haven't written poems and I haven't read poems by others, including those submitted to my online literary magazine, 13 Myna Birds (for which I've received a lot of submissions lately and hope to start reading those soon). I also had to send emails to several poets who I had agreed to write book reviews for, but now can't.
I do have some writing written/submitted/chosen for publication before my stroke, coming soon:
~February 2--a long piece of writing will be published as part of Delirious Hem's "This is What a Feminist [Poet] Looks Like "
~February 16--a new poem at Everyday Genius
~Soon--three of my poems, along with three of Letizia's translations at Listenlight
~Later--three of my poems in Caketrain
***
Also, my first Dusie poetry chapbook, MONDO CRAMPO, can now be read online, here:
http://dusie.org/
(And my next Dusie thingee will be published soon...)
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