ahem. still tired. but nothing a few lazy days won’t fix–that’s to come in a few days.
Monthly Archives: February 2007
No blog posts these days–I have been VERY tired and unfocused due to a social obligation of mine that has my house crowded with guests each evening. Everyday I gear my mind up to the big event and there is room for very little else. Tonight is the last night of my social responsibilities–and so I am allowing myself to wind down and relax as much as I can.
I only suppose writing is part of that relaxation–for my initial post ended right here. But then I realized there was so much more I wanted to say and write, and to hold it back became unbearable, like holding my breath. As a writer, sometimes the only way I can really say what I need to say, aka The Truth, is through writing. So here goes.
Last night, I turned to my husband and said, “I think I’m back to Week 4 [of recovery],” feeling my exhaustion in the fuzzy edges of my brain. I could feel my cognitive abilities decline–I’d look at the writing on the back of my hand (yes, where I write so many reminders in a frenzy) and none of it made sense. “Dog?” Why would I write “Dog?” What was it about the dog that I had to do? And I’m forgetting things said to me in conversation. I’m back to “Week 4,” walking in a deeper fog.
Still, this social obligation has been quite fun and stimulating, and I’m interested in how it will lead my recovery. Last week’s visit from my mom sped my recovery and now I wonder if this weekend has entirely erased the progress. And the week ahead will be a fast hitting week, too: a short plane trip out of town and a relentless social calendar that won’t let up for days. Of course, I am not willing to part with any of it. Don’t convince me otherwise. (You may support and encourage me to tackle it all, however. :P)
Compound this physical demand with the fretting I’ve been doing about friendships these days (post to come, I think). I’m adjusting to the concept of (previously?) close friends who have just utterly abandoned me, who have drawn a line in the sand and said, “I will not go over this line to be with you where you are.” At this point, to be honest, I don’t care about their reasons even though I have spent quite a lot of time trying to convince myself, “Those are their limits, Jade.”
Why should I be 100% understanding? I’ve tried that path, and nothing changes. It really really hurts. It makes me angry to be abandoned. Do I channel this anger and hurt towards their behavior…or do I maybe do a post on “how to be a friend to someone who’s sick?” to help others? Or maybe forget it all (yah right).
As for my awful speech therapy: I’ve cancelled my appointments with The Awful Speech Therapist and am waiting back for a call on the other speech therapist’s availability. Apparently…there are only TWO…in this semi-urban town! It has now been over a month and a half since my stroke and I STILL have no regular speech therapist.
I am ANGRY about that. Do I really have to go about my recovery all alone? Clearly, the answer is YES. I am fumbling through this dark room and knocking things about, when a guide has been promised to me. And yet the guide has not shown up. I am ANGRY about that. I am angry that I already feel so alone, only to be compounded by the fact that help that should arrive, never does.
By the time I do get a speech therapist, she really WILL say, “Oh you LOOK FINE. You don’t NEED ME.” And I will seethe.
So how to sum up how I’ve been feeling? I was thinking of an analogy or a description the other day when my husband and I went through a tunnel with the top down on the car. The wind noise was incredible, the vision decreased. I could see ahead to a little white light at the end of the tunnel–and that became my focal point, the only clear thing in my mind amidst the noise and blurring vehicles. I tried to talk, but could not be heard. I settled into the white noise, unable to overcome it.
When we emerged from the tunnel, in sunlight and finally rid of the noise, fresh air pounding our faces, I turned to my husband and said, “THAT is how it feels like sometimes.”
A friend of mine, also suffering from a brain injury with fantastically similar symptoms to those of my stroke, shared some of her tendencies with me. “I buy the same books over and over!” she exclaimed, throwing her arms up in frustration.
I bought two copies of About Alice by Calvin Trillin last week. I’d had no idea I did that–I didn’t remember buying the previous copy weeks ago. I simply brought home the more current copy and proceeded to read it. After a few days of diligent reading, I closed the book, very satisfied by its short but meaningful experience. I’d even bookmarked pages with meaningful quotes. And I was pleased to add it to my booklist. Number TWO! It was the first book I’d FINISHED since my stroke. Yes, it’s a short book, but it COUNTS.
A couple days went by–and I went looking for the book again, with the intention of looking up the quotes and writing them down. I found a copy and mysteriously, it had NO bookmarks at all on it. Furthermore, it was an autographed copy. What? Had I entered a new dimension? Then it dawned on me. “Sheeeit! I bought TWO copies! Damnit!” My short term memory deficit was rearing its head again.
I was both tickled and stunned by my discovery.
It took me awhile to find the other copy, but there it was, on the coffee table in the den, just as I had left it (at which point I remembered, “Oh yah. That’s where I put it last.”)
Here are the quotes:
This was a dozen years after Alice had been operated on for lung cancer,and among the things she wrote to our friend’s daughter was that having lung cancer and being raped were comparable only in that both were what she called “realizations of our worst nightmares.” She said that there was some relief at surviving what you might have thought was not survivable. “No one would ever choose to have cancer or be raped,” she wrote. “But you don’t get to choose, and it is possible at least to understand what Ernest Becker meant when he said something like ‘To live fully is to live with an awareness of the rumble of terror that underlies everything,’ or to begin to understand the line in ‘King Lear’–’Ripeness is all.’ You might have chosen to become ripe less dramaticaly or dangerously but you still can savor ripeness.”
And on p. 72:
Alice loved Bruno’s letter. For her, of course, the measure of how you held up in the face of a life-threatening illness was not how much you changed but how much you stayed the same, in control of your own identity.
I wish I could have met Alice. She was a survivor whose experience with cancer gave her a depth of understanding and compassion that Trillin truly touches on.
These days, I’m looking to role models as well as so many other guiding posts. I don’t want to be the kind of sick person who only talks about HERSELF and can’t help others (yes, this despite the blog where I uh, only talk about myself really). So I have a heightened sense of how much I talk about myself to people–I try to limit talk about my stroke (though it’s inevitable that we touch upon the subject).
Now I am looking forward to future behavior–what kind of person do I want to be? What will I do with these lessons?
I may have another stroke again. I am lucky–I had a TIA (a milder version of stroke) a few years back, and who knew that there would be a bigger, longer lasting recurrence, in the form of a stroke? Really, I shrugged off the possibility years ago, “Nah, I won’t have another one. This one was a fluke!” In a few weeks, I will be going in for surgery to close the hole in my heart that may have led to the stroke.
Life is unpredictable.
I think I will always schedule an uplifting appointment on the same days as speech therapy appointment days, which heave an unpredictable mood onto me. Speech therapy has sent me into the doldrums and it has also been a marker of great progress. It’s become such a marker of mood that I’ve used it as a basis of comparison for my other medical appointments, all of which gleam in comparison. Regardless, I’m realizing it’s definitely a moody experience to confront my weaknesses point blank for an hour nonstop, especially when I’ve spent the rest of my living days hiding them from the universe. There is nothing so gritty as facing my deficits head on.
The worst thing is that as time goes on, I’m getting better at hiding my cognitive weaknesses and becoming more resistant to unveiling them. It HURTS. It SMARTS. I don’t want to show someone that I still do not think the way I want to think, and that my memory, for instance, still sucks.
I have gotten a lot better, but there is still some way to go–and maybe this is it. In that case, I need some tools to help me compensate.
Today, I got a new therapist, because my prior therapist has moved on (why? I do not know–but last week, my 2nd appointment, was her last day). I liked my previous speech therapist–she had such a balance of cheer and reality. Plus, she’s been with me since the beginning, and knows from where I’ve progressed. This new therapist? I hate her.
I know–really, should I hate someone so point blank? But I do. She talked a mile a minute–it took all my patience to comprehend her, and it left me short tempered. Was she new at this? How could people undergoing speech therapy understand someone who spoke so quickly? She also liked to tell me (as she told me every 3 sentences), “I’m not sure how to do this, but…”
That wasn’t building my confidence in her.
She said I looked fine. Grrr. THAT is my pet peeve, to be told, “You don’t LOOK like you’ve had a stroke! You should be able to do this.” She really said that. I was blindsided by her comment, and my eyes welled up with tears. But could I cry in front of her? No way. I gritted my teeth.
Elizabeth, over at Fluent, has compiled a little (but valuable) list of literary magazine resources on her blog. This list inclues ZYZZYVA‘s post on a list of nearly 2,000 litmags. I’d say it lists every litmag in existence, except for the fact that I don’t see Small Spiral Notebook there for some reason.
I was a little quiet here last week because my mom came to visit while my husband was out of town–a functional visit of sorts: she was here to keep me company and “babysit” but of course she came to see me, her first visit since my stroke over a month ago. It’s not that she didn’t want to visit sooner, it’s that I couldn’t manage a crowded household and I told her to hold off on seeing me until I was better.
I remember telling her via phone from my hospital bed that she needed to stay home. I wondered how I would handle a crowded household and felt overstimulated just by the thought of managing several voices pointed at my very fuzzy head. “Please,” I remember telling her, “Stay home. I can’t handle multiple voices, and I will ask you to come up when I am better.”
Miraculously, my mom eventually acquiesced and waited patiently (and since I’m not a parent myself I can’t fathom the amount of patience required on her part to not come rushing to my side). She is a nurse, and somehow, she managed to click that part of herself on and see me as a patient who needed quiet time to heal. When I did call weeks later to ask her to come visit me, she said “YES!” before I even finished my invitation.
“But Mom? Don’t you have to make sure your calendar is clear?” I asked.
“I’ll be there!” she shouted on the phone, leaving no doubt that she would wayside any conflicts. And leaving no doubt in my mind that she had been waiting for me to invite her to come see me.
I think her visit pushed my recuperation a bit farther–did we do anything mindblowing? No. We went grocery shopping, we ate, we shopped, we conversed, we went for walks. We did the normal mother/daughter things–nothing earthshattering but somehow it pushed my healing forward.
There were things my mom did for me that were amazing. She told me stories–how did she know that hearing stories would awaken my storytelling brain? They were not fairytales, but stories about friends and our family–narratives with a beginning, middle, and end, with fully developed characters. They were so inspiring, and the storyteller in my mind started to awaken. I rushed to write them down right after she told them to me–so distrustful am I of my forgetful mind these days, and so precious the stories. “Mom! They are so inspiring!” I would say, “Can you just imagine what went on in his head? Why he would do such a thing!”
“Yes,” said my mom. “That’s why I told you that story, so your mind would wake up.”
Now, as I type this, I’m nearly in tears at her thoughtfulness, and at the way she cares so much about me as a writer to have come with stories to tell–to lure the storyteller out of me again. Okay–no longer am I nearly in tears. I am in tears, the cheers rolling down my cheeks, thinking about this huge gift, days later.
btw–Happy Lunar New Year, everyone! It is now the year of the (Golden) Pig, and I’m looking forward to a new fortune. My goal for today is to get me a big bowl of Korean dduk gook (rice cake soup) to kick off the year.
Update: My father, like W’s at Loud Solitude was born in the year of the pig. I have had my conflicts with him, but also have a HUGE connection to him (and I credit him with much of my writing inspiration) so I feel that is the kind of year I will have: one full of passion and inspiration and successful connections.
I wonder, at this point, about my stroke, which occurred, technically, in 2006 on New Year’s Eve…but the aftereffects of which I have carried on into 2007 and now the year of the Pig. What fortune does this new development carry? Did it prophylactically fulfill “bad luck” and do I now run free, with the feeling that lightning will not stroke twice?
The above questions are significant in that they do set a mood for the year ahead.
What a way to end/begin a year…and I look forward to the journey ahead. What WILL the new year bring?
I am enough of an oldie internet geek to think “After Dark–Isn’t that a screen saver with flying toasters?” when I heard the words “After Dark.” (We used to point to the Berkeley Systems building on Shattuck and Rose and exclaim, “Flying toasters!”)
But in fact, After Dark is the title of Haruki Murakami’s upcoming novel. And I am ECSTATIC to hear about its upcoming release–I had entirely expected to wait at least another year until his next creation, given his 2006 release of Blind Willow, Sleeping Woman collection of short stories (which I am still working on, story by story, in the wake of my stroke).
Of course, I already have my advance order in at Amazon, the Murakami fanatic that I am. It’s relatively short at 208 pages, compared to his last novel, Kafka on the Shore which spanned over 400 pages. The following is the book description, available at Random House/Knopf’s website:
A short, sleek novel of encounters set in Tokyo during the witching hours between midnight and dawn, and every bit as gripping as Haruki Murakami’s masterworks The Wind-Up Bird Chronicle and Kafka on the Shore.
At its center are two sisters—Eri, a fashion model slumbering her way into oblivion, and Mari, a young student soon led from solitary reading at an anonymous Denny’s toward people whose lives are radically alien to her own: a jazz trombonist who claims they’ve met before, a burly female “love hotel” manager and her maid staff, and a Chinese prostitute savagely brutalized by a businessman. These “night people” are haunted by secrets and needs that draw them together more powerfully than the differing circumstances that might keep them apart, and it soon becomes clear that Eri’s slumber—mysteriously tied to the businessman plagued by the mark of his crime—will either restore or annihilate her.
After Dark moves from mesmerizing drama to metaphysical speculation, interweaving time and space as well as memory and perspective into a seamless exploration of human agency—the interplay between self-expression and empathy, between the power of observation and the scope of compassion and love. Murakami’s trademark humor, psychological insight, and grasp of spirit and morality are here distilled with an extraordinary, harmonious mastery.
I can’t wait. By Spring (his book releases in May), I ought to be able to read novels again, and this book will very much be at the top my reading list.
Ahem! After weeks of waiting after my initial speech therapy appointment for insurance approval and scheduling, etc., etc., I have finally embarked on speech therapy (yes, a weird misnomer–my speech therapist is supposed to help me with my memory) in earnest. Friday was my second appointment, a long awaited second episode in an ongoing series.
My speech therapist started off the appointment by asking me to name 20 things I had done in the last 48 hours–I could use my “compensatory strategies” (e.g., reading my memory notebook where I write everything I do, aka my diary) as needed. I started naming the things I’d done, things I’d eaten, places I’d been.
In a way, it was a nice review of my mother’s visit (yes more on that to come in a later post) thus far as I listed my ongoings and activities–and bordered on story telling or confessional work (was I teetering on the brink of psychotherapy there?). After what I thought was a substantial list, I asked my therapist how many I’d stated: eleven. She said I was doing well, and she did not hide her gleeful surprise. I got to twenty without opening my book, all on my own.
Who knows–it may have been the act of keeping a diary and jotting these things down that have helped me to retain things, and it may be that I’ve just been busy during my mother’s visit, but it is clear that I am getting measurably better.
Now of course I’m scared that I’ve progressed so far that the insurance company will not deem this necessary, even though my neurologist, who prescribed this treatment, said I’d be treading new ground with my speech therapy, a treatment traditionally for the severely disabled. But a part of me is so happy to have measured improvement in the last month.
We discussed new goals for the next 4 weeks. I listed some hefty ones: to be able to write fiction, and accomplish writing a whole short story, to up my reading rate to 50 pages/day (she said that was a rather large goal)…to learn other compensatory skills in addition to my memory book (because I can’t have my notebook with me ALL the time, especially in the ever expanding amounts of conversations I am having)…to be able to sit in a meeting of more than 3 people and hold myself together and participate (I’m thinking ahead to the Fall, when I’ll be in school again, in classes full of competitive student peers)…the most important items being able to read at velocity and to write fiction again.
“These are big goals!” she exclaimed.
Yes, I know–and if I don’t achieve them, oh well…but I so wanted to try. I really want to try. I wouldn’t be Me if I couldn’t at least strive to get those skills back for myself.
But of course I know that I will never be the same again. I am grieving for that change, but at the same time, beginning to accept that reality in earnest. I’m also beginning to realize that a “100% recovery,” as predicted and stated by doctors, doesn’t mean, “Exactly the same as you were before.”
Oooh–a great book meme from Charlotte’s Web.
Look at the list of books below. Bold the ones you’ve read, italicise the ones you want to read,
cross out the ones you won’t touch with a 10 foot pole, put a cross (+) in front of the ones on your book shelf, and asterisk (*) the ones you’ve never heard of. Like Charlotte, I’ve left unformatted the books to which I feel perfectly indifferent. 1. The Da Vinci Code (Dan Brown) - I am proud to report that I did not actually BUY the book thereby profiting his evilness, Dan Brown. A friend of mine said I MUST read this book, so I did. I must admit it is an oddly stupefying page turner, but full of horrid craft errors (hello? the dude ends a chapter by writing, “And then he opened the door…” complete with ellipses!). It did NOT help when an MFA peer of mine said my writing reminded her of Dan Brown’s. Bleah.
2. +Pride and Prejudice (Jane Austen) – Jane Austen’s books are very similar. I wonder if all the characters knew each other.
3. To Kill A Mockingbird (Harper Lee) – Kickass book. It makes me sad that she wrote one book (according to a writer I know, 70% of writers only write one book), but if she had to write one, then she did well.
4. Gone With The Wind (Margaret Mitchell) – it was okay.
5. + The Lord of the Rings: Return of the King (Tolkien) – great story, awful writing. I hear Tolkien refused to edit. Um.
6. + The Lord of the Rings: Fellowship of the Ring (Tolkien) - see #5
7. + The Lord of the Rings: Two Towers (Tolkien) – see #5, 6
8. Anne of Green Gables (L.M. Montgomery) - I barely remember this book.
9. *Outlander (Diana Gabaldon) – never heard of it
10. *A Fine Balance (Rohinton Mistry) – never heard of it
A few days ago, I wrote about my embarrassment and puzzlement over my current emotional state(s). What was up with my moodiness? Why did I spend the first month of my stroke recovery in blissful ignorance, weirdly optimistic and upbeat? I supposed it was my own inability to process what was going on, but at the same time, with the exception of my reflexive crying (random crying without sadness) I was not very sad at all. That was replaced with a torrent of anger and rage and now…depression.
The emotional pain has by now greatly outpaced my physical limitations. Worse, my emotional pain is now something I can no longer ignore. And something I should not ignore given my history of depression. (But of course, my history of depression has caused my own set of weird behaviors around depression).
One of my readers, Leroy Dissing commented:
What I read sounds more like a grieving process you are going through. As I look back on your entries, there was the denial, the anger, numbness or sadness and slowly you are working toward patience or acceptance.
The comment was striking–I had not realized I was going through a grieving process. Until then, I’d felt crazy and alone, wondering why I was going through all those…FEELINGS, and feeling very very scared for myself. Was I entering an endless pit of despair? I had clawed at the rim of this black well, refusing the sensation of hopelessness and anger and resentment and self pity and sadness. All the while, of course, still falling in, my railing arms ineffective against the inevitable slump of depression.
As soon as I’d realized that I was going through something NORMAL, I let into my feelings. Knowing I was grieving, somehow, made the whole thing more acceptable in my mind (even though I did wonder, “What the HECK am I grieving about?!”).
Ah, I am not DEPRESSED–I am…GRIEVING!
And so these days I’ve been sitting, willingly, on that train of grieving. Of course, being typical me, doing research on the stages of grieving (what are they? Where am I in the process? What is my “progress?” Am I near the end? What are the steps? What should I check off? Yes, I know this is silly but this is how I am). I learned that one does not necessarily go through every step, nor does one have to follow them in precise order:
- Denial and Shock…The initial stage. “It can’t be happening.”
- Anger…”How dare you do this to me?!” (either referring to God, the deceased, or oneself) Or “Why me?”
- Bargaining…”Just let me live to see my son graduate.”
- Guilt….You may find yourself feeling guilty for things you did or didn’t do prior to the loss. Forgive yourself. Accept your humanness.
- Depression…You may at first experience a sense of great loss. Mood fluctuations and feelings of isolation and withdrawal may follow. Please note that encouragement and reassurance to the bereaved will not be helpful in this stage.
- Loneliness…As you go through changes in your social life because of the loss, you may feel lonely and afraid. The more you are able to reach out to others and make new friends, the more this feeling lessens.
- Acceptance…Acceptance does not mean happiness. Instead you accept and deal with the reality of the situation.
I don’t know if I’ve written it before, but I really do set my emotions aside in times of crisis, and instead tend to tasks at hand. It does make sense that now that I’m physically better, my psyche has stepped forward to take its turn. Now I wonder what it is I’m grieving about, all the things that are causing me pain (including the whole idea and practice of confronting my pain).
What do I feel I have lost? That’s the underlying question in my head these days.
My buddy Susan brought up the news about a Camel Bookmobile in Africa, bringing books (via camel, natch) to readers in Africa.
You can send books to:
Garissa Provincial Library
For Camel Library
Librarian in Charge, Rashid M. Farah
P.O. Box 245
And now the Camel Book Drive has its own website. Check it out.