Mhm .... those were her very first words post-op, "Did you blog yet?". Finally, tears of relief that this "part" is over has come. She is in a lot of pain and will be probably for a few days, however the DOC, the Neurosurgeon said, "It went beautifully.". She will be in the PACU overnight, being monitored closely. Those six hours of surgery felt like an eternity for us. Daughter number 1 said that she looks good, but *I* was overwhelmed by her transformation from Superwoman to the Bionic Woman. She is a testament to us all that bravery is only a mere thought away.
Thank you all for your caring words, prayers and concerns. She truly loves reading your posts and I think the blog is now daughter number 4.
Just thought you'd like to say goodbye, toodles, and good riddance, to the monster in my head.
I know that I do.
I'm a raw nerve, I cry every 10 to 15 minutes, for no reason whatever. I about fell apart in the MRI machine this morning.
I didn't realize that I would be slid into this thing the full length of my body, and that it would be inches above my face. I usually can do those things. Not so much today.
I almost lost it, but not quite. As soon as I felt the fear, I squeezed my eyes shut, and committed myself to not opening them. Then the noise began. You can't appreciate how noisy an MRI of your head can be unless the monster is lodging between your eyes.
He wasn't happy.
Then the tears came. No noise, no movement.....heaven forbid. Nope, just a flood of tears.
Far from home, facing the unknown, aware of my oh, so human frailties.
Tomorrow, I am having brain surgery. A little voice in my head, the one I'm not supposed to listen to, says, WTF? Seriously?
But I am grateful. Grateful that someone has an answer. Grateful that someone can fix it. Grateful for the love of so many family and friends because that love holds me up, and helps me to focus on getting through the present moment, with hope for a headache free future.
And maybe the monster knows, because he is waging war on my head every day without a break. He knows that he is soon to be evicted. And the pain he inflicts only makes me more sure that this is the right thing to do.
The only thing to do.
I am going to try to get my daughter to do an update here. I think she will, just enough to let you all know what is going on.
I look forward to blogging when this is over, about EVERYTHING but the monster.
Monster, be damned.
Thank you, all, for your prayers, good thoughts, energy, and concern.
You are the best.
Counting down the days. Who knew that going under the knife could be so appealing?
It's all about what I have said so many times before: perspective.
A couple of people have said, " Are you sure you wanna do this?"
That's a question asked from THEIR perspective.
From their point of view, having brain surgery sounds ridiculous, formidable, horrific.
From my perspective, however, which you have heard tons about, brain surgery sounds like the ring of the doorbell, when you have waited for a guest to arrive, someone you long to see.
It sounds like a promise, hope, relief.
Today I did normal stuff, acting "as if" everything were just that, normal.
I walked Roy, went to the studio, did morning chores.
On the way home to do more preparation for leaving, I stopped at the Farmer's Market, and bought some lovely bread, and some huge, fresh tomatoes.
And I made myself a sandwich.
You will note, however, that this is not a pristine tomato sandwich.
But that's because I sprouted my own fresh sprouts, and they were too tempting not to include them.
I sat quietly alone and ate my sprout and tomato and mayonaisse sandwich, and I thought about how sweet the most normal daily things can be. I took my time. I relished it.
I savored every bite.
I thought about all those sandwiches that I have wolfed down throughout my life, in a hurry to do something else.
Sandwiches every bit as deserving of my attention as this one.
When this is done, and I have a new and improved head, I am not coming back to my 'old' life.
I am coming back to my new and improved life.
A more thoughtful life, a less hectic and rushed life.
I am going to give myself time to access that part of me that just wants to BE creative, without all the hoopla.
I am making a bucket list, folks. You think it's for people older than me????
No, it isn't about age at all.
It isn't necessarily about illness.
It's about reaching a point, where you know you haven't been paying attention. And standing there, you are certain that there is more, and you want it. You want every minute to be as meaningful, and as precious, as it can be.
That's where I am standing.
Today, I went to the nearest salon, and got a hair cut in preparation for this surgical EVENT. Because it IS an event, right?
I very calmly got a #3 buzz cut on the back of my head.
Hey, why not??
They're going to shave a strip down the back of my head anyway, so I figured I would make it easier for them to do that, and for me to let my hair all grow in together after it's over.
It was kind of freeing, actually. It makes me want to buzz cut my whole head.
Can you imagine that? Totally disassociating yourself from all that caring about what you looked like, and what other people thought?
Maybe there are all kinds of positives here, that I am just beginning to see.
Remember a couple of weeks ago? I was ready to sell everything, and move to Maine??? My daughters said that it was my headache talking crazy. I didn't think so. Now I'm not so sure.
Oh, yes, I love Maine more than most. And I have always dreamed of Maine, living there as an old lady, in an old house, in a little seaside village.
And who knows, maybe I will.
But it was more than that, I know that now.
It was 10 and a half months of incredible, unrelenting pain in my head and my face. Pain that first nagged at me, then chased me down, and finally just held me hostage.
I thought about just getting in my car, and driving away. But the knowledge that I could not escape the misery kept me from doing that.
I have pushed myself all the way through this. Every single thing I have done, day in and day out, from just getting in the shower, to grocery shopping, to changing litter boxes, everything has been done under duress. Sometimes it has not as much duress as other times, but lately, it has ramped up to a level that occasionally frightens me.
It's ok, I am not complaining about the way I handled this. It was the only thing that "I" could do. It was my way.
But, God, I'm glad it's coming to an end. Because I can't do it anymore.
I am so looking forward to my new life, the one without a headache.
The one where I allow myself to savor the journey.
One year ago, this coming week, I was on vacay in Maine with my girls, and grands.
This week, I will be getting my head straight.....pun intended.
But I will be dreaming of Maine.
Yesterday was the day I have waited for for 10 months.
I know that this does not look like the yellow brick road, but it is.
My daughter and I drove 4 hours to get there, and by some stroke of luck, we were early.
So we decided to have brunch, suspecting that my appointment would not allow any time for lunch.
The diner we ate in was more than awesome. I wish it were closer to where I live.
She had this incredible bruschetta omelette, and I had a Greek omelette with spinach and feta cheese.
So far, the day was a success.
My daughter observed, that as well as the day had been going so far, maybe the doctor would just "crack" my neck, and I would be fixed.
And here we are.
I was about to have what I thought I knew thrown right out the window.
I thought that Chiari was something I was born with.
It always has a cause. Mine was smashing my head on a rock last August.
I thought that Chiari surgery was about as bad as it could get.
I was wrong.
It seems that when I fell, I did more damage than I realized at the time. For the first time in this crazy search for a 'reason' for this headache, I had an answer.
For the first time, in 10 months of never ending pain, I heard the words I had been waiting for.
"I know why you have a headache."
Yes, in case you are wondering. I cried. Spontaneous tears, and a weight lifted.
Easily visible, when pointed out on my MRI, was the reason for my Chiari, which is in all reality a herniation of the brain.
Basilar invagination occurs when the top of the C2 vertebrae migrates upward. It can cause the opening in the skull where the spinal cord passes through to the brain (the foramen magnum) to narrow. It also may press on the lower brainstem.
The top of my spine is not straight, like it should be, but it is bent backward, and pressing into my brain stem, which is in turn pressing on the rest of my brain, and causing it to 'herniate' down into my spinal canal........thus the Chiari.
Basilar invagination can be present at birth. If the condition develops after birth, it is usually the result of injury or diseases. If due to injury, about half the time it is caused by vehicle or bicycle accidents; 25% of the time by falls and 10% of the time by recreational activities such as diving accidents.
So now a whirlwind of getting ready.
I am scheduled to have a decompression surgery on the back of my head, and two rods and four screws to fuse and keep my cervical spine from impinging on my brain stem, the way it is now.
I am emotionally drained, partially terrified, incredibly relieved.
New word: terri-lieved. That's me.
I know this will be hard. I know that it's a big decision.
But here it is......the choice.............painful surgery with the promise of a normal life at the end of the recovery, OR the headache from HELL for the rest of my life. Cause unless they fix it, it ain't going anywhere.
It's not a hard choice. It's a scary one, but not hard.
I am also incredibly grateful, for the path that led me to the right doctor, the right place, and perhaps, an end to this nightmare.
I will probably say this again, but thanks to all of you for your continuing love and support through all this......there's a chance, soon, that you may not hear me talking about a headache.
Now, THAT'S NEWS.
It will be happening next week. It can't be soon enough. I will keep you posted.
But just remember this........NOW in the future, if you say that I may have a screw loose, YOU may be right.
I wish I could tell you that I took this picture myself. Cause that would mean that I was vacationing in balmy old England, visiting the family, instead of what I am really getting ready for.
My cousin took this. It is on Magdalene Street, Cambridge, England.
I would love to sit in one of these flat boats and float down the river.
Here is a picture, looks like it was taken from the other direction, that I found on Wikipedia.
I can imagine being here. I can.
I can't even figure out what's going on in my head lately. I do try not to listen to the 'voice', the one that worries.
All of you, my blogging friends, you DO carry me. Your support and encouragement is nothing short of incredible. I have heard from a couple of people WITH Chiari, one who has had surgery, one who is having it a day before me.
I love that you all take a few minutes out of your day, to cheer me on. Thank you, from the bottom of my heart.
I've been flitting around. It seems to be what I do best lately. Sporadically productive.
I decided to get all my knitting stuff organized, and of course, doing that revealed 'unfinished projects'.
So last night I finished up these wool socks.
And tonight I am finishing up these mittens.
Over the weekend I treated myself to these cups, four in all.....two of each style.
Handpainted with bees flying up the side. I just fell in love with them.
I guess you could say that I am amusing myself from this moment to the next.
That helps me to stay in the now, and let go of what doesn't belong to me.
Tonight, walking Roy, I saw this rusty old gate, chained shut. It caught my eye, and got me thinking about how we get 'locked' into old patterns.
But there's always a new horizon, and another day to get it right.
WARNING: Random photos that have nothing whatever to do with this post.
In between bouts of playing on Picmonkey to harass adolescent Yankee fans, and blogging, walking Roy by the river, baking muffins, weaving baby blankets, reading, playing Scrabble, knitting, taking my mother to the grocery store, acting all NORMAL, I fall apart.
Yes, it's true.
I cry a lot.
Gosh, I shouldn't be telling you this.
But it's fact..
I feel alternately relieved after crying, and embarrassed. The tears come any old time they want, I really have little control of them.
I guess it's just the way I process it all.
I didn't blog over the weekend, I just didn't have anything to offer.
Unless you count unadulterated terror.
Pissed off-ness. (is that a word? it should be)
Periods of calm.
All of these wildly fluctuating inside my head on a daily basis.
I have been listening to Eckhart Tolle. And if there is any time you need to listen to Eckhart Tolle, it is when BRAIN SURGERY is scheduled on YOUR head.
Sitting here last night, listening to it on my lap top, while the Red Sox and Yankees played silently to the left of me, I listened to ET saying that I need to ask myself if I have a problem THIS MINUTE.
Well, no, actually, I don't.
And he says, that the fact that I am having surgery........(he didn't exactly use those words) is not a problem to me THIS MINUTE. It is FUTURE TENSE. So therefore, it is a challenge.
I get it.
And a little voice.....the one he says I should under no circumstances be listening to, screams:
One thing that bothers me.......bare with me.....this probably makes little sense......but I have always been 'the strong one' to my kids. They say that. My three beautiful daughters.
They look to me to always be on top of my game, tough, capable, in charge.
They say that when they can't count on anything else, they can count on me being no nonsense, to the point, get it done, the one they look to, the MOM.
And I know that is not something that lasts forever.
But who knew that even contemplating how that could change, would hurt so much?
There go the tears again.
I think Eckhart Tolle has it right. No doubt. I am listening to a whole series of this conversations.
I want to know. I want to learn. I want to be better.
But it ain't so easy to quiet a voice that has been talking at you for your whole life.
And it ain't easy to think about brain surgery, and not think that you have a problem.
L has had the studio to herself a lot these last few months.....I have been an extreme slacker at times.
She isn't always working her fingers to the bone though.
Sometimes, she doing "good deeds".
Like helping her nephew weave a table runner for his Mom for her birthday.
Shhhhh. It's a surprise.
So, what, she's not a blog follower????
Unfortunately, DENNIS, I can in no way put your photo on my blog while you are wearing a NY
YANKEES tee shirt. It just can't happen.
But not to worry, I fixed it for you.
L gave him the abbreviated version, with a pre-existing warp.
But I definitely think he has some potential.
He is really paying attention.
And he did a great job, Mom is going to be so proud.
NOW......if we can't just persuade him to switch baseball teams.
Apparently, Chiari/HH is affected by the barometric pressure.......we got some rain, and we are supposed to get more, and I can tell, because it takes the edge off the pain.
It's not gone, it's just not so hard.
Today, I totally amused myself for the most part, weaving a baby blanket on the Schacht 36" loom that got warped yesterday.
The loom is in the hall upstairs. I wove with two windows open, and a sweet breeze coming in.
I took my time, and loved every minute.
It makes me think about the weaving I want to do, and the joy I find it it every time. When my headache is gone, I am committed to weaving what my heart wants me to.
A few days ago, someone called me about a loom. People do that a lot.
This lady had this loom, and hadn't used it for years, and asked me to look at it, and maybe help her find a home for it.
So yesterday, since she was only about 5 miles away, I dragged myself off the couch, put Roy in the car, and went to look at it.
So ok, ok, maybe I am facing brain surgery, but hey...........I'm here now. I'm alive, and this LOOM NEEDED A HOME.
C'mon peeps.......you know I couldn't resist it.
It's a little Macomber C.P. 4 harness, 6 treadle, made before 1978, when Macomber was in Massachusetts.
I think the lady bought it new, the original papers are with it, and other than a little dust, the loom is in great shape.
Haven't decided what to do with it yet. It has a 16" weaving width, and folds up with a handle on the side to CARRY it with.
It is too freaking cute.
I may keep it for students, sell it, keep it.......haven't decided. It will tell me, eventually.
But I am not entirely out of my mind. One loom came in, and one loom left.
The Union Custom that I just bought a few weeks ago, went home with my friend Patty. Here is her husband, transporting it.
Bonus: it's warped with 40 yards for placemats or table runners.
Patty wanted it badly, and besides, I have 3 Union looms already.
I know I have said it before, but ever since I opened Crazy as a Loom Weaving Studio, I have met the most wonderful people. Some of them have become friends that I can't imagine not having in my life.
Two of them, Patty and Michelle, threaded this loom for me today.
I tried to thread it, but the position I was in to thread the heddles, made my neck throb, and then that made my head worse.
They very kindly offered to do it for me.
Yes, I am fortunate. Because going through a tough time is easier with friends. And family. People who care, and people who show it on a daily basis.
I couldn't do it without them.
And I couldn't have done this last year without them.
I decided today to get myself to the studio, and try to act 'as if' everything was normal.
It was much better than sitting home, over thinking and worrying myself into a dither.
As the day went on, I realized how much I had to be grateful for.
And I'm going to try being more invested in making a gratitude list, than I am in adding up my demons.
It seems to me, this morning, over my cuppa tea, that having been found out, HH is going to go out with a roar. It is unrelenting, and brutal. I can barely get out of my own way.
On one hand, it seems unfair, that I can't do some of the things I want, while I wait for the knife. On the other hand, perhaps it is perfect. If it continues like this, by the time the surgery date arrives, I will be sharpening the knife for them.
Anticipation can be wonderful, or it can be awful.
I could sit around and feel bad, and mull over in my head the darkest aspects of what's in front of me.....the pain, the dependence on other people, the fear of something really bad happening, the possibility of going through it, and STILL having the headache, being away from home in a strange place.
Or I can dream, about a day without this pain. No headache. I can imagine what I will do, and how marvelous it will feel to do it without a headache. I can think about restructuring my life, redesigning it to be what I want it to be.
Not so much work. Not so much stress. More days off, more leisure. Is that a word...........leisure?
Wow, I just realized.
And I have not in any way explored that word enough.
I said yesterday that this was not a mistake. And I believe that.
What else, but an unrelenting headache, and brain surgery, would stop my workaholic self from working and running right to the end?
Trust me, not much else would have/could have intervened.
I always look for the lesson.....in everything. And I have had a lot of them in my life.
I have not been perfect. I have made some huge errors in judgement. Mostly they were about me.......I was the one who got hurt. But I have always tried to be kind, and good in the deepest sense of the word.
I have always tried to be honest. Sometimes, brutally so. Just ask my friends and family.
Still I have taken wrong turns, backtracked, taken them again, fallen down, got up and brushed myself off. It took me a long time to get some things straight.
And through it all, I worked. Always. I was undeterred, and pig headed. And I was good at it.
When I was 7 months pregnant for my second child, I was wrapping rolls of paper as big as a VW bug, strapping them up with a huge, intimidating machine. Even then, I couldn't stop.
I have never been one to admit to weakness, or idleness. It's a Mort Cooper gene. I know that. But it has always been such a part of who I am, that I have never seriously questioned it.
My friends would tell me. You work too much. And I agreed, and then went back to work.
And when I left the paper mill, and closed my furniture stripping business, and became an RN, working became even more 'personal satisfaction', and I dug my heels in to work two jobs for 20+ years.
Then I retired.
What a joke.
Mostly I retired because I began to hate what I was doing. And I hated the NYS Department of Corrections. And someone I loved died, and I was afraid. So I retired from the state, and promptly went out and got another job........then two jobs. Crazy as a Loom was mostly still in its part time capacity, and I didn't ditch nursing until the studio became a full time gig.
And now CAAL is all consuming, keeping L AND I busy all the time.
So much for retirement.
So, yup, there is a lesson here. HH came with a lesson, a message, and a HUGE turn in the road.
It's kind of like the labyrinth.
"Your life is a sacred journey. And it is about change, growth, discovery, movement, transformation, continuously expanding your vision of what is possible, stretching your soul, learning to see clearly and deeply, listening to your intuition, taking courageous challenges at every step along the way. You are on the path... exactly where you are meant to be right now... And from here, you can only go forward, shaping your life story into a magnificent tale of triumph, of healing of courage, of beauty, of wisdom, of power, of dignity, and of love." Caroline Adams
We are all on the path... exactly where we need to be. The labyrinth is a model of that path.
A labyrinth is an ancient symbol that relates to wholeness. It combines the imagery of the circle and the spiral into a meandering but purposeful path. The Labyrinth represents a journey to our own center and back again out into the world. Labyrinths have long been used as meditation and prayer tools.
A labyrinth is an archetype with which we can have a direct experience. We can walk it. It is a metaphor for life's journey. It is a symbol that creates a sacred space and place and takes us out of our ego to "That Which Is Within."
Labyrinths and mazes have often been confused. When most people hear of a labyrinth they think of a maze. A labyrinth is not a maze. A maze is like a puzzle to be solved. It has twists, turns, and blind alleys. It is a left brain task that requires logical, sequential, analytical activity to find the correct path into the maze and out.
A labyrinth has only one path. It is unicursal. The way in is the way out. There are no blind alleys. The path leads you on a circuitous path to the center and out again.
A labyrinth is a right brain task. It involves intuition, creativity, and imagery. With a maze many choices must be made and an active mind is needed to solve the problem of finding the center. With a labyrinth there is only one choice to be made. The choice is to enter or not. A more passive, receptive mindset is needed. The choice is whether or not to walk a spiritual path.
At its most basic level the labyrinth is a metaphor for the journey to the center of your deepest self and back out into the world with a broadened understanding of who you are.
So I guess the only decision I have is the one to move forward, to enter the path that is mine.
A long time ago, when I was still doing emotional/relationship drama, and thought one time that I was going to die because of my lousy choices in men, I bought this card. I burned the edges, and then I glued it to a piece of slate. I sealed and glossed it over with a product called "modge podge".....(they still sell this btw).....poked two holes in the slate, strung some leather through it (yes, I was into that whole hippie thing) and hung it up. When I say a long time ago, I am not kidding......I think I made it in the early 70's. It's practically an antique.
Today, it came back to me, when I truly needed it the most...........and I got up off the sofa, where I have truly been lounging, hating my headache,most of the day, and went out in the hall, to look at it. Truly, I had forgotten that I still had it. I read it several times, standing there. The words grab me just as hard today, as they did back when I made this. Thank you, Cupcake. I am reserving a seat at the book signing for you, front row. A dear friend just gave me this book, and so far I love it.
Let me read you the blurb on the back of the book: At fifty, Alix Kates Shulman left a city life dense with political activism, family, and literary community, and went to live alone on an island off the coast of Maine. Without plumbing, power or a telephone, and foraging for wild greens and shellfish, she faced challenges that helped redefine her notions of independence and courage, confidence, and creativity. Among the hidden treasures of the natural world, she discovered sensual delights she had never experienced and the strength to continue her journey of self-awareness as she traveled back to the mainland and beyond. I won't be going to Maine any time soon. I thought differently. But you know what they say about making plans. How God laughs?? He must be cracking up right about now. I finally have an answer, after 10 months of this headache nightmare. I debated about whether to blog about it yet, but then I thought.......hey............my followers have listened to me blather on for all this time, they have stuck with me, they have encouraged me and prayed for me. I am not entirely sure how I would have gotten through this without my family, my friends, and my blogger friends. The least I can do on my end, is to share what I have finally found out. The answer is not what I what I wanted to hear, but it is what I deeply suspected. And to quote a dear friend and fellow blogger: It has a name. It has a treatment. It has a cure. I told you about it months ago, when it was just a whisper. It is called Chiari Malformation I. I was born with it, as many people are, and I never knew it, as many people don't. Apparently, the whack to the head last August, made it worse, and pushed me over the line from asymptomatic to symptomatic. The pressure from part of my brain slipping down into my spinal canal, is what causes my extreme and constant headache, which is why nothing makes it better. My surgery will be happening fairly soon. Why wait, right? I will keep you posted. Or maybe one of my daughters can blog for me. Don't think I am all that strong. I have cried many times since I found out. I waver between relief (now I know why), and disbelief. I am not angry. It's nobody's fault. It happened. There are worse things, and I know that. This is my path. I will do my best to get through it. I have a lot of weaving, and a lot of blogging, to do. My mantra shall be: Acceptance is the answer to all my problems today. This isn't a mistake.
Black feathers relate more the to soul than other colors of feathers. When you find black feathers, it means that the guardian of your soul is near. The feathers are there to remind you that you don't fight your battles of darkness in life alone. When you find a black feather, give thanks to your gurardian for being there to protect you always.
Yesterday, during a whiffle ball game at my middle daughter's birthday party, I found this feather.........
At first I didn't hear it, but today it spoke volumes.
Just so you don't miss out....I want to share with you, my fave summer sandwich, right up there with a fresh tomato sandwich.
You can use any bread, but I used a crusty white.
Hellman's mayo on one side, creamy peanut butter on the other, slices of fresh cucumber in the middle.
A little salt and pepper, OH MY.
Trust me, it's delicious.
First of all, let me just say that if you leave a comment that merits a reply, and you pop up anonymous, just leave me your email address, so I have that option.
And just to let you know, even if I don't agree with a comment, even if I don't particularly like it, as long as it is not vile or hurtful, I will leave it. No erasing here, otherwise what is the point?
Now for all of you who responded to my last post, what can I say, except that I love you all. I sat down last night, and read them all again. It's like having 3 dozen + friends, who offer their support and their encouragement, and who sit around brainstorming for you. And your comments are thoughtful, inspiring, and they give me hope.
A friend said:
Keep a found feather.. hold it close to you (in a hat or pouch), Connect That's my way of prayer. It all comes down to the same thing in the end, I believe. So this morning, while I was cleaning my car.......can you believe that???? I found this on the floor in the back seat.
This afternoon was the first time since Monday that my headache has been less than an EIGHT.
I was getting pretty ragged. It is such a relief to have a FIVE. Who knew just three numbers could bring it?
Even so, I am still hopeful that I will soon have the answer. That I will someday be free of this.
I will keep this feather, because it came to me for a reason.
Just like this headache.
I also believe that I can change the craziness in my life. I am working on ways to do that. I know that I need to go slowly at first, you are so right. Decisions made in pain are questionable.
But for now, I have SUSPENDED weaving weekends, until the headache is under control, or gone.
I am NOT taking any custom orders. The custom order page, along with the weaving weekend page, is no longer on my web site.
I CANCELLED my participation in the Christmas in the Country weekend, that I have done for the last seven years.
I am changing my hours, starting next week.
I am looking for a getaway in Maine....one for this fall, and one for a month next summer.
I am taking all this very, very seriously.
This is my life.
Sydney was talking to me today.
I think she approves.
If you turn your volume up, you can hear her.