Research News

Check out this PubMed study on CCMs. Interesting.

AHAHAHAHAHA!!!!

Dear Bob and BBB,

I know you find your parents mortifying. And it's okay. But always remember...it could be worse.

Love,

Your Mom and Dad



*Big thank you's and xoxox to Ethel for sharing this.

The DNF

Sometimes you don't get the chance. But then sometimes you do, and you get go back and try to finish what you did not finish. There's few things so wonderful, yes?

You were necessary to me...

Three weeks ago, I stood in a graveyard and said goodbye to someone so loved, so young, and we all sang You Are My Sunshine.


It was her favorite song. It once was mine, too. As a small girl in pigtails I'd ask for it over and over.  And then again. Sing it to me, I'd beg. Please. It's the most wonderful song in the world.


So I sang it for her. For us. We all did.


And only days ago, there I was saying goodbye to someone so loved again. Standing by myself, in my gnome-filled garden, singing what was the saddest song in the world to me right then. 

Bob chastised me after. You never taught me that song, he said. You never sang it to me when I was little.

I didn't?

I thought I had. Like, really thought I had. Ahem. But it doesn't matter. It's not too late. I'll sing it with him tonight, anyway. He'll be mortified, as only a tween can be. But so what. That's my job, as a parent. To mortify.

 Then I'll tell him to sing it to his children, as my parents did to me, and that every time he does he'll remember I love him. How much I love him and his brother. He might even listen. And maybe it will be a happy song for him too.

It's not like we should need these reminders. Every brain scan, every test results, is a kick in gut. But even then, we slip into complacency in between sometimes.

So. I suppose even the worst news brings something more to each of us.

Life is good, but it's too short. Don't be too late. Go sing.


"When I looked at you, my life made sense. Even the bad things made sense. They were necessary to make you possible." 

"Songs are as sad as the listener."


 --Jonathan Safran Foer, Extremely Loud and Incredibly Close.

Special Event

The Fifth Annual Cavernoma Alliance UK Forum

Today, Saturday, June 4th from 9 am to 5 pm

For more info go to Cavernoma Alliance UK here. Or here.

Find'em here on Facebook too. 

Today we remember...

And give thanks.

We wish a wonderful holiday to all.

Have a wonderful weekend, everyone!

"Live free or die. Death is not the worst of evils." -General John Stark

Please...

Today a little girl is undergoing her second brain surgery for angiomas in less than a year, and her family needs your help. To donate, go here, to their Firstgiving page.

Meanwhile, keep Jocelyn in your hearts and prayers as she's in ours.

Time Wasted

Once thing they don't tell you when they hand out the CCM diagnosis: you'll spend a lot of time looking at and pondering brains. 

Scans. Pictures. Drawings. MRI results.

Brains.

You will stare at them and study them and worry about them. 

You'll prioritize them.

"Oh. It's only a bleed in the frontal lobe."

"Please don't let this be the brainstem."

You'll do everything but know what, exactly, it means for you, for the ones you love.

Because of course you can't. 

Know.

I've been trying to remind myself of that, and failing, of course. If BBBs lesions are bleeding, growing, and it seems they are once again, what does this mean? I want to know.

Instead I've been pondering and studying and worrying, and soon I will stop. It's pointless, after all. I have laundry to do, and that would probably be a better use of my time. Washing those damn clothes. But I think it's okay, to indulge for a while. Then it's back to life and chocolate and living that life, and of course more chocolate. It's just too bad they don't tell you that part upfront-all the time you'll waste on brains. 

And So Another April Goes...

April. 

National Poetry Month. My birth month. Spring. 

My favorites things.

We spent this month celebrating. Words. Writers. Donuts.  And for that I thank you and look forward to next month and all it brings. Hopefully, even more donuts.

This Is What A Good Princess Does

I imagine I am Snow White while the consulting room begins to overflow with doctors.

Perched on plastic folding chairs, they’re lined up like seven dumb dwarves all in a row.

I ignore them though, and sit, the naive princess,

watching singing forest animals cavort around my satin-slippered feet.

Let us explain, one dwarf says, oblivious to an invisible squirrel scampering across his loafer. Let us show you, another says, slapping up x-rays on the light box. 

           

Let’s not, I say. And yet, they do.

Brain lesions. Developmental delay. Abnormal.

           

My son.

Their words swarm around the room, buzzing around my head, like thirsty, leering insects anxious to draw blood, frightening off my forest friends.

They’ve gone too far now and I think, shoo fly. Though what I actually say is let’s not.

They do, though. 

Doc, the head dwarf apparently, speaks to me in an unintelligible accent when all the while an Ivy League smirk plays upon his lips.  

           

You must understand, he explains. It’s not so simple. You cannot let’s not.

           

Ignoring him, I wonder to myself if all dwarves talk this way. How silly he is,

telling me what I can and cannot. I’m Briar Rose, after all.

But then, to my dismay, I suddenly find that I have become the focus of their concern.

Am I okay? Do I understand? Am I listening? they ask.

           

Sure, I reply. I hear every word. And then it happens.

           

With horror I watch as Doc’s face begins to meld with those of the other dwarves.

Bashful. Irritable. Donner. Blitzen.

Odd, I wonder, how I can never remember all their names. But then, who could?

It is too much to ask of one princess.

           

It would help if you would wear name-tags, I say. 

But before they can answer, together they transform before my very eyes into the Wicked Witch. And in her outstretched hand, which she extends toward me, Snow White, lays the diagnosis.

Take it, she says. Take it, it’s yours to have, yours to bite and savor. Here.

This is what a good princess does.

Even though I am Briar Rose, I don’t want to be good at all. But I am many things, and good

is one of them. So, with a reluctant sigh, because I can no longer not,

I wrap my fingers around it. And for once, as I bite into the tender fruit, 

I’m grateful the animals have fled.

-Once a semi-finalist in the William Wisdom-William Faulkner Writing Competition, this poem was just one more way for me to say, "Yes. Angiomas suck." Be it art, writing, or just standing on your front lawn screaming to no one and anyone who will listen, it's important to find your own way to say what you want to say, whatever it is...

Happy End of Poetry Month, everyone.

The Power and Passion of Memoir...

I call it The Moment. You know, that split second where our lives are divided into the Pre-Diagnosis and Post-Diagnosis period. 


And I've always thought split was the perfect word for it too. Everything I was, everything I had, knew, and experienced was upended and turned inside out until I didn't recognize my life anymore.

Until I didn't even know me.

Every day since has been about pulling all those pieces all together, turning them right side up, and then  fitting them all back together. I even thought maybe I could find some meaning in it all. No easy task. But one of the ways my son and I have done it is by writing our stories down...

Anyway, I stumbled on this article , Recovering Self-concept After Trauma, by Jerry Waxler the other day, and it was a huge ah-hah read for me. Yes, I thought. That's it.

So I wrote Jerry. He's a speaker, educator, author, and therapist. I know of him and his passion for memoir; we both frequent the same writer's forum and he's been insanely helpful aiding struggling writers on there. But I didn't know him, so I was incredibly pleased he agreed to come talk to us a bit about the power of memoir. Scroll down for our chat.

You can read more about Jerry here on his website, Memory Writers Network. Also, you can check out more articles here,  his books The 4 Elements for Writers and Learn to Write Your Memoir in 4 Weeks here, and his blog here. A list of his events and workshops are here. 

Jerry Waxler

Can you tell us a little about yourself:

Haha! One of the reasons I became interested in memoir writing was because I never knew how to answer this question. Your intro is pretty good. I am a blogger, therapist, author, teacher, husband, cockatiel and horse lover. If you are still interested in a year or two when my memoir is published, you’ll be able to find a lot more in there.

Tell us a little about your mission. You’re so passionate about the art of memoir, as well as helping others; what drew you to this?

I have always been fascinated by what goes on inside my own mind, and frustrated at not understanding what goes on inside other people. Memoirs are the perfect solution. By writing a memoir, people dig deep into understanding themselves, and do it in a way that they can share with others. For me it is the perfect antidote to all sorts of social ills. By seeing into the mind of “the other” we increase our mutual compassion. By sharing the details of various types of journeys, we learn life lesson. We are transported out of our own reality, into someone else’s, giving us travel, entertainment, education. The list goes on.

How long did it take to write your books? Are more planned?

My first book “Four Elements for Writers” evolved from about ten years of interest in self-help and psychology literature. When I became involved with a writing community, I wanted to frame these techniques in a form that could help writers. The book emerged from the handouts and exercises I prepared for a series of workshops over a period of about two years. The second book “Learn to Write Your Memoir” also emerged from workshops. I love teaching. By teaching and learning from my students, I can refine my message. The second book took me about one year. I have several other books in progress. One is, of course, my own memoir. Since I had no prior training as a story writer, I have had to learn how to write stories at the same time as I sort out my past. That has been underway for about five years. The other book in progress is about the psychological and social importance of memoirs in the twenty first century. The interesting thing about this book is that I thought I was completely finished last year. One of my readers complained about its structure, and I decided I wanted to completely redo it. I essentially threw out the entire manuscript and started over. I have heard about writers doing this, but I never thought I would have the stomach for it. It turns out not to be so hard.

You’ve authored a blog and numerous columns. What inspired you to write books  too?

I love writing the blogs because they give me a sense of accomplishment, and when people like you find me and reach out, it gives me a sense of community. It’s very rewarding. I also love books. I have learned and grown so much from reading books. When you sit down with a book, you can move into the author’s frame of reference. It’s a wonderful medium, but writing a book requires a lot more patience than a blog.

Speaking of which, you have an amazing blog as well. Can you share what you hoped to accomplish and why with it?

Thanks for the compliment. In addition to creating an online community, the blog is a repository of ideas. So if I want to refer back to something I said a couple of years ago about a particular memoir or a particular challenge memoir writers face, it’s online. Also, blogs are a terrific way to let people see who you are and what you have to say. I recommend blog writing for anyone who has a message they want to share with the world.

You say there’s a deep power to memoir. That it can heal, lend insight to our lives and purpose, even after some sort of trauma or life crisis.

Yes, yes, yes! Find the narrative for your book, and you will develop a deeper sense of who you are, how you got here, and with a little practice, it can help you find where you are going.

 But there can be an intimidation to writing, especially for someone who never saw themselves as a writer. Can anyone tap into memoir, and find it helpful?  How do we get past that fear?

Sure. There is always plenty of intimidation when you try to do something creative. I look at such reluctance as a solvable problem. My book Four Elements for Writers offers psychological tools like how to refute your own self-defeating mental approaches, how to love your audience. There are other approaches, of course. Julia Cameron’s Artist’s Way is all about healing from these kinds of self-downing attitudes. 

And how do you advise someone start out? Journaling? Diary?

Ah, you’re onto something here. Starting is the key. Once you start, it’s easier to keep going. In fact, one of the techniques I suggest in Four Elements for Writers is to break down difficult tasks into smaller, less intimidating ones. Journaling is a great tool for building momentum as a writer. In my book “Learn to Write Your Memoir” I offer a step by step guide.

Speaking of fear, you talk about sharing, how meaningful sharing your story can be.  But what about those who want to write just for themselves? Is it still beneficial? Writing memoir doesn’t mean you have to let others read it, or even *gulp* seek out publication?

Writing for yourself is a fabulous activity with many benefits. I have done it for years, and consider it one of the important self-development tools of my life. Memoir writing doesn’t take the place of journal writing. It’s simply a different medium. Memoir writing requires that you edit and shape your writing into a form that would make sense to a stranger. Even if no stranger ever reads it, you gain the benefit of trying to form your thoughts into the shape of a story, rather than the free-form of a journal.

What if you’re convinced you’re just a horrible writer?

That’s  a perfect example of a self-downing thought. First of all, your choice of words, “horrible” and “writer” are designed to make you feel bad. Imagine how rude you would feel to say such a thing to someone else. Why say it that way to yourself? Frame it in a way that encourages improvement. “You are a writer who has a message, and will improve your ability to communicate that message if you work on your craft.” This longer sentence doesn’t roll off the tongue as easily as “horrible writer” but if you can shape your thoughts in this constructive manner, you will encourage yourself to grow. Another problem with “horrible writer” is that it doesn’t really mean anything. Who are you comparing yourself with? The healthiest person to compare yourself with is yourself in ten years. If you look forward to your constant improvement as a writer, imagine your pleasure when you can look back and say, “I am so much better now.”

One of the things I love is when you include a brief writing exercise for your readers to experiment with…do you have a favorite? Can you share it?

I write my essays based on things I read in memoirs, or challenges I have faced in a memoir class or when writing my own memoir. Then I try to imagine how a reader could apply the lesson to themselves. I don’t know if I have a favorite, but the one that got the most reader response was a writing prompt about hair. “Good hair in the melting pot.” http://memorywritersnetwork.com/blog/hair-in-the-melting-pot/

What do you hope your readers come away with after reading your work?

Inspiration to write about their lives.

On a less serious note:

If you had to choose between Hemingway, Vonnegut, and J.K. Rowling as the world’s best  author, and you couldn’t choose Vonnegut or Rowling, who would you pick?

Nice! Well, I think one reason readers are so smitten with Hemingway is because he was so driven to write stories based on his own experience. Of course, he was an unusually competent writer and a profound adventurer so he had unique advantages. But one thing of his we can emulate is to use the authentic power of our own experience to develop stories worth reading.

What would your last meal be?

I would fast.

Are you a milk chocolate, dark chocolate, or white chocolate kind of guy?

Nicely put. When I was in college, I saw a news article in which Lady Bird Johnson was asked to pick her favorite, and she said “They each have their own lovely qualities.” I thought it was such a perfectly executed side step, I pasted it on my wall, along with hundreds of other interesting newspaper clippings. I’d like to use Lady Bird Johnson’s device to answer your question.

A huge thank you to Jerry. (Readers, make sure to head over to the poll and give us your own chocolate pick, and yes, play favorites!)  And remember, if you buy and like Jerry's books (and any book you've found helpful, really) help spread the word.  Meanwhile, consider getting writing yourself. For yourself. These healing power in words...

One Piece of Advice...

On writing memoir and, well, giving advice:

Whenever students in my memoir workshops give me their reasons for not writing a memoir, I say, “Look at your objection as a solvable problem.”

If you really want to extend your question into all of life, I could repeat the coaching I received in my counseling classes. “Never give advice.” I’m not always good at following that.--Jerry Waxler, author, instructor, and creator of the Memory Writers Network. Find his books and more of his writing here. 

The Web-Savvy Patient

The Web-Savvy Patient by Andrew Schorr (see here and here) is now available for the Kindle too! Yes! What can we say, we love our Preciousss Kindle, and new books make her vair, vair happy...

Become an Angioma Alliance Partner

Do you sell on-line? Are you interested in donating a portion of your proceeds to an amazing organization?

Yes?

YES?!!?

Then check out this blog post full of awesomeness. Angioma Alliance is looking for partners to share in their upcoming storefront.

For the fyi, check it out and then email info@angioma.org

Successfully Surviving Brain Injury

One thing I'm always on the search for is a good book. You know, something that informs, or uplifts, or just touches me in some way. Something that I can relate to our family's struggles with CCM's. And well, if it combines all those elements then I've hit the jackpot, and one of the first things I want to do is share it with you.

It's time to share.

I'm so happy to introduce you to Garry Prowe, author of Successfully Surviving a Brain Injury. He was also kind enough to talk to us a little bit, and for that we thank him.

Garry and Jessica Prowe

Scroll down to read our interview with Garry.  He was also kind enough to provide us with One Piece of Advice. It's a good one, and I whole-heartedly agree with him.

You can also check out his phenomenal website here.  His book is also available on Smashwords, Amazon, and Barnes and Noble.

And don't forget to bookmark his blog, Reading Brain Injury, where he reviews the best brain injury books out there.

For the list of books we've compiled here at Angiomas Suck, you can go here.  I'm also planning to add a free-standing page of all the book recommendations we've received , including Gary's.  Stay tuned.  Now, yes, I will stop chattering and let you go read the interview. (Do you think he was pulling our leg about the iPod? Hmmm.)

Enjoy!
****

Title: Successfully Surviving a Brain Injury: A Family Guidebook, From the Emergency Room to Selecting a Rehabilitation Facility

Author: Garry Prowe

ISBN: 978-0-9841974-3-9

Page count: 246

Genre: Nonfiction, medical/health

Price: $17.95

Can you tell us a little about yourself: My wife Jessica acquired a severe brain injury in a car crash in 1997; I am her principal caregiver. I've been writing about brain injury for about ten years. In addition to my book, I've had articles published in many brain injury publications and web sites and I've presented some of my research conclusions at regional and national conferences. I have a Masters degree in Public Policy from the University of Michigan. I worked as a policy/management analyst for the U.S. government for about twenty years.

Tell us about your book: At the time of Jessica's accident, I discovered that there was no single source of material addressing the countless medical, financial, insurance, legal, family, and personal issues families face in the first few weeks and months following an injury. I decided to write a book that would answer many of the questions they have as they sit in ICU waiting rooms, plan for rehabilitation, puzzle through insurance and government benefits paperwork, and try to keep their emotions under control.

How long did it take to write the book? Are more planned?

I spent about five years researching and writing the book. The original plan was to write a series of four books, with the next three covering rehabilitation, going home and reentering the community, and living a full life with a brain injury. However, I've been reconsidering this plan for two reasons. First, in the past few years, there's been a surge in the number of books published about brain injury. Many of the issues I planned to cover in these books have been addressed well by other writers. Second, I have some chronic health problems that have been slowing me down.

What inspired you to write the book?

The desire to give others the comprehensive and easy-to-read information I needed after Jessica's injury.

You have an amazing blog as well, where you review books that in some way relate to brain injury. Can you share what you hoped to accomplish and why?

Unlike thirteen years ago, today there are too many books about brain injury available in bookstores and on-line. They vary greatly in the quality of the writing and the value and comprehensiveness of the stories they tell and the information they offer. Readers can be overwhelmed by the choices. In my blog, I try to narrow these choices to a select number of books that readers can trust will be well worth their money and time.

What do you hope your readers come away with after reading your book?

Valuable information, helpful advice, and an assurance that survivors of a brain injury can live full, happy, and productive lives

Where can we go to buy your book?

www.BrainInjurySuccess.org or any book seller.

Short excerpt from book:

You are reading this book because someone you love has suffered a brain injury. The form, extent, and consequences of the damage are yet unknown. Her doctors are unable to make a prognosis. "Every brain injury is unique and unpredictable," they say. "It will be months before we know for sure." A hospital social worker has advised you to hope for the best, but prepare for the worst.

This news is incomprehensible. What does the social worker mean by "the worst”? What must you do to “be prepared”? When will your spouse emerge from her coma? How badly will she be impaired by her brain injury? How soon will her doctors speak with some certainty? How will this misfortune impact your family and your future?

In 1997, I was in your place. My wife, Jessica, suffered a serious brain injury in an automobile accident. Like you, I was relieved to hear that she would survive her near-death experience. Like you, I was devastated to learn that she would acquire any number of lifelong impairments. And, like you, I had many questions and few answers. "Only time will tell," her doctors repeated over and over. Confusion, panic, grief, and fatigue were my constant companions every hour of every day for weeks.

On a less serious note:

If you were stuck on a desert, which would you pick-a book or an iPod?

What's an ipod?

Name your favorite donut.

Haven't had one in years, but I'm a sucker for anything that combines chocolate and raspberry.

Are you a little bit country or a little bit rock and roll?

Rock and roll, but I really enjoy Alison Krause.

Thanks again, Garry. (Readers, make sure to head over to the poll and give us your own desert island pick!)  And remember, if you buy and like Garry's book (and any book you've found helpful, really) leave a review on the site you purchased it from and  help spread the word.