A Day of Remembrance

Our modern holiday of Halloween has its roots in the pagan tradition of Samhain (pronounced SOW-en). Samhain is the last of three harvest festivals, celebrating the end of harvest while preparing for the long, dark nights of winter to come. It is believed that at this time of year, the veil between our world and the world beyond is at its thinnest. Rituals to honor and/or speak to those who have gone before us are common. I, like everyone else, have lost family. Due to my disease, I've gotten to encounter Death a bit more often as He has taken most of the friends I met at MDA Camp. To mention all of them would take hours, and frankly I don't have the fortitude to undertake a task of that nature. However, I must mention two, for these deaths are with me daily, always at the edge of my waking thoughts, sometimes even entering into my dreams.





My sister's death caught me completely unaware. She had been in the hospital over Christmas with pneumonia. I spoke with her the day she was released, and I was utterly amazed that she had been sent home. The congestion I could hear in her lungs made ME want to cough, and she clearly didn't have enough strength to cough all that crap out. A month later, her best friend called my brother to say Stacy was gone. Her death was so sudden that Dad requested an autopsy.





The report stated that nothing unusual could be found, merely the expected physical changes consistent with her disability and a slightly enlarged heart. Folks in the family started freaking out -- enlarged hearts run in the family, what about Dawn's and Paul's hearts? We were checked; we were fine.

Years later, I found a report in Stacy's university paper that stated she had called campus police in the wee hours of the morning (around 2:00am) complaining of an asthma attack. She was taken by ambulance to the hospital, she was treated and released, and she was taken home by the ambulance crew around 6:00am. According to Stacy's attendant, when she arrived a couple of hours later to get her up, Stacy stated that she was exhausted. Could she please sleep a little longer? The attendant said no problem. When she returned a couple of hours later, Stacy was breathing but unresponsive. She died at the hospital a short time later.

My sister and I were the best of friends as kids, but as adults it became clear that we were two very different people. Actually, I'm not even sure how true that last statement is. I think we were still a lot alike, but we just took different paths when we moved out on our own. I was studious, trying to make the most out of the scholarships I'd earned and trying to keep my college debt to a minimum. The extent of my "partying" was a group of dorm friends sitting around getting hilariously plastered. I was the obligatory babysitter since I didn't drink. I rarely skipped classes. Stacy, on the other hand, was not too concerned about school. She didn't party, but she was a huge flirt. When the Internet got big, she'd spend all day and half the night in chat rooms. Once, she announced to the family she was engaged to a half Native American man from New Mexico -- she neglected to mention she had never actually MET the dude in person. In her first year of WSU she had more "canceled" classes than I'd had in five years of undergrad and one year of grad school. We fought like crazy. I called her irresponsible. She called me a prude. When she moved to Illinois, we weren't on speaking terms. I'm fairly certain the only reason she came over and said goodbye was because Paul and I were living together; she definitely had more to say to him than me.

Looking back, I know she was going through the same "FREEDOM!" phase that many young adults do. I was thinking then that if she wanted a break from school to stretch her social wings, then she should just stop racking up debt for classes she never attended. I was stuck in the mentality that I was the big sister and I knew better. What a joke.

After Stacy died, our parents and our aunt and uncle went up to IL to clear out her campus apartment. Mom and Aunt Chrys told me later that though our relationship was only in the beginning stages of rebuilding, we were still more alike than we were different. Similar decorating styles, similar leisure reading choices -- we even had the same damn perfume in our bedrooms.

I now regret those last few years of wasted time, that both of us were so stupid and just had to be RIGHT. Sometimes it still hurts, but Stacy has let me know that for her, it's all water under the bridge. She's forgiven me, so it's time I forgive myself.





If my sister's death caught me off-guard and sent me into a tailspin, then my brother's death hit me like a Mack truck. It didn't help that I had been sick with a stomach bug for a week and had just admitted myself to the hospital for dehydration. Most people who know me well know that I'm a pretty cool head in a crisis. It took me ten hours to allow myself to cry when Stacy had gone. With Paul, I lost it. Bad. I even yelled at my father when he tried to calm me down. I was going to pieces, and at that moment I didn't care. The nurse came in with my pain meds, and I went to sleep. I didn't want to wake up. Ever.

Paul had spent 31 days in the hospital to get rid of pneumonia (sensing a theme?). During this time, the chronic pain he'd been suffering for twelve years had gotten so much worse. Dad told me he would be given Percocet, then two hours later Dilotid, then two hours later Percocet, then two hours later Dilotid, and so on, ad infinitum. I know big guys who couldn't handle that regime, but it barely touched the pain experienced by my 41-pound brother. A few days before he died, he told our mutual friend, "I'm so tired. I don't want to do this anymore."





Paul and I were the opposite of Stacy and me -- we drove each other crazy as kids, but as adults we were as close as a brother and sister could be. When he started university, everyone thought he was a biology major because he spent so much of his free time in the lab with me. My fellow grad students made him part of the fold. He knew more about my thesis project than my lab-mates. Together we took a Shakespeare class, an anthropology class, and a fiction writing workshop. I was the one he turned to when he needed help selecting poems to submit to contests. His two favorite nicknames for me were "tree-hugger" and "bunny-lover". He rolled his eyes at my tirades against styrofoam, but he'd use real plates -- at least when I was around. The only difference was political views. He was a staunch Republican, and I was . . . well . . . not.

It hurt me that I wasn't in Kansas when he passed -- one week after getting released from that 31 day stretch in the hospital. He endured more pain and illness than any one person should ever have to. Every night I prayed for his pain to be taken away. The first time I thought of that after he died, I screamed at the Higher, "That wasn't what I meant!" I spent months in a strangely functional form of depression -- I went through the motions of research and interaction with others, but I had absolutely NO emotional investment in anything.

I think the biggest hurt is that he never told me goodbye or gave me any indication that he was OK the way Stacy did. I dream about him, but only rarely. I know my sister keeps an eye on me, but I feel as though my brother just went on without looking back -- which is so much his practical nature. Gah, I sound like such a selfish bitch.

So, this turned out to be longer than I intended, so if you made it this far, let me know and I'll send you some cookies as a reward.

For my sister and brother: I couldn't have asked for better siblings. I have to be honest -- I hate that you left me alone. You gave me strength, and you forced me to see my insecurities. Everything I accomplish in my life is due in large part to you (and our parents). I love you and miss you every single day.

I've never been so happy to own a Kindle . . .

. . . as I am today, because I just purchased my friend's book. A book I have had the privilege of seeing in various forms over the years. A book that has been a long time coming. Congrats, B!

Go here to buy your own. Don't have a Kindle? I've heard rumors of a paper copy coming soon.

The love of life, at any and every level of development, is the religious impulse

15. Wise Women: Over Two Thousand Years of Spiritual Writing by Women by Susan Cahill

This was an evocative collection of writings, the majority of which were written by women but also included pieces about women written by men (e.g., Ruth and Naomi in the Old Testament, the Greek play Antigone) and even court transcripts from trials of women who stepped out of their "traditional" roles (e.g., Joan of Arc). The writings are so diverse, each amazing in its own way. I could probably write a research paper, but I'll limit myself to a few of my favorites.


First, a surprise to me -- a song I can remember singing in elementary school. I had no idea of its origins.

'Tis the gift to be simple, tis a gift to be free,
'Tis the gift to come down where we ought to be.
When we find ourselves in the place that's right,
'Twill be in the valley of love and delight.
-- Shaker hymn


Passion, intellect, moral activity -- these three have never been satisfied in a woman.
-- Florence Nightingale in Cassandra

At the time this was written, this statement was so true. Very few women had the opportunity to persue a higher education, to realize their passions much less act upon them, to chase their dreams. Sadly, there are women even today who still perceive limits on themselves.


The prophetic and practical wisdom of women -- that the gift of life that comes with the responsibility to love and protect it wherever we find it, regardless of our particular identifications within borders of race, religion, gender and class -- has never waned (p. 160).

I know many might read Cahill's statement and think of the raising of children, but I feel that myself and several of my female friends live this in a broader sense in that we love and protect our extended families, our communities, our ecosystems and fellow living beings. This statement very much meshes with an observation made by a fellow graduate student -- that our conservation biology biology program is made up primarily of women because women are more nurturing.

The writings of Annie Besant and Florida Scott-Maxwell are particularly poignant for me, the latter especially because she writes about approaching the end of life. Her musings are thought-provoking for anyone with a disease or disorder that impacts her/his lifespan, but I read her words on the day that some of my brother's writing was returned to me.

Ten years ago . . .

I got up and went to my "second" job at the university Writing Center, and my brother and Brian (also tutors) had the TV on. That is a big no-no, so I figured something major was happening. My brother told me about the two planes, but at that point only the first tower had collapsed. I started doing some data entry, and suddenly my stomach rolled and I felt like I was going to vomit. At that exact same moment, I heard the news anchor say the second tower had just gone down. I was supposed to give an exam to my biology class that evening, but needless to say, I not only postponed the exam but also canceled class. When I heard about the attempt on the Pentagon, I was scared for my friend who works directly across the river as a physicist at the Naval Research Labs. Thankfully, everyone there was OK. I spent the entire day in a stunned fog.

It's hard to believe that it's been ten years.

2-for-1 special

You get a two-fer this time because I completed #13 before going to the disability caucus and started #14 after returning and forgetting I hadn't blurbed about the previous one.



13. All the Windwracked Stars by Elizabeth Bear

. . . song swept down from all the windwracked stars above

I've been reading EB's LJ for a while now but had never read any of her books. Silly Dawn -- no cookie. I love the way she uses language -- e.g., I haven't seen some of those synonyms for "red" in a looooooong time. I'm not familiar with the Norse pantheon, so I'm not sure how much she played with the primaries or if she stuck true, but it really doesn't matter because I enjoyed the story so much. Very recommended.



14. The Birthing House by Christopher Ransom

Death borders upon our birth, and our cradle stands in the grave

Meh. A great story idea with so much potential, but it tripped and face-planted at the starting line. I'm a crappy writer, and I feel I could've done better. The top of the dust jacket said "international bestseller", and I'm still trying to figure out how. The characters are one-dimensional, the conflict between Conrad and his wife was forced -- and what the HELL was with that ending? Don't waste your time.

Gimps unite!

Mom and I are heading out of town tomorrow to attend a disability caucus. We'll get home Friday afternoon or evening. I've never been to one of these, so it'll be interesting. Tomorrow's highlight is a performance by Flame, a rock group made up completely of people with disabilities.

Everyone be nice to each other and share your toys while I'm gone. *hugs*

*trumpets sound*

My FA review is finally in print, and my official PDF is saved! Please send me a SASE for your autographed copy. *grin*

Who's your mama?

Over the weekend, I got behind on the number of fish I wanted to measure. Last week, I set myself a goal of measuring 22 individuals per day. At the start of my day, I was 38 individuals behind. I was just hoping to make up the 38 because I thought there was NO WAY I'd make up the back work plus do today's before my hand and wrist pooped out on me. Well, I'm a rock star, because I measured 65 fish today, which puts me AHEAD by 5. At eight measurements per fish, that's a total of 520 measurements. My wrist and hand are hurting, but I'm very proud of myself.

There is no good or evil, save in the way you see the world

12. Daughter of the Forest (Sevenwaters #1) by Juliet Marillier

This book was a reimagining and expansion of a traditional Celtic myth called "The Swans." A friend of mine had told me that this book made her cry, and I'll admit that I had my doubts.

Yeah, I came close to crying.

The story is set in Ireland and Britain at a time when the Irish still practiced the Old Ways but the Britons had converted to Christianity. The evil step-mother enthralls her new husband and drives a wedge between him and his seven children (six boys, one girl). The children have great ties to the magic of the forest in which they live (one son is clearly destined to be a druid), and they gather together early one morning to perform a ritual and ask the Lady of the Forest to help them break the spell Lady Oonagh (what an evil sounding name) has over their father. But Oonagh interrupts the ritual and turns the boys into swans. Sorcha escapes into the forest thanks to the split second warning and shove of one of her brothers. Sorcha is only twelve, but the Lady of the Forest tells her she can save her brothers. She must make six shirts using the stems of the very spiny starwort plant, and when all six are finished, she must slip the shirts over the necks of each swan to break the spell. There's just one teensy weensy catch -- she can speak not a word until the spell is broken, nor can she tell her story to anyone via any means (writing, sign language, pictures).

This is very much a story of "What can happen to this poor girl next?" The plot is ever-changing but always interesting. The characters are fully fledged (no pun intended) -- you love the ones you're supposed to like and despise the ones you're not supposed to like. I made Mom laugh when I told her I wanted to poke one character in the eye with a very sharp stick. My only complaint is that I did not get to witness the punishment of that particular character. I found myself not wanting to work on my research so I could keep reading. Haven't had book do that to me in a long time. I just hope the next one is as well crafted.

A poem for today

Fish heads, fish heads
On my screen
Fish heads fish heads
Measuring


I know -- don't quit my day job

Hermaphrodite butterfly

This butterfly is literally half female and half male. Nature can be so groovy.

I forgot to pull a quote

11. Bone Crossed by Patricia Briggs

A friend recommended Patricia Briggs to me a few years ago, and I pretty rapidly went through the first three books of her Mercy Thompson series. Like the Hamilton I finished a few days ago, it falls into the urban fantasy genre. The third book put poor Mercy through hell, and she's trying to cope with that in this fourth book in addition to being on a vamp's hit list. These books aren't as memorable as the great literary classics, but they're good for a mind candy read. I didn't like this one as much as I remember liking its predecessors, but to keep me occupied and to keep my weary hand off my mouse, it was acceptable.

Still haven't decided if I'm calling the JADRC.

Get up, get up, or you'll die!

10. Hit List by Laurell K. Hamilton

This is the latest installment in the "Anita Blake, Vampire Hunter" series. This series was my first foray into the now burgeoning "urban fantasy" genre. I liked this book because LKH got back to a plot driven story. Readers who are fans of her sizzling and . . . creative . . . sex scenes will be disappointed because this volume had only one, and it was fairly tame. I really loved reading this one (I read about 75% of it in one day), but the conflict resolution at the end was a little too . . . quick? I've kind of gotten used to LKH writing a fairly lengthy (upwards of 100 pages) climax so we get lots of details and lots of back-and-forth in the fight. We get to see Anita's vulnerabilities and how she deals with them. This ending was so Mary Sue. There was no real struggle -- and when one is dealing with the Mother of All Darkness, the mother of all the vampires, one expects a great deal of struggle.

Laurell, I respect you a great deal. I think I've read 98% of your published works. But that climax and resolution? Not up to your par. *shakes head sadly*

Book 4 of the JADRC. I'm thinking about calling this one on account of the nine-year-old's decided lack of motivation. As of the holiday, she STILL hasn't finished her first book. More about that in a different post.

It carries the conviction of a true note in a beautiful melody . . .

9. Women in Celtic Myth by Moyra Caldecott

This interesting little book shares tales of strong women from the Celtic tradition. Most are moral commentaries on those most human tendencies from greed to love. The last two read like fairy tales, complete with happily-ever-after, but still speak of the ancients if you look carefully. Each tale is followed by a "Commentary" that helps to clairfy the symbolism so important to the Celts. This was a fast and fun read.

Book three of JADRC

Who's a book whore?

I'm a book whore.

And I'm OK with that.

Funny overheard statements

My dad to the puppies: "Don't kill the pillow. The pillow is a protected species."

A mark of the despised barbarian

8. The Eye of the Beholder: Deformity and Disability in the Graeco-Roman World by Robert Garland

On one of my Amazon skims, I was browsing through a lot of disability literature. Most of it is current (i.e., within the last 20-30 years), with quite a bit even going back to the turn of the century. I was clicking "Add to Wishlist" pretty regularly.

(For those of you who don't know, I use my Amazon wishlist not as a way to get folks to buy things for me but rather as a reminder to myself of what I'd like to read one day. Then I look for one or two at a time at the library or order it through inter-library loan.)

So, I was noticing a pattern of disability literature being not more than a century-plus-change old, when this book appeared. Hmmmm, I know about Hephastus (Vulcan to the Romans), the lame-footed god who was the blacksmith of the gods and cuckholded by his wife Aphrodite, but that was pretty much it. Garland went through as much of the sketchy literature and art available to try to piece together how the deformed and disabled fared in Greek and Roman society. Obviously, there isn't much available, and of course, most of it is bad. Naturally there is the tale of Odysseus's dealings with Polyphemus, the one-eyed giant. Aristotle philosophizes on the deviation from the "ideal form". Pliny goes so far as to describe the "monstrosities" of humanity and animals as almost equals. Dwarves and deformed slaves were bought specifically for the entertainment of the elite, and whomever had the oddest, strangest being was envied by his peers.

Depressing as the actual history was, I still found it interesting and informative. The set of 60-something panels in the center of the book was fascinating. I mean, the way the non-disabled portrayed the disabled just fricking slays me! Because of their low, looooow social status, naturally the gimps weren't portrayed in high art with the expensive media, i.e., they weren't carved marble or painted. Sculptures were created of bronze or more commonly terracotta. Drawings/paintings appeared on the cheapest of vases or water urns. The mentally ill/disabled were not exempt, and their portrayal is probably the saddest of all -- grotesque and twisted faces shaped to supposedly reflect the internal madness.

One practice in a particular village was strangely resonant of today -- that of punishing or even executing "scapegoats" (generally the deformed or disabled) as a means of appeasing angry gods. Garland remarks, "The incident tells us much about the universal tendency to heap blame upon the weak and defenceless in periods of acute tension as a way of re-directing frustration and fear." This puts me in mind of the current state and federal budget issues of cutting money to the programs which help the weak and defenseless (poor, disabled both mental and physical, at-risk) in order to redirect constituents' frustrations and fears from looking more closely at the spending habits of those in power. Those in power call these programs "a drain on resources" which just reinforces the stigma.

Wow. I just realized how conspiracy theory that sounded. I've maybe been watching Hodgins too much on "Bones".

Book #2 for me in the JADRC. I think the kid is still on her first. Oy. I see I'm going to have to sweeten the pot for her.

Grace's 1st birthday party

Last Saturday was Bug's birthday party, so I thought I'd share a couple of pictures.

Here she is offering me a bite of her cake.





Mmmmmmm, cake!





"Are you SURE you don't want a bite of cake, Cousin Dawn?"

The secrets we all have and will never tell

7. The Memory Keeper's Daughter by Kim Edwards

I know I should sit down and write an extensive review, but my brain hurts and I can't think of anything that hasn't already been said by others. The set-up is this: Dr. David Henry is forced to deliver his own twins during a freak Kentucky snowstorm in 1964. His son, born first, is perfectly healthy and normal. *insert gimp growl* His daughter, however, has Down Syndrome. Having lived through the early death of his sister at a young age, David decides to "spare" his wife the future loss of their daughter -- he hands her off to the nurse and asks her to take the baby to a home for the "feeble-minded". Instead of telling his wife what he did, he tells her the girl died. What he doesn't count on is that Norah has as much difficulty dealing with their daughter "dying" as an infant as he imagined she would raising a "retarded" daughter. Like the function of the camera Norah gives David the following Valentine's Day, the author gives us snapshots of the lives of the Henrys and of Caroline, the nurse who chose to raise the baby on her own in another city rather than leave her in an "awful" institution. Just as the book is a set of photographs for us, so too do photographs dominate the lifes of the characters.

In sum, I liked it. The overall theme is obvious but not in-your-face obvious. The book was fairly well-crafted, in my opinion. If you can get your hands on an inexpensive used copy (like I did) or if you can get it at your local library, go ahead and give it a read. Or you can borrow mine if you're nearby.

By the way, this is my first book in the Jamie/Aunt Dawn Reading Contest (JADRC). To my knowledge, the mini-redhead has not completed her first book. Sheesh! I stretched it out over two weeks to give her a chance to get ahead of me.

Happy birthday, Bug!

Today is Grace's birthday -- she's a whopping one year old. My first memory a year ago today upon waking from sedation (the doc kept me sedated for 24 hours after my surgery) was my nurse saying, "Your mom just called and asked me to tell you that your cousin had her baby today." I didn't get to see her until she was about two months old (on MY birthday). I love my little Bug!