Saturday, October 17, 2009

Compassion Fatigue




I have always understood compassion fatigue to be the sort of burnout that occurs in those caring for someone with a chronic illness like Alzheimer's or someone affected by Post Traumatic Stress Disorder. And while I don't pretend to know, really, what the medical meaning of compassion fatigue might be or its diagnostic criteria, I will play loosely with the term here in this post.

As I was driving one of my sons to his flag football game this afternoon, I started thinking about the Epilepsy Walk that we're doing tomorrow afternoon here in Los Angeles. This is the third time we've raised money and gone to the walk, and while it's the year where we've raised the least amount of money, I can account for that because of the general state of the economy. But interestingly, our team of walkers has dwindled down from about twenty plus people when we first did this two years ago to just our family tomorrow and three friends. I don't think this is from any lack of support from my friends or family -- Lord knows that I would be dead if it weren't for the love and support I get from so many truly generous and wonderful people. What I'm thinking, though, is that there's a sort of compassion fatigue that happens when you're in it for the long haul.

The other day, one of the members of our small community fell and broke his leg badly at a soccer field. Almost immediately, an email chain was sent out requesting dinner sign-ups for the man's family that includes three young children. Now, this man is an amazing person who volunteers to do just about anything -- he is the soccer commissioner, the Cub Scout pack leader, and a seemingly tireless father to his three boys. His wife is equally as committed to their school, their church and all the extracurriculars that come with such a busy family. My point is that our community knows this and values this, so during a crisis, everyone steps up. Within literally minutes, every single dinner for the next month had been contributed and several people volunteered to make the kids' lunches during the next week or so. It was a beautiful testament to community, and I am proud and honored to be a part of it. Much the same happened almost exactly one year ago, when a young guy in our community was in a terrible skateboard accident and suffered a severe head injury. The community jumped to the family's aid and the outreach was just incredible to see.

But back to compassion fatigue. All of this was running through my head as I drove my son to his game. I have to hire a babysitter on Saturdays for Sophie so that my two boys can even do their sport activities. We really can't afford a babysitter all day on Saturdays but the alternative, to me, is even more expensive. I couldn't possibly drag Sophie in and out of the car all day and have her sit in the hot sun while Henry and Oliver played flag football, baseball, and soccer. I couldn't in good conscience watch her seize under that hot sun or even allow the boys to go to their games without a parent there to witness their boyhood, cheer them on and smile at their achievements. I couldn't imagine depriving them of these experiences, either. The Husband is a chef, and everyone knows that Saturday is probably one of the busiest days of the week, if the not THE busiest, so he really isn't available. So I hire a babysitter who takes care of Sophie at home all day while I run around willy-nilly from sporting event to sporting event. And the boys have a bit of normalcy and, well, so do I. I actually hate sports, but not when my boys play. I LOVE to sit in an athletic chair, under the sun, and watch my two glorious, healthy athletic boys revel in their lives. It's a freaking relief for which I am completely thankful.

And where, you might ask, does compassion fatigue fit in? Well, as I thought about this man with the injured leg and the boy with the head injury and the amazing response of our loving community to these accidents, I sort of, kind of wished and wondered why the same community didn't come out in full force and walk with us for Freedom from Epilepsy. For the tiniest second, and I mean tiny, I had the thought that my outspoken-ness is offensive and that even this blog forum might have offended people who ordinarily might support us. But then I thought that's just paranoid (not to mention narcissistic and all about me) . I began to articulate, in my thoughts, the idea that compassion fatigue is something that others might even have for us. You can't raise money for epilepsy research for over fourteen years and not eventually hit a wall, is what I thought.

Crisis becomes every day. Compassion gets tired.

I  wish sometimes for people to take Sophie for walks around the neighborhood or perhaps even a stint at an overnight with her (because she has seizures during the night every single night and one of us always sleeps with her). I wish these things only idly, though, and certainly with no complaint or resentment because I am secure in the knowledge that everyone knows our family and loves them deeply. What strikes me, though, and I'm certain it is the case for many families like ours who work day in and day out caring for a disabled child, is that when you're not in a technical crisis, you're basically left alone. No one could possibly help our family, day in or day out, and I don't expect anyone to, really. And I know, too, that at least from the outside, most people think we're doing just fine. Not a day goes by that someone doesn't say that they don't know how I do it or that you're so calm and chilled out. My husband is regularly called a saint, and the two of us laugh at how we know the real truth about each other and it's often not pretty.

I don't know what the answer is to this, really, other than I need to be more gentle with myself and with my husband and with my sons as we live this life. I understand compassion fatigue, the way I interpret it, in myself, in my family and even in my community.

I think, too, that I must work harder to raise awareness about seizure disorders and perhaps, instead of raising money for cures and research, work instead to help raise money for respite care, for recreation and inclusion opportunities, for care facilities that are beautiful and humane where children like mine have a place to go as their parents age or reach a point where they just can't do it anymore.

In the meantime, I thank my parents for helping me with money for childcare when my respite money dries up. I thank my husband who works so incredibly hard for our family and, when I'm practically choking on despair tells me that we are giving Sophie a happy life. I thank Mirtha for her Saturdays, away from her own children, caring for my daughter. I thank my friends who listen to me always. I thank those who have donated money year in and year out in support of our cause. I thank those who wanted to be at the walk tomorrow but who weren't able to be. I thank those who will be there, walking with us. And I thank my sons who despite this crazy life they lead, kick and catch balls with amazing beauty and look to me, watching them, with smiles on their faces.

And to those of you, like me, well, I love you. And you know why.

Friday, October 16, 2009

Bloom




Louise Kinross of BLOOM has posted an essay that I wrote a few years ago about a cathartic moment in my journey with my daughter (now, how many cliches is in this sentence?). Please hop over onto her site -- it's a wonderful one for parents, specifically for those with children with special needs. And let other people know about the site, too! The more resources, the better...

Thank you, Louise!

Josephine


my grandmother Josephine (standing) and her sister, Mendocino, Italy


Ancestors


my ancestors surround me
like walls of a canyon
quiet
stone hard
their ideas drift over me
like breezes at sunset

we gather sticks
and make settlements
what we do is only partly
our own
and partly continuation
down through the chromosomes

my son
my baby sleeps behind me
stirring in the night
for the touch
that lets him continue

he is arranging
in his small form the furniture
and windows of his home

it will be a lot like mine
it will be a lot like theirs


Harvey Ellis from Sleep not Sleep


**I realize that I'm supposed to get permission to reprint poetry, but I haven't. I hope that I am spreading its worth, though, by posting it on my humble blog. If it bothers you, please ask and I will remove.

Thursday, October 15, 2009

Thursday Shakespeare

Over at SpainDaily  I listened to the most sublime reading of Shakespeare's Sonnet 29, which led me to Rufus Wainwright and this version (the video is not the greatest, but that doesn't really matter...).

Wednesday, October 14, 2009

Many moons ago



and that would be harvest moons, because it's harvest moons that I remember most about Nashville, Tennessee, where I lived for over five years, I worked at a small restaurant on Music Row called The Slice of Life. It was very funky, owned by a Korean woman married to a Jewish professor, and we served mostly vegetarian food to whatever hipsters were already turning Nashville into a very cool place and, of course, music industry luminaries. When I started at the Slice, as we called it, I had just quit my job as an editor in the research department of a local brokerage firm. I hated that job with all my heart, the job at The Southern Firm, and when I started waitressing I knew that I'd eventually want to start cooking in the kitchen with Paul, the white uniformed chef who worked five days a week on furlough from the penitentiary where he was serving time for murdering his wife.

Yes, the first person who trained me in the food service industry was a felon. But that's another story -- perhaps for the food blog that I am woefully neglecting?

Anyway, during my years at the Slice I served food and collected tips from many music celebrities, and I won't go into that here either because who wants to drop names? But purely in the interest of this particular post, I'll share with you that Garrison Keillor ate at my table one night and when he left, he left me a $100 tip. Since the highest priced item at the Slice was probably around $12, and there were only four people or so at the table, and while I was an awfully cute girl in my mid-twenties and a kick-ass, organized waitress who NEVER made mistakes, this was a generous tip indeed.

So, I've always had a soft spot in my heart for Garrison Keillor and today I read yet another wonderful essay of his over at Salon. Please read it HERE. It's not like he needs it or anything, but I'm doing a little payback.

Love Is

The theme for this week's corner view is LOVE. Check out these other views of love all over the world. jane, ladybug-zen, ian, bonnie, esti, sophie, cele, modsquad,




LOVE IS:



These two

And these two

And we two

And these two

And these two


Carmen and Sophie


Mirtha and Sophie

Tuesday, October 13, 2009

A Help Wanted Ad






Looking for a scientist/humanitarian to find the reasons and cure for epilepsy, particularly pediatric cases. Applicant must know the brain inside and out and have witnessed the daily life of a child with uncontrolled epilepsy. Interpersonal skills a must as is a total disdain for insurance companies and dubious appreciation of pharmaceuticals. Assumption that pharmaceutical discoveries will be considered successful ONLY if side effects are minimal to nonexistent as defined by parents of child or child him or herself. Cure must be complete and total; 30% or 1/3 efficacy rate is not acceptable. Applicant must have ability to outwit the brain.


Sobering Statistics:


1. Epilepsy in America is as common as breast cancer and takes as many lives.
2. One in 10 people will suffer a seizure in their lifetimes.
3. The mortality rate for people with epilepsy is 2 to 3 times HIGHER than that of the general population.
4. The risk of sudden death for people with epilepsy is 24 times higher than that of the general population.
5. There are 200,000 new cases each year, and a total of more than 3 million Americans are affected by it.
6. This number is MORE than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease COMBINED.
7. Public and private funding for research lags far behind other neurological afflictions, at $35 per patient. Compare this with $129 for Alzheimer's and $280 for multiple sclerosis).

I don't have the time or inclination, here, to discuss why the above facts are true, why epilepsy has such a stigma and why most people are completely unaware that 1/3 of those with epilepsy have no control.

But I wanted to tell you that I recently gave a presentation with two other women from the Epilepsy Foundation of Greater Los Angeles to a group called Women in Film. We were in the running for a PSA (Public Service Announcement) that this fine group of women in film does every year for four organisations. They do the PSA for free. The director of the EFGLA gave a very short presentation on what the foundation does and what epilepsy is. She also went over the statistics I listed above. The other board member told the story of her now eighteen year old son who developed epilepsy after brain tumor surgery. I told Sophie's story and wove in the handicapped placard story that I posted on this blog (HERE) to demonstrate the general ignorance of how devastating this disease can be.

To make a somewhat long story short, Women and Film CHOSE US as one of the four organisations! They will be working with us over the next year to make a public service announcement (film, radio, ad, etc.), so stay tuned! Definitely a small step, but one that moves us forward nonetheless!

I also just read this op-ed piece by David Brooks which, while fascinating and certainly worthy of the op-ed page of the New York Times was the impetus for today's post. Because what I thought when I read this is WTF?  I think these three words often when I hear about incredible research being done, inventions being made, patents pending, Nobel prizes awarded, satellites orbiting, ipod advancements, missiles exploding on the moon, biological warfare, nuclear fusion or fission or whatever. And at risk of being like those people who go to art museums and say, "I could do that!" I wonder WTF? 

WTF?

Can't someone, somewhere, help figure out why my daughter's brain seizes and what to do about it? (and not just my daughter, I might add...)

Monday, October 12, 2009

Denise


The Three Graces - Raphael


I've had a hard time coming up with blog posts of late -- I don't know whether to tell you, daily, of struggles and recovery from struggles or whether to post favorite poems or music or even to just be silent. I've felt a fleeing of the muse, I guess, and perhaps a tiny bit of boredom. Generally, this blog writing is like exercise and my writing flexibility is greater when I'm blogging, less when I'm not. So I try to keep going.

Today, though, I'm going to post a link to a wonderful site called Literary Mama, and, in particular, to an essay written by a friend of mine, Denise Emanuel Clemen. Denise and I met in a writing workshop at UCLA many years ago. It was taught by another writer (whom I now call friend and mentor), Barbara Abercrombie, and was called Writing the Healing Story. I began this class in the fall before Sophie turned ten years old, and while I had been a very active writer prior to her birth, I had literally written nothing since her birth and diagnosis. During the decade that passed I had filed away encounters and thoughts about the medical world we had been thrust into with the mantra this will go in my book. I had built a book in my mind and it buttressed me, but it wasn't until that morning class with Barbara that I dismantled the book in my head and began to really write it.

Four years later, I've written most of that book but still struggle with its structure and with finishing it. Perhaps that's because IT is not finished and I'm hard put to impose a finish. The book is about Sophie and her seizure disorder, but it's also about the health system and what it means to be sick in our culture. It's about the difference between healing and curing and it's about what it's like to be subsumed by something other than oneself. It's about our family and the journey we've been on that separates us from others and binds us to others. It's a sad story and a hopeful one, I think, but there is no end to the story because there is no end to this.

I digress. I wanted to post Denise's beautiful essay, recently published at Literary Mama. Denise is an amazing writer and a dear friend. Her voice is clear and true, sometimes angry and often filled with wonder and love. She has written a book about giving a baby up for adoption when she was seventeen years old. It's an incredible book, a testament to her as a woman and writer. I hope that it's published soon. In the meantime, read THIS. 

Saturday, October 10, 2009

Dirty Dancing


Spartan Girl Dancing - 450 BC

Last night I went to a benefit for a division of a local children's hospital. The benefit was at a beach club, right on the ocean, and it was a casual affair. There was beer and wine to drink, and you stood in line for delicious sausages and french fries cooked on an open grill. The air was clean and southern California cold, and we sat under heat lamps at white picnic tables. A couple of my friends were there and many friends of friends, as well. At some point, I learned that the prestigious private girls' school in my neighborhood was having a dance, and my friends' children, both boys and girls were all going to be there. I found myself caught up in the conversation, listening and laughing to the stories about how wild it was to have children already going to dances. How do they dance, I wondered aloud. Do they slow dance like we used to? I'm pretty sure they dirty dance, one of my friends said. They stand in small circles, shoulder to shoulder and bump and grind around the center. Evidently, there are chaperones at the dance, but their job is to monitor the comings and goings, make sure that no one leaves, that no one is off in some corner making out or worse. And no girl wants her mother to be a chaperone. There doesn't seem to be much interference with the actual dancing, because that's just the way it is.

I found myself nodding and chatting and listening and laughing, almost as if I were somehow a part of the scene. At around 10:15, these women all whipped their cell phones out to check on their girls and make sure that babysitters and dads had picked them up or that they couldn't go out afterward. I made an idle comment about how different it was than when I was a girl when there were no cell phones, and we just had to be home at a certain time, how we were set free in a different way. I could have said that this was certainly a good thing for which to prepare myself; after all, Henry will be in middle school in a couple of years and just last week he went to his first Cotillion. But actually, I was having almost an out of body experience, doing all that nodding and laughing I'm just like you, I know what you're talking about. 

Because actually, I'm not. Just like them. I, too, have a daughter who is fourteen and technically in the eighth grade. She has long curly hair and beautiful eyes and skin. She has breasts and long, albeit too-thin legs and wears skinny jeans and tee-shirts that her younger brother says are "cool."  But she'll probably never be invited to nor go to a dance. She'll never be embarrassed to have me as a chaperone at a dance. And I'll never see her dance with someone or share with her those rites of passage. And when I look into her eyes I wonder whether she knows that, whether she yearns for anything in particular, whether she is bored or waiting  for her life to begin.

I don't feel like this often, but when I do it's as if a sledgehammer has caught me by surprise. Wow, I think. I thought I was done with this. 

Friday, October 9, 2009

A Flu Manifesto




It seems like everywhere I look or listen -- whether on Facebook or blogs, the newspaper, soccer game conversations, telephone calls to friends -- talk of H1N1, the vaccinations against it, Tamiflu is all the rage. A while back, in late August, our pediatrician sent out a letter to all of his patients with his opinions and guidance. This is what it said:


I have seen more children and adults with influenza-like illness: 104 degree fevers, muscle soreness, sore throat and negative tests for strep, than in any summer I can remember. I haven't used the "flu swab" to test anybody, but I'm sure that many if not most of these sick people had Swine Flu. They all felt miserable, and they are all feeling just fine now.

Preventing outbreaks of this "novel H1N1" influenza may be a mistake of huge proportions. Yes, sadly, there will be fatalities among the 6 billion citizens of the planet. Tens of millions of cases of any illness will lead to morbidity and mortality, but this is completely (tragically) unavoidable. The consequences of not acquiring immunity this time around, however, could be really terrible and far outweigh a mass prevention program.

Here's my rationale for not using Tamiflu:  If (if, if, if) this virus circles the globe as the rather innocent influenza it now appears to be, but mutates and returns as a very virulent form of influenza, it will be quite wonderful and life-saving to have formed antibodies against its 2009 version. These antibodies may be far from 100% protective, but they will help. This is incredibly important but being ignored in the interest of expediency. 

In 1918, it appears that influenza A (an H1N1, by the way) did this globe-trotting mutation and killed millions. The times and state of medical care are
not comparable, but a milder parallel occurrence is possible. Perhaps this happens every 100 years or so, perhaps every three million.

Whenever possible, we should form antibodies against viruses at the right stage of their existence and at the right stage of our lives (For example, chickenpox in childhood and EBV/mono in early childhood. There are many other examples.) Getting many viral illnesses confers lifetime immunity, and very few vaccines do.

Tamiflu is a very powerful drug with little proven efficacy against this bug, and with its major side effect being tummy upset. I'm not using it at all. Psychiatric side effects are also possible.

I also won't be giving the flu shot to the kids and parents in my practice unless there are extraordinary risk factors.  I anticipate giving none at all this year.  I doubt that there will be any really large problems with the vaccine, but I also doubt any really large benefits. As I said, I think that this year's version of this particular H1N1 is as "mild" as it will ever be and that getting sick with it this year will be good rather than bad.  The chances that a new "flu shot" will be overwhelmingly effective are small.  

I consider this, and most seasonal and novel influenza A vaccines, as "experimental" vaccines; they've only been tested on thousands of people for a period of weeks and then they'll be given to hundreds of millions of people. Not really the greatest science when we're in that much of a hurry. Yes, one can measure antibodies against a certain bacterium or virus in the blood and it may be associated with someone not getting sick, but there are very few illnesses common enough or enough ethics committees willing enough to do the right tests.  That is, give 1000 people the real vaccine and 1000 placebo shots, expose all of them to the disease and see who gets sick.  Seriously. I know it sounds terrible.

This is, obviously, a difficult public discussion because it touches on the concept of benefits and risks, again, of morbidity and mortality. Few public officials have the courage or inclination to present all facets of this difficult decision. I give vaccines to my patients every single day, but I always err on the side of caution. Implying that this is a dangerous new shot is not scientifically or statistically correct and represents hyperbole and even dishonesty on the part of the so-called "anti-vaccine" camp. 

It sure isn't "sexy" to suggest handwashing, good nutrition, hydration, extra sleep and so on. It's not conventional to suggest astragalus, echinacea, elderberry and vitamin C. Adequate vitamin D levels are crucial, too.

I just think that giving this new H1N1 vaccine is not the cautious nor best thing to do.




Probably because we're not a family that vaccinates (Sophie developed her seizures within ten days of her initial vaccinations at two months of age and we've suspected a genetic link) and because we have a whole lot of experience with "natural" medicine, as well as western, people ask me all the time what I think about the H1N1 vaccination and whether I'm going to get it or whether my children are going to get it.

The answer is NO. And it's not because I'm some sort of anti-vaccination freak, either. I fully understand the implications for public health and I don't want to get into some argument about vaccinations because, frankly, that whole sideshow makes me physically sick. And you probably know why.

The reason I'm  not vaccinating my children against the flu is because I trust that their very strong immune systems will fight the flu effectively. I, myself, took Tamiflu several years ago, and after the first day on it, suffered extreme agitation and near-hallucinatory side effects. When I told my doctor at the time, he advised me to take Tylenol PM (nothing like a drug for a drug advice!). I took the Tylenol PM because I felt so bad and proceeded to be up all night, suffering what I imagine was a paradoxical reaction to it.  I called my Chinese doctor, then, and she ordered me to stop taking the Tamiflu. She then made a house call, treated me with acupuncture and herbs and within a couple of days I was on my feet.

Here's the thing. Sophie has uncontrolled seizures but is otherwise (knock on wood) very healthy. Since we began seeing an osteopath and homeopath many, many years ago, she has never been on an antibiotic. She gets colds and fevers every now and then; we treat them naturally and they go away. Both Henry and Oliver have been seen by an osteopath since they were one week old. They have never been vaccinated because we just couldn't take the chance that there would be a negative reaction like their sister's (when people ask me whether this frightened me, I say, Yes. But the alternative was more frightening. Trust me on that one). Both boys have had the normal colds and fevers of childhood. They've even had ear infections, although the number of them was very small because osteopaths can really treat them. Both boys have NEVER BEEN ON AN ANTIBIOTIC in their eight and eleven years of life. I do believe that the supports we've chosen to give them regarding their natural ability to heal, combined with some good genes, is the reason. I'm very convinced of that. (KNOCK ON WOOD)

Here's what we're doing to support ourselves and our immune systems during this flu season. And while I know that I can't control what happens, ultimately, I make these decisions in a very informed way. In other words, I'll have no regrets.

Support for the Body During Flu Season


3/4 tsp. colostrum powder
5 sprays Immulox
1000 mg Vitamin C
1000 mg Vitamin D (adults take 2000 mg)
washing hands 
rest
good nutrition
exercise


Tuesday, October 6, 2009

Keeping Me on My Toes and a Tale


The Red Kerchief -- Claude Monet

I spoke with The Homeopath this evening and was happy to report that the adjustments we'd made to Sophie's remedy last week seemed to be working. Sophie has been alert and happy for several days and hasn't had a big seizure in over a week. Even the morning bouts are smaller and fewer. This morning she had none.

BUT

About ten minutes ago, when I was talking to The Husband in the living room, we heard the soft groan and rushed into her room to find her seizing. Sigh. I've written before about what I believe is my southern Italian inheritance -- a strong propensity for superstition and the power of the Jinx. When we got Sophie settled and she appeared to be asleep again, I left her room and went to my own. In about ten minutes or so,


I heard a strange clatter, so I leaped up from the computer


(to see what was the matter) and ran the five steps down the hall to her room.

When what to my wondering eyes should appear


nothing.

I couldn't see where Sophie was at first in the darkness -- usually she's on the floor or in the corner by the pillows and toys. And while all of this was happening in a matter of seconds, I actually had the thought where is she? Is she gone? And then, I saw her standing on her bed, her back against the pulled down blinds (the source of the clatter), her eyes and hair wild in the darkness. I gently eased her very stiff body down and put her in her sleeping position, wrapping her tight in the blankets. Something is messed up and rewired during night seizures, a wrestling from sleep and concomitant confusion.

What is she thinking up there on the bed, back against the proverbial wall?

I'm just thankful that she hasn't walked off or crashed through it. I'm thankful for a lot of things. Mostly for those toes of mine.

and to all a good night.

Monday, October 5, 2009

I've finally posted

something new over at the other blog. Click here if you're interested. If not, have a wonderful evening.

Books, Books, Books


Maggie May at Flux Capacitor did a post recently about books at home. She's my inspiration, here.




I like to say that the only constant in my life is reading. So I thought I'd roam around my house and show you where I keep them all. I live in a very small house currently over-run with books. The only books I get rid of are the ones that I despise (very few) or those infernal Scholastic paperbacks that my kids pressure me into buying. My bedside table is above. And yes, that is a Kindle. I have nothing but raised eyebrows for those who claim it's going to destroy publishing.





These are the books piled on an antique tea chest on the floor next to the bed. They are stacked two deep and up.








The dining room has books.





Books on the floor behind the chair --





Books in the living room



I'm looking rather contemplative in my late twenties, looking down on more books.





Books piled next to the fireplace





Another pile






Hallway bookshelf




The boys' room has busting at the seams bookshelves. I just can't get rid of them. I can't.




My favorite two shelves of poetry books -- and my 1982 NCAA Basketball Championship bottle of Coca-Cola (go Heels!).


I wish that I had a library and all my books would be in there. I just spent an inordinate amount of time googling home library images to post here, but there wasn't anything enticing. I basically want three walls of books, ceiling to floor with a ladder for the highest shelves. A dark red patterned Oriental rug covers the floor and there are two or three large reading chairs, one of which (mine) is placed before the bay windows that either look out on green trees or the ocean. I can't decide. The light, though, is warm and it's NOT cold outside.


Sunday, October 4, 2009

Sunday Ska

My old friend Hugh (of impeccable musical taste) turned me on to this video of Bob Marley and the Wailers and the original ska version of "One Love."

Don't you just feel like getting up to move?


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