Thursday, September 20, 2018

In a Van Gogh Painting

Sunflower Farm, Half Moon Bay


One Day

One day after another —
Perfect
They all fit.

Robert Creeley
via Pome by Matthew Ogle






Tuesday, September 18, 2018

You can only lose what you cling to

La Jolla, CA 1996


The thought crossed my mind the other day that Sophie's epilepsy is a beast, a monster, and she is not her epilepsy, not a beast or a monster and I'm always fighting it and not her. I cannot can't can not accept it push against and never through it over and over and over year after year after year. This is contrary to Buddhist thought. The harder you push against the more you resist the strength of your hate is the measure of the intractability against which you push resist and hate. I just can't do it.




What do the religious say? Something from Ephesians, I think. Something about now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us.  Of course, there's that power which is a Him, capital H, I wager, or God.


We are all asked to do more than we can do.

We are all given way more than we can handle, saith I.

Monday, September 17, 2018

It's a Health Insurance Miracle!



When my podcast partner, Jason Lehmbeck, heard about what happened last week with The Blue Shield of California first denying and then mysteriously covering Sophie's infusions of IVIG, he said, "It's an insurance miracle!" and somehow that one remark not only sent me into a gale of giggles but has sustained me ever since. That's the beauty of our community and of my partner -- he gets me, I get him and we get all of ya'll.

We recorded a catch-up podcast last week and hope that if you haven't yet checked out Who Lives Like This?! you will today. Jason and I didn't have a guest on but rather caught each other and our listeners up on what's been going down in our lives. We talked about our kids and highlighted The Siblings. We also hashed out which episodes had most affected us or that stuck out for us personally. For me it was the discussion with Josh Fyman, a father of a severely disabled young girl and his family's decision to place her in a residential setting instead of caring for her at home. This is a topic that has always made me squirm in discomfort. I have strong opinions, as you know, and I thought I felt pretty unequivocally about this subject. What happened, over the course of the podcast and then for weeks afterward, was a kind of mind and heart opening. I don't know how to explain it in any other way, but I do know that Josh and Jason and I talked about what seems like an impossible thing to talk about, and my heart and my mind were opened. That's all I'll say about that, but I encourage you to listen to the podcast.



If you're so inclined, please consider supporting our podcast through the Patreon link at the top of the webpage. We are building a community and need the support! And if YOU'd like to be a guest or hear about a certain topic or from a certain person, please let us know! You can leave a comment here or on the Facebook page or blog.

Tuesday, September 11, 2018

9/11



Sophie is taking the IVIG infusions well on the third day. She has one more treatment tomorrow and is then off for a month. Nurse H is a lovely person. I have learned so much about her life as a Korean immigrant and much about her now-grown children and her grand-children. She has shared some very personal things with me, and that is fine. She sits curled up on Sophie's bed, not much bigger than Sophie but holding so much quiet strength and faith and purpose. I found myself sitting quietly with Sophie, my anxiety lessened for the first time in many weeks.

It's still 9/11 and I'm still remembering the restaurant workers my husband knew who threw themselves out of the burning building and fell 102 stories down. I'm remembering all the brave firemen and women, those who perished while trying to save others. I'm remembering the 2976 innocent Americans who died that day, and the 48,644* Afghanis and the 1,690,903* Iraqis and the 35,000* Pakistanis who have also died as payment for crimes they did not commit. A life is a life is a life.


Rosh Hoshanah

i bear witness to no thing
more human than hate

i bear witness to no thing
more human than love

apples and honey
apples and honey

what is not lost
is paradise

Lucille Clifton, from September Suite, 2001














*Numbers dead are estimates

Monday, September 10, 2018

The Limitations of the Tiny Little Mother Mind™ and #SeezJahBoy



It's a big world.

That's what I tell myself when I read about or hear about things that are otherwise incomprehensible. It's a big world, I thought when I read about plushies in a Vanity Fair magazine in the last millennium. It's a big world, I thought when I actually ran into a plushy convention at a resort hotel in Orlando where I was attending a children's healthcare convention. It's a big world, I thought, when people started talking about reality shows and women being famous for being famous,  It's a big world, I thought when Arnold Schwarzenegger was governor of California, and it's a big world, I thought, when certain celebrities insured their famous asses, literally. It's a big world, I think, when people get all geared up for the season of bashing brains into dementia, otherwise known as football. It's a big world, I thought when people -- some of whom I actually know and love -- voted for and continued to support Donald Trump, even after he imitated and mocked a disabled man and bragged about his prowess grabbing women's pussies. That one was a stretch, to tell you the truth.

A lot of people are excited about last night's Miss America pageant -- how Miss Michigan, a blonde Barbie doll, made a comment about the bad water in her home state and appears "woke" in the newest sense of the word, and Miss New York, a black Barbie doll, won the prize. It's a big world, I'm thinking, wondering how in 2018 we still have beauty pageants (although I've read they're no longer "beauty" pageants, and there's no more bathing suit competition). What's that expression? Whatever floats your boat?

Anywho.*

My tiny little mother mind™ was seriously taxed today when I learned that Netflix released some movie called The After Party that's getting all the raves. Evidently, the main character has a seizure (after smoking marijuana) while rapping on stage, projectile vomits and falls to the ground writhing. The moment is captured on video, it goes viral, he's called "Seizure Boy," and soon everyone is doing the #SeezJahBoy dance.

This is comedy.

Sigh.

Where do we start? The young man who plays the character is an up and coming rapper and has a bazillion followers on Instagram. He sees himself, ironically, as a bullying advocate. People with epilepsy are commonly bullied. This is a fact. I know countless people whose children have been bullied, have been mocked and derided when they've had a seizure in school. The stigma of epilepsy is still so strong that adults with epilepsy often don't tell their employers that they have it. Teenagers with epilepsy are often at higher risk for anxiety and depression, and much of that can be attributed to our culture's ignorance of the disease.

So, yeah, back to #SeezJahBoy. Despite condemnation from different news sources and epilepsy and seizure awareness foundations, the hashtag is viral at this point. I have heard from good friends in the epilepsy community that when people go in to these conversations on Twitter and Facebook, in an attempt to counter the ignorance, they are being called trolls or "racists" (because the movie is predominantly by black people). How many people did this show have to go through to get put on the air? Are we overly sensitive as parents of children with epilepsy or individuals with epilepsy? Do I think the show should be pulled? To tell you the truth, this sort of thing so taxes my tiny little mother mind that I think nothing at all. I don't have the energy to think about some stupid movie that makes a mockery of people with epilepsy. I don't give a fuck about the writers, the editors, the sound people, the young actors and wannabes that made this movie. There is no big world that holds such shit. The big world shrinks in to a dot, and that dot is a portal to my house where my epileptic daughter sits in her wheelchair, the little vein in her forearm penetrated by a needle that brings an infusion of antibodies to her brain, so many antibodies that they literally flood her brain and dilute out the bad antibodies that have been wreaking havoc, causing her to seize, near constantly, in her sleep and subsequently destroying her ability to walk and eat and move in the world.

Dance on, #SeezJahBoy people.

The world is ugly,
And the people are sad.

Wallace Stevens, Gubbinal


















*New Readers should know that I hate this expression and only use it facetiously.

Sunday, September 9, 2018

Infused with Gratitude and Antibodies



I am so grateful in this moment to hear the steady tick of the intravenous immunoglobulin being infused into Sophie's body. I'm grateful for the gentle ministrations of the home health nurse who has already spilled her life story to me -- a life story very different than mine but I'm open to -- well -- everything. She will be here every day for the next four days and then monthly for the next six months.

I am so grateful for all the support we've gotten in the emails, texts and comments here on the blog and on Facebook over the last couple of weeks in particular. I'm particularly grateful for Christy H, a friend here in Los Angeles whom I never see but who also has a child with special healthcare needs. I got a delivery on Friday from a courier service, opened the large box and found a beautiful note from her and her husband and a bottle of very fancy champagne and a bottle of beautiful rose. This just brought me to tears, to tell you the truth. Here it is next to the hard-won medication that is being infused into Sophie's veins with the hope and expectation that it will help her to recover from the terrible syndrome that has caused Sophie so much suffering. How many folks do you know who have such riches side-by-side in their fridges?




I hope your Sunday has been a good one. May the week ahead be filled with champagne and necessary blood products.

Friday, September 7, 2018

Sophie B. Vs The Great American Healthcare System, Part 1,000,000: ROUND 2



Article 1


Please See Round One Timeline HERE Before Proceeding and for Explication of Article 1, above. Note that I can get you a copy of the Explanation of Benefits, regarding this decision, AT NO COST, thanks to the Insurance Company, so email me if you'd like one.





Big Girl Panties ON?
Loins Girded?
Ready?

ROUND TWO TIMELINE:


September 4-6, 2018

Mother/Conservator makes repeated calls to Neurologist and Neurology Office to check on progress of Plaintiff’s appeal to get necessary IVIG treatment for ESES. Neurologist reports that Blue Shield of CA does not respond to repeated attempts to call. Plaintiff appears further weakened and distressed, drooling, difficulty swallowing and drinking. Mother/Conservator expresses distress and frustration, and Neurologist responds appropriately, assuring her that “we’re going to get this done.”

September 7, 2018
10:30 am
Mother/Conservator makes morning call to Neurologist for update on Plaintiff’s appeal to get treatment for ESES. Note that TWO WEEKS have passed since diagnosis was confirmed and order for treatment was made. Neurologist states that if his efforts to appeal to Blue Cross of CA are fruitless, he will admit Plaintiff via emergent care for hospital administration of infusions. (Mother/Conservator states that her own condition is extremely stressed out. She actually posted the following picture (Article 2) on her social media page but assures all parties involved that her rage as depicted in picture with weapon in hand is metaphorical.


Article 2


10:43 am
In the middle of Neurologist's statement that he will admit Plaintiff to emergent care for hospital administration of medication if he is unable to get through to Blue Cross of CA by end of day, Mother/Conservator receives a text message. Because of her finger dexterity (considered extremely high as measured by an expensive personality and skills test administered in the last century by a famous company) and multi-tasking skills, coupled with afore-mentioned extreme stress (which renders Mother/Conservator more like larger mammalian creatures on guard and extremely alert faced with threats to offspring -- think bear, moose, etc.), Mother/Conservator switches over to text messages and reads this (Article 3):

Article 3 with professional names redacted with quasi-religious symbols that were inserted by Mother/Conservator, despite her lack of religious faith








Mother/Conservator shrieks news of approval to Neurologist who is speechless, given that he has been unsuccessful in reaching Insurance Company. Mother/Conservator wonders aloud what the hell has happened here? Her tiny little mother mind™ is busy, busy wondering whether this weird and random event is somehow related to her blog post from the previous day and the many thousands of "hits" it has received, but her body, always many, many steps behind the tiny little mother mind™, feels a rush of adrenaline and she tells The Neurologist that she will hang up and call the Nursing Agency to make the appointments for Plaintiff to receive treatments. Because her body is in a riot, and her tiny little mother mind™ is busy, busy, Mother/Conservator does not remember how she hangs up from Neurologist but believes he asked her to let me know when Plaintiff gets her schedule of infusions.

10:45 am

Mother/Conservator calls Nurse at Agency who has texted her the GOOD NEWS (the lettering of which the tiny little mother mind™believes to be rather Trumpian and is amused by this and then quickly horrified because part of the extreme stress is due to the constant worry about the healthcare system and the steady erosion of what little benefits the Affordable Care Act has conferred upon Plaintiff and family and hundreds of families that Mother/Conservator knows, benefits which are under attack even as this is typed), and Nurse at Agency tells Mother/Conservator that just that morning, the Agency received a letter from Blue Shield of California with a reversal of former denial. See Article 4.

Article 4


Both Mother/Conservator and Nurse at Agency laugh incredulously at this seemingly miraculous turn of events and then move forward and set up Plaintiff's schedule for infusions immediately.






ROUND TWO:

Sophie B vs. The Great American Healthcare System

WINNER: Sophie B.
LOSER: The Great American Healthcare System and Mother/Conservator's Relative Sanity (See Article 5)


Article 5

Tuesday, September 4, 2018

Sophie B. vs The Great American Healthcare System, Part 1,000,000, ROUND 1


July 4, 2018
Ambulatory EEG

Let's make this a series.

ROUND ONE TIMELINE:


July 3, 2018

Sophie B. (Plaintiff) was "hooked up" to an ambulatory EEG in Neurologist's office.  Plaintiff went home with hook-up and video camera for overnight observation of brainwave activity.

July 4, 2018

Mother/Conservator Elizabeth A. removed electrodes from Plaintiff's head and returned "black box" to Neurologist office. Because it was a holiday, Mother/Conservator had no expectation for quick reading. Mother/Conservator reports that after two decades, she has no expectations at all.

August 23, 2018, 3:00 pm

Mother/Conservator picks up Plaintiff from adult day program and notes Plaintiff's difficulty breathing. Day program assistant reports Plaintiff had difficulty eating lunch and swallowing. Plaintiff's lips are slightly dusky in color. During entire ride home in Los Angeles traffic, Mother/Conservator pounds back of Plaintiff and encourages coughing and swallowing. Mother/Conservator contemplates bringing Plaintiff to emergency room but is persuaded by own inner compass and more than two decades of experience that no good will come of entering hospital emergency room. Instead, Mother/Conservator makes another of what has been multiple calls to Neurologist office for nearly two months regarding July 3, 2018 ambulatory EEG reading. Mother/Conservator has heated discussion with nurse at Neurologist's office demanding that she should get the EEG reading, that Plaintiff is suffering, that something is wrong. Neurologist gets on phone, admits that July got away from us and assures Plaintiff (whose tiny little mother mind™ wonders if August got away from them, too?) that EEG will be read that afternoon and that he will call Mother/Conservator that night. See Appendix A.

August 23, 2018 4:00 pm

Mother/Conservator arrives home with Plaintiff and proceeds to remedy problem of excess mucous and choking. She is helped by Caregiver and stabilizeS Plaintiff who falls asleep.

August 23, 2018 8:00 pm

Mother/Conservator receives phone call from Neurologist who expresses shock that Mother/Conservator was "right," that Plaintiff is indeed having recurrence of ESES, a rare epileptic syndrome that Mother/Conservator has suspected Plaintiff of having but has been repeatedly told by several Neurologists over two years that its recurrence is unlikely. Mother/Conservator goes into full dissociative mode while on telephone and intelligently discusses former incidences of ESES, the treatments for said incidences and otherwise directs Neurologist to treatment modality that was successful previously. See Appendix B and Appendix C.

Dissociative mode gives way to extreme distress and mental suffering of Mother/Conservator, attributed to decades of experience dealing with this shit, grief over Plaintiff's ongoing struggle and suffering and anticipation of forthcoming battle to get treatment for Plaintiff. Given experience, strength, history of mindfulness meditation and love and support from immediate family members, Mother/Conservator puts on big girl underwear, girds her loins and otherwise readies herself for the fight.

August 31, 2018

After multiple calls with Neurologist office to "check" on status of IVIG treatment (see Appendices A and B for clarification), Mother/Conservator is directed to Home Health Agency nurse who says that "this is not approved by the FDA as a treatment for epilepsy, so insurance will deny it." Mother/Conservator corrects Home Health Agency Nurse that the treatment is actually FDA-approved but is considered "off-label" for ESES treatment and that she is aware of possible denial. Mother/Conservator informs Nurse that treatment has "worked" for Plaintiff twice before and was partially covered by Insurance Company after some "wrangling." Nurse agrees to "write up" notes as dictated by Mother/Conservator about past history of treatment with IVIG. Nurse tells Mother/Conservator that she will "get back" to her after the holiday.

September 3, 2018 10:00 AM

Home Health Agency Nurse calls Mother/Conservator on telephone while mother is riding in car after dropping Plaintiff off at adult day program. Health Agency Nurse asks whether you might want to be more comfortable at home receiving information. Mother/Conservator tells Home Health Agency Nurse that she is fine using the Bluetooth option on her telephone in the car. Mother/Conservator wonders in her tiny little mother mind™ whether the Health Agency Nurse thinks she might have an accident when she "receives the news." Mother/Conservator finds this humorous and assures Home Health Agency Nurse that she can take it. Health Agency Nurse says that Insurance Company has declined the doctor's prescribed IVIG treatment for Plaintiff for what Mother/Conservator hears as blah, blah, blah, blah, blah. Health Agency Nurse states that an appeal will begin with Neurologist perhaps joining the appeal and personally speaking to Insurance Company chief doctor who has made this decision. Mother/Conservator listens carefully and says indeed. She can't recall whether she said, of course! or is there anything I can do to expedite this process so that my daughter can get treated for her ESES? Her tiny little mother mind™ wonders how many people are employed for this tomfoolery and thinks of some suitable imprecations, directed today toward Supreme Court Justice nominee Kavanaugh who, if confirmed, will most surely make Plaintiff's life and millions of others more miserable, particularly in regards to healthcare. Mother/Conservator doesn't share the inner workings of her tiny little mother mind™but rather reminds Home Health Agency Nurse of Plaintiff's secondary Medi-Cal insurance. Home Health Agency Nurse reports that the Medi-Cal office worker in Home Health Agency will begin to look into Medi-Cal coverage, now that Insurance Company has issued a DENIAL. Mother/Conservator finishes conversation pleasantly by remarking how frustrating this all is for everyone, even though inside she is dying, her tiny little mother mind™ shrunken, her girded loins gaping, her big girl underpants riven.

ROUND ONE:

Sophie B vs. The Great American Healthcare System

WINNER: The Great American Healthcare System
LOSER:    Sophie B.














Appendix A:

Mother/Conservator reports that Neurologist is wonderful in every respect, so while she is frustrated and upset over the delay in the reporting of the EEG results, after more than two decades of dealing with this shit, she is cognizant of Neurologist's time constraints and being stretched too thin. She assures Court that she'd rather deal with a Nice Neurologist Who Works With Her than an Asshole Neurologist, the latter being the norm and with whom she has had plenty of experience. Mother/Conservator also assures the Court that she is well aware of The System and its shortcomings, that she has worked most of her adult life in it and to improve it, that her efforts haven't amounted to much of anything but that she has virtually kept her daughter alive and sometimes thriving in spite of it.

Appendix B:

2005: Parents of Plaintiff (not yet Conservators because Plaintiff is a minor) are given "three choices" of treatment when Plaintiff is diagnosed with rare syndrome ESES (diagnosed only after Mother insists on hospitalization of said Plaintiff, given drastic decline in Plaintiff's physical abilities with no urgency to attend to this decline by Neurologist at time). Choices will be designated "Door Number One, Door Number Two, and Door Number Three" in keeping with Mother's dark, albeit sustaining, sense of humor.

Door Number One: High dosage steroids
Door Number Two: Valium
Door Number Three: Intravenous immunoglobulin (IvIG)

Mother chooses "Door Number Three" and treatment commences in hospital. After some "wrangling," private insurance company agrees to partially pay for ongoing treatments over the next six months in Plaintiff's home. "Wrangling" should be noted as "understatement" as Mother is left depleted and experiences considerable signs of post-traumatic stress syndrome, triggered by repeated "wrangling" in previous decade.

"Door Number Three" treatment of IvIg restores Plaintiff's brainwave activity to previous "normal" dysfunction and Plaintiff recovers.


Appendix C:

2011: Plaintiff has occurrence of ESES and is prescribed "Door Number Three" again, given its success in treating previous incident of ESES. Insurance company denies treatment but is eventually warned down by repeated calls from Mother, one of which includes a threat to hospitalize Plaintiff so that treatment can be initiated in hospital, requiring Insurance Company to pay. Insurance company agrees to pay for treatment, treatment is administered and Plaintiff recovers.




Saturday, September 1, 2018

Saturday Afternoon Three-Line Movie Review



Crazy Rich Asians

I don't get it. Call me a killjoy, but while I understand how important this movie is with its all-Asian cast, and even though the actors are nearly all charming, the male lead, Henry Golding, is particularly sexy, and the presence of the great Michelle Yeoh works to partly redeem the tiresome superficiality, what is there to say but honestly? I don't get it.














More Three-Line Movie Reviews

BlacKkKlansman
Far From the Tree
Sorry to Bother You
RBG
Won't You Be My Neighbor?
Learning to Drive
Love and Mercy
Not a Three Line Movie Review
While We're Young
Ida

Force Majeur 
Gone Girl
Saint Vincent

Get on Up
Begin Again
Chef
The Immigrant

Cesar Chavez

The Grand Budapest Hotel
Gloria

Labor Day 
Philomena

Thursday, August 30, 2018

Art and Chaos


Somewhere over the western continental United States
2018

And we are put on earth a little space,

That we may learn to bear the beams of love, 

William Blake

When I meditate and lose my breath and go to thoughts they are like tendrils in some dark soup, like fish swimming by, my hook vain. I make them clouds to float, to find my breath again. My thoughts, my brain. I flew back to Los Angeles from Spokane. I looked out the window to see what appeared to be an ordered universe -- neat squares, rectangles and the occasional parallelogram colored in rich browns and greens with wispy clouds floating above. It might have been a brain, thoughts packed tight. In service to breath, become clouds. And then right there, a branch cutting through, tendrils, neurons, synapses, whatever. Threaded through and broken. It's always about the brain, isn't it? Sophie's brain and mine. The word riven. The word wisp. 




Have you been listening to our podcast, dear Reader? This week's episode, Art and Chaos is with the brilliant artist Mimi Feldman. She is the mother of a young man who has schizophrenia. I think it is one of the most interesting conversations that I've had in my life. I feel humbled by her experiences and enriched by her story. I believe fervently that people's voices -- the telling of story -- connects us to one another.

Read about and listen to Mimi's story here.  I promise you will leave enriched beyond your imaginings.


If you have been listening to Who Lives Like This?!, what do you think? My partner Jason and I are having so much fun doing this, but our intention is to also build a real community. We need your help. We're not making money, but we'd like to continue to build the podcast and the community and improve the quality and -- well -- continue doing it. If you're so inclined, please consider supporting us through Patreon. You can pledge as little as $1 a month!

Here's the link to Patreon.







Henry and Oliver took me out to dinner for my birthday -- Henry on the last night in Spokane where I left him to begin his second year at Gonzaga, and Oliver here in Los Angeles, last night.

I know ya'll like my sons almost as much as I do, so here are a couple of pics:







Sunday, August 26, 2018

I've run away and found my dream house


Who knew that it would be in Spokane, Washington?



My new home is named Gilda, which happens to be my beautiful, now-deceased aunt's name. She gave me a copy of The Hobbit when I was seven years old and made my first holy communion, which I promptly read and -- well -- you know the rest of my history of reading. I tell you this because I have always loved the idea of hobbit residences, small cosy cottages, and this is exactly my dream house.

In all honesty, I am up in Spokane helping to move Henry into his new dorm room. I didn't think he wanted me to come up with him this year, but when I asked him what day he needed a plane ticket and he said, Aren't you coming with me? and I said, Oh, do you want me to come with you? and he said, Yes! I want you to help me and also meet my roommate! and I said, Well, I guess. Ha ha ha ha ha. Do you want to?

So here we are. Unlike Dream House Gilda, Henry's new dorm room is named The Ugliest Dorm Room in the Disunited States of America.


Notice the blue PLASTIC curtains. I won't share the picture of the communal bathroom out in the hallway. I snuck inside to use it and was barely able to sit down on the toilet without my knees hitting the door. I was literally about one inch from reading the Potty Talk Newspaper that was taped on the door, educating me about social justice issues. Today we will be shaping up the ship, visiting Target. I'll post an "after" shot, but in the meantime, know that the two guys living there will lend it a degree of beauty that it might never have seen.


Fun fact: Henry's roommate has several siblings with special needs and is, according to Henry, the nicest person he's ever met. 

That's either completely wild and random or, there are no accidents, as my friend Carrie says.

Friday, August 24, 2018

Everything Connects Us to Everything Else



so said Leonardo da Vinci, and he wasn’t kidding.

The Neurologist called last night, after I’d posted (scroll down for yesterday’s post) and confirmed what I’d suspected, that Sophie is having another occurrence of ESES. My instincts were correct, I was right, Sophie’s “decline” is due to that and she will be treated with Intravenous Immunoglobulin — infusions — and hopefully it will be resolved. The Neurologist was sorry, and I am not angry with him at this point. Yes, he should have read the report two months ago, so Sophie could get treated. All of it, every single bit of it, is emblematic of — well —  everything in our world from diagnosis to medical education to our notions of what it means to be human to the commodification of healthcare to inequality to current politics to the differences in the notions of curing and healing to perspective and privilege and grief and grace. As for anger, I  have little space in my heart and brain for that today. Maybe later. Maybe in my next life when I come back as a stoned woman in an azure bikini and surf all day long and love the Bird Photographer and read poetry all night. So, maybe never. The Neurologist is incredibly supportive of our use of cannabis, and that is everything. I’m not in the mood to tell you about ESES today — if you’re interested, you can look it up on the internets. There’s very little known or understood about it, so you won’t be overwhelmed with information. You might wonder why cannabis doesn’t protect her from this bizarre epileptiform activity, and so do I. I do believe, with The Neurologist and Dr.Goldstein, that Sophie is having the least amount of actual clinical seizures in her life. During her last two bouts with ESES, she was having up to 7 giant tonic clonic seizures a day and hundreds of myoclonic ones.

I freaked out last night, had an hour or so of the past 24 years collected in my body brought to the surface, and it was Henry my son of twenty years who comforted me. Rather, we comforted one another. I’m so sorry, I told him. I’m so sorry for all of this. Henry, lying beside me, said, it’s okay, Mom! It’s made us who we are. Which is so good.

Thursday, August 23, 2018

How We Do It, Part I've Lost Count





I find myself babbling cheerfully to the barista at Ralph's about sugar addiction. We talk about white peach and green versus pineapple and black, and she says the pineapple is popular so I pick that. The more you eat, the more you crave," she says and I agree and she puts only one pump of sweetener in mine instead of the six that is called for in the recipe. Behind my sunglasses are tearburned eyes. I've just had a harrowing ride home in the car with Sophie. I had picked her up from the day program in a bit of a state. I contemplated driving straight to the emergency room of any hospital to admit her for another weird episode of Unable to Swallow Well and Therefore Laboring a Bit for Breathing and admit me for despair. Instead, I continued to drive home in some of the worst traffic The City of Angels has to offer, rubbing her back, wiping her drool and speaking sharply to her to both Cough! and Come ON! and then called the neurologist's office to yell at the receptionist about The Fact That I Have Still Not Received The EEG Report Which Was Done On July 4th. I didn't really yell, but I got upset, and she said to hold on and I'll speak with my supervisor, and then The Neurologist got on the line and in his gentle way apologized and said that he'd review the report and get back to me tonight. I've learned by now, in this the 24th year of caregiving that it Pays To Be An Assertive Unreasonable Bitch and you can always throw in a I know it's not your fault, but I'm tired of this, and I feel like no one cares and I am doing all the caring and the work, and I'm losing my mind. That's what I said to the receptionist who then left for her "supervisor," and lo and behold, The Neurologist, and that's what I said to him, too.

So.

When I drove up the driveway to my house, I jumped out of the car and ran around to the passenger side and dragged Sophie out and carried her to the front door and considered screaming for help but instead pounded on the door. Saint Mirtha opened it and helped me carry Sophie back to her room where, for the next half hour, we coaxed her into coughing and relaxing, and I don't know what else. The suction machine was involved but it's psychological, like everything else, I'm afraid. You're doing something! You're making an effort! You may wonder why I didn't let The Professionals take care of this, but you might also dig not so deep (just a few shovels) if you know me and very deep (all the way to China) if you don't, to figure out why.

Meanwhile, Sophie fell asleep for a bit, quite peacefully.

I'm going to go in my room and cry, I said to Saint Mirtha, and she said, Elizabeth. I lay on my white bed and wept through the eyelet of my white blouse and then I got up and walked to Ralph's where, like I said, I noticed how inane my chatter is when I am most in despair and where, I've also noticed, the eyes of men who work unpacking crates of beautiful vegetables follow me, right through my dark glasses like they know and love sorrow, a sad-eyed woman. I bought thick-cut bacon, tomatoes and tortillas for BLT tacos and walked home.

Sophie is awake and has eaten dinner like normal, and I wish I was (or is it were?) an angel and I'd fly back somewhere, anywhere, but here.

Tuesday, August 21, 2018

PSA for These Difficult Times

Letting my snaggle tooth hang out


You're exactly where you're supposed to be this moment. I tend to project all my fear out into the future, but you know what? It's my present that's terrifying at times, and I have to tell myself that I'm exactly where I'm supposed to be this moment, over and over and over. Sometimes cliches are necessary.

Here's the PSA part of this post:

Do you listen to The Daily? It's a daily podcast that digs deep into a pertinent issue for twenty minutes, five days a week. The New York Times does it, so I suppose some of you out there reading will say it's fake news or liberal biased media or whatever lazy cliches are being thrown about. I say lazy because we're all subject to lazy, particularly intellectual laziness, and these times call for us to gird our loins and pay attention and read quality journalism and listen to careful, investigative work. I think The Daily does important reporting, and from what I've listened to for many months, it appears to cover sides of an issue when that's pertinent but also THE FACTS as they appear to our eyes and ears.

Truth is always truth, contrary to what you might have heard out of the Powers That Be's very own mouths.

Today's podcast was Part One of a two-part series called Divided: How Family Separations Started, 
and it'll blow your mind and break your heart.

Recently, I wrote a post detailing my happiness at Sophie finally starting her new adult day program. One of my Anonymous commenters wrote this:

What, you are happy with a great program for Sophie. That is wonderful. But what about all the children separated from their parents at the border?

I replied:

Anonymous, what do you mean? Have I forgotten that our government kidnapped thousands of children and put them in internment camps. Never. Doing what I can — do you need info or resources on how you can help them?

I suspect that this is the same Anonymous who spent a lot of time on an earlier post of mine defending the separation policy, so I'm hoping that she listens to the podcast. I wonder, too, whether her feelings about the great tragedy on our borders have evolved at all. The reason why I'm wondering is because I think it's going to take as many people as possible to exact justice. Yesterday, the POSPOTUS himself blessed and spoke warmly to those who work for ICE and for their actions at the border. 
So what can we do about the clusterfuck beyond educating ourselves? The obvious solutions are to pressure your representatives to work toward reuniting these children with their families, to vote for those people who fight injustice, to donate money or even donate and subscribe to the ACLU, to protest whenever there are gatherings, to hold your government responsible, to speak the truth and refrain from arguing that there's any reason at all to separate any child from his or her parent because they are seeking asylum or a better life for their families and happen to have brown skin.
Here are some more ideas that I found on the Internets.
  1. Become a child advocate.
  2. Become a Court-Appointed Special Advocate (CASA) for young people in foster care or donate to your local CASA program
  3. Donate to Comfort Case which gives backpacks of comfort items to kids in foster care
  4. Volunteer to visit people in immigration detention.
  5. Help transform your faith community or business into a sanctuary space.
  6. If you happen to be a lawyer, paralegal or law student, a number of organizations are looking for pro bono volunteers.

Click HERE for more information and links to explore the above.




#familiesbelongtogether
#resist

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