Monday, October 5, 2015

The Anecdotal Present

Who cares whether the new toys from Ikea are meant for young children? I felt only a twinge of sadness today when I roamed the aisles and wondered whether Sophie would still like these things. She had something similar years ago, but I had to give them away when her seizures got so bad. I was always afraid that she'd have an atonic drop and slam down into them or otherwise hurt herself. Over a period of about ten or twelve years, Sophie cut her head open at least five times, needing stitches, knocked out a couple of teeth, one permanent, broke a tibia, cracked a wrist, cracked her nose and had countless bruises, black eyes and contusions. It's the little things, the small improvements, that mean the world, and these aren't the things that generally impress the neurologists. That Sophie's seizures have been reduced to where she can safely play with some toys is probably proportionate to our successful CBD story being reduced to anecdote, at least with the neurology community and the ridiculous marijuana naysayers. Hell, the small improvements might not impress those of you who are terrified of disability, who can't imagine either being so or caring for someone and still having a fulfilling life. We live in a culture that often doesn't prize difference, particularly the cognitive kind. How many times have you heard or thought At least I don't need a wheelchair! or I could never handle a child with a disability. I realize that there's a learning curve, and I'm grateful to be at the end of it.  I probably would have wanted to kill myself twenty years ago -- well, maybe that's a bit harsh and insensitive -- if I knew I'd be picking out baby toys for my young adult daughter. I'm not sure I would have been able to keep on keeping on, which is probably a testament for all of us, no matter our situations, that living in the present is all we can do. If you pile on some gratitude as you're basking in it, all the better. And if your present isn't so great, be grateful that it's just for now and will pass.

Thank you.

Thank you.

Thank you.

Update on Vimpat Withdrawal: So far so good, although Sophie seems really tired and even depressed. She has a lot of weakness in her right leg and doesn't want to walk on it very much. She isn't having seizures, though, which I will attribute to the emergency THC and CBD. Otherwise, I'd have to blame the Vimpat and then I might really off myself as we kept her on that damn drug for more than seven years.

Sunday, October 4, 2015

Care-giving, Drugs and Guns: Part 4,590,234

That happened this weekend. I sat in front of some fancy cameras while my old college friend, Sophie Sartain, a renowned documentarian, shot a short piece for PBS about caregivers. You might remember Sophie's documentary Mimi and Dona, about Sophie's aunt and grandmother that I wrote about a while back. Click on the title and read a bit about it, watch the clip and then mark your calendar for the PBS showing on November 15th.

The film spotlights the challenges of aging caregivers of people with intellectual and developmental disabilities—some 4.6 million Americans, 75% of whom live at home with family—and details the ripple effects of Dona's disability on three generations of a Texas family.

Can I tell you that while I am most appreciative of a spotlight, particularly when it has to do with advocacy for long-term caregivers of the disabled, I hate the spotlight, the camera and all of the jazz that goes with it. No matter the seriousness of the topic or how well I might articulate my feelings and ideas, a bad picture or one in which I look too -- well -- too, sends me spinning, and I want to run for the hills with poetry. I take these caregiving issues very seriously, but humor me when I ask you to pray to your god that when my little segment appears on the PBS special, I've remembered to hold my chin down, but not too far down, and that my mouth is busy talking, eluding my jowls' resting pose. Because, you know, it's all about me.

That also happened this weekend. I took Oliver and his friend to Malibu. Henry didn't come because he is otherwise always occupied with seventeen year-old activities, and none of these include hanging out with your little brother and your mother. Sophie didn't come because she was having a particularly difficult day dealing with drug withdrawal. She stayed at home and dozed off and on all day with Saint Mirtha. The THC is helping, ya'll, and I think we're through the worst of it. She's not having nearly as many seizures as she had the first four days, and the hives have disappeared as well. Damn that Vimpat and the pharmaceutical clusterfuck it rode in on. During this whole shebang, I tried to get a refill of Sophie's Diastat (an emergency medication of rectal Valium) because her old one had expired (we haven't had to use Diastat in the nearly two years she's been on CBD), but The Powers That Be (namely the insurance company, the federal government, and the pharmacy) couldn't get their crap together, and I'M STILL WAITING FOR THE STUFF. The Earnest Pharmacist Who Just Graduated From Pharmacy School told me over the Consultation Counter very earnestly, It's a controlled substance, ma'am. I'm really sorry. I won't belabor the details -- you've heard it all from me countless times. I found it exquisitely ironic, though, that I am jumping through hoops and making numerous phone calls involving Famous Neurologists at Famous Hospitals, Private Insurers, The Federal Drug Administration, etcetera, etcetera yet haven't made headway to get this refill of a life-saving medication that my daughter possibly needs. Let's not belabor the marijuana part here, either. What if it were a gun dispensary? I imagine I could pick up a military grade weapon and then walk home and order me some ammunition online to protect my family from invaders as we live and work and travel in the big shitty, no problem. My right to do so is protected by The 2nd Amendment. My point is, of course, NOT that we need to lift all regulations and make government (of the people, by the people, for the people) the villain. My point is that there is more difficulty in getting a shitty benzodiazepine prescribed for my daughter's seizures by her physician than there is for me to get a gun and some ammo.


Oh, yeah. Malibu.

It was divine.

Reader, how was your weekend?

Friday, October 2, 2015

Caregiving Chronicles

Your mind goes to what you might have been doing, what sort of career, what you'd wear and how much you'd earn. You think about that first job, so long ago, the stockings and mustard-colored pumps, the boyfriend back at the old church in East Nashville, just over the bridge. He was writing novels, parsing out Blake, and you were thinking about railroads and utilities, feasibility and warding off the good old boy gestures, that guy Bruce in the corner office with the curly hair and lecher walk. You went to a conference once, at the World Trade Center in New York City and it's just too, too, to mention that both towers fell -- that one in your mind, and then those others. Your mind goes to possibilities dashed but is filled up, again, by what came, what's still coming. Sophie couldn't go to school today. She's suffering from withdrawal. I can't go to work today because of that, and whose fault is it really? I've lost twenty years of wages. No one talks about that -- at least not out of the predictable and tired construct of the working versus the stay-at-home mother. Stunning vulnerability. No one talks about choices when there is no choice. We don't have choices. I wouldn't have it any other way, though. I can yearn for some kind of sea change in the way our society treats handles perceives reckons with deals screws pushes away the cost of caregiving. Or I can fill out the forms, get on my knees and swallow. Someone mentioned Chronic Traumatic Stress Syndrome to me the other day. Acronym is CTSS. I'm not complaining caresplaining. It is what it is.

Wednesday, September 30, 2015

How We Do It, Part LV

I drove up Venice Boulevard today, back from a doctor's appointment on the west side, no traffic, blue skies, hot dry sun, the silk floss trees dropping their pink petals. This is what I thought. Sophie had a huge seizure this morning, a big one, related, I'm certain, to the fact that we've cut her drug in half. I rubbed some THC on her gums during the seizure, and she recovered fairly quickly. I don't know what's what, but what I do know is that I've lost all trust, or maybe not all but most trust. You must have figured that out all ready.  Trust in what if not what's what? I don't remember exactly when I became unmoored -- was it when that doctor from New York City told me that I'd had a good idea when I suggested that the three drugs my baby was on were perhaps interacting with one another? Was it that moment when he hmmmmed on the phone and I realized the gig was up? Is it because I'm a woman, formerly a girl who was taught to please, to defer to authority, to pipe down, shut your mouth, too opinionated, your head in the clouds?Just the other day, I was told, Who told you that you're special? What makes you think that? with all the implication that I'm not, which I know, at last, to the questioner. But this -- this trust -- lost -- the sense of trust lost, the yearning to hand it all over (not let go, let god), the impossible decision-making, the plunges, the leaps. The silk floss tree blossoms are like windmills on Venice Blvd, spinning and falling. The trunks are spiked, so sharp that we shaved them from the tree in the backyard when the children were young.  My windshield -- wind shield -- covered with flowers that fall, whole. She seemed confused today, her brow furrowed, her eyes too often swiveled to the right, a jitter, a blip. I imagine taking Sophie under my arm and running, running to China, away. She's still that baby, under my arm, so many trips to China. Don't get me wrong. I'm not going anywhere but there in my head. These seizures, those, this loss, that baby, trust gone -- they are compressed in time, over and over, just mused over on Venice Boulevard while I drive.

Tuesday, September 29, 2015

My Favorite Genius

This morning, I woke up and read about Alex Truesdell, a recipient of a MacArthur Genius Award. She is described as

a visionary social entrepreneur who creates low-tech, affordable tools and furniture that enable children with disabilities to participate actively in their homes, schools, and communities. Truesdell challenges our assumption that disabilities are fixed and instead suggests that limitations can be minimized, or even eliminated, with effective user-inspired adaptations—the kind she creates as founder and director of the nonprofit Adaptive Design Association (ADA).

You can read more about her here.  If you need a good, cleansing cry about something beautiful, watch the video.

The Universe is abundant, and there is much for which to be grateful. Thank you, Alex, for the work that you're doing.

Monday, September 28, 2015


If I were French, I might call our current situation with Sophie -- the hives, the CBD, the THC, the Vimpat and the Onfi -- LA  SIT U AH SEE ON. There's something about the supercilious accent that helps me cut through the fear and cope. Writing it down here also helps me to impose some order, however illusionary or delusionary because, let's face it, after twenty years, the main thing I know is that refractory epilepsy is a big, dark hole and no one, absolutely no one, knows what the hell is going on.*

I had a conversation with The Neurologist this afternoon about Sophie's hives, and she suggested that I cut Sophie's dose of Vimpat in half. My initial response is Whoa. Any of you regular readers know that weaning anti-epileptic drugs, like weaning drugs for depression or anxiety, is serious business, and that the slower you do it, the better. I also carry around a veritable salt lick when it comes to neurologists' opinions and directives about drugs -- the titration schedules, the weaning schedules and the side effects. It's been my experience that neurologists, in general, over-prescribe, ramp up too quickly, take down too quickly and dismiss side effects. That being said, I see the hives, I have the tiniest gut feeling that they might be related to the Vimpat, and therefore, the Vimpat must go. I really like and respect The Neurologist, and she made the call.  That being said, what if it isn't the Vimpat? Ripping off the Vimpat quickly will inevitably cause some withdrawal, including increased seizures and discomfort, but not taking it away could cause some serious shit. I've gotten good advice today from my comrades in seizurology and from my dearest friends. Christy of Calvin's Story (if you haven't read her writing, yet, you need to), said the most profound thing to me after she'd listened to LA SIT U AH SEE ON.

She told me that she has learned to never make a decision based on fear.

We chewed on that for some minutes, laughing at times over the impossibility of it all, how if we really sat down and thought about it, we'd have some kind of fear over all this shit we've faced and continue to face raising our children. We also acknowledged how our gut feelings are generally right -- maybe not even generally, but always. The trouble comes when you don't have a real gut feeling or it's occluded by -- yes -- fear.

So, here's the thing. I'm plain afraid of weaning Vimpat so quickly. I'm afraid that Sophie will go into status or will go insane. I'm afraid not to wean Vimpat because of the possibility of a serious allergic reaction or something brewing. While Vimpat has never really helped her, she's been on it for over seven years, so I'm banking on its relative uselessness as a seizure medicine as far as taking her off it. I have THC and CBD to help during withdrawal, and I have Diastat in the cupboard (currently expired because we haven't had to use it once in the nearly two years she's been on CBD) if there's a real emergency. On the plus side, we were going to wean Vimpat eventually, as soon as we had finished the Onfi wean.

When I lay out my fears and allow my gut to breathe, I think the Vimpat has to go. LA SIT U AH SEE On calls for it.

I think.

*If you have any ideas about what's going on or have a SIT U AH SEE ON of your own to share, please feel free to do so in the comments, especially if you're acquainted with epilepsy and drugs. I'm all ears -- fear and ears.

Saturday, September 26, 2015

Saturday Cue: Mrs. Braddock's Laugh

I periodically use the cue words: Mrs. Braddock's laugh. That iconic scene from The Graduate includes the most maniacal, fabulous laugh ever uttered by a character or an actor with the possible exception of a Jack Nicholson sneer from one of his iconic roles. The laugh is something that I call upon during difficult or absurd situations, most of which happen during my interfaces with the Systems of Care around Sophie's epilepsy. Even if I am the model of restraint, calm and cool, on the inside, I'm throwing my head back and screaming the scream of the absurd.

Watch the whole clip, because the last two lines of it are also pretty damn fabulous.

Ben, this whole idea sounds pretty half-baked.

No, it's not. It's completely baked. It's a decision I've made.

Friday, September 25, 2015

Drug Wars

I posted the above photo, innocuous enough, and told my Instagram followers that if such things turned them on, they should come over here and read this blog post or rant or whatever you might call the twenty-first year of wrangling with drug companies, pharmacies and insurance companies. I spent a bit of time today on the horse, trying to get Sophie's prescription of Vimpat refilled. I write a lot about the benzos -- Onfi, in particular -- but you might not realize that Sophie is also on Vimpat and has been since it was approved for use by the Almighty FDA in the fall of 2008. Yessiree Bob, as they say, and anywho. We slapped that drug on, along with the Onfi, numbers twenty one and twenty-two of drugs both approved and not-approved by The Almighty FDA and then spent the next eight years fighting for coverage by private insurance companies and Medi-Cal despite the grim fact that it doesn't really work. 

What does it mean when a drug given for seizure disorders doesn't really work?

It means the seizures don't stop.

Why, then, did you keep Sophie on that particular drug combination?

Because taking away drugs is a hideous process, and we had no other options. Oh, and because I used to listen to The Neurologist and do what he or she said with the exception of adding a third drug which I had earlier declared I would only do if Jesus Himself offered it to me. The Vimpat didn't appear to affect Sophie negatively, as far as we could tell (which isn't very far as she can't talk or express whether she's having any of the following:

Common side effects of Vimpat:

  • Blurred Vision
  • Dizzy
  • Double Vision
  • Feel Like Throwing Up
  • Head Pain
  • Throwing Up
  • Uncoordinated

Infrequent side effects of Vimpat:

  • Abnormal Manner of Walking
  • Diarrhea
  • Drowsiness
  • Feeling Weak
  • Involuntary Eye Movement
  • Involuntary Quivering
  • Itching
  • Loss of Memory
  • Low Energy
  • Sensation of Spinning or Whirling
  • Signs and Symptoms at Injection Site
  • Rare side effects of Vimpat:

    • Atrial Fibrillation
    • Atrial Flutter
    • Atrioventricular Heart Block
    • Decreased Neutrophils a Type of White Blood Cell
    • Deficiency of Granulocytes a Type of White Blood Cell
    • Feeling Faint
    • Giant Hives*
    • Having Thoughts of Suicide
    • Increased Eosinophils in the Blood
    • Inflammation of the Middle Tissue Heart Muscle
    • Kidney Inflammation
    • Liver Inflammation caused by Body's Own Immune Response
    • Mental Disorder with Loss of Normal Personality & Reality
    • Multiple Organ Failure
    • Slow Heartbeat
    • Stevens-Johnson Syndrome
    • Suicidal
    • Toxic Epidermal Necrolysis
    • Abnormal Liver Function Tests
    • Aggressive Behavior
    • Anemia
    • Chronic Trouble Sleeping
    • Confused
    • Depression
    • Difficulty Speaking
    • Disturbance of Attention
    • Dry Mouth
    • Easily Angered or Annoyed
    • Feeling Restless
    • Fever
    • Hallucination
    • Heart Throbbing or Pounding
    • Hives**
    • Incomplete or Infrequent Bowel Movements
    • Indigestion
    • Mood Changes
    • Muscle Spasm
    • Numbness
    • Numbness and Tingling
    • Prolonged P-R Interval observed on EKG
    • Rash
    • Ringing in the Ear
Sophie has two different Vimpat prescriptions because she gets a smaller amount in the morning, so we try to keep the number of pills she has to swallow to a minimum AND avoid cutting pills into quarters or halves or other infinitesimal amounts. Today, when I went to pick up the refills of BOTH prescriptions, I was told by The Earnest Pharmacist (sigh, they're always so earnest) that Vimpat is a controlled substance, and they couldn't release it to me until Monday. I told The Earnest Pharmacist (bless his corporate heart) that I knew that because my daughter had been taking the drug for seven years (even though it doesn't fucking work) and then The Earnest Pharmacist said he would check to see whether if he over-rode that stipulation the insurance company would cover it, and I, of the tiny, little mother mind™ suggested that he give me three pills to tide me over to Monday and The Earnest Pharmacist said, Oh, no, I can't possibly do that and right before I morphed into Terms of Endearment Epilepsy Drug-Style Shirley MacLaine and banged on the counter, The Other Earnest Pharmacist looked up from her computer or little desk where she was counting out some other poor soul's drug and said, Oh, I can take care of that! Then I forked over my $120 co-payment that Medi-Cal is supposed to pick up but has mysteriously neglected to do so without the six thousandth prior approval.

Then I grabbed a bottle of cheap vodka from the liquor aisle and a bag of Cheetos and ran from the store to add to my stash of Vimpat that I am hoarding for thrills at home in the brown basket right next to the bottles of Onfi and the Lone Ranger cookie jar.

* The reason for this post has just occurred to me. Sophie has been getting hives off and on for a number of weeks. I have no idea why and am now wondering if it's due to the Vimpat? I had thought a drug rash unlikely when I first saw them, because drug rashes usually show up right after you begin taking the drug, and it has been over seven years, but --- well --- sigh. 
** See above.

Thursday, September 24, 2015

Waiting for the Dishwasher to Drain

I'm waiting in my bedroom. There's a man from Armenia in my kitchen, crouched down by my dishwasher. He's waiting for the Quick cycle to complete so that he can determine why it's not draining.  I only mention that he's Armenian because he looked at me strangely when I asked whether he was checking out the Dodgers schedule, a large magnet attached to the refrigerator door and at his eye level. In my country, we don't watch baseball, he said, I love soccer. I asked him what country although I had already guessed by his accent, but unlike The Donald, I veer toward the politically correct and didn't want to profile him in any way. Capische? my father would say. That's you, I'm asking, not the dishwasher repairman. I'm fascinated these days by the collision of language and culture, a collision that seems inevitable for all but those who've taken vows of silence. It seems like there's always someone or something to offend, whether you're being completely rude and calling someone a fucker, let's say, or mincing your words while wearing the yoke of politically correct intentions.  There's rape culture and microaggression and ableism and racism and sexism and what means yes and what means no, good intentions and bad ones, consciousness and unconsciousness and subconsciousness. And then there's the law and the interpretation of the law and the protection of the law and the rebuffing of the law.  It's a weird sort of tyranny, I think, but I haven't thought deeply enough about it to make sense here. Did you participate in the Armenian 100 year celebration? I asked him, looking for something to share. Oliver and I had walked to the end of our street during the parade and watched the tens of thousands of Armenians walking toward the Turkish embassy. The dishwasher repairman said, Yes, but my grandfather had waited all of his life for it and was waiting to go back and visit his home that he'd fled. He died right before. I told him that I was sorry to hear that, to hear that his wait had been for nought, and the dishwasher repairman shook his head and replied that at least they could acknowledge this waiting, this crime. Then we both looked at the dishwasher, like it was waiting for us. I came back here, to my bedroom, to wait. Capische?

Wednesday, September 23, 2015

Silence in Talk

Le Silence, 1900
Odilon Redon

to J.

I first saw the Symbolist painter Odilon Redon's work Le Silence at a museum somewhere on the coast of France during the summer of 1985 when I was backpacking through by myself. Yes, by myself for three weeks. I don't think I spoke ten words during that time, and it was glorious. The painting knocked me flat. I've called upon the peace of it, in my mind, hundreds of times since and most recently today after an exchange with a beautiful human being.

Thank you, J. And yes:

Art washes away from the soul the dust of everyday life.
Pablo Picasso

The Personification of Skin

My mother and father with me at UNC Parents' Weekend
September 23, 1982
33 YEARS AGO!!!!

I have always had "good skin," which I'll attribute to genes, lots of Mediterranean genes. Thank you, Syrian and Italian ancestors, thank you.* Nevertheless, I have been approached to "do a story" on dermatology. 

This morning's Marketing Email of the Day:

Blackheads are a common complaint that will drive them to visit their dermatologist. Most people complaining about blackheads do not truly have blackheads.  What makes a blackhead a true blackhead? Could it be oversized pores?  How do you treat blackheads?   Dr. Janet Prystowsky, board certified Dermatologist in New York City, with over 25 years-experience, is available to speak to blackheads, what a blackhead truly is and how to treat them.
Please let me know when you would like to speak with her.

Apparently, blackheads can be personified.

*If we're going to use the literary device of personification, here would be mine:

Elizabeth,Long black hairs sprouting from moles and freckles overnight are a common complaint of the Mediterranean skin that will drive them to visit the cup in your bathroom that houses the tweezers. Most people complaining about long, black hairs do not truly have long, black hairs. What makes a long, black hair a true long, black hair? Could it be an evolutionary mutation? Dr. Glenda Oblonsky, board-certified Dermatologist in Beverly Hills, with over 345 years experience, is available to speak to long, black hairs, what a long black hair truly is and how to treat them.
Please let me know when you would like to speak with her about yours. We won't tell them that you are seeking eradication and a higher position on the evolutionary ladder.

Tuesday, September 22, 2015

Waxing Gratitude (with profanity)


I kind of winced around all day because of my previous post where I used the f word and waxed righteous about a woman's right to have an abortion. I was responding to the Reverend Promise Dixon's righteousness, but everyone knows that you shouldn't talk about abortion or anything else that so polarizes people because there's just no end to it all. No end to it at all. I've been trying to be still in my heart these days, to not jump down throats or to stir up controversy or to mouth off like I am accustomed and, dare I say it, quite good at doing.

We often stir things up that are unrelated to us when we're facing difficult issues in our personal lives as I am. So, I'm going to be popping in and out of here, periodically mouthing off but probably more likely waxing my gratitude for my community and friends and family.

The Reverend Promise Dixon can still go f*^k himself.

*I posted that photo of Sophie on Facebook and just had an enormous amount of love sent my way, so forgive me, Facebookers, for double-posting it here as well.

The Day After International Peace Day Contains Profanity

It's the day after International Peace Day, so let's rant.

I get at least three emails every single morning from various marketers, peddling products and services as diverse as stand-up urinals for women and books catering to those who believe in manifesting your destiny even as you're swept away in a flash flood in a keyhole cavern. Today's email, though, got my proverbial panties in a wad (I hate the words "panties" and "wad," but some self-flagellation is in order for my upcoming rudeness). This email was promoting a singer named The Reverend Promise Dixon, the 10th of 14 children from Oklahoma. He has a new song, Killers, that addresses the recent Planned Parenthood conspiracy, and the marketer hopes I'll listen to and tell ya'll about it. Normally, I'd delete this kind of thing immediately after seeing that it's evangelical Christian (how in Buddha's name do these people get my email?), but I kept reading until I reached the final paragraph where I promptly burst out laughing (as opposed to combusting which I'm sure the Revered Dixon would have preferred). Here's the last paragraph of the email:

When people talk about Planned Parenthood, it is most often discussed from the perspective of a woman.  Rev. Dixon says that his song sheds light on a different perspective; “This is a unique story, because you always hear about the woman's perspective, but never from the perspective of a man, who actually paid for the abortions.”  It is Rev. Dixon’s hope that through his song, people will be awakened out of complacency and into action.

Here's the action I'm awakened into, Rev. Dixon. Go f*#k yourself.


Speaking of music, Oliver was walking around the house this morning humming bars of "Ebony and Ivory," although he was using different words. I made the mistake of correcting and telling him that the singers were Stevie Wonder and Paul McCartney and that it was about racial harmony. Oliver rolled his eyes and said in his most incredulous fourteen-year-old tone, Have you ever even heard of that song, Mom?


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