Tuesday, November 29, 2016

Scared Sh*tless and Resistant

Just when I think I've had enough, there's something more. Yesterday it was reading that Drumpf (#notmypresident) had appointed arch-conservative Georgia congressman Tom Price to be his Health and Human Services secretary. These appointments -- this vile human being and Jim Sessions, the arch-conservative racist senator from Alabama who will be the chief law enforcer, and the billionaire woman who will be in charge of wrecking public education, render me scared shitless in a profoundly personal way. I'm afraid that there might literally be nothing positive to be salvaged over the next four years and possibly longer, that any progress we've made during the last eight years will be utterly squandered and that the lives of the most vulnerable people in our country -- the disabled, in particular -- will be damanged irrevocably. Both Price and Sessions are vehemently opposed to medical marijuana -- have fought in their respective states against it, have made ignorant statements about it and will now be in the position to reverse a lot of the gains that have been made during the last couple of years, even. Price despises the Affordable Care Act and wants to turn even our right to healthcare into a commodity -- something to bid for, to shop for. Sessions has made disparaging comments, on the record, about public education, particularly special education, leading many to believe that he will work hard NOT to defend the American Disabilities Act and the Individuals with Disabilities Act. He called the inclusion of disabled students (particularly those with behavioral challenges related to their disability) "the single most irritating problem for teachers throughout American today."  He has blamed those disabled kids getting accomodations for the "decline of civility" in this country.Do you think, as Attorney General, that he will have the best interests of my daughter and millions like her in mind?

These people will gut the ADA and they will gut IDEA. They will take away women's reproductive freedom, and they will do it in the service of their fucked up god. They will stall the descheduling of marijuana and go after even those states that have legalized it. They will deny people of color and religious minorities their constitutional rights.

Do I sound hysterical? Do I sound like a sore loser or a whiner, as cousins of mine stated on their Facebook page two days after the election? Do I sound angry?

I'll tell you something. I'm almost hysterical. I'm not a sore loser, but I'm losing. I'm not whining. I'm shouting through words. And yes, I'm angry. I'm going to resist being scared shitless, though, because this is my country, too. A country is only as strong and great as its attitude toward the most vulnerable of its population. Right now, America is poised to be led by a racist misogynist who was voted in by a minority of selfish, uneducated and ignorant citizens . Whether it's him or the craven Republicans pulling the strings, he's surrounding himself with a bunch of privileged sycophants.

For the past two weeks I have woken in dread for what has been wrought on us personally and as a culture and nation. People whom I love have brought this on us, and I just can't shake it.

Yes, this is a rant. I'm waking in dread, but I'm moving forward in resistance.

Today is Giving Tuesday. You can help these organizations that help the disabled. We will need it more than ever --

1. Jewish LA Special Needs Trust

#Giving Tuesday is finally here! As a new nonprofit, we are excited to join this global day of helping and caring for others in need. Remember, all gifts to JLA Trust will be used to help our Outreach and Education activities, and allow us to assist more people with disabilities. You can ensure that a veteran living on government benefits is able to enjoy a higher quality of life and that a single mother can plan ahead with confidence for her child with disabilities  by clicking here! Your dollars will help us help others.

TODAY REALLY MATTERS. Gates Foundation doubles your "Giving Tuesday" donation. That means for every $100 we get $200 today only-- and bless you, if you happen to be able to donate $1000, then the $2000 we get takes care of travel and food for an entire caregiver getaway! I donate upscale hotel lodgings for all caregiftees-- can you help with travel and food? Why do I feel so strongly (as my mother did before me) that the woman's touch is so much needed in this world? And there are some amazing caregiving men, too-- we need to reach a hand out to them. THANK YOU ALL WHO HELP.

We improve lives through Research, Education, and Advocacy. By funding and conducting Research, we learn more about cannabis and its effects while legitimizing the therapy.Education empowers consumers to select the best products for their individual needs, and informs healthcare professionals about options for their patients. Through Advocacy, we spread the truth about cannabis and expand access to those in need. 

Sunday, November 27, 2016

Sunday Morning Poetry with the Night Before Last Sunset

Sunset, Henry and Oliver
Pelican Cove, Rancho Palos Verdes

The Bright Day

Earth, earth!
day, this bright day
again—once more
showers of dry spruce gold,
the poppy flopped broad open and delicate
from its pod—once more,
all this again: I've had many
days here with these stones and leaves:
like the sky I've taken on a color
and am still:
the grief of leaves,
summer worms, huge blackant
queens bulging
from weatherboarding, all that
will pass
away from me that I will pass into,
none of the grief
cuts less now than ever—only I
have learned the
sky, the day sky, the blue
obliteration of radiance:
the night sky,
pregnant, lively,
tumultuous, vast—the grief
again in a higher scale
of leaves and poppies:
space, space—
and a grief of things:
motion: standing still.

A.R. Ammons

Friday, November 25, 2016

Status Update

Seattle, WA

I'm super glad that Thanksgiving is over. I dislike the contrivance of it, that forced gratitude thing. I've never really liked Thanksgiving, except for the sides, to tell you the truth. Speaking of, you know what side I'm on. I am here this morning on the left side of the country and ever so grateful to be here. My political views are opposite to those of some of my closest relatives, and I was filled with dread about the night. There've been awkward Thanksgivings before, but never like this one. I told one of my friends that I was taking it on as some sort of karmic thing. I was intent on being, if not Zen, than at least a tad Stepford-like. I figured that would be at least in keeping with the Drumpf's bride. Last night I posted on Facebook that I would drink a glass of red wine for every Trump supporter at my Thanksgiving table. I posted this picture of myself along with it:

I'm not a big drinker so I anticipated the night being epic. Here's what happened. Everyone behaved. No one mentioned anything at all about Drumpf or his band of crazies. It was ok. That was a bottle of Montepulciano, and it was delicious. I drank one small glass of the wine, served the food dutifully and cleaned up as dutifully. Then I lay down on the bed next to Sophie in a sort of comatose state with a splitting headache and eventually went to sleep.

I guess we're going to have to get on with it. Keep resisting in our own way.

Here are my divine children for whom I'd do anything.

Sunday, November 20, 2016

Love is a Verb, Part 345

Crescent Lake, Washington

I slipped away from sunny California and traveled first by plane to Seattle and then by ferry and car to  Port Angeles in stormy but beautiful Washington for a long weekend. I joined my friend, fellow writer and caregiver Jeneva Burroughs Stone, and writer/caregiver Leslie Haynes at the invitation of Heather McHugh, the MacArthur prize-winning poet who founded the organization Caregifted. Many of you who've been reading this blog for years might remember that I received a week of respite several years ago, the first time I'd been away for more than a few days in more than nineteen years. Caregifted provides respite weeks, free of charge, to family caregivers of the disabled who have been doing the caregiving for at least ten years.

That week in Victoria is documented on my blog, and it quite literally changed my life. I grew to love Heather and what she is doing for those of us with these unique, often arduous but also deeply fulfilling lives. Most, if not all of us are exhausted, and while we might have learned some profound perspective, the relentless nature of caregiving for a severely disabled son, daughter or spouse is something that few people -- even close friends and family -- ever understand. I'd say that Heather McHugh is a person who does understand this -- inexplicably, as she has no children of her own. She is a poet and an angel -- and I don't say that lightly.

There is no other organization that I know of that does what she does, and while it's a small one, the impact of Caregifted is deep and intense. Heather invited us to her beloved Pacific Northwest  to have a kind of creative pow-wow to figure out how to keep the organization going. Given the disastrous election, many of us who work with and care for our disabled children and young adults are justifiably terrified at what might happen. We are certain that any services we might receive could very well be cut or drastically reduced. We are concerned about the rights of our children and all people with disabilities and about our ability to fight successfully for them. Disability rights are civil rights, and they will be threatened. There has been real progress under the Obama administration in the areas of education law, the Affordable Care Act and other issues. Many people don't realize that, but there is still much work to be done. The cognitively disabled, in particular, are overlooked, as are the severely disabled, and our lives as caregivers are seriously impacted by a culture and government that doesn't acknowledge or help us.

Caregifted is an extraordinary and very unique organization. Since the election, many of us are mobilizing through concrete action to help organizations that are helping the disenfranchised. I am making monthly donations to Planned Parenthood and to the ACLU. I plan on registering as a Muslim should the Trump administration make registration a priority, and I am ready and willing to do what it takes to resist the mockery of a presidency, the band of mostly white men who surround him and the legion of their supporters. I know that many of you are doing the same, supporting organizations that support people of color, the LGBTQ community, climate change initiatives, Muslim and other religious minorities, as well as women. I urge you to add the disabled to your list. Caregifted is decidedly NOT a political organization, but it is an extraordinary and very unique one. I would love if you'd make a contribution, however small, to Caregifted. Helping caregivers helps the disabled. Rights for the disabled are civil rights. Trust me on that one.

Here's their website. Donate if you can. Stay tuned to hear about screenings of the wonderful documentary Undersung. We are a small group, but you are a mighty one. Share it and tell your friends and family about it.

Thank you!

Wednesday, November 16, 2016

Happy NaFaCaGiMo, folks! Day 16 with a Brilliant Guest Post

Nichole Montanez incredible photo project: The Face of Cannabis

So, I haven't been posting about NaFaCaGiMo since the sh**tstorm we called an election happened last week. After peeling myself off the floor, though, I'm galvanized like never before to RESIST. My friend and fellow caregiver, Jeneva Burroughs Stone, posted a lengthy thing on Facebook today that is particularly relevant to not just the sh**storm, but also to caregiving and disability rights. I hope that you'll read it and share it far and wide. 

If there are any Trump lurkers around these parts, please read it because it's about people like SOPHIE whom you profess to love and about the millions of people like her. 

Many of us have been working in the so-called trenches for decades on issues of social justice. Last night I attended the Realm of Caring benefit that honored some of those people -- people who have been and continue to fight for our children with epilepsy and other significant health disorders so that they have access to cannabis medicine. The event raised money to help children and families who can't afford the medicine get it. We have and continue to fight against very entrenched ignorant beliefs and a medical/industrial complex that is tyrannical. We are motivated because our children's lives are on the line. What happens when you start advocating for your own child in any system at all, you realize quite quickly that there are LEGIONS of people that need help and that it is your responsibility to do what you can to help them. That's what I'm doing. It's really hard work, and you have to be prepared to argue and fight and make enemies. As the great MLK said, "The arc of the moral universe is long, but it bends toward justice."

Jeneva's incredible new memoir, Monster is available for pre-order. Go do that and then come back and read her powerful words: Now here's Jeneva's powerful post:

I haven't said much about the election recently, nor whatever it is I will do to resist an incoming administration I feel to be wrong, insofar as the attitudes it has projected and the personnel it has appointed thus far.
I've been standing up to injustice in a very individual, almost lonely way for over 18 years: fighting the education system, the medical establishment, the state. I haven't been shy about saying that I have to fight Democratic politics as often as Republican politics--that's the nature of disability bias. It comes from both sides, and it's extremely difficult for able-bodied people to break out of the disability = tragedy mindset and move toward thinking that disability = another way of living. And equally difficult to resist placing persons with disabilities within capitalist values (what are they worth, anyway, to society?) when that question is not asked with such disconcerting openness in major news outlets as compared to other disenfranchised groups.
I've determined that my own energy will be sucked into my continuing struggles for Robert's equality and independence, and I hope that I am able to frame these broadly enough that my efforts will benefit more persons than just him. This fight will sometimes put me at odds with many of you, but that is to be expected. Insofar as your objectives propose true and not symbolic inclusion of persons with disabilities, I will do whatever I can to help, but my own energies have to be primarily with PWDs, as we/they are the first to be cast overboard in a storm.
I do have advice for whoever wants it about confronting and resisting authority, although many of you have been activists for some time and probably don't need it.
First of all, remember that demonstrations and open statements of resistance are certainly steps in the right direction; however, these serve the purposes of mobilization. They accomplish little in and of themselves by themselves. You have to put in the work to organize: getting permits, creating lists of supporters, setting agendas that involve more than making calls to congress. As many of you have discovered, each office has multiple phone lines and the opposition will find ways to avoid you.
Second, and following upon the first, you must listen, both to the opposition and to the variety of opinions within your own group. You don't need to listen to the opposition out of empathy (although bridge-building can be important): you need to listen to grasp their positions and potential strategies. If you don't know what these are, you cannot outflank and out-maneuver them. You also need to understand the personalities and motivations of the opposition leaders in order to locate what you can use to your advantage. These are the strategies I use the most in approaching the wall of opposition I face on behalf of Robert.
The Democratic Party has, to my mind, erred in refusing to listen to its internal critics, and, thereby, passed on forming a broader coalition. Avoid the mansplaining, overbearing tactics common to many organizers--the "I know best, I've done this longer than you," kind of thinking, be they men or women.
Third, you must be willing to perform acts of civil disobedience. That's where I am now with Robert's needs: trying to figure out what I am willing to do, what consequences I am willing to accept and what consequences are too dangerous for my son. No is a powerful word, but it must be used with care. Consequences are real and you must accept they will be real.
Fourth, you must take the energy you are generating now and move even beyond organization toward the massive project of selecting and running individuals with goals akin to your own for public office. This is a great deal of work, and two years to the mid-term isn't long. And both President Obama and Senator Sanders have made good points that getting your points of view into the political decision making process is essential. Voting is good; getting more candidates in the race is better.
Fifth, and I say this to both liberals and conservatives (and progressives): vandalism, threats and violence will do little for your cause in the long run, other than to give others evidence to repudiate you. For example, the threats issued toward my family by Maryland's Department of Nursing Services has done nothing more than stiffen my resolve.
Sixth, always be nice to the army of administrative persons who help provide access to key persons. Be nice always to those who help you consistently because it's the right thing to do. But "being nice" to authority doesn't work much. As a woman, I had a hard time with this, letting go of it, but I recognized early on that this would just be taken as a sign of acquiescence by, for example, the school system. They won't like you, but you will get your message across. Switch up your messengers when you need to--good cop/bad cop. That's what Roger and I do when we realize the same thing said by a male voice will trigger a different response.
Seventh, learn the law, learn the loopholes, and don't rely on rhetoric to get you to your objectives. That rallies support for your side, but is easy for the opposition to ignore or downplay. As I have discovered, I can shout about injustice all day long, but until I develop reasons for why these are injustices and put those pieces into play, I get nowhere.
Eighth, you will have conflict with some of your friends. I have, too. Some have told me I am too emotional, too prone to rant. I see what I do as exemplifying injustice and pointing out what's wrong. This metaphor isn't quite what I would like, but my earth science teacher once told me, "stick to your guns," when I, in uncertainty, changed my answer on an oral exam to the wrong one because I was looking for some sign from him that my original instinct was the correct one.
I hope this hasn't been patronizing, as I have not meant it that way, and I'm sure it duplicates what some of you already know. See you out there.

Monday, November 14, 2016

Crushed Progress

adjective: progressive
  1. 1.
    happening or developing gradually or in stages; proceeding step by step.
    "a progressive decline in popularity"
    synonyms:continuing, continuous, increasing, growing, developing, ongoing, accelerating,escalating; More
    • (of a disease or ailment) increasing in severity or extent.
      "progressive liver failure"
    • (of taxation or a tax) increasing as a proportion of the sum taxed as that sum increases.
      "steeply progressive income taxes"
    • (of a card game or dance) involving a series of sections for which participants successively change place or relative position.
    • archaic
      engaging in or constituting forward motion.
  2. 2.
    (of a group, person, or idea) favoring or implementing social reform or new, liberal ideas.
    "a relatively progressive governor"

I bought a very expensive pair of progressive lenses less than a month ago. I have worn glasses for near-sightedness since I was seven years old, and over the last five or so years I've grown increasingly short-sighted as well. My eyes are near-sighted enough that I literally can't see -- say -- an alarm clock from my pillow or my face in the mirror, not to mention five feet in front of me. Outside a radius of perhaps five inches, everything is a blur. I have worn contact lenses for as long as I can remember, but for the last year or so, when I took them out, I couldn't read in bed either unless I placed a pair of reading glasses over my regular glasses. It wasn't a good look, but really only the boys saw me, and I just didn't feel like getting adjusted to progressive ones.


I bought this great pair of progressive lenses and have worn them for about a month and have never seen better. I also have a pair of prescription sunglasses, so this morning I put them on, hung the progressive lenses on my shirt and wheeled Sophie's chair out to the car. It's a bit of a production to fold up her chair and heave it into the back of the car, a daily task that you'd think would give me cut arms (waiting on them) but has, instead, given me a strong back and an even saltier mouth. Cursing helps to mitigate the labor and distract me. Sophie doesn't mind, and I imagine her silence, if broken, would be filled with curses. I dropped her off and then went on my grocery store rounds, drove back home and carried the groceries into the house. I took off my sunglasses and reached into my purse for the progressive lenses and they were, of course, not there. They weren't anywhere in the house, nor were they in my car, and it didn't so much dawn on me but actually hit me with a jolt that they might have fallen off two hours before when I put the wheelchair in the car. I walked back outside and to the street and saw them, crushed and broken into pieces. I felt sort of stunned and then sort of amused, enough to take a photo. I picked up the glasses and the pieces from the curb, brought them inside and burst into tears.

The metaphor of crushed progressive lenses doesn't escape me.

Staying Awake

What is the meaning of life? That was all -- a simple question: one that tended to close in on one with years. The great revelation had never come. The great revelation perhaps never did come. Instead there were little daily miracles, illuminations, matches struck unexpectedly in the dark; here was one. This, that, and the other.

Virginia Woolf, in To the Lighthouse
published May, 1927

Sunday, November 13, 2016

Taking a Bullet

That's Sophie sitting in her wheelchair, gazing at trees. She's finally stopped moaning and humming. I'm not sure why she's been moaning and humming. Is it the impending full moon? Is she constipated? Is something hurting? Has she absorbed the extreme tension in the universe post-election? Has she absorbed the extreme tension in my family due to the election, via me? Is it moaning? Is it discomfort?

She is not having seizures, praise cannabis, and that would include THC. So, yeah, you obdurate fools who don't think THC is medicinal.

She is otherwise dramatically improved from a month ago. It seems hard to believe, yet I am determined to feel gratitude for this respite. That's why despair must not be indulged when things go wrong. Things never stay still. Still, the moaning and vocalizations are constant enough that they put my already extremely edgy self just at the tip of -- well -- falling off. I told the boys as I folded my laundry that when we lived in a tiny New York City apartment and she was a baby and screamed 3/4s of the day due to discomfort from the drugs that she was on, I would have to resort to putting her into her crib or in the middle of the bed, after which I would go into the shower, turn it on full blast and crouch there on the floor, my head in my hands, the tears swirling with the water down the drain. Oliver asked, If that was your life, why in the world did you have us? I told him that never, at any time, did I regret having a baby and that Sophie was a rock star even then and that he and Henry were the reason why I had them. The boys smiled as they ate the pizza that I'd ordered -- things are so hairy around here that I'm not even making lunch these days, much less dinner.

That paints a rosy portrait of two boys, their moaning sister and tense mother folding laundry while eating pizza. It was hardly that as our lunch discussion became a heated and argumentative one as we shared stories of racist incidents that we know about, that affect those we know and love, already, not even at the end of the first week of post-America. We live in one of the largest and most multi-cultural cities in the world. I've got teenaged sons whose best friends include bi-racial kids, black kids, Hispanic, Muslim and Asian kids. Their sister is disabled. They know what discrimination is (the people who use the word retard and then argue that it's just a word, the fact that disabled people were institutionalized in the past, that they face discrimination both subtle and overt everywhere in this country, etc. etc. etc.), but I don't think they have ever seen the kind of overt shit that's going on now, and it enrages and scares them. One of their cousins wept openly about an incident on a high school bus where white kids shouted at black kids to go to the back of the bus. A young black student at UCLA whom we know stopped her car to help a white bicyclist that had fallen off his bike, but he called her a nigger, told her that we don't need your help anymore. We have family members that we literally can't talk to right now, and that's so disturbing and stressful that I can't even write about it.

The boys' first impulse is to fight back, to use violence, and while I know this is talk that comes from teenage bravado and testosterone and feelings of helplessness (and the reason why, I'm sure, young males have been historically exploited to fight wars), I am doing here what I call parenting on the fly. We talk about being alert to increased violence and racism in our community and to being prepared should something arise. We talked about our white privilege. We talked about the importance of non-violence (O.K. I talked about it and they rolled their eyes), and I told them that if it comes down to it --- and they asked me this question -- I would take a bullet but not shoot one.

Yeah, lunch on a Sunday afternoon.

Never have I felt as galvanized or depressed.

I claim to be a master of equanimity, of the ability to hold two opposing or contradictory thoughts or feelings at once, but that's not happening right now. Or maybe it is as I balance fierceness, righteousness, anger and at least a desire to be compassionate.

For every the America we know is dead (usually said, written about or cried by a white person), there is a much more relevant there was never an America.

I'm not sure the rift in families can be repaired.

Saturday, November 12, 2016

Saturday Poetry

Since the election, I wake up every morning in dread.


I lived in the first century of world wars.
Most mornings I would be more or less
The newspapers would arrive with their
careless stories,
The news would pour out of various
Interrupted by attempts to sell products
to the unseen.
I would call my friends on other devices;
They would be more or less mad for
similar reasons.
Slowly I would get to pen and paper,
Make my poems for others unseen and
In the day I would be reminded of those
men and women,
Brave, setting up signals across vast
Considering a nameless way of living, of
almost unimagined values.
As the lights darkened, as the lights of
night brightened,
We would try to imagine them, try to find
each other,
To construct peace, to make love, to
Waking with sleeping, ourselves with each
Ourselves with ourselves. We would try by
any means
To reach the limits of ourselves, to reach
beyond ourselves,
To let go the means, to wake.

I lived in the first century of these wars.

Muriel Rukeyser
from The Speed of Darkness, 1968
posted on Poetry Foundation

Friday, November 11, 2016

Waking UP

Things are getting scarier by the moment, even in my extended family. So much anguish and so much dismissal of it. So much desire to understand and so much misunderstanding.

I'm struggling with how to do and say the right thing. I use strong language sometimes, throw out "f-bombs" regularly and offend people with that language. I am sorry for that.

The story I posted the other day about my sister's small act of civic disobedience when she threw Tic Tacs into a bowl of chips where three white men had been gloating about their candidate's win sounds hollow and trivial to me today as I've absorbed the anger and frustration and true anguish of many of my fellow citizens and witnessed the hate being unleashed by other citizens who've been strengthened by the racist who is our president-elect. A good friend and neighbor,  a man of Filipino descent married to a white woman who has two sons, a man who has multiple advanced degrees, lives in a beautiful home that he renovated with his own hands cried over the result of this election and what it means to his two little boys. I'm listening and standing beside him and his family. My friends in the disability community are frantic and beyond distressed over what they believe will happen to their families and loved ones with disabilities. I'm listening and standing beside them with their families.

I find arguments to compromise hollow and trivial. While I appreciate and understand the Obamas work toward the constitutional "peaceful transfer of power," I'm going to do everything I can to protest this election outcome.

I'm drawing a line in the proverbial sand right this instant. I'm not sad because Hillary Clinton lost and the Republicans won. I'm not a crybaby or a sore loser, either. I'm far from being politically correct, whatever that term means these days.

Here's what I am and who I am.

I don't tolerate violence, racism, misogyny, sexual assault, bigotry, xenophobia, the mockery and disdain of the disabled or the denial of climate change. I don't accept your tolerance for or understanding of it. I don't accept the argument that the media slanted the things Drumpf said over the eighteen months of his campaign. I don't accept the lame excuse that he will somehow not actually do the horrendous things he threatened to do while running. I heard them, loud and clear, over and over and over. I see what has been unleashed, and it's hideous. I believe this man is a dictator in waiting, and I'm going to do everything in my small and limited power, to resist him. Above all, I pledge never to be violent and to stand by those who are most vulnerable at this time without fear.


Keep Leaning Toward the Light

Thursday, November 10, 2016

It's NaCaGiMo, Folks! Day 10

I've been veering all over the place -- despair to anxiety to "power to the people" enthusiasm and resolve and then back. In keeping with NaCaGiMo, though, I'm going to tell you that I feel the most panic when I think about what might (and probably will) happen to those of us dependent on disability-related federal subsidies. I'm talking the Affordable Care Act and it's dismantling, what it means to Sophie and her "pre-existing condition." The amount of stress -- both emotional and financial -- that our family and millions of others had before the ACA was PTSD-inducing, and it looks like we're in for another round of it. I'm talking SSI and IHSS, and the various services that many families of children with special healthcare needs and disabilities depend upon for not just their quality of life but also their existence. We had actually made progress the last eight years, and now it looks like it'll be ripped away, systematically. I got a grim reminder of how it happens yesterday as a job I had -- acting as a peer reviewer for a federal grant -- was suspended late in the afternoon. I needed that job, and I'm certain that those who wrote the grant proposals needed that money. It's started already, and if the past is any indication (the 8 years under Bush), anything related to caregiving and the disabled is the first to go on the chopping block. One of the first things that Obama did when he took office was to lift the ban on federal funds for embryonic stem cell research. At the time I was working on a national collaborative team trying to improve the quality of healthcare for children with special healthcare needs (with special effort toward closing the equality gap for the disadvantaged), and the relief was palpable, not just for the medical professionals but also for families who have children with genetic conditions and serious life-threatening illnesses. I'm thinking of the prospect of a Chris Christie in a cabinet position, a man whose draconian stance on medical marijuana could actually kill children and adults who need it. During his short presidential campaign, he vowed to go after those states that had legalized marijuana and turn the clock back. 

I'm going to be honest and admit to my fear, even as I don't despair. It's a matter of principle, I think -- the fact that the Republican party, a majority of white people, INCLUDING WOMEN, put this creep of a man into office and acquiesced to the assholes that will surround and advise him. We need to all WAKE UP and fight back.

Wednesday, November 9, 2016

Inexperience and Providing Nourishment

Dark days ahead. I've only slept an hour or so, numb, and am finally, blessedly, woken at 2:30 by someone I love so that we could murmur to one another through the darkness, over the telephone. There's only love.

Early in the day I brought Sophie to the osteopath. A student held Sophie's feet gently and the doctor bowed her head, eyes closed, her hands under Sophie's back, her spine, then her head. Sophie resisted at first. I held her hands down, looked in her eyes. The doctor said All will be well. Sophie's eyelids drooped, she fell asleep under our hands. We are all healers.

All night I have been awake. I lie in the dark on my bed, the constant blip of an alarm breaking the quiet. Not a full-out alarm but a scrape, a shortened whine. I walk around the house and stand in various places, my head cocked. Is it here? Is it here? Is it at my neighbor's whose house is empty, being renovated? It seems somehow important, this half-way alarm, its insistence.

My three children sleep. One is wrapped in a defensive cynicism, the other in despair. Sophie is innocent, holding all.

I cut a person who questions my fear, tells me to trust only in family and place of worship. I think fuck you and recoil from him, myself. I delete his name.

Dark night. There's only love. My beautiful family.

I feel all the feelings that a body can hold, let them sit and swarm, envelop me in the darkness. There is time to feel everything, to know only the body and what it feels. You can't figure this out. The specificity of despair. So many things I haven't figured out, yet I am here. The sun is still rising and setting. There's history behind us to call on, people of strength and resilience.

Except fear. It rolls in. Stealth. Deserves only a cursory greeting, a scrape, a shortened whine. Is it here? Is it here? I will tell my children that I only greet fear as it passes through. I will tell them that they are safe, that they are loved. I will pay attention, my head cocked, my mind calm, relaxed, prepared to work.  My children are old enough to know, too, these other things. We will be prepared to work when we have allowed the feelings to flow through. We will be calm, relaxed, prepared to work.

We are inexperienced here and unprepared. Why should we be otherwise? I will be calm and relaxed. I will provide nourishment to myself and to my children and to those who need it. I will not waste my energies on those who would argue against the body that feels, against love.

The person in this position has indeed developed in himself a true appreciation of humanity in all of its folly and beauty. Such a person can lead others with wisdom, compassion, and inspiration, and attain all the success attributed to the great and wise historical leaders.
When your endeavors involve the nourishing of others, it is important that they are worthy of such support. If you consistently nourish superior persons, who will in turn provide nourishment for others, you can achieve great effects. Through nurturing and support, social and political aims can meet with success. 
 -- from The Book of Changes or I Ching, Hexagram Four (Inexperience) and Hexagram 27 (Providing Nourishment), when asked: What to do? What to think? What do I do? What to do? What do I think? What do I do?

Tuesday, November 8, 2016

It's NaFaCaGiMo, Folks! Day Eight

Photograph by #BadAssBrotherFaCa Oliver B.

#BadAssMotherFaCa and #BadAssBrotherFaCa
voted today for her, Sophelia Bodelia, because we know her rights as a human being and ours as her caregivers will be served best by a President of the United States who believes in the humanity of every living person.


First time voter, my son Henry:

Monday, November 7, 2016

It's NaCaGiMo, Folks! Day Seven

I know I've been snippy and snappy and sarcastic about National Family Caregiver Month, and that's mainly because I've developed what I think is a healthy coping mechanism. Being snippy and snappy and sarcastic is a kind of coping vice, I guess, for some of us who don't drink or do drugs or otherwise act destructively when under a whole lot of stress. And maybe it's not much of a vice -- I think that anger and frustration can also be used to fuel change and increase awareness, break down barriers and make the very real problems that we caregivers deal with on a daily basis somewhat more relevant and resonant for others.

Today, though, I'm going to pause and pay homage to my many caregiver friends who've lost their children. Part of the caregiving deal is that many of us think about and experience death all the time. If we're not worried that our children will die before us, we're worried that we'll die before them. At best, this is a messed up situation, an impossible conundrum, but it gives one incredible perspective about living each day and even each moment with an almost reckless gratitude. Over the twenty-one years that I've been a mother and caregiver, I have known many, many children who have died. They were Sophie's friends in preschool and elementary and middle school. They are the children of a few of my best friends. They are the children of the beautiful people I've met online, blogging, and in the larger medical cannabis world. Just last week, another child died, the son of a woman I met at an epilepsy conference who is part of the powerful community of cannabis professionals in Colorado. She and I were on a panel with a bunch of obdurate professionals -- she as a nurse and parent of a child using cannabis and me as a parent of a child using cannabis. I was devastated to hear of the death of her beautiful son Reggie.

Last night I had the privilege of attending the 6th Annual Candle Lighting to Remember, a beautiful event down in Laguna Beach. We each had a paper lantern that we decorated with markers and stickers, sitting at picnic tables on a bluff overlooking the Pacific Ocean. I made one for Reggie, specifically, but my intention for the night was to remember all the children I have known in my family caregiver world who have died.

There must have been at least fifty people who walked down a steep beach path, placed their lanterns in the sand and then dropped a tiny candle inside. As the sun went down in a glorious display of pinks and purples and oranges, the lanterns grew brighter and brighter, undulating out in this beautiful serpentine way across the beach.

When the sun had sunk into the ocean, we collected our lanterns and extinguished the lights and walked back up the path to the bluff above.

May you be happy
May you be well
May you be peaceful and at ease

-- Metta, or lovingkindness

Sunday, November 6, 2016

It's NaCaGiMo, Folks! Day Six

This morning, I'm lifting one of my dearest CaGiMo's Facebook status updates for your amusement and education. Here you go:

NaFaCaMo Day 6, election edition.Vote.Yesterday while strolling through one of our neighborhood parks with my son and his nurse we overheard two men talking rather crassly about "ending women's rights." I turned to look at them and saw that one was wearing a sticker for the republican party's presidential candidate. He saw me see his sticker and then yelled, "yeah, that means you babe!" I looked back at him again and he yelled even louder, "next week you'll be done!"Vote.For those who have seen both the video I posted yesterday and HRC's last campaign ad, we did ours before seeing hers so I told my son that she liked ours so much she made her own. Roar.Vote.Sending fierce love and deep gratitude to those who are able to do more than we are to get out the vote.Oh, and VOTE!

***I'm a Bad-Ass Mother FaCa and I approved this message.

Saturday, November 5, 2016

It's NaFaCaMo, Folks! Day Five

It's getting closer, and I know I'm preaching to a pretty big choir here with the occasional errant outlier, but this election is whupping our asses. I bought a choker the other day, a black ribbon with a beautiful blue Buddha on it. I don't ordinarily like anything that high on my neck. I hate turtlenecks and claim my decollete as one of my last remaining assets, so I tend to wear necklaces that hang right there, drawing the eyes down from the chin and the crepe -- whatever. I bought a choker the other day because I loved it, and because I felt the visceral need to be literally choked. I don't mean that to sound kinky or perverse -- I just feel choked up and tired, exhausted really, from the whole shebang. I'm tired of reading about it, hearing about it, listening to it and, most of all, talking about it. I needed a symbolic choker, so I bought it and put it on right in the store, vowing to not talk about the election or listen to anything more about the election and to keep it on until Tuesday.


What does this have to do with NaFaCaMo, you might ask? Well, everything, actually. We've got to vote Hillary Clinton in to office as President because we have the best chance of having our needs as caregivers met. I believe we have the best chance of having our children with disabilities' needs met. Hell, I'm a lefty liberal, so I believe we have the best chance of having our needs as human beings met.

And that's all I'm saying about that.

Friday, November 4, 2016

It's NaFaCaMo Folks! Day Four

Today was a day of light paperwork, spent mainly in organizing the piles of stuff on my desk. Did I tell you that Henry broke his collarbone in a lacrosse tournament about three weeks ago when I was gallivanting around Mammoth taking pictures of fall color? Did I tell you that it was, of course, the only lacrosse tournament that I have missed and the first broken bone of the boys? I guess the fact that Henry is now 18 years old and has never broken a bone is a good thing, but it was a pretty bad break, and he had to have surgery. He's now somewhat laid up as far as playing lacrosse for a few months but healing otherwise quite nicely. I'm only telling you this to emphasize how much easier it was to take care of business with him than it has been for Sophie. He broke his collarbone and was in pain. He took medication, and the pain stopped. He broke his collarbone and the doctor fixed it. He broke his collarbone and the insurance company didn't question the procedure. Bills were paid. Granted, I received the Explanation of Benefits from the almighty Anthem Blue Shield and practically fell out of my chair at how much it all cost (think five digits for a 25 minute surgery and two-hour recovery at one of the fanciest hospitals in the shitty). But I really can't complain. In the twenty one years of caregiving as the CEO of Sophie, Inc., things have actually almost never run as smoothly. And I mean ever. The thing is I received a stack of Explanation of Benefits (literally a stack because each one came with the requisite three pages that listed the languages they would be available should you need translation) for Sophie's hospital stay that happened the week before the broken collarbone. The stack filled me with the usual dread which I imagine is partly due to PTSD which I acquired in the early days of The Troubles when I had to fight tooth and nail for every bit of coverage. Nowadays, I feel dread and mitigate the dread by quickly placing the stack of papers in a pretty folder. I then place the folder on my desk and set myself the task of only dealing with the folder one time a day until any problems relating to the stack of papers in the folder are resolved. This means one telephone call a day or, at the most, two telephone calls a day if I am referred to someone else for the same problem.

That's a caregiver tip: Pick something, anything and deal with only that something, anything. When you hit a wall, put it away for the day. This tip will, of course, not work for all problems related to the caregiving of your disabled child or adult, and if you're in, say, the first decade of doing this stuff you might have the stamina to do multiple things, but I'm warning you it (your stamina) won't last forever and nor will your sanity, your marriage and your general goodwill toward the universe.

The other papers that you see above are also related to my job as CEO of Sophie, Inc., and they address the upcoming IHSS social worker meeting, and the Department of Social Services' changes to the IHSS tax reporting laws. I've covered all identification with my alter ego Marcie figure, a tiny mushroom, a pen from Quicken Loans that appeared on my desk, a few black stars from the PicMonkey app and my beloved F Bomb that my friend Cara gave me for my birthday.

If you're still reading this exceedingly boring post, congratulations. I'll reward you with a picture of where many of these papers will be transferred and sit for many months before being filed in one of the filing cabinets in my house.

You'll notice some plastic bags above the blue basket that holds the papers. These are filled with 1 ml syringes that I use to administer the CBD and THC that Sophie gets. In fact, you can even see the bottle of THC that I store right there, too, across the kitchen from the CBD bottle, so they are not mistaken for one another. Reader, you might ask why? That little bottle of THC is far more potent than the little bottle of CBD, and if the contents of the blue basket begin to really stress me out, I can quickly take a swig and be on my way.

To Mexico.

Thursday, November 3, 2016

It's NaFaCaMo, Folks! Day Three

Sophie the Phoenix and her driver, The Pile of Ashes


  1. LOVE Contrary to what some believe (and probably don't even realize), most of us love our children with disabilities as much as we love our children without them. This means we are committed to not just their welfare, but also to our responsibilities as parents. They are still our perfect babies. This is why when people say they couldn't do what we do, we roll our eyes and growl.
  2. GRATITUDE I am grateful that Sophie has a father who loves her, has always loved her and been a wonderful caregiver to her. I am grateful for my sons Henry and Oliver, for the joy they've given me, for the perspective they've given me, for the babies they were and the young men they are. And they're pretty damn perfect.
  3. GALLOWS HUMOR Even though I've made a groove in the shower with my forehead where it fits perfectly and from which is etched a narrow channel where tears have mixed with water that pool around my feet, salting them, I generally hit a point where everything -- and I mean everything is absurd. My two sons seem to have inherited this quality (is it a quality or just a characteristic?) as well which I think means the universe is abundant. One of my fondest memories is of Little Oliver, aged six or so, lying on the floor trying to pull a cup out from under a piece of furniture in the kitchen where it was thrown by a seizing Sophie. Who lives like this? he muttered. What kind of life is this? There are those who believe everything is a blessing and has a meaning, ordained by God. There are those who despair and give up. And then there's the rest of us, and we roll around and laugh.
  4. MONEY Yes, you've read that right. I'm perfectly aware that money doesn't make for happy or give us a cure (lord knows I've raised so much money for epilepsy research and we all know things seem as dark as ever). What money does, though, is make things easier. You get better healthcare when you have money. My parents have supplemented me with money for as long as Sophie has been alive. I use the money to pay for caregivers or for any expenses related to Sophie's care. I also get money from a program called In Home Supportive Services. Basically, I am paid by the state of California to keep Sophie at home and out of an institution. I'm paid under $9.00 an hour which isn't exactly what I'd probably have made if I'd had the career that I originally planned on having, but the money goes toward the near $20.00 an hour I pay Sophie's helper. Money doesn't just make things easier. It has saved my sanity and my family's life.
  5. FELLOW CAREGIVERS I would honestly have died inside if I didn't have my amazing community of fellow caregivers to share the road with me. I'm hard put to write anything but cliche about these men and women who offer support, camaraderie, mutual senses of humor, similar horrendous and wondrous caregiving experiences and always love. The beautiful world of the internets has made this possible, and I'm also hard put to imagine how in the hell I did it back in the dark days of the last century when there was no such thing, when I tossed out my copy of What to Expect The First Year. Oh, yeah. I remember how I did it. I met Jody and Susan and Lauren and Gigi and talked to Eleanor on the phone (literally the only person I knew who had a child with a disability). 
  6. MY REGULAR LIFE FEMALE FRIENDS I know everyone has their burdens, but there ain't nothing like having a child who is severely disabled. That being said, my friends who have not been uniquely blessed and cursed have taken me out of that very small world and supported me. We drink and laugh and go out to lunch and to see movies and complain about our teenagers. I have some online relationships with fellow writers and bloggers who sustain me as well. It's a beautiful world.
  7. MY PROGRESSIVE POLITICS I have a relative who once bragged to me that despite his unemployment and economic duress, he never accepted or expected help from the government. We all need one another, and I'm telling you that no family member or even neighbor is going to help me out in the way that I need help. I'm talking about changing dirty diapers for decades, lifting my daughter into and out of a wheelchair and a car, buying her drugs to keep her alive that cost thousands of dollars a month and providing her with a quality of life that is stimulating and has a modicum of beauty. I need help. Show me a conservative politician with truly progressive values who claims to honor the sanctity of life and supports policies that help the profoundly vulnerable in our country. 
  8. MINDFULNESS MEDITATION I took the basic six-week mindfulness meditation for stress reduction class when Henry was about two months old and Sophie went on a two year screaming jag. It saved my sanity. I might go days and even weeks without sitting (the practice of meditating), but I have honestly tried to live mindfully ever since. That means recognizing each moment that comes, the bodily sensations it evokes and not judging them. 
  9. LITERATURE, POETRY, ART AND BIRD PHOTOGRAPHY I'd be dead in my mind if I didn't surround myself with books and poetry and art and those who love them. My writer friends are probably my closest friends because we know that our salvation is our suffering and what we create from it. Oh, and then there's the bird photographer.
  10. SEX Just kidding. Maybe.

Wednesday, November 2, 2016

It's NaFaCaMo, Folks!

I'm actually a day late to inaugurate the National Family Caregivers Month series of blog posts that I plan on writing in November. My friend and fellow Family Caregiver, Sandra, likes to call it NaFaCaMo as a sort of twisted take on NaNoWriMo, when writers the world over write a novel over the thirty days of November. There might be some NaNoWriMo folks out there who are also celebrating NaFaCaMo, but let's call a spade a spade and admit that if you are doing both (writing a novel and being a family caregiver) -- well -- we don't believe you. Despite the fact that President Obama wrote a very nice proclamation for this significant month (you can read it here), and I'm basically a sucker for everything that man does, including being recognized as a full-time caregiver of a disabled family member, my interest on the old blog is to tell it like it is and is means uniquely slanted (biased) toward the dark-humored, the rueful, the cut through the inspirational crap about being a full-time caregiver.

In the dark days of the last century when the internets were just a kernel of rice in the brain of Al Gore, my friend Jody, whom I had met in a mothers' support group at New York Hospital in that other big shitty, turned me on to a newsletter for mothers of children with significant disabilities. It was called MOH, or Mothers From Hell, and it was a perfect antidote to the treacly Mothers From Holland that was de rigueur at the time.  

Don't get me wrong. There are a myriad of blessings that come with being a full-time caregiver, and I've written literally hundreds if not thousands of posts here that testify to what I say is the honor of caring for someone who is entirely dependent on me.  I can tell you about resilience and virtue and strength and a community of human beings that are, without doubt,  the most courageous people on the planet. A designated NaFaCaMo calls for some levity, though, because -- well -- just because. I've just come out of a particularly grueling couple of months with Sophie in a sort of perpetual crisis that culminated in a fairly useless hospital stay that cost nearly $70,000 (so far, and I'm not joking). It took her approximately three weeks to recover from that stay and whatever was going on before she was admitted -- three weeks of barely being able to walk, of losing weight, of near-constant seizures in the early hours before dawn, among other atrocities. I'm thrilled to say here that she's turned a corner and is back in school with a spring in her step. It seems that the combination of increased Onfi and a new version of CBD and THC is doing something good, at least for now. I don't want to jinx it, though, so let's not dwell on this perhaps temporary hiatus other than to give thanks. Thanks!

It's taking me longer and longer to recover from these downturns, though, and can I tell you that it's not really Sophie -- or her disabilities -- that takes its toll. It's what we call the systems of care -- or lack thereof -- and the culture in general that makes our lives so difficult, when they're difficult. 

Hopefully, I can touch on some of these issues over the next month. I'd also love for you, dear Readers, and especially you dear Caregiver Readers, to tell me your stories. I want to know what your personal record is for changing wet bedsheets in the middle of the night or the greatest number of calls you've made to your insurance company about a particular charge. I'd love to know what outfits you've worn to IEPs (I myself wear a leotard and do a tightrope walking act) or your methods of dealing with constipation. How about doctors who refuse to acknowledge the efficacy of CBD or who downplay side effects of anticonvulsants? How about commercials for pharmaceuticals and making a case for medical necessity when you have to renew prescriptions at the drug store? What's the longest you've gone without a full night's sleep -- months? Days? Years? How about the siblings? How resilient are they? Did they learn how to buckle themselves into a five-point harness before they knew how to walk? How do you deal with the phrases of the well-intended -- the I don't know how you do its? the God knew what he was doing when He gave you [insert the name of your child], the God never gives you more than you can handle, or my personal favorite There's a reason for everything, and your daughter must be teaching you so much.

Let's hear about the marriages and the divorces -- hell, let's hear about the affairs. You spend a lot of time at home! There are no judgements here during NaFaCaMo! If you're a woman have you turned your home into a convent or cloister? 

And, here's the golden question that I know you've been asked at least two million times:



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