Wednesday, December 6, 2017
I'm typing this from Sophie's hospital room in Santa Monica where we arrived yesterday early afternoon after a visit to the pediatrician turned into a ride in an ambulance with Sophie struggling to breathe and a possible diagnosis of pneumonia.
Here's the good news: She doesn't have pneumonia.
Here's more good news: The care she received from the pediatrician, from the paramedics and all the ER docs and nurses as well as those attending her in the hospital has been impeccable. I just finished speaking with her attending doctor who stopped the oxygen and is refraining from giving her any more antibiotics as she is absolutely certain that there is no sign of infection. We might even get to go home later today or this evening.
Here's the bad news: This is the second time that Sophie has gotten into trouble with the increased secretions that are a side effect of the benzodiazepine that she's been taking for the last decade -- let's face it -- her entire life, more or less. Coupled with her reduced motor ability, she doesn't have the same capacity to clear the secretions and is probably aspirating more often than not. SO, I've been in touch with her neurologist and her regular doctor to tackle the problem. We are talking mechanized vests, oxygen for home and perhaps a palliative doctor. For those of you who might gasp at the word palliative, it's not the end-of-life kind of care but rather the kind of care that improves life quality as much as possible when you're dealing with a chronic condition. The fabulous attending physician is going to give me a referral to one, so we'll see how it all plays out.
It's been a hard few days. Ok. It's been a hard few weeks. Ok. It's been a hard few months. Ok. It's been a hard few years. Ok. It's been a hard couple of decades. Sophie is as resilient as hell, and that gives me strength. You know that I don't believe in an instrumental god that is directing the show, that is making things happen for good and for bad. My supplications are not directed toward that sort of help, and while I appreciate the prayers of others as good intentions, they do not comfort me nor do I believe they change the course of events. I am hard-pressed to even describe the incredible lifting of weight and sorrow and darkness from my mind and heart. When it happens it seems miraculous. I imagine it to be a kind of collective unconscious -- the love directed our way from family, from friends and those who come into and out of our lives -- a love that is in turn reflected outward.
I don't know why I am able to hold incredible sorrow and even despair along with joy and optimism, but I think it has something to do with what I call grace.
I feel much gratitude for what I believe is the imposition of grace, bestowed on me by Sophie and the years of caregiving, the relinquishing of false notions of control and illusion. Does that make sense?
As I've typed, Sophie's had several large seizures. It's not easy. Grace has nothing to do with being cured or even being "normal." I know next to nothing in the end, nor do the doctors, nor do the prayers or supplicants. Bad things happen all the time to very, very good people. Death is a certainty for all of us, and suffering, at some point in our lives, if not all, is as well. Grace has everything to do with healing, though, and when it collides with love -- well -- we're good. We're healed.
Monday, December 4, 2017
Dear Representative or Senator,
As a constituent who cares deeply about issues affecting people with intellectual and developmental disabilities (I/DD) like my daughter who has refractory epilepsy and severe developmental disabilities, I have concerns about the Tax Cuts and Jobs Act in its current form because of its impact on services for people with I/DD.
I cannot support the tax reform legislation in its current form because:
- The changes proposed to the charitable tax deduction reduce the ability of nonprofit disability service providers to fund important services for people with intellectual and developmental disabilities (I/DD)
- As the only other federal support for Medicaid long term services and supports, the House passed legislation removing the medical expense deduction could put significant strain on the Medicaid program that serves people with I/DD
- The changes to the unrelated business income tax (UBIT) impact the ability of nonprofit providers and their associations to maintain limited but important revenues
- The changes to state and local taxes would have a negative impact on certain states that obtain significant funding from these taxes for services for people with I/DD
- The House legislation's elimination of tax breaks on bond financing could significantly undermine the financing for affordable housing for people with I/DD
- The addition of $1.5 trillion to the national debt may be used to justify future cuts in Medicaid, Medicare, or Social Security which are the main federal programs that support people with intellectual and developmental disabilities.
As your office considers how to restructure our tax system, I wish to share with you tax reform principles by the American Network of Community Options and Resources (ANCOR), the national trade association for disability service providers. These principles seek to ensure the stability of services and supports that people with disabilities rely on to participate fully in society. I hope you will consider these principles and the well-being of people with intellectual and developmental disabilities as legislative tax discussions advance.
ANCOR Tax Reform Principles
1. Any process that includes changes to Medicaid should be accomplished through a process that affords sufficient opportunity for legislators, advocates, and constituents to review and provide feedback on the proposal and legislative language prior to passage.
2. Individual or corporate tax cuts or expenditures must not be paid for by cuts to Medicaid, Medicare, Social Security, or other mandatory or discretionary programs that promote independence, inclusion, and community living for people with disabilities.
3. Tax reform should not decrease revenue to an extent that revenue is insufficient to continue to fund the programs and services and supports for people with disabilities at current levels or above.
4. The charitable deduction should be maintained and improved for the non-profit sector which provides the majority of services and supports for people with disabilities.
5. Unrelated business income tax should be held harmless to protect the vital role of nonprofits and associations in the disability services sector.
I look forward to working with you to strengthen community services for people with intellectual and developmental disabilities - please reach out to me if you have any questions.
Here's a link for you to send your own letter.
Here's where you can call with a script. Do it. I beg you.
The Congressional Switchboard can help you identify your members of Congress and will connect you directly to their office - dial it at 202.224.3121 or 202.224.3091 (TTY). A short script you can use is: "I am a constituent who cares deeply about issues affecting people with disabilities. If you do not already oppose the tax reform bill coming for a vote today, please do so because it has provisions that would harm services for people with disabilities. Thank you for your hard work answering the phones."
Wednesday, November 29, 2017
I don't know about you, but I feel so weird these days, so out of sorts, so self-conscious and aware and filled with adrenaline and disgust and anger and -- should I go on? I miss blogging, too. I miss marking my days here and the casual way I'd throw out some thoughts and observations, a bit of poetry, a rant or two. I'm not tired of blogging or of blogs, either. I am preoccupied. I am so afraid of normalizing that POS running the country, the sycophants that support him, those that still maintain we must come together. Come together, my ass. I'm as overwhelmed as every other woman by the toppling of the patriarchy, too. When is the head dude, though, the Sexual Predator in Chief, going to get his due?
I'm baking a lot of cakes. I baked this one:
|Coconut Cake with Coconut Buttercream|
and I made five of these:
|Apple Toffee Crunch Cake with Cinnamon Buttercream|
I made about a million of these:
|yeast dough rolled in cinnamon sugar|
It came out like this:
|Cinnamon Pull-Apart Bread with Caramel Glaze|
Baking, unfortunately, does not alleviate the stress of the Repubs screwing us, over and over, now with their new tax plan which is really another version of their healthcare plan, which basically reinforces the direction the Disunited States of America is going which is a plutocracy. I want to say f*^k all of them, but I tire of cursing.
I also made the most killer cinnamon buttercream.
|Butter, sugar, egg whites, cinnamon|
Honestly, that stuff is nearly sexual. A silky sweet meringue that takes butter and transforms into something that melts on the tip of your tongue, just a trace.
I had my first paid gig at The Los Angeles Times on Saturday. Here's the link.
Sunday, November 26, 2017
In a 1984 Paris Review interview with the writer James Baldwin, he was asked whether he found it easier or more difficult to write out of anguish, specifically his utter despair after the death of Martin Luther King Jr. Baldwin replied, "No one works better out of anguish at all; that's an incredible literary conceit. I didn't think I could write at all. I didn't see any point to it. I was hurt...I can't even talk about it. I didn't know how to continue, didn't see my way clear." When I heard that this morning as I listened to the Paris Review podcast of the interview, it shot right through me, a kind of bolt of recognition and affirmation. When Sophie was diagnosed with infantile spasms nearly twenty-three years ago, she was not even three months old and I not quite thirty-two years, and it would be more than ten years before I'd write a single word about the experience despite the nearly twenty-seven years that I'd been writing almost daily. I've never been able to figure out why, nor to explain it -- in fact, when I did start writing again, nothing irritated me more than the comment I received over and over that you must find such comfort in writing, that it must be so therapeutic.
I thought about it today as I brushed my teeth, the whir of the brush in my brain a kind of provocation for thought, willy-nilly. My parents left yesterday after spending a few days here with us for Thanksgiving. It was a lovely time -- we seem to have figured out how to love one another despite our differences and perhaps because of them. My mother insisted a few times over the days she was here about a persimmon-colored blouse she wanted to buy me, something we'd both admired in a catalog, and I kept saying, no, I really don't need that or want it, and she kept saying, yes, I want you to have it, it's good to have nice things, but aside from letting her buy it for me because she wanted to and could, it occurred to me in my head, willy nilly, as I brushed my teeth this morning, after they'd left, that my perspective is profoundly different, that it's not just that nothing material really matters having gone through such anguish over so many years, but that having gone through such anguish over so many years, everything else matters. Do you get that?
Last week, the In Home Supportive Services worker came to our home to do the annual check-up. She was Armenian (the largest population of people of Armenian descent live in Los Angeles), and at some point during the mind-numbing process of signing papers and answering inane questions about Sophie's inabilities (I'm not saying disabilities because the questions are posed negatively), she looked into my eyes and said, Where are you from? and I told her that I had a Syrian grandfather, a Scotch English grandmother and two Italian grandparents. She nodded her head, said she saw it in my eyes and mentioned that Putin and Assad were together that day. I made a face. She asked, You don't like Putin and Assad? I said, Ummm. No. She asked, Why? I said, Because they're hideous people who have caused the deaths of millions of people. She said, Ah you would know, and I let it go, her perspective, as it was, focused on my very diluted ethnicity. I'm only telling you this, Reader, because that little exchange led to her telling me about her Christianity, about her worries as a mother to two grown sons, about her asking me whether I was happy and me replying that I was and her answering that I wasn't because I had Sophie and no one could be happy with a child like that.
Some of you out there will think that I should report her, that she was out of line, in the wrong line of work with such a perspective, but I only felt tired.
It'll make a good story, is what I thought, even as I calmly gave her mine.
Here it is. I wrote it down.
Thursday, November 16, 2017
I was scanning through some old posts from a few years ago and noticed one that is particularly relevant -- STILL -- to today. It has to do with government and entitlements and the ongoing threat we face from Republican economic policies and a culture that is all too willing to sacrifice the vulnerable while exalting the already fortunate.
I don't know what to do about this and feel not so much defeated as overwhelmed with the ongoingness of it. I'm currently working with a health insurance broker trying to figure out our 2018 health insurance options as our current plan raised our premium by 39%, making it unaffordable. The capitalists love to talk about "consumers" going "shopping" for health insurance, and "competitive rates," etc. -- all that market talk, reducing us to numbers. I can tell you that scrolling through plan benefits, trying to figure out what coverage would be for Sophie's various needs, reduced me to tears, and I'm no wimp.
I maintain that access to affordable healthcare is a right. I maintain that we shouldn't be looked on as consumers when we access healthcare. I maintain that shopping for healthcare insurance is ridiculous, that despite my college education, formidable intelligence and decades of experience navigating all the systems of care, I am literally overwhelmed by it.
What, really, do I know with my tiny little mother mind™?
If there's anything to substantiate the Buddhist notion of samsara, I guess it would be this.
Here's the post from a few years back, and the article that I referenced in the first paragraph could just as easily be replaced by any number of articles and notices in today's newspapers regarding the threats to Medicare, IHSS and SSI under the current Republican tax reform proposals:
I read this article this afternoon as I languished, a bit sick, at home. For the record, I did do some part time work and home-schooled Oliver in American history and writing. The article was titled Aid to Disabled Kids Surpasses Welfare and states that the amount of federal money going to disabled kids through Supplemental Security Income programs has surpassed traditional welfare programs. You can imagine what this means. There will be people (conservatives) talking about corruption and those who milk the system and rely on government benefits, who don't use their bootstraps properly, who go on vacations when they find out they've qualified for disability and who are otherwise, losers. They will claim that the increasing numbers of children diagnosed with mental health issues, ADHD and other disabilities should actually be parented differently.
There will be people (liberals) blasting the conservatives for once again targeting the vulnerable, blind to white collar corruption and to military expenditures and waste that probably surpass the GDP of most second and third world countries, much less welfare and SSI expenditures. They will talk about the shrinking middle class, how the poor, truly cut off from welfare as it was once known, depend on SSI to even make ends meet.
What you probably won't hear, though, are the voices of those who benefit from SSI programs, many of whom are, literally, without voice. You won't hear about how difficult it is to actually get the benefits, how much education you have to have to parse out the requirements, and in the absence of education, the sheer stamina and persistence to make sense of the paperwork, to navigate the system, to continue to care for the child with disabilities, to plan for her future with or without you. You won't hear the voices of those who have to continue to make a case for needing the money each year. You will hear that these people are working the system, making up disability so that they don't have to work, that their numbers are growing and America will go bankrupt dealing with them.
First of all, you know that I've a liberal voice, and my voice also happens to be Sophie's voice, since she doesn't have one of her own. Sophie began receiving SSI benefits monthly when she turned 18, the bulk of which I use to pay for the huge drug co-pays that her insurance company doesn't cover, any other medical treatments that her insurance company doesn't cover, her diaper wipes (I pay for her diapers with my own money even though they're covered under MediCal) and various toiletries, occasional clothing and apps for her iPad that she uses at school. Last month, I used part of the money to help pay for her two weeks at communication camp. I realize that some of this is luxury -- she could sit at home in her stroller (also partly paid for by SSI), next to me at my desk as I do my part time work instead of going to camp for three hours. Since I've never found a dentist that provides adequate dental care under Medi-Cal (Sophie receives dental insurance under Medi-Cal but none through our private insurer), I chose to continue to see our family dentist. It's expensive, and in order to keep Sophie's mouth healthy and because it's very difficult to brush her teeth adequately, we pay out of pocket every three months for a cleaning. The SSI money helps with that as well. Sophie's needs are met with a combination of government funds and those earned by her father and me, as well as generous donations toward her care given to us by my parents. I know that there are many, many people out there like us, making ends meet, not abusing the system and grateful for every bit of help -- both private and public. I know that without the combination of funding sources, many of us would have to resort to going into debt, to living far more stressful lives than we already do and to turning our children over to institutional care so that we, their caregivers, can try to find full-time jobs.
I understand that the system will always have corruption, and that some people will take advantage of that system, lie and cheat and steal in order to get something for free. I understand that part of my tax money is going to help the liars and the cheaters and the thieves, but I have a feeling that the vast majority of those that use these funds are doing so responsibly and because they very much need them. I understand that part of my tax money also goes to fund bombs and arms and war apparatus, even if I don't support those wars. It's a sort of price I pay to live in the country that I live in, a democracy where I supposedly vote for the representative that best works in my interest. I understand that people (and I know some of these people) who have millions of dollars but who are also veterans continue to collect what they're "owed," and while I believe that is pretty low-brow, even repellent, I also believe that my taxes go toward far more veterans who, after serving their country, are out of work, homeless, mentally ill, permanently injured or otherwise in need of them. For every Mitt Romney pumping money into tax havens or writing off dressage horses, there are countless businessmen and women getting into their cars and going to work, collecting their paychecks and paying their taxes.
What's the point of this post? Hell, if I know. I guess reading that article sent a frisson of fear into me. The fear is that the difficult job of caring for a person with disabilities in this country will get even more difficult. The fear is that this "difficulty" is really just a cultural construct -- that living in a nation that exalts individual responsibility to the exclusion of community makes my daughter's value recognizable only in dollar terms. The fear is the knowledge that she, and millions like her have to constantly prove their worth. I have certainly been proving her worth for the past nineteen years, and I suppose I'll have the stamina and grit to continue to do so, but damn. It's difficult.
Wednesday, November 15, 2017
|The Price of Addiction |
(deductible finally met in November because of MRI, etc., catalogued in The United States Medical System, Part One in a Series Through Photos
co-pay for drug over eight years has ranged from $0 to $780 according to the whims
of the United States Capitalist Medical System
where patients are consumers and the HHS Secretary is Big Pharma
Sunday, November 12, 2017
Wednesday, November 8, 2017
Look who decided to show up for dinner!
That's what Oliver said in his inimitable Big O'ish way last night when Saint Mirtha decided to let Sophie sit in her regular seat at the table instead of the wheelchair. She's been fed in the wheelchair for weeks and weeks, unable to sit up very well or swallow properly, but over the last week and since I weaned her a bit more from the benzo Onfi, she's gotten stronger.
I'm grateful for my children's sense of humor, for Sophie's irrepressible life, for trust in my own instincts, for the generosity of family and friends, for the moments of grace when relief comes out of nowhere, for Virginia and New Jersey this morning.
Most of all, I'm grateful for all my people who do this thing we do and for their children who inspire and honor us. It's National Family Caregivers Month (or National Fucking Family Caregivers Month, as my friend S calls it). Happy NaFuFaCaMo, all you MoFuFaCas!
What do I think? I think we're on the right path for NOW, and there's really only NOW.
My friend Carrie Link sent me this video this morning. Natalie Merchant's album Tigerlily was released on June 20, 1995. I listened to her song Wonder over and over throughout Sophie's infancy and childhood. I realized today when I looked up that date that it was the day we left the hospital after her diagnosis on the 14th of June, 1995.
As Carrie says, there are no accidents.
Sunday, November 5, 2017
See enough and write it down
Can I tell you who Sophie is and how I know? Can I tell you that she looks directly at me, her eyes dark pools her life behind them something vast even as it is cloistered? She loves the way trees blow in the wind the feel of beads slipping through her fingers like water and water, the ebb and flow of ocean tide. These days, even as she struggles to move, her left leg dragging, her eyes are as piercing as they've ever been. What is that?
Here's the plan: Wean the Onfi. She is over-medicated with it, the drug that I suspect is the culprit in her decline. Order The Ashton Manual (thank you Christy!) Play with the CBD oil and add in a bit of THC. Be grateful for the grace of friends, for mindfulness meditation, for love and resilience and the strength of the heart.
Onfi needs another name, a moniker of dread and dependency. I took away a small bit nearly two weeks ago, and this weekend was an extraordinary one. Sophie ate well, swallowed well, reached for her cup and drank well. She walked down the street with me and always her gaze -- her clear and resolute gaze. No seizures.
Monday, October 30, 2017
It looked like a flower a jewel a prism a kaleidoscope of pink and red and green a mustard yellow. So beautiful it brought tears to my eyes. This part here, The Neurologist said, should be like a bush and it's more like a fern. The language of plants. I stood behind him, peering over his shoulder. My daughter's brain a bloom on a screen, his finger (or was it a pen) brushing along its tendrils, a fern not a bush. Space, too. Too much space there and there. How do I write this or do I not write this? Of course I will write this, me with the words, the ease of them. Call a flower tree and a tree flower (so I thought, lying on my back in the green grass of childhood) and what if we were just God's dream (God, not god, back then) and this, that, was a sort of dream. Calling a brain bush and bush fern. Standing there looking over his shoulder, my daughter's brain a bloom on the screen. The word atrophy. The feathering of a fern where there should be bush. The word cerebellum. I felt sick to my stomach for a moment, standing there, the dots in front of my eyes. Or was it faint? I need to sit down, I said, stumbled around the wheelchair and sat on the couch. I closed my eyes when he spun around on his chair. He's a nice man, a smart man, an honest man. Interesting that it was the tears that flustered him, not the brain a bloom on a screen. That's the way they are. I closed my eyes, heard him rummaging and then leave the room. Back in, he handed me a stack of paper towels, the brown rough ones from the bathroom. I thought that was funny. I really did. I thought it was funny. I'll write it all down, I thought, and then out. I'll build some kind of tension here on the page to mimic that in the room in the brain a bloom on the screen. Atrophy of the cerebellum. We'll need to compare it to an earlier scan (that I'll have to find, to root out from the bowels of some other hospital). The language of medicine mixed up with the language of business the language of poetry. And I a master of all of it nodding my head words blooms from my mouth. On the written report: indicative of epilepsy treatment. I always knew it. The word treatment. Just to be clear: Sophie's recent magnetic resonance imaging showed a couple of troublesome spots, including atrophy of the cerebellum. This could account for her gradual decline in motor abilities (walking, coordinating movement, balance, swallowing). The cause is uncertain -- too many drugs? long-term use of benzodiazepines? underlying metabolic disorder? genetic mutation? -- as always.
How do I write what comes next? I still have some tricks up my sleeve, The Neurologist said, and I laughed. I really did. I thought it was funny. Should they use phrases like this? Me with the chalked hands and the pirouette toes up on the high wire for decades. You as spectator your breath held.
Saturday, October 21, 2017
I'm baking cakes again.
I made cupcakes today, too.
I've hatched a plan to make two specialty cakes a month and deliver them for free within a certain mile radius.
This month I've got a
Halloween Red Velvet Cake with Marshmallow Buttercream and Meringue Ghosts.
Here's a photo that I lifted from the internets. I have no idea where it came from, but I made one like it a year or so ago, and it's awfully cute.
Here's the flyer that I made to advertise the cake baking extravaganza.
I don't ship but I'll put you up for a night if you decide you need to have one.
Everyone Needs Cake™
Thursday, October 19, 2017
In Ring Three of The Greatest Show on Earth:
So, in keeping with the general zeitgeist, Sophie will be driving Uber from here on out. That's because she needs to start pulling her own weight and stop taking hand-outs. She's a drug addict as well and needs to take responsibility for her actions. As her parent and primary caregiver, I do, too.
We just received notice that our private insurance company, Blue Shield of California, is jacking up our plan 40%. According to my very experienced and reasonable broker, it's due, in large part, to the sabotaging of The Republican President (that's what I'm calling him now as he was voted in by those people and is tolerated by those people and is supported by those people) over the last nine months. Yes, it's a whole lot more complex than that, and premiums for private insurance policies continue to vex the greatest minds, but that's what They should be working on. But, hey, what do I know? I certainly don't want the gov'mint coming between me and my doctor.
I've come to the conclusion that Sophie is over-medicated, that her brain has been damaged by long-term usage of benzodiazepines and so we must continue to wean her from it.
In the meantime, I will be shelling out even more of a co-payment for the benzo due to new health insurance rules that only allow a 24 day supply instead of a 30 day supply (something about the liquid form and not being able to open a bottle or give part of a bottle) and so that means more money for the drugstore and the drug manufacturer and the insurance company, more money because the drug, ineffective in controlling seizures, is powerfully addictive and could literally kill Sophie if stopped. We are, basically, slaves to it and to the whole shebang, the Greatest Show on Earth.
Hence, the Uber gig. Who's driving with us? We're thinking we can fill it with clowns and drive it over a cliff.
Wednesday, October 18, 2017
|October 5, 2017|
MRI of the brain with anesthesia
Cedars Sinai Medical Center
Sophie, 22 year old woman
refractory epilepsy patient
Tuesday, October 17, 2017
Passion is the bridge that takes you from pain to change
Last week, I sat in Diane McDaniel's backyard studio and had a wonderful conversation for her really interesting podcast, REAL. I love that women everywhere are working and expressing themselves in novel ways, and I am honored to support those like Diane who are digging deep into life and helping to share stories.
Here's the link to the episode Elizabeth Aquino Who Am I Without All Of This on a few different distributors. Listen to the other episodes as well because you'll find so much that is interesting, stimulating, alive and REAL.
- iTunes: https://itunes.apple.
com/us/podcast/real-with- diane-mcdaniel/id1218912570? mt=2#episodeGuid=https%3A%2F%2 Frealcancer.blubrry.com%2F%3Fp %3D124
- Google Play: https://play.google.com/
music/m/ Dazwqyyyzu7yrfefb4j74i4djkq?t= Elizabeth_Aquino_Who_Am_I_ Without_All_of_This_-_REAL_ with_Diane_McDaniel-REAL_with_ Diane_McDaniel