Showing posts with label Disability. Show all posts
Showing posts with label Disability. Show all posts
Monday, May 25, 2020
It's Not Too Much To Ask You to Wear a F*^king Mask and Stay Home
I'm just going to repeat that:
It's not too much to ask you to wear a fucking mask and stay home.
The pandemic isn't "over," and life is not "going back to normal." What is "normal" is the craven irresponsibility of the privileged and even the not-so privileged. This is the high school that I graduated from back in the Stone Age. It was basically a one-room school-house then (hyperbole intentional since privilege was rarely recognized in the Stone Age) but is pretty much unrecognizable now. You can read the story here.
My take on this shit-show?
(Anonymous commenter -- you'll have to forgive me my anger as I know it offends you, makes you "exhausted") This pandemic is demonstrating with crystal clarity that the lives at risk are expendable. That if you are a person of color, a disabled person, an old person, a person who takes care of another, an "essential worker," you are EXPENDABLE.
WE are expendable.
The rest of you are "free" to do -- in what seems to be the most grotesque interpretation of freedom I've ever understood -- whatever the hell you want.
All is transactional.
So, go on with your best self, as they say.
Have a party.
Travel!
Get your hair cut.
Go bowling.
Go to the beach.
Go to church.
God will take care of you.
You've got to start somewhere.
Don't muzzle yourself. You're free.
Social distancing is a hoax.
Bill Gates is out to track all of us.
Get back to normal.
Make America great.
I'll say it again. America is terrible and exhausting.
Sometimes, it's not. Read this:
It Just Burns Me Up
Thursday, January 2, 2020
2020
This is my New Year's post.
On New Year's Day, Carl (aka The Bird Photographer) and I took Sophie to Solstice Canyon in Malibu because we read that it had an accessible path. It did have an accessible path, and the two of us took turns pushing Sophie up the steep grades, stopping every now and then to admire the yellow leaves, the bird calls and the grass-covered hills in the distance. I would have liked a view, but you had to do some serious, non-accessible climbing to see the Pacific, so Carl and I planned to come back another day. Afterward, we stopped at a fish shack restaurant on the PCH (that's Pacific Coast Highway for you non-Californians) and ate fried shrimp, grilled swordfish, grilled catfish, french fries, Cajun rice, coleslaw and salad. The restaurant was more "accessible" than accessible, so when we left, Carl had to make a path through the hordes of people waiting in line. He was helped by one guy who yelled out, "Watch your backs, folks! Coming through!" It must be the New Year kind of thing and all people filled with the resolutionary spirit because all the people parted, smiled, said encouraging things like No problem! How ya doing! Happy New Year! as we made our way through.
Here's the thing. It's been a hard year. It's been a hard decade. Hell, it's been a hard couple of decades.
But then there's now.
Who would have thought that on the first day of the year 2020 I would be divorced, walking a path with my daughter and a man with whom I've fallen deeply in love? Sophie's father -- my ex -- is devoted to Sophie, as she is to him, and I am grateful for that. I will say bluntly, though, that I had absolutely no expectation of finding happiness with anyone else. I had the usual post-fifty fears, both superficial and complex, but, frankly, the real concern was over who in their right mind would take up with someone whose life is a three-ring circus? There is baggage and then there's -- well -- baggage. I'm not saying Sophie is baggage, but the world of disability is not for the faint of heart. Sophie's made me who I am. Carl has a massive heart, and I am filled to bursting with gratitude.
Tuesday, December 3, 2019
When Giving is All We Have
I've been in a self-absorbed rut.
Today is Giving Tuesday.
I'm no philanthropist and have difficulty with the philanthropy model, so much so that I've long given up fund-raising for medical charities, etc. But today, on Giving Tuesday, I'm pulling my head out of my navel and raising money for a non-profit foundation that is particularly dear to my heart. It's the place where Sophie goes each day that she is able, a community of disabled young people and their aides or "coaches," who help them to access the community, to work, to be a part of something bigger than themselves and their diagnoses. The staff of Creative Steps/Aurelia Foundation expands these young people's lives and sees beyond their limitations, and it's a beautiful thing. They run on a shoestring budget, partially reimbursed by the State of California, but I learned yesterday that they also run on a consistent $350 a month per client deficit. I'm reaching out to you today to donate whatever you can to The Aurelia Foundation -- even a tiny amount is a good thing!
Here's Sophie's and my page:
Aurelia Foundation/Creative Steps
Here's a poem:
When Giving Is All We Have
One river gives
Its journey to the next.
Its journey to the next.
We give because someone gave to us.
We give because nobody gave to us.
We give because nobody gave to us.
We give because giving has changed us.
We give because giving could have changed us.
We give because giving could have changed us.
We have been better for it,
We have been wounded by it —
We have been wounded by it —
Giving has many faces: It is loud and quiet,
Big, though small, diamond in wood-nails.
Big, though small, diamond in wood-nails.
Its story is old, the plot worn and the pages too,
But we read this book, anyway, over and again:
But we read this book, anyway, over and again:
Giving is, first and every time, hand to hand,
Mine to yours, yours to mine.
Mine to yours, yours to mine.
You gave me blue and I gave you yellow.
Together we are simple green. You gave me
Together we are simple green. You gave me
What you did not have, and I gave you
What I had to give — together, we made
What I had to give — together, we made
Something greater from the difference.
From “A Small Story about the Sky,” by Alberto RĂos (Copper Canyon Press, 2015). Reprinted with permission from Copper Canyon Press.
Sunday, December 23, 2018
Making Pies
My podcast partner, Jason Lehmbeck suggested that I put up an end of year post, a Who Lives Like This?! list of our favorite caregiver podcasts, and I said, Jason! I'm busy! Taking care of Sophie and making cakes! Jason reminded me of the fabulous song by Patti Griffin called Making Pies which is now running through my head -- as I make cakes for the masses and care for Sophie. I think you, dear Reader, should listen while you read:
The past six months have been incredible for the Who Lives Like This?! podcast -- we've talked to so many lovely and amazing mothers and fathers of children and young adults with disabilities. We've talked to those in support positions, and we have several terrific guests coming up in the new year -- siblings, mothers, fathers, bakers, pie makers, business tycoons -- well -- not business tycoons. We'd love to have a caregiver on the show who's also a business tycoon, though, so if you know someone, let us know. Pie-baking, as you might guess, doesn't pay all the bills!
So here goes on a list of caregiver podcasts that we love.
| Ours truly www.wholiveslikethispodcast.com |
| Lomah www.lomah.org |
| Mama, Build Your Empire https://mamabuildyourempire.podbean.com |
| Mama Bear www.mapunknown.org |
| Learning Not To Swear www.tedlyde.libsyn.com |
| The Accessible Stall Podcast www.theaccessiblestall.com |
Reader, please leave a comment here or elsewhere if you know of a podcast that might appeal to this mighty group of caregivers. Share the post, too, if you are so inclined.
Now, I've got to go make pies.
You could cry or die
Or just make pies all day
I'm making pies
Making pies
Making pies
Making pies
Saturday, July 28, 2018
Saturday Evening Three-Line Movie Review
Far From the Tree*
directed by Rachel Dretzin
based on Andrew Solomon's Far From the Tree
It's a given that I'd rush to see this documentary, as I believe Andrew Solomon's book Far From the Tree should be at everyone's bedside and a probable replacement for the Gideon Bible which has been so grossly twisted by its most evangelical adherents. Solomon's book is about humanity for humanity, and in these grotesquely inhumane times when children with brown skin are kidnapped from their parents and put in confinement camps, Solomon's brilliant and compassionate view of difference and Dretzin's visual interpretation of that book, along with a sensitive portrayal of several families' experiences, make for profound viewing. Like the book, the documentary should resonate for everyone because it's about family and love and the gnarly twists and turns of life, for those who might interpret difference as tragedy and for those who know that to hold both tragedy and joy at once is the ultimate expression of grace.
* Andrew Solomon and several of the cast of the documentary attended the screening and answered questions afterward. Here are a couple of pictures that Carl took:
More Three-Line Movie Reviews:
Sorry to Bother You
RBG
Won't You Be My Neighbor?
Learning to Drive
Love and Mercy
Not a Three Line Movie Review
While We're Young
Ida
Force Majeur
Gone Girl
Saint Vincent
Get on Up
Begin Again
Chef
The Immigrant
Cesar Chavez
The Grand Budapest Hotel
Gloria
Labor Day
Philomena
Wednesday, July 25, 2018
We Will All Take Care of Us
A new podcast is up at Who Lives Like This?! and I think you'll find it intense and interesting. Jason and I talk with Josh Fyman whose daughter was diagnosed with Aicardi Syndrome when she was an infant. Aicardi is a seizure syndrome with a wide range of severity, and Josh's daughter is among the most severe. In and out of hospitals for much of her short life, often with life-threatening illness, she only began to maintain stability and health when the Fyman's decided to place her in a residential home. Anyone who is a caregiver to a child with severe disabilities has thought about how to best care for their child, and the prevailing culture informs us that living at home is what is best for that child. What if it's not, though? What if the situation is dire enough that one is forced to make a wrenching decision to live apart from one's child? Josh speaks honestly and eloquently about his own family's decision. My preconceived beliefs about this subject were blown wide open, as was my heart.
| Read more and get the link to the podcast here |
It's a difficult subject -- maybe even the most difficult subject outside of death that we caregivers wrestle with nearly every day. It never goes away, actually, yet morphs into truly existential questions. Who will take care of her when I can't do it any longer? Who will take care of her when I die? How will I do this and for how long can I do this? Will I be able to afford to take care of her for the rest of her life and mine and what are the costs?
Here's the bottom line. We live in a country -- a world -- that pays short shrift to the lives of persons with disabilities. Where we live, even down to the actual state in this wealthy, enlightened country, determines the level of quality of our healthcare. We have laws to prevent discrimination against the disabled and to ensure their freedoms and dignity, but we are forced to be vigilant in defending those laws in an increasingly transactional world.
Anyone can acquire a disability or become disabled at any point in a life. Recognizing this is an important step in removing the fear of the Other. You know what I'm talking about.
What can you do to help? You can participate in our political system by writing and calling your representatives and holding them accountable to their disabled constituents, especially when leaders in the disability community give you the heads up. You can pay attention. You can reach out to disabled persons in your own communities, get to know them and include them.
You can listen to these podcasts and stories, help support caregivers' efforts to make the lives of their children and families better. You can watch this astounding video that smacks of hard truths.
Friday, July 6, 2018
Who Lives Like This?! Podcast (with no "f*^ks" given)
| Ted Lyde |
Something about the word fuck and Facebook and algorithms and something something something, but we had to change the name of the podcast to Who Lives Like This?!! which is, actually, the original question screamed by young Oliver back in the day. Since we took the word fuck out of the title, though, our Facebook visits have multiplied considerably, so I guess we've succumbed to hive mind/Big Brother Facebook or whatever epithets you want to hurl at social media. Social media. It can be immensely good, you know, connecting those who ordinarily couldn't connect. So spare me how much you hate Facebook -- it's provided an immense service to many people in the disability world.
Just don't say fuck.
This week's podcast is a conversation with comedian Ted Lyde. Ted is hilarious. Some of you might remember him recording a conversation with me on his own podcast which is, ironically, called Learning Not to Swear. He's a sweet man, too, and a devoted father to his two children, one of whom has special healthcare needs. Fathers of children with disabilities are so rarely applauded or even discussed, but Jason and I intend to talk to many of them. Ted spoke of his devotion to his family and to what it means to sacrifice one's personal needs and or dreams. The conversation was so stimulating for me because it was two fathers talking. I was surprised -- to tell you the truth -- surprised by their candor and the ease they had in expressing their vulnerabilities. I'll wager that caregiving in general is the great equalizer as far as breaking you down and forcing you to come to terms with who you are and who you want to be.
It's good stuff, as the young ones say. Or maybe that's the old ones.
Please listen to the podcast, subscribe to it, read our blog, check out the growing list of resources, share the info, review us on iTunes and do your thing on social media. We're not making money (at least, yet) with this podcast, but we are building a community. We're talking, crying and laughing together. We need you to join us, whether you have a child with disability or not. You will probably become a caregiver one day or be cared for yourself --
Here's the link to the website. From there you can access the podcast either through iTunes or SoundCloud.
Thank you for helping us to share Who Lives Like This?!
Wednesday, March 7, 2018
Sophie's Birthday Eve Reflections
Sophie will be 23 years old tomorrow, March 8th. Everyone says, I can't believe it! or they say, My God, how time flies! It's hard to believe that she's 23 years old! Sophie would if she could and I will tell you that it's not hard for us to believe that she's 23 years old, that we feel every second of those 23 years, that they have not flown by even for one moment, that she was a tiny baby and I her 31-year old mother in another lifetime, eons and eons ago.
We are filled up with 23 years, exhausted and exhilarated and indomitable.
Richard Engel, the chief foreign correspondent of NBC News has a very young son with Rett Syndrome. Rett is one of the many disorders that we ruled out as a diagnosis for Sophie, back in the early days when the powers that be had discovered a gene marker for it. Sophie tested negative for that particular mutation even as she had many of the clinical characteristics of Rett Syndrome. Since those days, they have found other mutations related to Rett Syndrome, but I admit to being lazy about testing Sophie for them. It has something to do with my ambivalence about the medical community, about what it means to fix and to cure. That's a post for another day.
Mr. Engel has written a beautiful piece about his experience fathering this special child and persuasively argues that his experience as a war correspondent and knowledge of PTSD parallels that of this new parenting journey. You can read it here.
On the eve of Sophie's 23rd birthday, I confess to reading the article with a bit of an eye roll -- well, not exactly an eye roll but more a sigh. I imagine that fellow veterans (war imagery always irritates me, but it's appropriate here) will understand. What struck me, on the eve of Sophie's 23rd birthday, is how innocent and heart-ripping Mr. Engel's yearnings and aspirations are and how dim his understanding of the journey ahead. That is as it should be. I don't mean just the trials and struggles, the cycles of grief and loss and anger and acceptance but rather the knowledge that comes from those cycles, and that contrary to what the psychologists tell you, they repeat themselves over and over and over. Despite the beauty of his prose and the exquisite sensitivity and vulnerability he reveals, he has no idea that he might one day, like we veterans, realize that his love for his son has absolutely nothing to do with curing him.
Tuesday, February 13, 2018
Rhetorical Questions, Part 465,789 with Photos
1. Why is the process of finding, paying for and getting a wheelchair-accessible vehicle so labyrinthine?
or
Why is the process for finding, paying for and getting a wheelchair so labyrinthine?
2. Why does the potential advent of Clobazam Oral Soluble Film not excite me?
or
Why does the potential for an easier delivery of Onfi (that's clobazam) -- likened to a dissolving postage-stamp sized film -- make me die a little inside.
| Jimi Hendrix Acid Tabs image found on the interwebs |
(HINT: It's not because of Jimi Hendrix or LSD)
These are rhetorical questions.
3. Why are we able to launch a rocket into space with a luxury car inside of it?
or
Why does this make me feel weary?
| Elon Musk's recent venture |
4. Why do we still have to pierce the skin with a primitive needle to get to a vein yet are able to inject a nuclear substance into that vein which will then carry it to the brain where it will light up metabolic pathways and provide information?
| Vintage photo of brain imaging equipment |
5. Why did Sophie's most recent bout of seizures stop when I gave her a double dose of cannabis medicine, yet the Powers That Be maintain it has no medicinal benefit?
These are rhetorical questions.
Tiny little mother minds™ ask none but those.
Thursday, December 21, 2017
White Elephants
Last night, the wind was whipping around the Los Angeles streets, cold for these parts. We had been at a white elephant party, a silly affair with beloved friends. Sophie has been good. She can't walk too well but she's seizure-free for the last ten days or so and is preternaturally alert. Maybe even more but who's counting? I weaned her a bit more from the benzo, so who knows when the withdrawal seizures will kick in. I have also added CBDA to her regimen of cannabis medicine. Maybe she'll never have another seizure and live happily ever after. The boys helped me to bring her in from the car, and maybe it was a let-down from the party and maybe it was how difficult it is to maneuver her around (I mean really difficult despite her weighing only 72 pounds), but one of them had her and one of them worked on hauling the wheelchair from the back of the car and I fumbled with the white elephants and Sophie's bag and then the alarm and the door, and I heard Oliver say Hey Henry aren't you glad to be back from college? and there was rue in his voice and maybe it was the fuckery of the day, and maybe it was the wind but it gave me a jolt and everything everything that I am and made was wrapped in rue for as long as it took me to disarm the alarm and usher them into the house.
Listen to all, plucking a feather from every passing goose but follow no one absolutely, goes a Chinese proverb.
Wednesday, December 20, 2017
Smashing the Plutocracy
I'm not saying anything else about What Happened Today in Terrible America, other than the plutocrats have successfully passed their tax scam on the backs of the vulnerable, bending over backwards with their proverbial asses for the ruling members of the Kochacracy.
I'm an angry caregiver and mother who knows only a bit about a certain kind of struggle but enough to respond.
Here's a statement from The Arc, an organization whose mission is to promote and protect the rights and dignity of persons with cognitive and intellectual disabilities.
The Arc Responds to Senate Passage of the Tax Cuts and Jobs Act “Each vote in favor of this bill was a vote against constituents with disabilities”
Posted on by The Arc
Washington, DC – The Arc released the following statement in response to Senate passage of the Tax Cuts and Jobs Act:
“Today both chambers of Congress rushed to pass an irresponsible tax plan. By reducing revenue by at least $1.5 trillion, the Tax Cuts and Jobs Act increases the pressure to cut Medicaid and other programs that are critical to the lives of people with intellectual and developmental disabilities. Each vote in favor of this bill was a vote against constituents with disabilities and sets the wheels in motion to quite possibly go back in time to an era when people with disabilities had little opportunity to live a life of their choosing, in the community.
“The Tax Cuts and Jobs Act was crafted behind closed doors and the final draft of this bill was only released publicly on Friday. The rush by the Senate to pass this bill mere hours after the House of Representatives vote makes it clear that the architects of this bill were trying to hide something from the American public.
“This year the disability rights community has endured ongoing Congressional attacks that could have jeopardized the health and well-being of individuals with intellectual and developmental disabilities. And now, thanks to the enormous revenue losses that will be created by this bill, we must prepare to protect critical programs like Medicaid which will likely be on the chopping block in 2018. We are grateful to the Members of Congress who stood up for their constituents with disabilities by opposing this bill and we look to them as our greatest allies as our fight continues. While this bill must return to the House of Representatives once more, it is expected to be signed into law. Passage of this bill will not change the resolve of The Arc’s network. As we have shown time and time again, we are a force to be reckoned with. We will remain active in our opposition to attacks on the basic rights and health of people with disabilities and their families,” said Peter Berns, CEO, The Arc.
In these dark times, when each bit of news is more debilitating than the last, when those of us who have fought lifetimes to not just keep our children alive but to maintain their dignity in the face of a culture that would deem them less than human -- well -- the only thing that helps is to keep going and not give up, to be angry and to be brave in showing that anger by continuing the work to improve this goddamn country.
You can get involved by supporting the Arc's activities here. When citizens help to protect the rights and lives of their country's most vulnerable, they are a great people and members of a great country. I really believe that otherwise they are damned, slaves to something rotten.
Wednesday, December 6, 2017
The Grace of Caregiving
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.
Labels:
caregiving,
Disability,
grace,
hospital stay,
love,
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Sophie
Thursday, November 16, 2017
The Samsara of Healthcare
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.
Thursday, May 18, 2017
What Does It Look Like When We Think?
We shall probably get nearest to the truth if we think of the conscious and personal psyche as resting upon the broad basis of an inherited and universal psychic disposition which is as such unconscious, and that our personal psyche bears the same relation to the collective psyche as the individual to society.
Carl Jung
Your visions will become clear only when you can look into your own heart. Who looks outside, dreams; who looks inside, awakes.
Carl Jung
This won't be pretty. I had a dream the night I brought Sophie back from the hospital last week. The dream came in the early hours of the morning, after I'd woken and fallen back to sleep. That's the time for the most vivid of dreams, in my experience, when I most hope to not just fall asleep but into lucidity. Lucid dreaming. There was something going on, and I was somewhere, with someone and then there was just shit. I imagine that got your attention because -- really -- who wants to hear about someone's dream? But the shit. What's that about? I'm telling you that that's what I dreamt. I love the word dreamt, that emphatic t. I dreamt of shit oozing out from under my fingernails. There's no other way I can write that, although I tried. This won't be pretty. I dreamt of shit oozing out from under my fingernails. A dream for a therapist, you might be thinking. I thought so, too. I certainly wouldn't tell it here. What could be made of it? I had, after all, been in the shits with Sophie, had taken shit from The Neurologist, was sick of all the shit we'd been through. I was tired of shit. It was oozing out from under my fingernails. I am lucid. I am also connected to Sophie, and she is connected to me. How do you know what she needs? people ask. How does she communicate? or What does she know? I say maybe everything or maybe nothing. I know everything because I see what it looks like when she thinks. She's told me things or told me thinks with her eyes. I dreamt of shit oozing out from under my fingernails and thought about it for a few days and then stopped. How do I write this? I guess I just write this. Right this. Right, this. Seizures and benzos and inactivity cause constipation. This has been an ongoing problem for much of Sophie's life, but it pales, of course, in importance, to the seizures, to the other shit. Until it doesn't. Still, I can't write this. We relieved Sophie of her constipation, and the result was astounding. The literal shit was astounding. She is, like that, better. I don't even know what to say, but I do know what to think.
Labels:
communication,
consciousness,
Disability,
dreams,
health,
Jung,
musings,
Sophie
Tuesday, April 18, 2017
Identity is Fluid
So, this is a picture of me and newborn Sophie in March of 1995. I found it this morning when I was rummaging around in a drawer on my desk. It was precisely twenty-two years ago and less than three months from the day that life as I knew it would begin to unravel. As a friend put it: BTSHTF.*
When I see these old photos of The Time Before, I can't help but peer at them in a sort of writerly self-absorbed searching for the meaning of the whole clusterfu**k that we call life kind of way. I'm constantly wrestling with identity --what it is, exactly, that makes us who we were, who we are, what makes us human. I can remember who that young woman in the picture was if I think hard enough, and lately my life's strange and beautiful circumstances have reminded me of her, too -- but I believe we hold some kind of essence that is constant even in inconstancy, if that makes sense. I will go out on the proverbial limb here to include Sophie as well. That baby I'm holding was very different from the baby that was diagnosed with infantile spasms a couple of months later. I remember thinking in the months that followed that I'd been given a new baby, so violent were the expectations up-ended. Bless my sweet heart. I don't remember when I realized that Sophie's essence was intact, but today, twenty-two years later, I'm thinking about how identity is fluid, and it leaks out of the eyes and down the face from some kind of deep dark well.
Identity, you remember, can be fluid.
At worst, the seventeen minutes I spent at the facility was a kind of Monty Python scene of absurdity with tinges of Ingmar Bergman and the careening humanity of Fellini. Know that places like this are where WE AS A CULTURE HAVE CONSIGNED OUR FELLOW HUMANS WITH DEVELOPMENTAL DISABILITIES, at least those who aren't from wealthy families (and I mean wealthy, as in rich as shit). These are the places that WE AS A CULTURE LEAVE TO POLITICIANS TO FUND, TO HACK AWAY AND MARGINALIZE. At best, visiting Bleak House was the sort of experience that has helped to define me as a person and a writer, however self-absorbed.
I lifted my head from the steering wheel after crying there for a moment or two and realized that it'd be interesting to take a photo twenty-two years ATSHTF.** If identity is fluid, it is here, leaking out of the eyes and down the face from some kind of deep dark well.
Identity is fluid. Essence is intact.
*Before The Shit Hit The Fan
**After The Shit Hit The Fan
Saturday, April 8, 2017
Active Empathy and Some Prom Photos
Have I told ya'll about our Indivisible group called Active Empathy? Indivisible is the national group that is resisting Trump's agenda in a methodical way. Active Empathy is what our local group is called, and a small group of us, including the four gorgeous founders, meet weekly to plan the BIG meeting which happens to be this afternoon. It's our second one, and we hope to galvanize people to really participate in the resistance. If you're local, please come or stay involved by getting our weekly emails. We have a facebook page and a website that are works in progress.
Activeempathy.org
Yours truly is heading up the Healthcare/Disability Rights working group. I'm using today's meeting to encourage people to be educated about healthcare law as it now exists, to know what Medicaid is, what block grants are, what single-payer insurance is, etc. etc. Education is everything, isn't it? It's everything, and we live under a regime that is not only ignorant but actively promotes ignorance. We're also, as working group heads, going to give our groups at least one ACTION item to complete this week. I know from the years of advocacy work that I did in disability and special needs healthcare, that doing one thing, however small, is essential and that this one thing should be done within days of getting all charged up and excited. One small thing.
So that's what's happening around these parts today.
On another note, I don't think I showed you these photos of my gorgeous son and his date from the prom last weekend. They appeared on Instagram and Facebook, but most of you who read the old blog are sane avoiders of social media, so here's my pride and joy, the light of my life, the little boy turned to man:
Sunday, April 2, 2017
How We Do It, Part ?
| Girl in wheelchair in sunlight, bookshelves, a wide ocean-green tile table with a pitcher of lilacs |
I'm reading Molly McCully Brown's new book of poetry. It's called The Virginia State Colony for Epileptics and Feeble-Minded, and I'm waiting to spoon oatmeal into Sophie's mouth as she seizes in the sun. We're in our dining room, and everything is beautiful. These are partial seizures. Her eyes are wide open with a look of surprise. Her arms fly out every ten seconds or so, her hands cupped. Her hum is a beat longer right before the spasm. I am patient, reading and glancing, glancing and reading. I look into her eyes in between glances. They are glassy, my own (eyes and glasses) stare out, not her. I tell her it's okay.
The Central Virginia Training Center
formerly The Virginia State Colony for Epileptics and Feebleminded
Whatever it is—
home or hospital,
graveyard or asylum,
government facility or great
tract of land slowly ceding
itself back to dust—
its church is a low-slung brick box
with a single window,
a white piece of plywood
labeled chapel, and a locked door.
Whatever it is,
my mother and I ride along
its red roads in February
with the windows down:
this place looks lived in,
that one has stiff, gray curtains
in the window, a roof caving in.
We see a small group moving
in the channel between one building
and the next, bowing in an absent wind.
He is in a wheelchair, she is stumbling,
pushing a pram from decades ago,
coal black and wrong. There is no way
it holds a baby. Behind them,
a few more shuffling bodies in coats
I am my own kind of damaged there,
looking out the right-hand window.
Spastic, palsied and off-balance,
I'm taking crooked notes about this place.
It is the land where he is buried, the place
she spent her whole life, the room
where they made it impossible
for her to have children.
It is the colony where he did not learn to read,
but did paint every single slat of fence
you see that shade of yellow.
The place she didn't want to leave
when she finally could,
because she'd lived there fifty years,
and couldn't drive a car, or remember
the outside, or trust anyone
to touch her gently.
And, by some accident of luck or grace,
some window less than half a century wide,
it is my backyard but not what happened
to my body—
Some of you will think, why would you read such a book? Sophie is seizing in the sun as I read. As she seizes in the sun, her eyes glassy, I know she has visions. There is an angel in the tree just outside the window and in her eyes, some bit of glitter. The word glint. I know she sees something more than I, I who see only purple lilacs in her eyes. In some far-off time or long ago, she might be have been a saint. She might have had visions, cured the sick, seen Mary in the garden, been Joan of Arc leading men into right. If she'd been allowed to be an epileptic, if there had been no fixing. No drugs. She might have lived not terribly but terrible (formidable in nature). She might have been burned, though, alive. We've had advancements, they say. There have been great advancements in the field of neurology, a medical paper insists. The word insist. I think of those saints with their hands held up and toward the sky. Appeal or protest or insist. Mary's hands lie crossed over her stomach when the Angel Gabriel visits, as he tells her the terrible news. Formidable in nature.
These are the thoughts that come to me as I sit waiting for Sophie to stop seizing. I am reading this book of poems about a terrible place where epileptics and the feeble-minded (Sophie) were locked up and hidden away, sterilized. This happened even into the late twentieth century. The Virginia State Colony for Epileptics and Feebleminded. Sophie's spasms stop with a sigh and release. If she had wings, they would rustle as she settled. I can feed her the oatmeal now.
You see where I'm going. Instead of terror, dyskinesia, paranoid delusions, suffering, it is visions, divinity, miracle, the heady scent of lilacs.
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