This Blog Still Exists

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.

Perspective. 

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. 

Pause.

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.

Cat on a Hot Tin Roof That Jack Built, Part Three***

There's the house that Jack built that consists of these inane back and forths with the company that is going to administer the EEG, Sophie's doctor and the insurance company. There's also another house that Jack is building that consists of inane back and forths with the company that is going to provide the wheelchair for Sophie, Sophie's doctor, the insurance company, California Children's Services and Medi-Cal. And today, to top it all off, I got an email from Sophie's service coordinator at the Regional Center (unique to California) asking me to account for the 14 hours a month of respite that we are allotted at a little more than $9.00 an hour, as well as how it fits in with her IHSS hours and her daily activities. I was asked to fill out a weekly schedule, hour by hour, of Sophie's day -- for 24 hours. She attached an excel sheet as an example of what she expected me to do. Please note that I keep careful records, as I'm supposed to do, for all the funding that Sophie gets. I fill out timecards, scan them and send them in when I'm supposed to as well. And if you're a newbie to the houses that Jack builds, these particular services are wonderful -- and entirely necessary,as I'd really, really go insane if I didn't have them. The ultimate purpose is to enable me to stay at home with Sophie and to enable Sophie to stay at home instead of surrendering her care to the state -- or one of the other houses that Jack has built. I will add that any doubters might consider my own tax-paying ability, my own relinquished career dreams, my literal ability to have a full-time job and remain flexible to care for Sophie daily -- and deal with all of this bullshit, too.

I understand the necessity of weeding out the bilkers, the cheats, those who are eating bonbons or even those who are very wealthy yet still claim benefits. But Sweet Jesus God and Good Lord and Dear Lord Almighty and Help me, Rhonda.

I forwarded the email to my friend and comrade S in New York City whose caregiving duties would curl the tiny little hairs on your toes if I told you about some of them, and she of the insane sense of humor quickly sent this back -- probably while she was on hold with the New York City transit system or one of the many nursing agencies that she deals with daily. Her suggestions on how I should respond to the caseworker's request made me laugh out loud and cry a little, to tell you the truth, in gratitude for what saves me in the end: laughter and friendship. The only thing I've changed is the name of my "caseworker." Let's call her Joan.

Dear Joan,

I spend those hours in passionate rapture with Javier Bardem. Do you need more precise details than that?

Love, Elizabeth

Dear Joan,

I spend those hours eating spaghetti. With clam sauce. I can send the recipe if necessary.

Love, Elizabeth

Dear Joan,

I spend those hours crying. Would you like me to account for the number of tears, Kleenex used, and times I blew my nose? Please advise.

Love, Elizabeth

Dear Joan,

I spend those hours writing little ditties about the insanity of it all. My next song is actually dedicated to you.

Love, Elizabeth

***Long time readers of a moon, worn as if it had been a shell, might have noticed that I post the above photo quite a bit on this blog. Elizabeth Taylor's Maggie the Cat, particularly in that photo, captures all of the languour and attitude and sexiness that reside within me, that apparently the Powers That Be are determined to extinguish in their belief that my life consists of lounging in a doorway in my slip, a bottle of alcohol just out of sight along with Paul Newman languishing on a bed with his broken leg, not to mention Richard Burton off-set with some new jewelry.  I hope that if I keep calling her up and posting her picture, I might not lose sight of that.

Menial tasks, musing and minutia

Sophie qualifies for In Home Supportive Services funding, and as her primary caregiver, I am her provider. I am actually paid for this, and I couldn't be more grateful for it. Recently, though, IHSS changed the way timesheets are submitted, and over the last couple of months, they've sent out approximately 3,456,789 notices regarding the upcoming changes with sample time sheets, and more than 2,134,678 phone calls alerting us to the changes as well. I believe there was also a summit that addressed the change, but I missed it. I believe I've successfully filled out my first new time sheet but was struck by the old-fashioned Cut and Remove Before Mailing instruction. Surely they don't mean with scissors? I thought to myself this morning, looking for a perforation in the form. But, indeed, one must actually find a pair of scissors in one's home and neatly trim off the dotted edges, and while I did so I bowed my head in contemplation of the various skills that have stood me well during the last eighteen, often interminable years. One of them is finger dexterity, the other a careful attention to detail, and a third the ability to be mindful in all tasks and simultaneously struck with the absurdity of all of it. Every last bit.

Buster Keaton, absurd behind bars

I'm currently involved in a scintillating argument with the Powers that Be, trying to prove that an erroneous statement on an important document that says "mild retardation" should actually say "severe retardation" and thus be shuffled onto another pile altogether, the pile that warrants a bit more help, some protective supervision is what it's called and might be the cause, the reason for the extra help to prevent the sort of fall that causes bloody noses, bruised and bumped. Said argument entails numerous telephone conversations and back and forths, the requesting of letters and papers with official stamps, the clock keeps ticking eighteen months, the choice between acceptance of mild and wanting severe making my heart shrink, grow cold and a layer of bars.

Heartless on Heart Day

A Great Depression Soup Line

Are you as confused as I am when you hear about Republican efforts to privatize Social Security? Periodically, I get those little notices in the mail that tell me how much money I will receive when I retire, based on how much I've earned so far. When I look at the amount, I sigh and file the paper away, hoping that one day I'll be able to work more -- which brings me to Sophie, the reason, however worthy, that I am unable to make a more solid contribution to our family's livelihood. Many of us who care for our children with special healthcare needs can't properly enter the workforce and use our education and skills because of the difficulties of finding proper childcare, the expense and quality of that care and/or the instability of our children's medical situations. We navigate all the complex systems of care and file papers and negotiate services only to eventually face catastrophic cuts in these services in the name of "balanced budgets" or, worse, "freedom from government," as the hated (and, yes, I do hate them and know that I've lost readers here because of my stated strong feelings against tea partiers) Tea Party and its supporters call it. As a disabled person, Sophie will qualify for Social Security benefits at eighteen. She currently receives in-home supportive services that enable her to be cared for at home as opposed to an institution, like she might have been many years before we, as a country were enlightened by the notion that it is civilized to care for our most vulnerable citizens, the elderly, the sick, the disabled.

Many of these social safety nets are being decimated, their necessity and humanity all but stifled under rhetoric, fear and political bullshit. And while I understand there is much graft, corruption and misuse of government funds, I firmly believe we can root that out without cutting these programs. Bernie Sanders, the great independent senator from Vermont wrote a beautiful, informative op-Ed piece in today's Los Angeles Times about Social Security that I hope you'll take the time to read, even if you are a tea partier.