Applying for SSI, Day One

It's begun. I emailed Sally over at Maggie's World with a plea for advice. She wrote me back with her usual fantastic sense of humor, walked me through it, and so I began. I labored for nearly an hour on the computer, filling out one million boxes and simultaneously waited for nearly fifteen minutes on hold with the Social Security office trying to make an appointment. Given that I was disconnected mysteriously from that call and then felt faint at the prospect of filling out Sophie's various hospitalizations -- do I need to go through the files I have in that white filing cabinet in the kitchen or do I need to contact the miasma that is the administration of UCLA?  -- I've decided to dissociate from the "work" I did and change the sheets on my bed.

Reader, what are you up to?

I'm home again in Los Angeles after a perfect weekend in San Francisco and just outside of it. I spent most of the time hanging out at my dear friend Jody's house. I wore my pajamas until noon, and she lay on my bed and we talked and talked. Her husband made delicious coffee. We went to a ridiculously fancy restaurant on Friday night in San Francisco and ate tiny portions of too-rich and fussy food. We went to a beautiful benefit for a school for kids with severe disabilities -- the school where our darling Lueza attended -- and I sat next to Jody and cried when the slide show ended on her soulful face. Despite the sorrow of Lueza's absence, and it was palpable, the love that surrounded that child fills her home still, and I can honestly say that I have not felt so relaxed and happy and at ease in years. Thank you, Jody and Jacek, for your warmth and hospitality, for your beautiful home and for being such steadfast friends.

We woke up this morning and visited Jody's good friend, ate the most amazing homemade biscuits and orange marmalade (honestly, I could have eaten a jar of it) and sat out on a high porch in the hot sunshine, laughing and talking. After that, Jody drove me into the city to my blogger friend Sally's house where the famous Maggie lives, and after listening to Maggie's jokes and chatting a bit in their wonderfully quaint San Francisco home, Sally drove me to City Lights, where I raptured in the poetry room upstairs and purchased a small stack of black and white postcards of poets and a copy of Jack Gilbert's The Dance Most of All.

Sally and I walked to North Beach and ate eggplant parmigiana sandwiches at a corner bar and continued a conversation that lasted all the way through lunch and to the airport several hours later when she dropped me off and we decided that meeting one another was exactly what we had expected and that we'd known each other forever. 


Reader, I've a perfect score on melding my real life and my blogging life as every single blogger I've met personally has been an unequivocal pleasure. I'm awed by this and very, very grateful.

This makes me laugh

and remember when I drove a woman to a school meeting and she asked me why I had a handicapped placard in my car. I told her that my daughter was disabled due to severe epilepsy and the woman said, They give you a placard for that? Whether it was a testament to ignorance about the more severe forms of epilepsy or just gauche, I, being the weirdo that I am, wasn't insulted and exulted rather in the beauty of the anecdote. Because that's how people like me cope and, if we're lucky, fuel ourselves to write.

I saw this particular poster over at Maggie World and asked Maggie's mother where I could find it.

I think I'm going to order one.

There's a difference between a closed library and being able to get out of bed on your own,

writes Sally over at Maggie World. Sally is the mother of a teenage girl with severe disabilities, an attorney and an impassioned advocate for children and adults with disabilities. In her brief yet powerful blog post yesterday, she addresses the draconian cuts in services and entitlements for children like hers and mine as well as senior citizens. She recognizes, as I do, that the California budget is in dire straits and that we all must tighten our belts, to use a trite phrase.

But she feels, as I do, that those children and adults with disabilities -- the most vulnerable in our state and country -- have no belts to tighten.

I hope you'll read Maggie's post, and if you're a Californian, tighten your belt all you can but please, please support those who cannot.

Write your assemblyman; write your state senator. Do something.

Maggie's World Touching Mine

Two Jewish women, facing each other in Tunisia

Though there are thousands of parents similarly situated, society really does not have a convenient slot for us. We are in between slots. Though the focus of our life is caregiving for our children, we do not really fall into the “stay at home mom” category. But we don't work outside the home so we are not professionals either. We are knowledgeable unlicensed medical providers and social workers.

We are often exhausted and stressed. This is the one category that people apply. Always. Any justifiable complaint or concern we raise is immediately attributed to the stress we are under. Yes, we are under stress, but sometimes - just sometimes – there might be something more. Having someone decide that the stress of my “situation” is the only driving factor in my life disrespects me as a person as well as the hard work I do every day. That disrespect is difficult (or impossible) to tolerate.

This is an except of an excellent, provocative post written by Sally, the mother of Maggie at Maggie's World. As I traipsed around the city today, doing the balancing act of normal and not, her words rang true, strengthening me. Go HERE to read more (and leave a shout-out for Miss Maggie who will be undergoing a procedure, one of countless hospitalizations that she's had to endure).