Waiting In the Woods

While he waits for his disability ruling, my oldest friend lives in a mother-in-law cottage in my backyard. I met him long ago, sometime in a magnolia-petal-strewn Southern Louisiana childhood  (he remembers that I was trying to keep kids from stepping on ants crossing the sidewalk; I remember that he was mocking Holy Roller girls who were making their fingernails grow in the name of Jesus). He’s been waiting for disability money since he moved back to Louisiana seventeen months ago from West Virginia.  He’s blind in one eye from glaucoma, can’t bend over from the ocular pressure and gets dizzy frequently. The vocational expert, when asked at the hearing last week if there was any job my friend could work at, testified with a curt “no.”

The judge said he’d rule in ninety days. 

For months now, my friend and I have walked together to the grocery—he doesn’t drive anymore because he’s blind, and I’ve never driven because of a long-standing phobia. I’m self-conscious about being on food stamps. The clerk remarks that it’s the second time this week I’ve bought brownies, and I feel judged because my husband is a brownie-holic. My friend says that the clerk is just making chit-chit, that this is the way Southerners are.  Carrying as many sale-cups of Dannon Yogurt as EBT will by, we pass by shirtless guys working on roofs, and my friend can’t ogle them like he used to but he never fails to mention my taste for skinny and pale men is gross. He’s played Truman Capote to my Harper Lee for as long as I can remember (or so some have observed—my friend has told me this week, with the release of To Set a Watchman, that he’s really Nelle and I am Truman) and others have compared us to timeless couples like Hansel and Gretel.  Lost in the woods, being fattened up for disaster… that’s sounds more apt than ever.

The lady at the food bank isn’t rude—or is she? Truman/Nelle isn’t with me to calm me down. It’s a church food bank and there is so much required to get your bags of food—social security cards for all members of the household (not copies), a recent bill showing residence, proof of income, disability award letters. The lady asks why no one in the household is working. I wasn’t asked this last time I came. My mouth drops open. I finally say, “I have the disability letters—my husband and my daughter---“

“We have work opportunity fliers,” she explains.

Ok. Because I want to give her the whole explanation right there. Like, do you want the short answer, lady?  Why am I not working? When will I be working? I have bipolar 1—that means that I actively hallucinate when I’m not properly medicated. That until my husband became disabled slightly over a year ago, I’d worked part-time teaching at various colleges but when my husband lost his insurance because Southern University imploded and my husband’s hours and students increased with no pay, another medical leave of absence wasn’t going to cut it and my husband lost his mind and his job and I lost my meds---deep breath—and I continued to work while hearing voices and I continued to work while caring for two special needs children. Oh, but then the college I worked for cut my hours. So I fled the sinking ship that was Baton Rouge Community College and went to work on trying to save my family. And oh, lady, my special needs daughter is on a ten year waiting list for services in this state. Work opportunities? Work? 

Cooking isn’t one of my talents, but my friend in the cottage in the backyard learned to prepare all kinds of tasty soups and rice dishes from his mom Melba, may she rest in peace, the greatest Southern gentlewoman I’ve ever known. He brings over cornbread and greasy masterpieces to put in my fridge at midnight so I’ll get first dibs on the food because he knows my predilection for getting up at dawn and is trying to fatten me up (I’ve lost a good deal of weight since the family has been on welfare—I don’t attribute this to any lack of calories because we actually eat fine but I’ve had a med change and I’ve been on the anxiety diet—nerves make me skinny).  Planning, budgeting, making lists---my talents lie there, and I’m eating expired welfare bagels with butter right now as I type this.  I just went over my general to do list—1)  Save enough money to take a driving class in the fall when my daughter is in school.  2) Pay for the background check for substitute teaching and finish the application process (I need some job before the end of 2015 to qualify for earned income tax credit on the 2015). I’m nervous about sub teaching because I’m used to going into every class with three or four back-up lessons. I hear it’s just babysitting, right? Will I even get the job?  The letter I got back from the East Baton Rouge Parish School system had three spelling errors, including the you/you’re error.  3) Fight Social Security again. 

I mentioned in a previous entry that a social security administration judge had ruled in our family’s favor over an alleged overpayment.  Now the local office doesn’t want to pay us back money it had garnished from my daughter’s SSI monthly payments and is, apparently, not complying with the judge’s order. In fact, the person I spoke with at the local office lied to me over the phone and told me that payments were being withheld for some issue that had occurred in 2013, not what the judge had ruled on---I totally believed her until my husband went “uh, that’s a lie,” found letters and papers, including the judge’s ruling that proved otherwise, and here we go again. I have to wonder how many trusting social security recipients are lied to, how many don’t have a clever husband like mine, don’t have the resources, the patience, THE GAS MONEY to schlepp to the social security office and fight for money that is rightfully theirs. I don’t know how many times my husband has gone to the office and correcting their bleeping arithmetic in order for our disabled little girl to get paid.

“I get so mad,” I tell my friend.

“Don’t,” he says, and when I say that’s like telling the sun not to rise, he makes a pot of red beans and sometimes that helps.  He used to be a writer and a voracious reader; now he’s legally blind and can’t read print books.  He moves on. He can listen to what audio books are available; he writes a sentence here and there when he can. One day he’ll get Medicare and I won’t worry so much about his tripping in the yard or getting mysterious headaches—he has absolutely no healthcare right now because Jindal didn’t expand Medicaid. One day my children will be a little more independent, and I may have a job with full insurance.  At the moment my husband’s Medicaid covers only six psychotherapy visits a year (not including the psychiatrist he sees for medications) and that really isn’t enough for someone who’s been in the hospital twice in one and half years and is disabled from major depression.  But in October, Max will have Medicare and maybe, maybe he’ll get better too.

I don’t see how my friend can be so Zen about waiting. He’s lived longer in poverty than I have. He doesn’t have an immediate family to worry about; he came here with his two cats at my request not long after he lost his job and promptly got lost with me in Louisiana’s dark forest of bureaucracy.

One day, though, Hansel and Gretel will escape.

Mother, Writer, Madwoman

There’s so much I want to tell you about what I’ve learned in the past decade, so much I’ve been through. I wake up every morning with gobs of ideas for blog posts and I find scraps in my computer and I don’t know what to post first. Just this week so much has happened. I have an old friend I haven’t written in years because I don’t know where to start in terms of catching up. Another friend, who I recently met in New Orleans in Korean/Latino fusion restaurant under the Zen Temple (my first outing with my husband in ten years), told me, “Just start with what’s happened to you in the past three days.” Even that would make up a very long entry about the social security system in Louisiana and would fry peoples’ nerves.

I will say this much for today’s entry though: A year ago, my daughter was in a mental hospital and I was frightened and tired. Today, my daughter is well, happy, and enjoying summer gym classes and swimming camp. I don’t remember the last time we had actual leisure time (No one told me that Lagaan was a four-hour movie about a three-day cricket match but Sophie and I have more Bollywood movies on our to-watch list). Friends keep recommending more DVDs—I’m lucky if I can find two hours in the day to watch anything. “I need to write again,” I say. “I want to write a book about what Sophie’s taught me.”  

Many parents of special needs kids will tell you that their children are their greatest teachers. Lessons one, two and three are pain, humility and compassion, not necessarily in that order and always over and over again. Of course, parenting any child is hard-won education is you’re paying attention and even if you’re not; kids have this way of marking time by growing up a whole five inches and learning a new skill when the adults around them seem to have barely budged beyond their computer chairs to reach for their mid-morning coffee. But wait, look closer—you’ve changed too—and not only from that first drastic moment the newborn arrived and shifted your ordinary “I plan to avoid suffering, pursue a good life” plan to “I will do anything, I will DIE for this little squirming farting baby human!”

I’ve seen myself in Sophie. She’s so much like me, only more intense. Her bipolar presented before puberty (mine presented in my late teens). For nights on end, when she was seven, eight, nine years old, I stayed up with her on a sleeping bag in the living room (her ranting bothered other family members and she needed supervision because she broke things, sometimes glass stuff, and she hallucinated favorite cartoons). Her depressions triggered my depressions; we wept together. It took everything I had and more; it was crawling across deserts of cut glass and falling into rivers of fire and imagining that the world didn’t need people like me and my daughter and re-imagining that the world had made us and so we would swim through the fire to another shore of cut glass; it was pure survival; it was unlike anything I’d gone through alone in my own sufferings because now I had to deal with the guilt and privilege of my legacy to my daughter. I had to get through it all for her.

 

And then slowly as it happens, my child became more independent. She didn’t need my constant vigilance. As I’ll describe in other entries, the struggle with getting services was excruciating and we’re currently on a ten-year waiting list in Louisiana for care that she qualifies for, but Sophie has an aide in school and a part-time sitter, and only this year, I’ve found myself having some peace of mind and some actual free time. The shock of that still hasn’t settled. I’ve started this blog; I’ve done some more writing. Before children, I identified as a writer and had some success writing.  I could write several books now about how it’s really impossible, in all kinds of sociopolitical ways, to write while caring for children in a society that doesn’t value women or doesn’t even acknowledge the existence of its special needs children. I acknowledge that my circumstances are extreme, and I live in a state that’s positively criminal towards the mentally ill, but still, try writing when your child is flinging furniture on daily basis, can't go to school and there are no respite services.

In May, I submitted a piece about Sophie to an anthology about special needs children (the “Sometimes My Smile Hurts” piece). It was rejected—which stunned me too, since I’ve never had a piece rejected for a book since I was nineteen, but Sophie has been helping me redefine my humility for a while too. I figure I’ll find my audience; I’m blogging here in the wild, no clue of who I’m writing for, and I haven’t written a piece for publication in a decade (the last articles were so short and for vegetarian and Jewish parenting journals—and yes, I did some poetry and fiction in odd moments instead of drinking or eating because I’m crazy like that).  I knew when I submitted my Sophie piece to the anthology that it was twice as long as the call for papers stated, that it didn’t fit the writing style of the editor’s previous books which have been described as “mommy blog chicken soup for the soul compilations,” that the mention of Woody Allen predation was a wrong note, but I went ahead and turned it in because I thought I would get published since I ALWAYS got published, and now I know I have to make my own space and not find it in someone else’s. This blog will be my own book one day. I’ve been talking about that with Sophie’s doctor for years.  Once upon a time, when I was a suicidal young girl, I used to rationalize, “there are enough people in the world so no one will miss me.”  These days, when I think of my book, it’s “sure, there are plenty books about special needs kids and parenting them, but none will be like mine.”