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.

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 mindâ„¢?

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.

This is the place where poetry, politics, caregiving, disability and the ocean intersect with the body. That body is mine and yours.

A podcast about The Grit and Grace of Caregiving, hosted by me and Jason Lehmbeck.