Monday, April 6, 2015


A New Yorker cartoon shows a folded paper crane (out-of-scale, very large) lifting beams to assemble a Japanese-style home. A man with a hard hat stands nearby. I forget what the paper cranes stand for--something to do with prayers? With good wishes? With hope?

Once, Robert was given a very small paper crane, a miniature. We had been at a Japanese restaurant, eating while Robert watched, which he doesn't enjoy. To entertain him, we'd talked to him constantly, making jokes. The napkins were red; I remember because Robert wheeled out with one on his lap. No one noticed until we were home.

As we were leaving, which is always very slightly complicated with a large child in a manual wheelchair--carefully cornering, remembering to tilt him upright, watching that the footplates don't nick chairs and walls--a very sombre man, one of the wait staff, I think (but not our waiter) or maybe one of the chefs, slid into our departing group and offered Robert an impossibly small paper crane.

It was perfectly formed, although no bigger than an inch square, maybe even 3/4 of an inch. The man bowed slightly as he backed away. I thanked him, of course.

Truly, I was delighted to receive this prayer or wish on Robert's behalf from a total stranger.

The tiny crane--white for purity, I suppose--stayed on the dresser in Robert's room for several years. I couldn't bring myself to, let alone throw it away, lose it. One day a year ago, I looked for it and it had gone. Flown away to wherever good thoughts generate that white light we can't see but which sustain us.

Sunday, April 5, 2015

One Step Forward, One Back (but not 12 steps)

I've been blocked from writing in this diary because I know I need to write a little bit about a realization within the last month that involves my husband's family. So there's a sensibility about a public/private line and whether or not it should be crossed. How it should be crossed, really.

I came across an article in the Atlantic criticizing the 12-step ideology as a "cure" for addiction. The author's criticism was directed toward, for example, AA's use of denial and a sort of faux moralism to inspire many negative human traits among people "in recovery," particularly a sensibility that "addicts" must "hit bottom" before coming to terms with their lives. That is, be completely destroyed one way or another. The whole thing smacks of the patriarchy, if you ask me.

Of course, the 12-step program, has been adapted to many situations other than addiction from which people want some sort of personal freedom. In the belief system, "addicts" have no control over their lives, no concept of personal responsibility, until they "hit bottom" and can be restored to a higher moral plane through the recognition they've destroyed their lives and those of their loved ones, while the members of this 12-step cult help them toward the recognition of personal responsibility (though only through the members, not on their own) and personal restoration.

"Personal responsibility" here is especially fraught because neither inside the belief system nor outside it does the individual do anything independently: you are either a slave to your addiction or a slave to the cultish mentality.

While I read the article, I had that unmistakable sense of recognition attributed to deja vu. In 2007, my husband's business nearly went over a precipice. He was, of course, to blame in many ways, although not all. Money was at stake because his brothers had invested in the business. However, his brothers response to the situation made no sense to me until I read this article. In 2007, they clearly wanted to punish us, Robert's needs and survival not a consideration, nor my daughter's. Our family was to be destroyed, publicly humiliated--nothing I said or did to apply logic or good business sense to the situation mattered to them. Nothing that I did to ask for mercy made a difference.

So we decided we should simply stick with the business--our source of income and independence crucial to managing Robert's needs, even though we'd be in heavy seas for some time.

Our decision only resulted in more familial abuse, up through Robert's 2013 hospitalizations and near-death. At that point, when these people, in-laws, couldn't muster any sense of humanity or compassion, I cut the cord with them completely, puzzled and hurt by their strange take on morality and human decency. The more we asked for help during a crisis, the more they refused us--and with a sense of moral superiority. The brother who lived close by would not even come to the hospital to see his nephew, nor did he offer help or solace beyond taking our daughter for a single night for dinner. My husband wrote to him to tell him how afraid he was that Robert would die, and he refused to respond.

Then I read the 12-steps critique in The Atlantic these many years later. My husband had tried to tell me that all this was based on his brothers' insistence that he was an "addict" to his business, but I'd just chalked that up to the one brother's struggling to find a locus for his anger by turning to a structure he understood--his own struggle with drug addiction. I didn't think they were serious.

Evidently, they were. And this explains why our incremental, one-step-forward-one-back progress toward solvency and stability continued to inflame their anger and sense of moral rectitude. How I love that rectitude appears to share a root with rectum. And explained their seemingly eternal need to one way or another propound our moral inferiority and degeneracy--we had never hit bottom, we had never lost everything, we had never been destitute, our children didn't suffer.

I am so glad that that article appeared. As my husband explained to me, in this worldview, there are only three types of people: addicts, enablers, and those in recovery. No one is ever healed or cured, everyone exists in limbo, shifting among these categories, a very circle of hell for which Dante had no apparent numeral. I, apparently, have been an "enabler" all these years--yes, an enabler to my husband to do better, work harder, pull himself together, an enabler of crisis management, an enabler to Robert to keep him healthy when god knows his true purpose is to be--to be what? Destroyed? The exemplar of what it looks like to "hit bottom"? A true guide for us to the virtues of the 12-step cult?

And, yes, my husband has told me that they seem to harbor a belief that we are "addicted" to Robert because our lives revolve around him--an observation borne out by their complete unwillingness in the last 8 years to help at all with any of his needs not covered by insurance or Medicaid, including his need to communicate. The 12-step cult believes offering help to someone in distress is "only hurting" them.

What lunacy! To be so emotionally impoverished that one is stripped by the cult of every shred of humanity, compassion and human decency? But I guess that's what cults do, all the better one follows their orders. To live and be in relationships with others only on the basis of an assumed "morality" and in anger?

Despite the damage they've done to us, to my children, to Robert's specific needs, and to my own reputation as a decent person doing her best in a difficult world (remember, I am the crooked, manipulative "enabler")--I can only pity them. Really. What a bunch of lost souls.

Monday, March 16, 2015

Lana Turner

When I was in college, many years ago, my friends and I, as many did when the drinking age was 18, took off on a Saturday night and hit one of the three bars in Middlebury, Vermont. Our social life off campus was compact, but hopping.

Of course, we all drank far too much because we were young and idiotic and we didn't have to drive home. We walked up the shoveled sidewalks of the town and then up the hill that led back to the college. There had been a lot of snow over those last weeks, and the banks were almost couch-like. My friend D., who had grown up in Maine, announced rather suddenly as we were half-way up the hill, that we should just let her die here, right here. She was going to sleep, she said. And she flopped down across a snow bank.

No, no! we said, of course, knowing she was mostly joking. I don't remember what had been going on in our love lives then and whether the appearance of one semi-gentleman college classmate of ours in conjunction with the Long Island Ice Teas we drank then (cheaper than beer per proof--all liquor and just a squirt of soda). As D feigned a 19th century damsel overcome by, well, some strong emotion, we all tugged at her and managed to get her to her feet. And back up the hill we went.

Actually, it was very much like this Frank O'Hara poem:
Lana Turner has collapsed!
I was trotting along and suddenly
it started raining and snowing
and you said it was hailing
but hailing hits you on the head
hard so it was really snowing and
raining and I was in such a hurry
to meet you but the traffic
was acting exactly like the sky
and suddenly I see a headline
there is no snow in Hollywood
there is no rain in California
I have been to lots of parties
and acted perfectly disgraceful
but I never actually collapsed
oh Lana Turner we love you get up
A few weeks ago, I just sat down where I was--figuratively, of course--and decided I wasn't going to move anymore. This bank of ongoing unresolved problems, or maybe that one, looked somehow comfortable enough to flop across and take a nap that might last several years. Anyway, I was too tired to care if the paperclips and sharp paper edges poked into my ribs. I am no longer an ingenue.

My husband said, maybe you should get some exercise. Several other people did as well. Frankly, I resented this when the problem was I was just too tired of all this: tired of arguing with the school (who after many apologies about not doing things right would just go back to doing things wrong again in a few weeks), arguing with Medicaid (with whom I can't even properly argue as they won't let me call them directly on the phone), not arguing with the DDA (but feeling resentful of them all the same, even though we had nothing new to argue about), and putting any more mental energy into pushing back thoughts of my husband's strange, hard-hearted family whose personal dictionary lacks the word "empathy" (at the same time that I really wanted them present because at one point in time, they had actually been supportive of Robert). And I had made my good friend Elizabeth cry because of the things I was writing in this blog, and probably my mother and who knows who else.

So I said all of this to my husband and he agreed to do some of the things I didn't want to do anymore because it's really all the same after a while and the arguments, even the vital ones, get really boring and repetitive--as I told him, how can I exercise if I have to stare at all this crap all the time and ponder doing something about it? And he ran off to find advocates to do our yelling for us (in that much gentler, yet oh-so-firm way advocates do because you pay for that quality).

And I went running. And then I decided I would do some yoga because I wanted to revisit those deep stretches. After two days of yoga, I felt the wonderful release that also comes with a massage, of deep toxins and tensions I'd been storing in one muscle or another. And I found myself crying uncontrollably this morning, having forgotten how to cry in the last few years (or cry properly, anyway), and what do you know--it released all sorts of emotional toxins. Really, people should cry more often. Privately, for the most part.

Sunday, March 15, 2015


He was supposed to stay a child forever. I know "all parents" pass this benchmark as their children turn 18 and go off to college or find jobs, etc., but it is different for us caregivers. And, no, it's not a mourning or grieving process. Each of us knows by now, more or less, how our child will fit (or not fit) into the world. So I'm not shocked that Robert will not go on to college. I don't feel unhinged or upset about the fact that his peers are.

What concerns me is his eventual departure from school at about age 21. School provides normalizing social context. And then the real world steps in. The real world that some acquaintances and other truly uninspiring or unpleasant people or relatives have been tsk-tsking you about for some time now. Now is the point at which your child becomes truly isolated. And how will you fill the gaps?

That's the real "plan" in transition planning. The rest is, well, necessary, but just the exoskeleton. If the State of Maryland does anything for Robert, it will be the provision of medical and nursing care. Some cockamamie day program that has nothing to do with including him in the society around him. Unlike other children, no other relatives can really take him out or have him over. There's too much specialty care involved.

But he was supposed to stay a child. Where I could protect him, where I didn't have to expose him to ugliness. Whatever we've done for him, we've made him, I think, feel good about his life, about himself, about his personhood.

Saturday, March 14, 2015

Cold War

The luxury of rain today, instead of snow. Noise instead of silent accumulation.

I'm still recovering from this week's events. With events of this type, there's little action to report--it's all interior, all email and phone, some meetings. Although the emotional impact of this is much like a bar fight or a surprise attack.

We met with a disability services advocate (a private advocate) early in the week. We'd met with her before, once, for some basic orientation, to touch base. We met with her this week because I'd refused to sign Robert's plan of care for the Medicaid waiver.

I've been told a lot of things by various service coordinators and case managers over the years we've had access to state services (which we cannot do without at this point, given the complexity of Robert's care, his weight, our own aspirations). That Robert will only get 40 daytime hours of nursing care moving forward, period, into adulthood. That the State will give us less care after Robert graduates from high school. That if Robert ever demonstrates good intelligence, he will be kicked out of one half of his services because those are only for people with cognitive impairments, regardless of the level of physical disability. And more.

It turns out that these are all incorrect, whether the bearer of the information was only incompletely informed herself/himself, or manipulative, or, well, fill in the blank. A silent accumulation of fear and pain.

Maryland's coordination of services for children and adults with disabilities is very poor. Two agencies under the umbrella of the Department of Health and Mental Hygiene, the Developmental Disabilities Administration and the Medicaid waiver programs, appear to have no interagency communication. In addition, the processes are not transparent for either agency. With the excuse that these services are not "entitlements" (apparently how the state treats people with disabilities has nothing at all to do with human rights) and the expressed desire to remain "flexible," no programs describe or list their services. The effect is secretive.

A lack of transparency creates anxiety. Anxiety can morph into fear. No one should ever be treated like this, like the Stasi treated their own citizens--as objects of suspicion, persons without implicit rights, anxiety and fear their primary controls, along with disinformation.

When I was very young, my father served his Army tour of duty in Stuttgart, Germany. The Berlin Wall still existed then, and, as a toddler, I stood on it while my mother says she nearly froze in mortal terror. My own impulses then were to explore and try to dash. All along the wall were men with guns, safeties off. My mother had the distinct impression they would shoot at any movement, even that of a child.

Hypothetically, the Cold War is over, but it lives on in metaphor and analogy, in the way any State treats its own taxpaying citizens with an arms-length contempt. We like to speak of freedom in America, but that happens only if you, yourself, are capable of maintaining a near-complete self-reliance. The State doesn't give some of us freedom, it takes what little we have away.

The best defense against this is, of course, speech. The chatter of the rain.

Monday, March 9, 2015

All Our Times

Love and fear can co-exist beyond a simple fear of loss. I fear most the future with Robert, I fear it every day. Maybe it's so many years of living with the unknown--anxiety is all about the unknown and the anticipation of it. And that's why so many years ago I chose never to think more than a few months ahead.

But that strategy can cause trouble, too. Never consulting a map results in discovery as well as that sudden surge of--something--eyes open in an unfamiliar land. Without warning, there you are where you never intended to be.

Not thinking ahead becomes a survival strategy that can bring you uncomfortably close to the edge of living, as though Columbus' critics were right: the world is flat and you can sail right off its surface.

This "transition to adulthood" that begins in about three months feels so artificial. Here we are at the border. Looking back, I see a lot of love--every good memory comes to the fore of outings, vacations, the past echoing and expanding. Freeing. Yes, a sense of the past can be liberating.

The future not so much. One box opening into another without end of opening. Long ago, moving forward with Robert meant hitting one check point after another--imposed boundaries and borders of politics and bureaucracy. Sometimes medicine, but less so the science of medicine and more its aphorisms about neurological progress, states of being that may or may not occur in actuality.

These borders were easy to ignore. Drive past the signposts, the warnings. Everything was pretend. The adulthood business has material consequences, now that we have a child in need of skilled nursing care, 24 hours of it. Unlike the past, in which every episode of it had a hatch to an unexpected joy or freedom of one kind or another, this future feels boxed-in, like perpetual winter trapping me inside my house. Panic? Well, yes.

I fear most the sensation of perpetual caregiving without escape--the sensation of being in service to perpetual need, the material limitations of state supports, the focused reality of state gatekeeping locking me in and letting me go and making me return.

This is different from fearing my own child, whom I love. He is a small gorgeous personality inside a Rube Goldberg machine, all of its mechanics inherently necessary each to each, running each is necessary, running the whole is necessary, but the machine is self-contained. So you might say the whole is unnecessary, but then again, you might look at all those moving parts and see an intricate beauty or obsession or perfection. What to make of this? Probably each of us builds that rube machine, the meaning of each existence a series of mechanical pieces and moving parts in harmony that keeps the omnipresent possibilities of uncontrollable change at bay.

While I'm typing this, Blue Oyster Cult's "Don't Fear the Reaper" plays on a track in my mind with its nearly circular guitar chords, several looping measures leading back to the exact same note and beginning again. More or less, the lyrics suggest that The End (yes, that big one) is only another beginning. Don't fear it. Love of two is one. Or, all our times have come / here but now they're gone.

Only a visual riff off this discomfiting adolescent anthem, but the image of the past furling open like a cape behind me, and if I should hesitate or stop or falter, the cape--those memories--would billow forward, enfolding me.


No night nurse last night and no one on Thursday night, either. Thursday was due to snow. I like snow, I do. Growing up I used to head out the back door cross-country skiing. Snow was a backdrop to life in winter.

Here, obviously, in Maryland, it's a door closing--everything shuts down. The lattice work on the trees is, of course, gorgeous, but everything's undermined by this grating sense of inevitability. I don't get out as often as I like and snow reinforces the sense of isolation, even in an area with a high population density. While everyone else enjoys the nesting, my brain is shrieking that I'm trapped. In the house. Again.

My husband and I now stay up together on the nights without a nurse. We watch movies downstairs and let Robert sleep on the couch. We drift off to sleep intermittently. It feels much better to have company than to be the night watch. Gads, look what happens to them in Game of Thrones.

In fact, the great wall of ice and snow keeping out the barbarians, or whatever might pass for barbarians on GoT because, well, they're all barbarians in one way or another--the wall is a great example of how I feel about snow. The night is dark and full of terrors.

Lying on the couch last night, I focused my mental energy on causing the snow to melt.