A New Diagnosis for Me

"No, really," I told the Universe. "It's OK. I have more than my share already."

But the Universe can be heartless. It silently, and without apology, handed me another one.

It's called fibromyalgia. It sucks. But it explains almost all of my symptoms since the winter: pain everywhere, enormous fatigue, GI stuff, revved-up anxiety, and depression. I had a brief reprieve -- maybe two months -- and now the symptoms are back with furious intensity.

This fibromyalgia is most likely the result of persistent and prodigious stress over the many years of trying to keep my child safe from his own self-injurious impulses. Of trying to keep him alive and happy (the latter quite unsuccessfully) and never knowing from one hour to the next when or where the next bomb was going to strike.

Man, that is one hard job. I kind of feel like I've earned a ginormous salary but someone forgot to cut my checks. At least, when I let myself think about it, which is not often because it is too damned depressing.

So I have to figure out how to manage these symptoms AND live this new life that is not bounded on all sides by disability and crisis. (Although I guess it is -- my own and not Benjy's.) I started a medication last night because there is only so much sleep you can do without until you start obsessing about Fatal Familial Insomnia (remember that? Yes, I am obsessed with it and have written about my obsession in the past. That has got to be one of the worst ways to go. I'll spare you the agony of a link to a site about it. You're welcome. ;)

Pain all over = no sleep. So I started this new med and of course I feel like crap today -- completely drugged up and still in pain. Because meds and I apparently DO NOT MIX. Kind of like Vicodin and Vodka.

Awesome.

I find it all very confusing. So off I go into the world of medical research once again. I'll let you know when I figure this stuff out. I think I will, if I can muster the energy to put in some effort.

If anyone out there has any ideas, let me know!

Two Narratives of Decline Redux: Or Where's That Piece on My Own Disabilities I Promised You?

Remember when I wrote this post about Benjy's decline and my own simultaneous one? About how my Tourette's and my meds and whatever else was making me sick and hurt and exhausted and all that lovely stuff was getting in the way of life and work and writing? And I told you I'd be writing two posts for the Missouri Review blog, one about parenting Ben and the other about my own "troublesome parts"?

I tried to write the second post but exhaustion and ticciness got the better of me. Often it takes me months to write an essay or a story. Sometimes even years. Not only because of my child's issues but because of the pieces of me that often do not work.

Stay tuned, though: I am finally able (and willing) to write publicly about my own struggles, and the Missouri Review is looking forward to that second piece, whenever it emerges.

Two Narratives of Decline

It's been a while since I've blogged. There are a few reasons for that.

Benjy is not doing well. We have been inches away from another hospitalization. On the other hand, his EEG was normal, which is ultimately a good thing. When I first got the news it felt like I'd been kicked in the gut. I wasn't expecting that feeling, but there it was. I guess I'd hung my hopes on something that wasn't psychiatric.

I supposed I'd fooled myself into thinking that epilepsy was easy, something you just gave your kid a pill for once a day and it went away. And then in Benjy's case all the other stuff would go away too, and I'd have the boy back I once knew -- the boy I sometimes wrote about here, who may at times have wanted to die, but who was sometimes funny and bright and clever and made us all laugh.

But that was dumb. Because who ever said epilepsy was easy, or easily treated? My apologies to all the folks with seizure disorders out there, and their families, for that assumption. It was just a desperate hope. And anyway, all this stuff started long before the seizure-type symptoms reared their fearsome heads.

So yes, it is GOOD that my boy does not have yet another diagnosis to contend with. He contends with enough crap.

But we are trying to wrap our minds around what he does deal with, every day. and trying to help him get through every day. and trying to get through those days ourselves. And that takes a lot of energy. Sometimes writing, even for the blog, is the last thing I want to do.

There's been another thing eating at me recently, worrying me and taking up way too much real estate in my already over-crowded brain. (When I think of all the activity up there -- and I'm not talking about staggering works of genius here -- the image that comes to mind is Tokyo at night. And that is not what I would prefer, at fifty years old and in a state of near-constant FATIGUE.) That thing is my own disability, which has been much on my mind these days. I have mentioned it here on occasion but I don't write about it much.

This Tourette's may finally have gotten the better of me. For most of my life I did not even think of it as a disability. You were disabled, or so I thought, if you were in a wheelchair. Or blind. Or deaf. Or what we then called "mentally retarded." Now, of course, it is so much better -- and often, if not always, more accurate, to think in terms of "differently abled," and to use language like "intellectual disability."  And just as the discourse on disability has evolved since I was a kid, so has my thinking about myself and my Tourette's -- but inversely.

The thing is, while I struggled in school, socially and, while I was doped up on Haldol (AKA The Worst Med In The World) as a teen, cognitively, the disorder didn't hold me back too much. I've had two marriages, and number two is really pretty awesome. Did a PhD. Realized a long-held dream to become an author (that's just what I predicted I was going to be in my high school yearbook, btw). I did not have the academic career I had hoped for, and that was partly due to the pull of Benjy's needs and partly due to an impossible job market. At the time the plan for a tenure-track position went awry my Tourette's was not wreaking TOO MUCH havoc, although I guess I had started on my path toward unsustainable weight gain on Risperdal -- more on that later.

Well, in the past year and a half, the Tourette's has gradually gotten the upper hand over me. Because in defiance of the usual course of events, MY TS symptoms have actually become more severe with age. (This may be because the stress in my life has increased a thousandfold with Benjy's progressive illness, and stress is a well-known exacerbater of tics.) And here's the kicker: over the past thirty some-odd years I have tried virtually every medication used to treat this damned disorder (or at least every class of medication), and EVERY SINGLE ONE has had crappy, unsustainable, in some ways disabling side effects.

I am now on what I believe is my last-chance med (I WILL name you, you monster. Topirimate). I had such high hopes for it. The best thing about it, in my mind? It was going to undo the damage done by that dastardly Risperdal over the past 12 years and take off the 40 extra pounds I was dragging around.

It's working in that respect. Wanna know how? BY MAKING ME FEEL LIKE UTTER AND COMPLETE CRAP.

Actually I lost the first 18 pounds in two and a half weeks simply by trying my second-to-last chance drug and having a bad reaction to it -- I may have titrated up too fast. I could not eat or drink much for that whole period of time. (I wrote about this a while back but am too lazy to link to it -- sorry!) I've probably lost eight more pounds in the last two and a half weeks. As I said to my beloved sister-in-law recently: Who knew you could be almost dead and look so good?

So, the weight loss is great, but the GI distress, whopping headaches, and cognitive blunting are a pretty high price to pay. There's still a chance they will go away, but what if they don't?

Then I have to make a hard choice. Hard, because these tics are not easy to live with. (That is the understatement of the year.)

And no, I do not swear (unless I want to -- which, actually, is not infrequently ;). I don't have that particular kind of tic, coprolalia, which is always dramatized on TV, as if that alone is what Tourette's is. That involuntary swearing tic is actually rather rare, as far as I know.

But I do have vocal and motor tics that can be uncomfortable, both socially and physically (its TIRING when your body is constantly in motion!). Sometimes I can't type on a keyboard if my hands are very ticcy. Sometimes, when my tics are waxing, I am reluctant to go to the library. And so on. Use your imaginations.

And this, Readers, in ON MEDS. OFF MEDS, my life would be a nightmare. At this point, when every day is stress-filled, I do believe I would often not be able to drive a car safely. Every so often I decide I'm better off not driving even on the meds.

So why am I spilling my guts about all this? I bet you're wondering. Maybe you're thinking you'll go find another blog now. I hope not. You know, it took a LONG time for me to be able to talk about my Tourette's. And a longer time to use the word "disability" to describe it. But right now I am thinking a lot about all of this. About whether I really have exhausted my options for treatment. And if I have, what that means for me. Scary fucking thoughts.

All along, while I was writing and speaking one narrative of decline -- Benjy's -- there was another parallel narrative of decline I was suppressing. That one was mine.

Funny how much harder it is to talk about your own decline than someone else's -- even someone you would die for.

The difference between Benjy's decline and mine is, I am suffering SO MUCH LESS. What, after all, are my physical and social discomforts -- even my functional limitations -- compared to his acute psychic anguish? His terrible, aching loneliness? I know that, whatever life throws my way, I can handle. He's not there yet, He's only twelve. He may never get there.

I know that life is worth sticking around for, even if sometimes it truly sucks. Benjy does not know that. Not yet. My life's most important work has been helping him believe it, because it will be that much harder for me to continue believing it if he is not a part of this world anymore.

So there you go. That's why I've been AWOL. I've been in Tokyo at night. And in spite of how it looks in pictures, it's not been pretty.

What prompted this (insufferably long-winded) post is that I've been invited to write a piece for the Missouri Review blog, about how disability parenting has affected/informed my writing, and my identity as a writer. and as I've been working on that essay, I've been realizing that I'm only telling half the story if I exclude the story of myself. If I only write about being Benjy's mother and confronting his disabilities, and not the story of being me and confronting my own.

Well. that has opened up a big old can of worms. And you, Readers, are the first beneficiaries. You get to eat the worms first. Yum. ;)

Aren't you lucky?

Beauty and Disability

Raise your hand if you watched the Miss America pageant over the weekend. Go on, don't be embarrassed.

My hand is not raised, and I am sorry for it. If only I'd known what that pageant had in store I'd have been glued to the screen.

Now, I am not a fan of beauty pageants. They emphasize all the wrong things, suggesting that women are the sum of their physical parts. Don't be fooled by the "talent" piece. Yeah, some of those women are talented. In serious ways (although the more serious the pursuit -- classical piano, for example -- the less likely, in my limited viewing experience, that girl is to win). Some of them are crackerjack roller skaters or baton twirlers, too.

And some of them are not, shall we say, the brightest stars in the firmament.

Which brings me back to that emphasis on the wrong things. Because I firmly believe that how you look in a swimsuit is no measure of your value in this world. (You might have deduced from this statement that I do not look good in a swimsuit. If so, you would be right, but I stand by my assertion.) To me, Elena Kagan is beyond beautiful and cool. So is Elizabeth Warren. And my favorite college English prof, with her heavy coil of black hair and her imperfect figure and glasses -- and that brilliance that lit up the room.

But I digress. What this post really is, is a CELEBRATION of the Miss America pageant. Because this year it was all about disability. Well, okay, A LITTLE about disability.

One contestant had autism.

Another had Tourette's.

A third is having her breasts removed to protect her from cancer, just after the pageant.

What????

Hey, this pageant was about ME. Autism, Tourette's, and surgical breastlessness. I SHOULD HAVE BEEN UP THERE. Those other ladies could have stayed at home, because I've got all three issues covered! (Okay, it's true I only have autism by proxy. Maybe Benjy could have competed with me.)

Joking aside, I think it's pretty cool that our cultural standards of beauty have expanded just a wee bit to accommodate certain forms of disability. I doubt we'll see a woman with cerebral palsy up there anytime soon, although I am quite certain there are some real beauties among them. Nor will we see plus-size women or women whose beauty shines more from within than without -- the beauty of wit, intelligence, warmth, and kindness.

Readers, change is slow and painful. Many of our cultural values seem to me misplaced, but I feel the teensiest flutter of hope that we may be evolving toward greater enlightenment.

I'll get back to you in about ten years and let you know if I was right.

The Art of Focus

I have utterly lost my focus.

In the days leading up to Benjy's first hospitalization I was a wreck, but fairly on-task. I was still teaching college English, and once or twice a week in the month preceding his crash Ben would accompany me to class, because his school had figuratively and sometimes literally let him go, unable to handle his pervasive panic and acts of self-harm. Pale and off-kilter, with wild, curling hair, long untouched and a startling contrast to his wasted body, Ben sat in the front of my class, trying to hide his bloody fingertips from my students and playing Club Penguin.

His very palpable presence was not a great distraction to me. I covered his ears in a jokey way when the class  discussion veered toward things sexual or transgressive -- blame the text, Readers, not me!  -- and otherwise carried on. I was pained, in those days, but fairly focused.

When he went off to Westwood Lodge, his first psychiatric hospital, for a single week, something changed. I suddenly had a hard time prepping my classes. I kept thinking about Benjy instead of the readings, or my students' writing. I was also thinking about money and insurance and my devastated parents and Saskia and Lars and how the hell I was going to make my boy better. Those days I walked about campus in a trance, looking right through my students when we crossed paths (then again, they did the same to me). I was simply absent.

And I was exhausted.

After that first hospitalization, when things seemed better (but of course that was not to last) I dug back in and finished the semester in pretty good form. Got my usual excellent evaluations. My next semester's courses filled up with repeat customers. (I was either a really good teacher or an easy grader. Possibly both.)

I had not yet lost my groove.

The problem is that two more hospitalizations followed over the next two years. One lasted almost a month; I started this blog when Ben was halfway through that one. The third, which ended just a few weeks ago, lasted almost three weeks. And I never really recovered from either of them.

Over the past two years I became unable to work. I mean, between calls from the school to pick him up and a zillion medical and therapy appointments, and the two or three days a week when he could not get out of bed to face the world, I lost the ability to be an employee. Even a mediocre one. When I did make it to class I could not bring myself to give a crap about thesis statements or short stories or the art of persuasion. Because my kid was going down, and I was going down with him. And not even my beloved literature could trump that.

Even when things are going relatively well -- on days like today, when Benjy goes off willingly to school and seems alert and not depressed and has actually eaten food of some sort (though not necessarily GOOD food) -- I don't seem to get anything done.

I write a bounty of lists. Check any flat surface in my house and you will find a few of them. Most have only one or two items out of ten or so checked off. Because I find myself drawn to rest and silence. I sit on my couch and stare. I listen to music sometimes, and sometimes I watch TV. I clean my kitchen a few times a day (funny how once is never enough), and I TRY -- I really, really do -- to pay bills. I have been promising the same growing stack of medical bills for weeks now that I'd get them sorted out. But the problem with those hospital bills is they keep coming in. And I am losing my mind over them. Not only because they are bleeding us DRY -- and believe me, we were dry to begin with -- but because I have lost track of what's been paid and what hasn't. Is this a NEW $500 charge from Children's or a second (or third) reminder about an old $500 charge? Didn't I already pay for that battery of blood tests? Or was that the battery from a few months ago?

I am so damn battered from these batteries of blood tests I could scream. Since September 2010 I have had two sick children, as long-term readers of this blog will know (for newcomers, my daughter Saskia is developing lupus), and the costs are dragging us under. All I've got to do is sort through the rapidly multiplying bills (yes, the cancer metaphor was deliberate) and pay what needs to be paid. It shouldn't be that hard, apart from the empty bank account, which is a bit of an impediment.

But I have lost my focus.

When feeling kindly disposed toward myself I think, Anna, you have been in the trenches of disability and illness for ten years. Some of those years you have held down a full-time job AND the full-time jobs of running a household and serving as primary parent. (Lars is a great Dad but most of the kid stuff lands on my plate.) You are simply EXHAUSTED.

But mostly I just feel like the ultimate slacker mom. The lame Hausfrau.

Somehow, I have got to get my groove back. Beyond lots of strong coffee I have no idea what it's going to take but I'm working on it.

Disability and Work, Revisited

It's a long time since I wrote a post on Disability and Work. At the time, our family, our son, was struggling with severe mental illness. He wanted to die. He hurt himself sometimes. He could not be left alone, or even out of my sight. Work had become untenable; I was canceling classes and office hours right and left. I was distracted as hell. My child wanted to die, and I just didn't care about a bunch of Freshman English essays.

So I left work and we went from pinched to officially broke. Planning every expenditure down to the penny. Saying no to the kids. A LOT. Buying only used clothes and very little else, besides food. And buying that at places like Aldi. That part of it has not been fun.

But it's been great only having one full-time job. Because before I was doing at least two. Maybe two and a half.

And now, things are changing again. Because Benjy is so much better. Unbelievably so. (Well, he did have a breakdown last week as a result of an unpleasant encounter with another kid at the Joy School. But that was the first in months. And he recovered pretty quickly.) And we are afraid if I continue working just one full-time job, an unpaid one, we will never be able to retire. We are beginning to imagine Lars hobbling to work with a walker. And it's kind of funny but mostly sad.

So as of tomorrow I am throwing my hat back in the ring. I'm applying for college administrator positions (I think I'm finished with teaching).

We've had to really think this through. Because if I go to work it will mean that Benjy has to take the SPED van to and from school, instead of driving with me, and he'll need to let himself in the house after school and hang out until Saskia gets home. This scares me a little. But on the other hand he's twelve now, and in sixth grade. If not now, when?

Of course, I'm counting my chickens. I don't have a job yet, and it may take a very long time to find one. But I'm looking forward to having a couple hundred dollars to put in our empty savings account each month. And being able to replace our roof when it decides to implode on us (this will probably happen soon). And being able to pay off the thousand dollar car repair expense we just incurred.

I don't know what the future holds, and whether, if I get a job, I"ll be able to keep it. We take things one day at a time here in the Delaunay household. But I'm starting to develop a slightly longer perspective. Like maybe looking out a month at a time.

I'm doing that right now, and the month of May looks like it's going to be fair and warm.

Parenting 101

Parenting a child might just be the hardest job on the face of the earth. Okay, it may not rank with those jobs Benjy watches on TV ("The World's Dirtiest Jobs"??) in terms of ickiness  -- although, on the other hand, I think we've all had poop under our fingernails at one point or another -- but man, is it challenging.

Especially if your kid is a moving target.

What you do on Monday when your kid is smiling and functional is completely different than what you will do on Tuesday when she is knocking her head against the wall/searching for knives/Googling the phrase "help I want to die." And chances are, no one will be there to advise you in the midst of the head-banging. You will have to run on instinct. Or pray for divine guidance (although in my experience this route takes too long and is better undertaken in an "emotion recollected in tranquility" sort of mode ;).

I wish someone had published a book on how to REALLY do this job. (I know, there are a million of them out there, but what good are they when things change by the hour?) I would make said book my next writing project except it would take forever to compose because it would be in constant revision. What I mean by this is that my store of parenting knowledge is in constant flux. When Benjy evolves in some new way, my brilliant parenting notions -- for example, oh, you've got to be matter-of-fact when he's curled up in a ball and unresponsive -- are shot to hell. Because all of a sudden, matter-of-factness drives him over to the knife block.

You can read all the parenting books you want, but when the chips are down it's still you and your kid. No one will take that burden, and that privilege, away from you.

I feel somewhat like a deer, always on alert, always listening for some chilling change in the environment -- a new sound, a sudden breeze, a scent. I have to listen, and watch, and sense my environment for changes in Benjy's emotional state. Can I take a few moments and enter receipts into our finance spreadsheet? Can I write a little? Clean the kitchen? Or do I need to be parked right beside Ben on the couch, bodies in contact, to feel if his is clenched, or shaking. To sense if he is going down.

Now, don't get me wrong. I know that parenting is hard for just about anyone. You take a fourteen-year-old girl and her hormones, and you've got a parenting nightmare. Make it a boy and it's double trouble. Homework issues, bullying, weight issues, you name it. It's all a challenge, with or without a disability thrown in.

But you know what? Sometimes we get it gloriously right. Almost every one of us.

It feels great when that happens, even if our trenchant insight is only valid for one hour.

Disability and Work

There's a thread spinning out on my autism listserv about autism and full-time work. This is an issue I've broached before on this blog, and it's one any parent of a disabled child (or child of a disabled parent, for that matter) has confronted. How do you adequately care for your loved one and be a good employee? And if you can't be a "good" employee (there might be different definitions of "good" out there) then how do you work it out with your boss?

Being a "good" employee, in many bosses' minds, means being at the office at the same time every morning and staying in your seat until five or six or seven o'clock. It means volunteering to stay late during crunch times and basically making every sacrifice for the good of the company. Businesses are all about the bottom line, and if you are not perceived as contributing to the accumulation of profit then you are likely to lose your job.

If your child has medical appointments in the middle of the day more often than, oh, once every eight months, you are likely to lose your job.

If you get called by your child's school and have to pick her/him up early because s/he is breaking down, and this happens more than, oh, once every eight months, you are likely to lose your job.

If you are a bit distracted because your life is going down the toilet, because disability reigns in your household and is a despot, you are likely to lose your job.

And if you don't lose your job, you are likely to be demoted. Or never promoted. And you might earn less than your co-workers, too.

Sometimes it's easier to just not work. But the cost of not working is astronomical over one's lifetime -- and of course, for many families this is simply not an option. I would venture to say that most disability parents are either struggling to make it at work and successfully do their second (or third) full-time job at home, or one adult in the family is not working and that family is broke.

We used to be a family of the former sort. I was teaching college English full time and taking care of a multiply disabled child, and I was doing neither very well. Then I reached my breaking point and dropped down to one class a semester. Boy, have we been feeling the pinch. And tonight I heard that the one class I was scheduled to teach next semester, in an unpopular 8 a.m. time slot, has been canceled due to low enrollment.

So here we are, desperately running the numbers, figuring what further cuts we can make to our already spartan lifestyle.

But I think I'd rather not work and give up even more than we already have, than be worked half to death and always feel like I'm not really there for my kids. Lars mentioned to Benjy this morning that I might have a lot more time for him soon. And you know what he did? He cheered. So now I'm happy.

Disability and Work

In an earlier post I talked about the price of disability, and a fair number of readers chimed in with their stories of financial stress due to caring for a disabled loved one. There is no question that families of the disabled take a HUGE financial hit. We are a good example of that: although I have worked since 2005, when Benjy was 5 years old, I have never been able to have a "real" career. I've worked as an adjunct professor at various colleges, earning very little but having the flexibility I've needed to be Benjy's mom. And I've been grateful for the flexibility, if not for having a PhD and earning less than my undergrads will earn when they leave college with their Bachelor's degrees.

But have I done a good job? At times, yes. Other times, decidedly not. When you are not sure you can keep your child alive, or even just happy, on a daily basis, that impacts your work. When you are worried about him being bullied or her being stressed at school, when you know he's going to come home with tattered fingers or a swollen lip -- his own way of dealing with the awfulness of his days -- you simply cannot focus.

I'm thinking of this now, because the one class I am scheduled to teach in the spring has not filled up. Not even close. And I have to wonder why. Is it the ungodly hour? (It's a very early class.) Could be. Is it me? Could be. Whatever the reason that students are not flocking to take my class -- and this is the first time in six years that they haven't, probably because last semester and this have not been successful ones for me -- I am likely to have no work after December. And that is at once a wonderful and a terrible thought.

The wonderful thought is that I would not be stretched in too many directions. I would not be worrying about Ben's safety, his emotional state, and what would happen when I got him home, while trying to teach. I would not be interrupted, constantly, while trying to grade papers or prepare for class. And I could devote myself entirely to being there for him and Saskia. No more partial attention. No more distraction at work and at home.

The terrible thought is, as little as I bring home each month, it's all earmarked for something. Imagining a one-salary life for our family, even if salary # 2 has been so negligible, is a scary thing.

But: I guess I can see it as an adventure. Can we do it? As a matter of fact, I think we can. I don't know for sure it's going to happen, this loss of income. But I do know that, if it does, it will be a HUGE relief. Even if it throws the earth off its axis for a little while.

Readers, have any of you struggled at work due to family issues? Have you succeeded? Failed? And how did you feel about it? Let me know!