My mom called me this morning to let me know that the deep brain stimulation surgery she's been undergoing for a couple months -- one half of her brain one month, a followup appointment last Monday for the other half -- has had results.
For the first time, in many years, she can walk. Unaided.
(I think it's time to reflect on this simple joy, all day today.)
Over the past couple of days, the following has happened:
"How are the cats, Dad?"
"Oh, they're fine... I check in on them, and when I was last there I found a big bag of expensive cat food, so they're all right, although there's only one cat now. Puss -- I don't know what exactly happened, but I think Puss ran away, so there's only the one."
"Well, Dad, don't you think we should find out about whether this cat can be adopted by someone?"
*chuckle* "Oh, that's not my job."
Dear God. Now it's become our job, I guess. At least the other cat got some sense and ran away before our cratering family dragged it down. Nothing like poor defenseless creatures being caught up in endless family drama.
That was sort of the extent of our conversation, other than my dad getting Mom's cell number from me and the address of her assisted living facility. He said he checks in on her every day, but I don't really understand how he can do that if he doesn't have the information. It's to the point where I really don't want to know the truth, whatever it is, because I know it's bad. I think my relationship with my father has to be one of meaningless affable small talk punctuated by my desires to talk brass tacks: how he's set himself up for medical emergencies, whether he can give me or my sister power of attorney, how his health is, and so on. I'd rather keep a little bit of illusion about him for whatever time he's got left.
Having your image of your own father completely upended in the space of a week or two kinda does things to you. It also puts your own life choices and the company you like to keep in some sharp perspective.
The worst part is going to bed not knowing how much sleep you're going to get. Our therapist said it best: there's one word for sleep deprivation on this scale -- torture. I hope this works tonight, because something has to work.
There's a nice cafe nearby, manned by tattooed and pierced college women, or grad student women, where I walked for solace -- I simply had to get out. As I sat there, having my berry bread pudding alone at a table listening to the Neil Young they were playing, they offered free large lattes to all 2 of us customers that happened to be in the place at 3:30 Friday afternoon.
This simple act of human kindness overwhelmed me again with waves of grief. I told them they were great, and left in a hurry lest I just lose it over a goddamn cup of coffee.
Oh, I know that this too shall pass... it's passing too fucking slowly for my taste.
...and so I come back to the long-lost blog, however briefly, to catalog just what's happened to me in the past few weeks. In hopes of easing my life just a little by setting it all down. Or maybe it's a cry for help. I don't know.
Remember that time-lapse scene in The Virgin Suicides, when the house that had been the envy of the block becomes rotted away and overgrown over time? When the big tree in front of the yard gets cut down as the yard gets overgrown? When the parents, unable to deal with their daughter's suicide, retreat into their inner selves and let the family implode?
My family's disintegrated over the past couple weeks. The house we grew up in is that time-lapse house.
Ordinarily, you might think that this is me being overdramatic at having very little sleep (don't ask) along with a lot of stress. But this has actually happened to me: in the space of a couple weeks, so much has happened on my family's emotional lanscape that I'm left with very little. I'm still processing. But let me start at the beginning...
My mom willingly switched medications without telling anyone, least of all my dad or either of her children, because she had the devil's choice of increased freedom of movement at the cost of vivid, disturbing hallucinations. Hallucinations that were frequently sexual in nature. Hallucinations that often featured frightening monsters, as if old children's nightmares had come to life. Mardi Gras parades outside. People sitting in the living room. My dad having sex with, and hiding, male prostitutes. Yes, she had all these.
Yet, everything was "just fine" when I'd call her. She even concealed how many times she was falling down (sometimes 5 or 6 times a day at the worst). She kept the hallucinations secret, even while her frustration with Dad was brewing and boiling over -- she interpreted her hallucinations of him as gospel truth, while the other hallucinations were easily dismissed.
So she kicked him out of the house -- and told me one night when I called her to catch up.
The problem then became what to do about her health, now that she was living alone -- something that couldn't stand. She immediately went about auditioning home health aides from companies around the area.
But the bottom fell out when she fell pretty hard one day; luckily, this was when a friend of the family was visiting, who called 911. A fire truck arrived, and the fireman put the fear of God into her by saying the next time she fell, she'd be greeted by paramedics who would take her to the hospital, where she would have to deal with the superbugs that hospitals are full of.
It's best for my mom. I don't have to worry about her physical safety any more, and these places have medical staff on call 24 hours. I have the utmost confidence in my sister's ability to pick out a nice place, but it's a lot to deal with.
The basic conclusion I've come to is that my dad was the shittiest husband ever, but a great father. I don't understand so many things, though, since these drips and drabs of information come out from a woman who's had a lifetime of husband-focused bitterness, most of it entirely justified. It also doesn't jibe with all available evidence -- after all, when we'd visit them for the holidays, they'd be all lovey-dovey with each other, even writing mash notes in Christmas cards to each other.
Yet, I expect, that might've been playing it up for the kids, just like everything else they did out of some entirely misplaced desire to protect us.
Maybe this is me just trying to survive with some shred of my family life intact, but my hope would be that we just take Dad for what he is: always pleasant to be around, and always a charmer, but he never makes the first move -- he never calls his children, and he's always somewhat clueless. So we take what we can get from him. I hope.
My sister feels differently -- she says she alternates between anger, frustration, and pity... which is entirely justified, but makes me sadder than many things out of all this.
I hate that.
Off to bed. Sleep can only help.
Entry about good stuff tomorrow or soon after. Because I need to make one.
So the day before last was the day where the bloodmobile would be on the company parking lot. I used the opportunity to get out of work for a little while and do something good in the process, although I'll admit I'm primarily motivated by the coupons and the cookies.
I do have a needle phobia, and have had it for quite some time now -- however, I've been very good at controlling that fear, or at least managing it so that I could give blood without incident the two times the bloodmobile has come before.
However, I could start to sense right away that things weren't going to plan when I was acutely aware of the large needle in my arm, more so than on previous occasions.
I guess what I'm leading up to is that I started to feel very lightheaded, and while my vision was getting really fuzzy, I told the tech I was about to pass out, and did just that. I believe the technical Latin term is having a touch of the vapors.
When I came to, I had cold wet compresses all over my face, and techs were cleaning up blood from the floor as well as my arms. Apparently, to the untrained eye, a fainting spell can look like a mild seizure, which would explain the blood all over the place. I'd chalk it up to a few things: stress at work, and the fact that I'd had a minimalist breakfast that morning (2 Eggo pancakes, banana, glass of milk). One of the nurses said it could also be the body's stress reaction to having a sudden loss of blood, even though the spirit is willing.
They kept me there for another hour to make sure that I wouldn't collapse in the parking lot. (Knowing my employer, they'd probably leave me there as an example to others.) Hell of a way to get out of 2 hours of work.
And the final insult to the manliness factor: a very nice nurse from the bloodmobile called me today to see if I had any lingering aftereffects and whether I still felt all right. I am a delicate flower, after all.
(At least my BP was 100/66, pre-drainage. That counts for something, right?)
So I've had this post brewing for a long time, for a week at least, but I didn't really know how to talk about it. So I'll just say it.
For a long time, from when we were kids up until adulthood, my sister and I thought of our parents as unshakeable rocks, people who loved each other and were secure in their relationship. Mom and Dad. They were always the people on the block other people would turn to with problems -- the people who would host neighborhood parties, the people who never showed an iota of anything going wrong, because nothing was ever wrong. True, they squabbled occaisonally or they got a little busy and snippy, but that was because they were both junior college teachers, tasked with teaching junior college students who couldn't care less.
You see where I'm going with this.
They were married in 1967 before a justice of the peace in London, and it was in 1996, after I'd taken the bar exam for the first and last time, that I finally found out the truth about everything between them. That they'd immediately started having problems after I was born, and when my sister came along two years later, the problems got worse. That they'd gone to see marriage counselors, in secret, while my sister and I were in junior high school. That they'd turned in Oscar-worthy performances for years on end, never fighting in front of my sister and me, keeping up the grand appearance of being the safe and secure couple we always knew they were. But then, in 1996, they finally divorced, true to form, in secret. They told my sister, but didn't tell me because I was deep into studying for and taking the bar. It drove my sister crazy not being able to tell me.
One day in autumn, my mom came up with my sister and told me the awful truth. Dad was living in an apartment across town. They were splitting up. It was all a front.
The weeks after that were hell, particularly Christmas. Christmas was always a giant production for our family, maybe for obvious and not-so-obvious reasons, but both my sister and I made out like bandits on guilt presents, while both of us wanted to scream from the emptiness life had forced us to deal with: I got a new computer. She got outfit after outfit. A friend at the time said: "The only thing missing was a car with a vanity plate saying: IMSORRY."
Since the light had finally been turned on in our secrets & lies family, other things became known: my mom had Parkinson's and had been concealing that fact for some time as well, but couldn't conceal it anymore as the symptoms had worsened.
And so, for some time, that was the wound that healed over time: while divorced, Mom lived in the old house while Dad lived in an apartment across town. Mom had Parkinson's and occasionally prevailed upon my dad to take her to UCLA to get checked out. Dad eventually got a girlfriend -- someone around his own age -- but it didn't last very long, I don't think. Mom's condition got worse, but she stubbornly clung to being as independent as she could be in a house that wasn't exactly geared for her. After the family dog died, she adopted two kittens she adored and kept outside. Dad became the best divorced husband anyone had ever heard of: he did fix-up jobs. He did occasional yard work when Mom's hired gardener skipped things. He checked up on her when the symptoms worsened.
Then, it seemed, the bottom fell out.
One of Mom's cats got run over in the street.
Mom's spine started to unravel, requiring a back operation and putting her in lots and lots of pain.
We were unsure of just how Mom would get through all this. One way or another, everything that we'd all been thinking about, every issue that we'd been avoiding until now, would have to be resolved -- in the open.
The operation itself went off without a hitch, and the doctors referred her to a hospice where she'd get rehab under Medicare, after she'd recuperated enough under the hospital's care. At least she wasn't in any more pain.
However, the modern miracle of the American health care system being what it is, the hospice wouldn't take her because she was doing too well for them to admit her -- since Medicare is dwindling away faster and faster under the Republicans' neglect/malice/corruption, patients on Medicare are being turned away more and more as a matter of routine than anything else.
So she would have to have a home health aide, and we would have to find someplace where she would feel comfortable. My sister, who had been with my mom ever since she first needed back surgery, stepped into overdrive and found other hospices, all the while filing three articles and dealing with her editor.
It was then, like the unshakeable rock in the storm we always knew he was, that my dad spoke up.
"I'll move in."
We weren't sure he really understood what he was saying, or what we thought he was saying, at first. My mom actually said she could think of no one better to take care of her: "He's strong -- he can pick me up when I fall down." He meant what he said: he gave his apartment manager notice and then set about moving back into the old house.
My parents are now in the process of each getting rid of half the stuff they've accumulated over their ten years of separation: my dad has something like five computers, tons of CDs and books, while my mom has what can charitably be called tchochkes. They're considering putting air conditioning in the old workshop (a very large structure they built together, out of cinder blocks and rebar back in the day) so that my dad can house all of his books and electronic equipment -- maybe turn it into an office for him. They'll sleep in separate beds, but we'll put in an intercom system between their rooms so Mom can buzz him if something bad happens. A home health aide visits once a week to see everything's OK.
My mom said: "Someday, you can tell your children about your crazy parents."
It's odd: that a complete failure of the healthcare system brought our family to this -- that all the secrets and lies in our family are gone, and that my son will have both his grandparents under one roof on Christmas. That my parents, though the very flawed people they always were, have showed their heroism under pressure one more time.
They're not crazy; they just do things their way.
A brief chronology of yesterday and today:
Needless to say, I'm taking the day off tomorrow. Mainly because Mer's release from the hospital is as yet indeterminate, but also because I need some rest and downtime or my head will explode.
Your dripping, sniffling, frazzled wreck of a bad blogger,
B
Last night, we got a phone message from the dochole's boss.
It seems our letters finally reached his desk, and after saying that he hadn't forgotten us, he promised he'd get down to the bottom of the matter and contact us again, either via email or phone.
To be honest, I find myself in an odd position: owing somewhat to having parents and everyone else keeping up the constant drumbeat of GET ANGRY/WRITE LETTERS (Mer faced this a little more than I did), I find myself less angry than I was. I still think the dochole's behavior was substandard, but I find myself having to summon energy to get angry about the situation again, when I'm definitely not as angry about it anymore -- something that's a very uncommon occurrence for someone of a naturally sunny disposition like myself. I'm pretty sure Mer is in much the same emotional state.
Not that I blame anyone at all for encouraging us to write and get mad: far from it. It's just that it requires a lot of emotional energy now for things like this. Mer, me and the little man have faced a lot of things worse than this -- what's one more? And there will be more after this, requiring even more strength and determination from us. So it sounds lazy, but I'm having trouble summoning the energy necessary. At least it's going to be conducted over email or the phone, rather than some personal meeting we'd have to psych each other up for.
LM deserves anger, however. Especially as he's proved everyone wrong -- especially now, it seems like almost nothing can stop him.
But angry we might have to be, so that this doesn't happen again. And word to the wise -- always be sure about a doctor's diagnosis, with a second opinion if need be.
It starts now:
Dear Dr. XXXXX,
Although I only heard about these events of February 1 secondhand, I know enough now to know that the behavior of Dr. YYYYY was completely unacceptable. I also understand that she stands by her diagnosis; however, after what’s transpired over the past few days, this diagnosis is irrelevant. It is irrelevant with respect to our son’s current developmental state, as we already know about the extent of his delays; it is irrelevant with respect to our son’s future development, as Dr. YYYYY and every other specialist knows that such a diagnosis cannot be made until the child is at least two; and it is irrelevant even with respect to our son’s medical record, as Dr. YYYYY’s examination was at best incomplete.
This might seem to you like the anger of parents who are going through the so-called stages of grief, which must naturally end in acceptance of mental retardation (such a loaded term) of a child in whom they have invested countless hopes, dreams and aspirations. It isn’t. This is the anger of parents who have been misused and cruelly treated by a system to which they have turned for support.
Perhaps the most galling thing for me is that we’ve had our hope and faith shattered by this, where previously we were extremely confident about our son’s future. Doubt has been introduced into our lives, where previously there was none. I want you to understand that even if Dr. YYYYY’s assessment turns out to be completely accurate in all respects, our treatment at the Washington Clinic is what remains and stays with us.
Like my wife, my greatest hope is that incidents like this don’t get repeated for any other family coming to your hospital for help. All the state-of-the-art pediatric facilities in the world don’t make a bit of difference if the staff is unused to dealing with parents and children in a remotely considerate and compassionate manner. I don’t know if your facility, like many, offers courses for specialists in how to approach patients -- and parents of patients -- with more sympathy, understanding, and cognizance of the scientific method. If it does, perhaps these standards should be applied more rigorously in the future.
Sincerely,
B
M has her own letter which goes into the factual details and sheer incompetence of what happened, which she'll post as well I think. We'll see what happens...
Mostly, I hate that doctor for introducing doubt into my life where there was none before.
After I got her phone call, I started whooping and yelling in the company bathroom (thus ensuring that everyone on the first floor was positive either wild sex was going on in the stalls or painful masturbation).
The hell of the last few weeks was over.
You see, we'd taken a trip to Bakersfield to visit the folks (there will be a couple hilarious pictures of this posted later); the drive back was fairly uneventful.
On what seemed like the next day, my son shut down. Where he'd previously laughed and smiled, there were only dull looks and withdrawn stares. He'd smile at his toys, but where there was previously babbling and cooing was only silence.
My wife has too much of a flair for the negative, but she even had me convinced our son had autism. I was mentally preparing myself for the therapy sessions we'd have to go to, and clinging to the hope that his case was mild and that with therapy he'd live a basically normal life.
I was trying not to think of one thing -- that not being able to read Lord of the Rings to him, as my father had done with us, or not being able to play board games with him, would kill me.
But he brightened up, and started laughing, and playing, and being the happy kid who can't friggin' shut up -- just like I'd always hoped he'd be. Neither of us are very worried about autism now, although we're still getting a specialist appointment for him. (Correction: one of us is not very worried about autism. Sigh.)
Then the bottom fell out.
Mer had a very hard pregnancy; during the course of it, she had a fibroid that twisted around on itself, causing no end of pain. It eventually died and shrunk away after our son was born, but it meant that she would have to have a checkup after a certain amount of time to make sure the fibroid hadn't affected anything else.
They discovered a mass on her liver. The initial checkup couldn't establish whether it was cancerous or benign. Mer showed me the results online, and they started to look bleaker and bleaker the more I read. I'm a person who has to cling to some shred of hope, and it was ebbing and ebbing away, while the abyss grew in the back of my head.
As I went to sleep one night -- what am I saying, I never slept that well -- I was forced to think of things I never thought I would have to think about at all: what would I do? How could I ever cope? The love of my life, gone? Could I even afford to live anywhere?
A CT scan; more inconclusive results... the outlook, bleaker.
A final checkup; preparing for the phone call that will end life as you know it.
No results the next morning; concentrating on just getting through the morning without breaking down, and concentrating on the little things that bring happiness, such as playing with your son.
I went to stupid work, trudged through the stupid parking lot, saw the stupid blood truck, where at least lying on my back and eating cookies with a needle in my arm seemed like a better use of my time that actually doing work, and gave blood...
...desperately had to pee when i got out, went inside the first floor bathroom, and had myself in my hands when the phone rang...
...and the next moments I'll always remember -- because i felt like running around the entire building with my pants around my ankles, crying with the sheer joy of it.
Benign. Benign. Benign. Benignbenignbenignbenignbenign...
On the way home that day, I bought a lottery ticket as Beethoven's 9th was playing in my head.
Needless to say, there are a few things to take from all this:
1) Love. Don't take it for granted.
2) Life.
3) Fighting with your spouse over almost any number of things that people fight about is really fucking stupid. It may be trite, but you just don't know how much time you've got, and you better not goddamn waste it.
4) We're having a giant fucking party. For all intents and purposes it will be another board game party, but it might as well be called the "We Don't Have Autism and Cancer Blowout, 2005". I will personally be a drunken fool.
At the risk of becoming a single-issue blog, I'll relate something weird a couple of friends said over the weekend.
Again, it has to do with the issue of fertility. Heh. Issue.
Anyway, these friends (A & G), after playing around with their 1-year-old, having a nice dinner, and watching Sex & the City (a show which is beginning to grate on me, since the characters are all, well, grating), after some conversation about fertility issues, extended the following strange offer:
As we are now farther away from the PA Medical Foundation now in San Carlos, our friends have offered their house for me to masturbate in, to be that much driving distance closer.
What are friends for?
What freaks me out about this, more than the personal space issues this conjures up (not to mention blurring lines of what is appropriate behavior in someone else's house, for God's sake) is that Mer doesn't think this is in any way strange. Almost as if it's completely normal for me to drop by someone's house early in the morning, have a few moments to myself in a broom closet, and bid a fond adieu, one collection cup richer.
I'm the Bizarro milkman.
My own frickin' doctor was wondering aloud whether the bathrooms at the PA MF were conducive to autoerotic activities, as if they had set aside a particular stall for that particular purpose. Ah, yes, it's the Medical Foundation Memorial Glory Hole.
At least I can still mentally masturbate in peace.
My results came back yesterday.
The percentage of normal sperm is just above the normal figure required; however (and they said this is probably because I was late in getting the sample to the lab) there is a higher-than-normal percentage of abnormal sperm.
I may have to provide another sample to be sure.
Meredith refuses to look on the bright side. She sees two-headed babies and all sorts of deformities.
I see the opportunity to breed my own circus.
...too much information to follow...
So let me set the scene here:
We've continued moving things out of our place, piecemeal. Even our bedroom is relatively clutter-free now. What used to be our "study", which, in all actuality, was Brian's Geek-Out Chamber, is now completely bare except for the desktop computer in the corner.
Now, I've discussed previously the slightly humiliating prospect of masturbating into a cup. See where I'm going with this? It's Semen Test Day today, folks.
Let's just say that it's a very odd experience to do this in a completely empty room. Nothing but the carpet, the walls, the empty closet, and one extremely personal corner of filth. It's also very odd to be extremely turned on (as guys are wont to be) and then quickly maneuver yourself into a plastic cup that's, um, scratchy, hard and small. Also odd to have prepared for this occasion by dressing in clothes that are easy to move quickly in -- sandals, sweats, and T-shirt.
Mer has been waiting patiently in the kitchen, and cheers me on like a track coach when I run out of the room, paper bag in hand. She makes a face when I show the cup to her. I can't help that urge, the one that comes from being an older brother, to be gross.
I get confused by the address. The form specifically mentions the "collection lab", which I think is a different address from the regular PA MF location. So I end up running around PA/Menlo Park in sweats with a plastic jar full of semen in a paper bag at a quarter to 8 in the morning, swearing outside an Arby's. Not all that unusual a sight in RWC maybe, but definitely out of the ordinary for the bluebloods in PA.
Luckily enough, I manage to drop off the goods at the correct address -- same stupid building -- but I'll find out whether or not I have to repeat this embarrassing process and supply another sample.
Make it in to work only to find out that I'm late for one of those all-hands company rah-rah meetings.
A meeting in which someone actually uses the phrase "evangelist for food". Ruminate on that phrase with me for a second.
Evangelist for FOOD. It's not even noon yet and I need a drink already.
Warning sign that I need to get out, I think.