Nearly a year ago I wrote a three-part blog, Still Mommy After All these Years, an as-it-happens report about one of my son’s health crises. Recently I revised this piece, combining all three parts into one. This is the new version.
My hand clutches, hard, on the telephone receiver: I know immediately that Daryl’s just had a seizure—or seizureS. Yet I enact the needless charade of asking what’s wrong/were you sleeping/did you have a seizure? I know his answers before he gives them: No/ I was just sleeping/ you woke me up/ I don’t feel good, followed by another “Oh, Mommy!” Daryl is 42 years old; he doesn’t normally address me this way. It’s a signal.
I hang up the phone, grab my jacket and keys, and head for his apartment, a five-minute walk away—I have no car anymore—my mind spinning: see, you can’t move away from him/good thing you got his keys/are we going to have to go to the hospital/where and how did it happen? And: is it more than seizures/is it the shunt/ will he need a revision?
In some ways Daryl’s been lucky: he’s never had a seizure in the shower, my biggest fear: I’ve heard about people who died that way. He’s never fallen from a high place or onto anything potentially harmful. I try to think of more ways he’s been lucky, but come up empty.
He and his apartment look like an earthquake hit: on the carpet just inside the entryway lies a big dark circle of wet mud; where’d that come from? Mud-spattered blankets and pillows are heaped in a pile next to the bed. Some of his baseball tchachkas have fallen off the bookshelves. He staggers from the couch holding his hand to his head: his face and his clothes are muddy, his jeans wet with pee, his hair flattened on one side, his eyes unfocussed. I question him but he remembers nothing. After I tell him it’s obvious he had a seizure he agrees, but he doesn’t remember where or when or how many. He repeatedly apologizes to me; I repeatedly tell him it’s not his fault.
I give Daryl one of the Atavans the doctor prescribed for emergencies and walk around the apartment, investigating. The mud is baffling: it means at least one seizure happened outside—but the circle is so wide and dense, I can’t figure out how so much mud would get into the house. It looks like a recently watered plant fell over—but Daryl has no plants. It’s 10:00 on Sunday morning: did he go out earlier today, or last night? He’s still wearing the clothes I saw on him yesterday afternoon. I know his habits: it doesn’t look like he made coffee or showered this morning, and by now he would have. Did he perhaps have a seizure outside, last night, then stagger home and have more seizures on the floor? That’s what the clues add up to.
I concentrate on these details to keep my mind from the scariest question: if he’s been seizing intermittently all night, did he suffer more brain damage? For 33 years, since his first seizure at age 8, doctors have been telling me they’re ultimately harmless. Right. I think now, as I always do at these times, of Christine and her son Billy, now confined to bed, fed intravenously, communicating in angry grunts and joyful yells that Christine claims to understand. I think of Christine and a rush of strength surges through me. My self-pity drifts away.
I go and sit with Daryl, rubbing his head and shoulders, while he repeatedly tells me everything hurts and he doesn’t feel good, and asks the same questions over and over: what day is this/what time/when did you get here? Soon he’s out cold from the Atavan. I go out and buy a pack of cigarettes for me and orange juice for him, then call my daughter in L.A. I don’t want to go to the ER but I know we probably should, so I let her convince me we have to.
While the paramedics are strapping Daryl onto a gurney and putting in an IV, I run around grabbing things he’s bound to need: shoes, a clean pair of jeans, insurance card, wallet…what else? Oh, yes, his meds: they always want to see what he’s taking. I go into the bathroom. There, on its customary shelf, is the bottle of Depakote. Empty. Nothing but air inside.
Déjà vu: during Daryl’s adolescence my biggest problem as a parent was my kid NOT taking drugs. Now he’s pulled this stunt as an adult; rebellion can’t be used as an excuse; he should know better. Flash of rage…but it’s a barely sustainable rage. I know why he doesn’t want to take these toxins. I see him every day, sluggish more often than not, falling asleep at all hours. Motherguilt kicks in: he has to take pills because he has seizures/he has seizures because he has scar tissue on his brain/he has scar tissue because he had surgery/he had surgery because he has hydrocephalus/he was born with hydrocephalus/I gave birth to him/I am guilty. That’s a lot more linear and coherent than my actual thought process, which is circular, as dense and baffling as the mud on his carpet.
In the hospital Daryl is transferred from the gurney to a bed, which is then pushed up against a wall. I’m told they’re keeping him in the hall so they can watch in case he has more seizures. We’ve been through this enough for me to know it’s a lie, that there’s no room anywhere else in the ER. Daryl conks out for the duration.
A nurse stops by and asks me the same questions the paradmedics asked and presumably wrote down on a chart, and I sign permission to treat him. This strikes me as ironic, since these days with all the medical “privacy policies” I can’t get medical information about Daryl without his consent, which has at times been problematic. Soon another medical person comes by and repeats the same questions, diligently writing down my answers. I go to the cafeteria and get iced tea, then come back, pull a chair up next to the bed and take the New Yorker out of my purse. Like Emma Goldman, who never went anywhere without a book in case she landed in jail, I always carry reading material in case I get stuck in an ER.
Almost two hours pass before a doctor comes by and asks me the same questions that were presumably written down three times already. She says they’re checking his blood level (of Depakote), and she ordered a CT Scan. This is all routine, as is her sudden departure, promising to return in a few minutes. I go back to my magazine.
Another hour passes. I’m getting antsy. I’m tired of sitting in the hall, surrounded by the hullabaloo of the ER, with Daryl still asleep. They haven’t given him any Depakote, and I wonder about his blood level. If they don’t get cracking soon, he’ll be here overnight—it’s after 3:00 now. I’d be glad if they kept him overnight, so he could do most of his recovering under medical supervision. I stand up: time to start prodding the medical staff.
At the nurse’s station the doctor shows me the results of the blood level test: the amount of Depakote in Daryl’s system is so low as to be negligible. This means he stopped taking it days ago. Another flash of anger: good! I am justified if I go home, if I leave him to fend for himself. I ask the doctor if he’ll be here overnight, and she says not unless something’s seriously wrong; but she assures me that I can go home, that she’ll call me with news after the CT Scan.
I’m mentally juggling logistics: I’ll have to pay for a cab when I take Daryl home, so if I leave now I’ll have to walk, then walk back again later to get him. He could as easily go home in a cab without me, I think. Thus begins the internal war: to go or not to go, to return or not return.
This war has been raging for 42 years: though the particulars change, the underlying gestalt does not: how much to take care of him versus how much independence to allow. How much can he, should he, deal with his situation on his own? How much help does he actually need? How much do I want to give him, and how much must I? Do I need to take care of myself right now? What do I owe him? What’s the “right” thing to do? Whatever my decision, no matter what the issue, it turns out to be wrong. Most of the time my decision is selfish–that is, I take care of myself first—or so my mind has tricked me into believing: in reality, when the result of my decision escalates the crisis for Daryl, and therefore for me, it turns out I’ve only screwed myself. I’ve learned this lesson a million times, and yet once again I make the wrong decision. I leave money for a cab in Daryl’s shoe, tell the doctor it’s there, give her my phone number, and walk home.
I might as well have stayed at the hospital, because at home I’m so anxious I can’t do anything. I take two ibuprofen for my aching back and turn on the ball game, but I keep falling asleep: I’m feeling heavy, as if I’m swimming underwater; soon I figure out that I erroneously took Tylenol PM instead of ibuprofen. It doesn’t bode well for walking back to the hospital tonight.
By 7:00 the doctor still hasn’t called, which isn’t unusual. I call the ER and, miraculously, she’s available. She says the CT scan doesn’t show any problems with the shunt, that Daryl’s awake and the nurses are walking him around, and soon he’ll be able to go home. She’s giving him a depakote prescription, but he’s got enough in his system now to hold him till tomorrow. I ask if she thinks he can go home in a cab alone, and she says of course. I tell her to make sure the driver knows exactly where to go. She is completely reassuring.
An hour later Daryl calls me. He sounds like he’s almost reached his normal level of confusion, an improvement since this morning. He’s found the money in his shoe, and says he’s fine to go home in a cab.
I’m not too sure of the sequence or timing of the events that follow, but they go something like this: I wait half an hour, then call Daryl’s home phone and get his answering machine. After another half hour I call the ER to find out when he left, and they say he’s just getting into a cab as we speak. I wait ten minutes, then call his number again; again I get the machine. Time passes. I call his number. I call the ER. The nurse, adopting her bureaucratic voice, tells me that since they’ve discharged Daryl they have no further responsibility for him, and I must stop calling them. I ask her to let me speak to the security guard, who says he sent Daryl outside to wait for the cab a long time ago. He gives me the cab company’s number. I call them. After checking with his driver, the dispatcher tells me Daryl was never picked up, that when the cab arrived “nobody was out there.” I call the ER and literally beg the nurse to go outside and see if he’s there; again she says they are no longer responsible for him.
Beside myself, I call 911. All this time I’m imagining possible scenarios, beating myself up for not going to the hospital to accompany him home. I am losing the internal war. A new element has been added to my fears: I think of Amber Alerts and milk container pictures, and experience a sudden kinship with all the parents crying on the local news.
A cop who looks about fourteen arrives at my apartment: surely he joined the force yesterday. Within two minutes he proves me correct: he doesn’t know how to fill out the forms, can’t decide where to sit, and asks me the same questions twice, without writing down my answers. Fortunately, his more experienced partner arrives to take over. Rookie, visibly relieved, announces he’s going out to scout the area around Daryl’s apartment building. Veteran cop takes the missing persons form from Rookie, leans on the kitchen counter, asks me questions, and fills it out. I give him a picture of Daryl. He asks if he’s retarded, if he’s bipolar, if he’s violent. He tells me he’s issuing an All Points Bulletin.
It suddenly occurs to me that Daryl might have slept through the ringing telephone when I called, that he might actually be safe in his bed, so when the cop leaves, I walk to his house and let myself in, my heart racing. He’s not there. I return home; as I’m unlocking my door the phone rings, and I race inside to pick up. It’s the hospital. Daryl has been brought back by ambulance, after being picked up by a cop just a few blocks from his apartment. The cop issued a “51/50”, a medical directive under which a person must be held for 24 hours. The hospital immediately lifted the directive: they’re going to send Daryl home, this time by ambulance.
It is now some time between midnight and two a.m. I lay down and doze. Around four a.m. the hospital wakes me up to tell me that since Daryl is unable to say which hospital he’s in and what day of the week it is, the ambulance won’t leave him at his empty apartment. “That’s ironic,” I say, unable to stop myself, “since a few hours ago you threw him out.” She doesn’t get the irony, but continues explaining why Daryl can’t go to his apartment. Why, I ask, can’t they keep him another two hours, until it’s light outside, and I’ll come pick him up. She says there’s no reason for him to stay in the hospital “overnight” and offers to take him to “George Roberts” or somesuch place that sounds suspiciously like an insane asylum. “Drive him to my house!” I yell, exasperated. I would’ve suggested this hours ago if I’d understood what was going on. She agrees with this plan, and apologizes for the “inconvenience.”
I am not “inconvenienced.” I want to tell her this, but it’s difficult to determine, much less explain, what exactly I am. I’m glad he’s coming home, glad this will be over soon, angry and baffled by bureaucratic procedures, emotionally drained, and exhausted. I make a pot of coffee, and soon hear the ambulance outside; I put on my robe and go down. Two paramedics are kidding around with Daryl, and he’s kidding back, as they help him up the front steps. I take him upstairs, set him up in the big armchair with a blanket, and he falls asleep. I drink coffee and watch Democracy Now.
Later I make us French toast and walk Daryl home. While he sleeps I do his laundry and call the drug store for his meds. Of course, he came home without the prescription promised by the ER doc. His regular neurologist hasn’t yet called in to refill the bottle I dropped off at the drug store yesterday. Fortunately, the pharmacist knows Daryl and will advance enough Depakote for a few days. I call the neuro’s office, at UCSF, and attempt to get the refill taken care of, but the buraucracy there is ten times the size of the one over here, and though someone takes down the information, I have little faith. (As of Thursday the scrip hadn’t been refilled; Daryl will be out of meds tomorrow.)
I tackle the circle of mud on Daryl’s carpet, which is so dense it’s nowhere near dry. I got instructions for removing mud from carpets from ehow.com, but these probably apply to small stains, not a deep well. Gamely I squirt dish soap over it and blot it up with a clean white cloth, then do the same with white vinegar, then water. I repeat the process several times. Daryl wakes up and, seeing me on my knees feebly battling the mud, becomes hysterical. Encouraged by his laughter, I exaggerate the process. Soon I’m on a roll. I tell him about the night’s events, none of which he remembers—wandering the streets, the cops, the missing persons report, the all-points bulletin. I’ve got him laughing like a maniac the way he used to laugh as a baby when I squeezed his rubber duck or performed skits from Broadway musicals. Every comic lives for the sound of laughter, and Daryl’s always been my best audience. During the next few days, whenever he asks me questions, I describe the scenario I’ve concocted to explain where he had seizures and how mud got into his apartment, and his post-hospital wanderings through Oakland. He collapses in paroxysms of laughter as I embellish and elaborate on his misadventures.
Coughs are mixed in with the laughter. I speculate that if he really did have seizures outdoors, and spent part or all of Saturday night outside without a jacket, then wandered around in the cold night air again Sunday, he might very well have pneumonia. I had it several years ago, so I’m acutely aware of pneumonia and its ramifications. I call my pulmonologist and ask if perhaps he’ll see Daryl. Silly me—I still remember the days when a person could see a doctor without going through the equivalent of arranging a trip to Europe; nowadays one can’t see a specialist without a recommendation from a family doctor, or insurance won’t pay for the visit. Daryl no longer has a family doctor: he simply stopped going in for checkups. I resign myself to another trip to the ER.
Mid-week the ER is almost empty, nothing like the weekend, so the visit is uneventful…though it still takes three hours. It turns out that Daryl does have mild pneumonia and is given antibiotics, which in a day or two work their magic. The crisis appears to be over. This could, of course, turn on a dime—anything might happen. From past experience, though, I’m fairly certain his health, and his mood, will improve daily, and he won’t have more seizures any time soon; he’s not likely to try stopping his meds again for at least a few years. Things return to our version of normal. It’s not everyone’s version, but it’s one I’ve come to accept.
Daryl’s sister, on the other hand, has not yet accepted it, so this episode spurs her into action: she’s been talking to Daryl’s therapist and they’re hatching plans to change/ improve/fix/cure him. They think I’m negative/skeptical/obstructive because I have little faith in their ideas. That I have tried many courses of action over the years, all of which have failed, doesn’t impress them or stop them from calling me “negative.”
If they set up appointments I’ll take Daryl to them. If they recommend vitamins I’ll see that he takes them. Things will putter along as usual, and when the next crisis occurs they’ll spin into action once more. New remedies will be tried, and the cycle will repeat. That’s how it is. Daryl’s life. My life. That’s how it is.