no balloons

My husband’s aunt is 85, and she was just diagnosed with ovarian cancer.  It’s late—the cancer, the time, the life.  But the life is precious; they are all precious. 

We visited her on a Wednesday night, just after she’d had a reaction to one of her medications.  It left her stranded beneath herself, somewhere between sleep and panic.  It was temporary.  Did she know?

I sat on the chair beside her, and she reached for me, squeezing my hand. When she fell asleep, I took my hand back, and she awoke again and held both arms out toward me.  I hugged her.  When she fell back to sleep, I got up and surveyed the room.

On the guest’s sofa, far too small for anyone to sleep (though a daughter or granddaughter slept there every night), were magazines and candy bars and assorted toiletries.  In the corner of the ceiling, seven foil balloons, adorned with cheer and imploring Margaret to GET WELL SOON, floated.

1.  Don’t buy me balloons.

I started a list that moment.  No balloons.  These are for children having their tonsils out.  Anyone who brings me a balloon while I am being treated for or recovering from whatever ails me enough that I am in a hospital will be strangulated with their cheerful pastel ribbons. Am I giving too much weight to these helium-filled mood lifters? 

2.  Tell me over and over and over again the truth about my condition.

Make sure you know I understand.  I will squeeze your hand once for yes.   

3.  Ask me lots of yes questions.

“Do you understand?”  Yes.  “Do you want a pizza?”  Yes.   “Should Chuck Prophet come sing at your bedside?”  Yes. Yes. Yes.

4.  If I am never going to get well, get me out.

Don’t let me die in a hospital.  Take me home, and get my daughter to play me out.

I need a longer list: rules about hygiene (mine and yours); lasts—last food, last beer, last song; quality of life stuff. 

Do you think about these things, too?  Does your mind go there when you are beside a loved one’s hospital bed?  Do you look at her gray skin, then at the perky balloons on the ceiling and feel a little bit of rage?

My back hurts. I feel the impending doom of a two-disc fusion.  I worry about the CT scan that checks the progression of my lymphoma.  I fear the fear.  At work, I take a pill and try to put all my black thoughts into a bubble, float that bubble up toward the ceiling. 

But the bubble hits the built-in sprinkler and pops.  Words fall out—on my head, my shoulders, my desk.  I build them into poems. And directives.

scar tissue

The other morning, I called my mother to tell her something. Her voice sounded shaky, like she was about to cry. “What’s the matter?”

“I’m having a meltdown today,” she said, quivering. “I have all these year end taxes, and my printer says the cartridge is damaged, and it’s brand new, and—“

“Tell me about it,” I say. I launch into my litany. When I hang up, I throw a painful temper tantrum. I sound like a siren, a long, low bellowing moan like a thing dying. My voice quivers at the end from the muscle spasm I’ve given myself.

I call my mother back to apologize, and she doesn’t know what I’ve done, so I remind her that I didn’t hear the complete list of her things gone wrong, the ingredients of her meltdown pot. She lets it out, and I offer some possible solutions—like the person I used to be would do.



My husband is back to work. He wakes up every morning at 4:30 and tiptoes past the rented electric recliner—where I wind up sleeping the second half of every night—squeezing himself silently in the twelve inches between my laptop table and the fireplace. He makes two cups of coffee and plans his classes. He gives six different lessons a day (fifth through eighth grade social studies, fifth and sixth grade math) and spends two and a half hours every morning doing his preps. Then he makes Serena and himself lunch (it used to be my job), drops off a cup of coffee, just the way I like it, beside my sleeping body, and goes up to shower, sending Serena down to make her own breakfast. When he comes home, exhausted from a combination of kids and the bureaucratic nonsense that adds pointless tasks to his overcrowded schedule (he eats lunch with the kids in the classroom), he walks the dogs, makes dinner or a portion of it for us all, then attends to his various tasks—school meetings, Serena’s basketball, Serena’s rock practice. (He used to be able to nap. One night a week, he could almost get out to basketball. Not now.) Then he goes to bed. Rinse and repeat.

Since school started, the almost-constant delightful and delighted guitar playing has stopped. Everyone is tense. The other day, Marty put his car keys in his pocket and promptly lost them. He patted himself down, checked every pocket, every room. He stood in the dining room and screamed the way I haven’t heard him scream since his father died.

I sat in this stupid, stupid chair crying and loving him and wishing that I could help him or even stand up and hug him—if only he had the time and it didn’t take five minutes to raise the chair and stand. If only it didn’t hurt me so much.

About an hour later, he came home to get something Serena forgot and apologized for his outburst. They keys were in his jacket pocket, under his coat, over his pants. “You ought to talk to someone,” I said. He hissed through his teeth. He doesn’t believe in therapy, he’s lost touch with most of his friends, and his brother up the street—well, let’s just say that he’s only signed as a wide receiver.

Last Thursday, I got a reply email from my sister, yelling at me for what she thought was a tone or an implication in my email to her. She called me a bitch and told me she knows I’m in pain, but I’ve been a bitch since the day I complained that my house had too many people in it (right after surgery). We went rounds, finally owning our faults and making up.

My friends have their migraines and their depression and their miserable days. They fall and hurt themselves. They lose their jobs. And because they are good friends, they have to ask how I am. I feel insensitive telling them. Sometimes I say "ugh" and change the subject or write "ok" in lower-case letters, which I haven't done since I started reading Ann Lamott. I want to lie and say I’m great. I am afraid my pain has crowded them out, and they will stop coming.

My dogs just look at me from the floor. I know that spending quality time stroking their fur is good for my heart and my mind. But I can't reach down to pet them, and it hurts us both when they jump up. I slip them some cheese now and again so they know I still love them.

Serena had a stomachache and headache on Wednesday and wanted to stay home from school. She was disappointed that her birthday (on the epiphany) was not met with the usual fanfare. She wanted to have her movie date and sleepover in the attic. But I can’t have strangers in my house right now. I can barely pull my pants up by myself, and someone has to stand by when I shower and help me dry my legs. I can’t suffer any more indignities.

I think Serena is anxious about me. She peeks around the corner to find me wincing while trying to stand. She sees my frustration with the things I drop and the things that lie along my path and the things that clutter my table, and she wonders how much longer it will be this way.





I finger the lumps around the incision in my back. It’s a thick, tough patch, like my life right now. Like the life of everyone in mine. All of us have this scar tissue. I don't have any salve or balm I can rub on the people I love to make them feel better. I can only sit here and wait.

not myself

“This is not me,” I tell my husband. I have been crying, loudly, with choking and spasms and caught breath, for an hour, since he came home to tell me that no one called in my pain prescription refill.

These days it’s hard for me to solve problems without first sucking lots of air through my teeth, turning red, and shaking. Yesterday, I got a lab work bill for $300—something that should have been taken care of by my insurance. But a computer glitch defaulted to some ancient policy, despite my having given the tech my card and license and waiting for him to make a copy. So I went through a few histrionics before calling the billing department. The problem was solved easily, painlessly, and immediately.

This inability to deal without a prodrome of drama began the other day, after I had my staples removed. Thanks to the marriage of technology and networking sites, I was able to gross out a few of my closest Facebook friends with Serena’s home video of the procedure. But I haven’t been the same since. Maybe it was the subsequent car ride that wrecked me. Or perhaps I twisted excessively while trying to put on my underwear. Never take for granted the putting on of underpants; you never know when you will need to enlist your mother, husband, or daughter to help you pull them up.

The beautiful progress I was making, back when I was annoyed by a bit of leg pain and a lot of nerve damage in my left foot, has now given way to excruciating stiffness. I’d stopped taking pain pills during the day, going ten hour stretches with not so much as an Ibuprofen. By the end of the first week, I could pick up my guitar and sit in a straight chair for twenty minutes to strum it. I could pour a glass of water, and stand up from sitting on the toilet without holding onto my legs.

Now I can’t lean slightly to raise a glass of water from a table. My back is arched excessively backward. Today I missed my first walk around the block in a week because I just couldn’t make it. And I’m back to taking one step at a time, both up and down the stairs, which I haven’t done since day two.

Instead of weaning off the meds, I take my maximum allowable dose. Anyone who knows me knows that this is not me.

Yesterday morning, I called my surgeon’s office to ask about a refill. I was nearly out of pills and had begun rationing them, bargaining with myself about how to manage the pain. I know that it often takes two days for the office to call in a prescription, so I sent Marty today. He returned at 4:45 without pills, telling me that no one had called it in.

The teeth sucking and shakes began while I tried to figure out what to do. I sent Marty for the phone and my pill bottle so that I could call the doctor’s office. They were closed, so I pressed zero to reach the on-call physician. A woman answered. I calmly explained that I'd had surgery and had called in a prescription, but no one refilled it, and now I'm out. She replied that if my medicine had been so important, I should have called earlier in the day. She could not write me a prescription, and what did I want her to do about it? "I want you to call the physician on call," I told her, and she said, “Yes, ma’am!” as if I were the one with the attitude. A man came on. I told him I'm in pain and out of meds, and he said that pills are not an after-hours emergency. He has strict orders to ignore patient requests for refills. If doctors can’t manage their time well enough to approve prescriptions at the end of each day (or keep patients from having to wait two hours in a waiting room), they don't want to be reminded about it at 4:45, when their office hours have ended. I can hear the conversation when he hung up from me: fuck that crazy crying bitch on the line who’s insisting that the doctor is actually supposed to work for her.

My home care nurse was furious on my behalf and tried to charm the answering service, but he had no more clout or luck than I.

So between pain and fits of ferocious spasms of tears and breaths, I tell my husband that this is so savage, so undignified: for patients to go through what doctors insist is “major surgery," which requires we suck up our disdain for mind-altering meds and ease our pain, because pain is dangerous to our mental health; and those same patients to be treated like criminals by the doctor's answering machine, the pharmacist, and the insurance company.

My hydrocodone prescription calls for 1 to 2 tablets every four to six hours. My doctor allows only sixty pills per refill. But the pharmacist, without any knowledge of the patient or her condition, determines how long that prescription should last. My first prescription, three weeks prior to surgery, contained sixty pills and instructions that would have the pills gone in seventeen days. After surgery, when Marty took my new prescription to the pharmacy, they refused to fill it for an extra week, because that's when the pharmacist determined I should be finished with the first bottle.

That's right. A pharmacist can refuse to refill a bottle of pills that, had I taken even the minimum amount in the maximum time, would have been depleted half the time, even when my condition has changed, and I am now a post-op patient. When we finally got our refill, the pharmacist decided it should take me ten days to use them, even though the instructions allow me to finish them in five, if that's what I need.

Marty says they just don’t give a fuck because it’s not their job to care. There are a million other patients out there with the same story, so they are simply indifferent. And he’s right—frankly, my dear, I don’t want them to give a damn. But that means I can take 12 pills a day, without being subjected to their judgment. As long as I'm not taking more than the doctor allows, it’s none of their business whether I’m swallowing them or stockpiling them for a night of partying when I’ve recovered, a year from now.

“I am not me anymore,” I tell Marty, sniveling, while he massages my head. I have to go to the bathroom, and I reject his offer of help, maybe stubbornly. But when I get to the top of the stairs, I see the most amazing sunset in months. I call, but he's gone downstairs, and I can’t wait. I take those one-at-a-time steps quickly back down, sling my camera over my shoulder, and pull myself back up, crying with every painful yank, until I am in the attic, and the window is open, and I’m shooting up. It's no hydrocodone, but capturing that beauty helps in other ways.



So maybe I am me. A little.

goodpill industries

My medicine cabinet probably looks a lot like yours: analgesics and cold medicines; assorted eye and butt creams (the latter rarely used, of course, and certainly not by me); clippers and cutters; Vaseline and Vicks Vapor Rub; an ear bulb someone might someday need—and where would we be without it?

Once or twice a year, I throw away bottles of pills, drugs that time finished when I couldn’t. Usually they are pain relievers from migraines or back aches or thoracic outlet syndrome. Sometimes they are anti-depressants that I decided against after the second dose, or they’re prescriptions for a misdiagnosed condition. In the last year, I’ve tossed whole bottles of Roxicet, Percocet, Oxycodone, Flexeril, Nortriptyline. Antivert, and Cymbalta. It’s thousands of dollars in pharmaceuticals—useful to some, I’m sure. Too bad there’s no Goodpill Industries. I’d drive up the alley and whisper, “Psssst…yo, Spike, I got the Percs.” If I could drive, that is.

The other day, I met with a surgeon to discuss my laminectomy and discectomy (L5-S1, in case you're new). He asked what I’ve been taking, and I complained that nothing worked, that if I take Percocet, I become a zombie. I’ve got five months worth of sample bottles of Cymbalta. I took it for two days and stood drooling in the grocery store, forgetting which aisles had the foods I buy.

This doctor actually listened to me for a change. He gave me two prescriptions and told me I absolutely must take them.

Before he wrote down the instructions, I told him I didn’t know what it was about prescription drugs in particular. He could tell me to smoke pot or take Quaaludes, Black Beauties, or mushrooms—no problem. But that mean ol’ Roxicet is scary! My mother tried, unsuccessfully, to hide the look of fear and horror (there was no shock) until I reassured her that once I became pregnant, I stopped taking any of those recreational medicinal risks.

She and the doctor were relieved as I waxed poetic over my drug of choice: “delicious beer.” I love the taste of beer, yes. And I love the way two beers make me feel. I’ve often wished someone could invent the two-beer pill—something just relaxing enough but not too mind altering. When you’re a control freak in pain, all you’ve got is your brain, and even that gets hijacked by the suck voice. You tend to agree with everything it says when your cognitive ability is equal to that of oatmeal.

The doc advised me how to take the Neurontin; the hydrocodone was to be taken around the clock, unless I preferred the Percocet, in which case that’s the one I should take around the clock. Whole pills, too, he warned, not the quarters and halves I’ve been taking.

The first morning, I took half a hydrocodone—just to make sure I wouldn't lose my mind. Not much happened, so I took the other half.

I’m a few days late for Thanksgiving shout-outs, but I want to thank the Norco people. I can now cross one item off my list of things to accomplish during my lifetime: Invent or discover the two-beer pill.

Though it hasn't done a whole lot for the pain, I will not be dropping any leftovers into the charity bin.

at traction

“I don’t know you well, of course,” my physical therapist says as she pulls the traction belt tighter, “but within the first few minutes of meeting you, I knew you were a control freak.”

That trait is hard to hide.

Control freaks are an interesting breed. We don’t need to control everything; we just need to control ourselves. For instance, I can’t do much about my back pain, but I can be prepared for it; I can work toward making it disappear as soon as possible. I need to be able to control the management of the pain. During my first shot, for instance, as my back was being wiped with cotton and liquid, I had to know what it was. And when the doctor began his work, instead of telling me what was happening, he tried to have a conversation, take my mind off of it. You can’t do that with a control freak. You must narrate: “I will now stick this ginormous needle right inside your spine. First the Novocain will go in. Now you’ll feel the medicine—the sensation of rubbing alcohol being poured over a cut. Now it’ll hurt for just 30 seconds longer.”

When I walked in today, Jennifer was leaning over an email by some right-wing friend of a right-wing client. He calls Obama, “B. Hussein.” How mature. He went on to describe “Markism,” which set her off. She read her literate, intelligent response. “But why do you bother?” I asked. I should have known the answer.

It’s the same reason I flinch when she yanks the pelvic belt tighter.

Jennifer’s a control freak, too. And she likes that in a client. “Some people come in and lie there and say, ‘Fix me.’ I don’t have any patience for that.”

Control-freakism has not served me well in the areas of sleep, meditation, and massage—any place that requires total relaxation, trust, and an abandonment of the self. (Orgasm is different—probably because the moments up to the loss of control are controlled and deliberate.) And it’s far less easy to be a control freak when you’re disabled. You need something to do, something over which to lord—like a physical therapy routine.

My at-home PT is my new religion: I do the knee tucks and spine rotations and hikes and alternate swims and camel humps and leg lefts. If I’m supposed to hold my position for fifteen seconds, I hold for sixteen; if I need ten reps, I do eleven.

As I lie strapped to the table, I reach for my camera and try to take a shot; a self-portrait only counts if you shoot it yourself.

But sometimes you can’t get the full picture unless you’re outside yourself. And to get there, you have to let go. Jennifer takes my camera out the door to get the whole contraption in the frame.

My heart beats hard in my throat, and she takes my pulse. Fifty-four. “It will serve you well,” she says. I am stretched at 75 pounds of pressure. The E-stim is sending jolts into four spots on my back. The belt slips, and the traction machine readjusts to 75 pounds. Appliances buzz and hum and tick.

For fifteen minutes, there is almost nothing I can do about it. Beside me is a kill switch, a red button with hair-trigger sensitivity. "Think long and hard before you press it; all of Russia will disappear," she says, closing the curtain on her way out.

I look for something to control. Words. I control my thoughts, arrange the words, these words. This is what I write.

the sun and I will have our ups and downs

When your back is wrecked, you sometimes can't walk, sit, stand, or lie down without a whole lot of pain. When it's on the mend, you sometimes need a reminder of the things you can't do.

1. You can’t go grocery shopping and pick up the giant box of large-size Milkbones from the bottom shelf, put it in your cart, put it on the conveyor belt, put it back in the cart, put it in your car, and bring it in your house. You can’t even do the first thing.

2. You can’t lug your new kneeling chair, which you discover was delivered without so much as a knock at the door (you know, because your junkyard dogs would have made a fuss), into the kitchen. You can’t even squeeze the 19.55 pound box from the place between the railings where the UPS guy wedged it.

3. You cannot put together the chair that you cannot lug into the kitchen from the front porch, especially hunched over in another chair while holding the heavy metal parts in the air until you get their holes matched and their screws tightened.

4. You cannot sit on your ass for hours writing, while your L5 throbs, and your feet grow numb.

5. You cannot make the bed! Do not make the bed! You don’t even make the bed when you’re feeling good!

6. You cannot take forty of your husband’s long-sleeved shirts off the hangers to the washing machine in the basement; take them out, wet, to put them in the dryer; and bring them all upstairs, where you cannot hang each of them back up in the closet, fastening at least the top two buttons while you lean over the bed. And you cannot do this after having done this with forty short-sleeve shirts, and you cannot do it again with forty more long-sleeve shirts. And your husband, who refuses to wear deodorant, but whom you caught hanging up a shirt he’d just taken off after working in it all day—on a day he walked a mile to work-doesn’t even understand why you would.

7. You cannot squander the sunsets. You cannot miss the chance to carry your heavy camera up three flights of stairs to the attic, slide up the window screen, and lean, crookedly, on a narrow, dirty sill filled with dead bees, and shoot the sunset.

Because when the time comes that the list of things you can’t do grows unwieldy, itself a thing you cannot lift, your ability to enjoy the sunset—no, your desire to enjoy the sunset, your not having given up on the sun’s big, smeary, wet goodnight kiss—is the test of whether you should continue—making lists, adding to your list of days.





* * *

back. in black.

“I liked my old fun Mom.” That’s what my daughter said to me while I was brushing my teeth and moaning in agony last night, after having gotten a spinal cortisone shot.

Part of me felt sorry for her, having to watch me suffer every day and cry, unable to do anything to comfort me. Part of me felt ashamed for letting my daughter see my cry so often (to my credit, she was supposed to have been in bed, where I had just kissed her goodnight). But the third part of me—because we are all divided in thirds—thought: I used to be fun?



There is nothing easy about constant pain. Years ago, my husband asked me why I was so angry, why I yell all the time instead of just answering a question. I told him that’s the way I was raised, that my family answered loudly (a notion my mother objected to on the phone today, just before she screamed at my father, and then she had to admit it). I realized later that chronic pain simply makes a person cranky. Remember that pain chart? I’m truly always at that five, and being at a five takes its toll.

Being at a nine stresses out everyone, even the people who don’t love you. Even the doctors. Yesterday, at the pain clinic, I cried a dozen times. Everyone who worked there was cheerful and sympathetic; they see people like me all day, every day, and even if they can’t relate, they understand.

But the doctor suggested, before giving me my shot, that I go on Cymbalta. He said that in low doses, it helps chronic pain. It also takes the edge off the depression and anxiety that go with pain. He thinks that it, in conjunction with the shot, will provide just the relief I may need. He said the same thing to my husband, though with Marty, the doctor called them “mood swings” and said he could see that I was suffering from those, too.

Part of me thought that doctor was getting major kickbacks from the drug company! Marty had three samples in his briefcase. Another part of me thought he was really trying to help. How good of him to inform my husband (don’t worry: I indicated on my privacy form that the doctors could talk to my husband without fear of a lawsuit) about my misery, impress upon him how much physical and emotional distress I have suffered.

But that third part of me—because we are all divided in thirds—thought: Men! They just have to stick together, don’t they? This is the kind of doctor who would give some nice drugs to the husband of a woman in labor. He’s the kind of scientist who invented a drug for PMS. Oh, hey, it helps the women primarily, but don’t be surprised to find, on that mile-long patient information sheet—that one of the side effects of Cymbalta (besides diarrhea, nausea, vomiting, dizziness, tiredness, blurred vision, tinnitus, and general brain numbness) is “happier husband.”



The shot hurt. Don’t let anyone tell you it is only mildly uncomfortable. It hurt, and then it hurt all night. That’s why I was crying while brushing my teeth (and inhaling my Advair and watching TV and sleeping). And I’m told I won’t begin to feel relief until three to eight days from administration of the shot.

This morning, though, I woke up without that achy feeling of having slept wrong all night. I got out of bed without the painful, halting wrench. I walked into the bathroom smoothly, without the feeling that my tailbone was carrying a lead anchor. I took the stairs with only one foot on each tread and walked briskly to the kitchen, where I announced my decreased pain to everyone. Even on the deck this morning, practicing walking, I shouted to my neighbor, “I can walk!” and she noticed, from that far away, that I was standing up straighter.

No one could have been more relieved than my daughter. The other day, I took her to Rock School and used one of the lesson rooms to lie on my back with my legs on a chair. Another mom noticed and told me she, too, is suffering from a herniated disk. When Serena finished her lesson, she overhead the mother telling me how she’d been alternately yelling at her kids and crying for several weeks. I could see my daughter’s ears perk up.

When we left the building, she asked me, “Doesn’t it make you feel better to know that someone else has the same thing?”

Because pain turns off nearly all of your normal better instincts (like when two skinny girls tell you they're on diets, and you compare the diet instead of saying, "Are you crazy, you skinny things?), I said no, it didn’t please me to know someone else was miserable. It didn’t ease my pain at all and only made me feel sadder.

“Well, it sure makes me feel better.”

I realize now that she’s been frightened for these few weeks—worried that I had some awful disease and was going to be crippled or dead or, worse, like this forever. Mean. Sad. Old. Unfun.

I hope this is the beginning of the end of my back pain. I don’t think any of us can take it anymore. I walked by a mirror this morning and almost didn’t recognize the profile of the woman reflected in it. What had happened to the hunched over crone, the witch who carried an apple to the front door of the seven dwarfs? Granted, she had some great hair, but she walked like a hag.

I never want to see her again.

This morning, I put on my underpants without holding the dresser. I practically hopped into them. Maybe soon I’ll be able to jump into my Fun Mom suit.

I never want to take it off.