Crickets . . .

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She's So Vain

Sure I was barely conscious and draped in a hospital gown. Yes, I may have been tethered to several IVs, a heart monitor, a wound vacuum, an oxygen sensor, and my hands may have been unsteady from all the heavy-duty pain medicine pumping through my veins. And, all right, so my skin had exploded from the pressure of all the fluids forced into me and strips of it had begun to peel off everywhere. But my boyfriend, the hottie, was coming to visit, and that meant I needed to apply makeup!

Using the tiny mirror attached to the lid of my toiletry bag, I applied the Estee Lauder moisturizer and Bare Minerals face powder. Then I put on a little lipstick, but had to wipe it off because my trembling hand slipped and I looked like The Joker from “Batman.” Apparently, the hottie had been to visit several times before, but I’d been unconscious, which made it impossible, even for me, to apply makeup.

          In the days, weeks, months, and even years that would follow, I would have to face an ugly truth:  I was vain. Not just a little. I had a serious problem with vanity. And though I’d like to believe I was telling the absolute truth when I signed the amputation release form and claimed I didn’t give a rat’s ass what I looked like on the outside, losing my left leg from above the knee was a huge blow to my feminine ego. When I first understood what had happened to me, my self-image was crushed. In my mind, the amputation of my leg equaled the amputation of my femininity.

 I cried and cried over this, tortured with extreme fears about my appearance. I worried I’d never be even remotely attractive again. I told myself I’d never be able to wear skirts again, or rock a pair of cute shoes again. When I would express these fears to my best friend and daughter, they’d remind me I was lucky to be alive, and who cared about cute shoes, anyway?

Uh, they do.

But I had other things to worry about. Because I’d been lying face-up for months, a nurse had to cut a hunk of matted hair from the back of my head.

“Is there a bald spot?” I asked her.

“A little,” she lied.

I think there was a reason there were no mirrors in my Shock Trauma room. When I eventually managed to study my reflection in that cosmetic bag mirror, I saw that a bald spot was just the beginning. My hair had started to fall out all over, leaving not only bald spots, but bald regions. (Again, my daughter and best friend tried to remind me that I was lucky to be alive, but I was too busy sobbing to hear them.)

My hair starts to grow back, May 2012

Next, I discovered I had rough, dark, discolored patches of skin all over my body, including my remaining foot and leg, my hands, and the thigh that wasn’t bandaged. I checked and re-checked several times a day to be sure those patches hadn’t spread to my face. For some reason, they never did. Also, my hands and arms were swollen to twice their normal size. My nails were yellow and lined with ridges. I carried a vampire-bite scar on my neck from dialysis and another on my chest from a pic line. The tops of my hands and my forearms were shredded from the IV lines and ruptured fluid blisters. Concrete-hard lumps had formed under my skin at injection sites.

I’ll be honest – I’ve never had buns of steel. But before I got sick, I had buns of, say, aluminum. Once I got home I realized that lying on my back in a hospital bed for three months had given me buns the consistency of risen pizza dough.

Nearly two years have gone by since I got sick. I wish I could tell you I’m over the ego crap. That would be a lie. I have good days, bad days, and so-so days. I am happy to report that, recently, most of them are good or so-so. The truly awful days are less frequent. I’m making progress.

At first, I relied on the opinions of others to sustain my positive self-image. My hottie boyfriend assured me I was still beautiful. My mother, my kids, and my friends told me I was strong and brave. All of them were quick to add that I was lucky to be alive. This was nice, but it wasn’t enough, because deep down I didn’t believe a word of it.

Like many women I know, learning to love and accept myself has been a lifelong challenge. No matter what my latest achievements were, I was always driven to be more, to stay far above the norm. I’ve always pushed myself hard to reach the next level in academics or work, adventure and fun, relationships, and, of course, my physical appearance.

I sometimes laugh at that Susan from the past, the chick who lived almost entirely in her ego, who had trouble loving herself when she had everything – two legs and two wonderful kids, loving friends and family, robust health, world travel, a charming and comfortable home, talent, luck, drive, and a boyfriend who thought she was gorgeous and amazing.

Over time, my ego began to relax its death grip. I started to admit that most of the “beauty” others saw in me had nothing to do with my leg, anyway. Or my hair, skin, clothes, or even my shoes. It was who I was inside – my spirit – that was the source of any beauty others might detect in me. And twenty surgeries hadn’t removed that. Three months in the hospital hadn’t snuffed it out. I was still here. I was still gorgeous and amazing where it really mattered – inside.

That’s when I began to believe that I would survive this. I started to think that maybe it was true – it really was a beautiful thing to be alive as a beautiful woman in this beautiful world.

Even with one leg and a pizza-dough butt.

Say 'Yes' To The Meds

Drugs – in concert with the expert hands of my surgeons – saved my life. It’s that simple.

When I showed up at University of Maryland Shock Trauma, the doctors pulled out the big guns of antibiotics and hooked me up. Drugs allowed doctors to keep me alive in the short term while they figured out how to keep me alive in the long term. Drugs made it possible for me to go into surgery as often as needed and remain knocked out afterward, when I couldn’t have handled the pain. So I am deeply thankful for pharmaceuticals. The problem is, the drugs seemed to be never-ending, even for the small stuff.

Throughout my hospitalization and into my home-based care, drugs were the go-to solution for nearly every problem. Anemic? Take iron. Does the iron make you constipated? Take this industrial-strength laxative. Does the laxative cause your innards to explode like a number-two volcano? Here’s your potent anti-diarrheal. Does the anti-diarrheal make you constipated again?

You get where I’m going with this.

About midway through my hospital stay, once my infection (and my leg) were history, I remember being on a veritable truckload of meds. On the menu were four different pain medications, two daily injections to prevent blood clots, medicine to lower my blood pressure unless it was too low that day and they had to do something to raise it, medication for my hypothyroid condition that I explained had never worked for me but no one listened, an anti-depressant, a multivitamin, Folic acid, Vitamin C, intravenous magnesium, intravenous antibiotics for a urinary tract infection I acquired while hospitalized, plus a whole bunch of other stuff I’ve forgotten because all those drugs ruined my memory. But listen, even as I scoffed at the stranglehold Big Pharma had on our health care system, I’d be thinking, don’t bogart those opiate-based painkillers!

     Those of us who have experienced debilitating pain know that we will do anything to make it stop. When you are in agony, nothing else works in your favor. You can’t sleep or eat or talk or think. Your body can’t heal. So whatever they wanted to give me for pain, I was on board. But the same drugs that dulled the pain turned me into a zombie. (Not a flesh-eating zombie. I will never again use that adjectival phrase with anything but reverence.)

The drug they gave me for nerve pain made my hands and arms twitch and jump without warning, not helpful if I wanted to hold a drink or dial my iPhone. (I think I once called a very nice person in China.)

One drug made me so sluggish I couldn’t wake up, which irritated nurses’ aids charged with bathing an entire floor of patients before breakfast was served. Another drug made me stare out the window – or at the TV – in a complete stupor, which certainly helped to pass the time. It also helped me become a huge fan of “Keeping Up With The Kardashians.”

     Some drugs made my fingers numb. Some drugs made my mouth unbearably dry. Some drugs made me so squirrelly I couldn’t remember my kids’ names. Right about then, I was almost sure I’d never be able to write again. I told Arleen to take my laptop home because I wouldn’t be needing it.

     Ever.

     Then there was the Xanax Pusher.

     I’ll talk more about this incident in future blogs, but here are the basics. The rehab unit of my local hospital sent me home too weak to care for myself and before my house was retrofitted for my needs. When the social worker said there was no plan to provide home nursing or therapy, I said that was unacceptable and told him to arrange for those support services. He told me that I had issues with anger and anxiety. Within the hour, a psychologist was prescribing me Xanax, a drug for panic disorder and anxiety. I refused to take it.

The day I was discharged from the hospital, I came home with sixteen prescriptions, including, no kidding, two industrial-strength laxatives and a big-ass vial of generic Xanax. Of the sixteen prescriptions, I took only six. I see that as a major achievement.

     It was a joyous occasion when I weaned myself off my only remaining narcotic painkiller, a patch I wore on my upper arm. The process was a balancing act between how much pain I could stand and how much I hated not being clear-headed. I would cut back on the painkiller, let my body adjust, and decide if I needed to go back to a higher dose or maintain for a couple weeks. Then I’d begin the cycle all over again.

It was important to me. I’d heard too many stories about people who had been through a similar trauma and never emerged from the narcotic haze. I was determined I wouldn’t be one of them. My life was too important to me – my writing, my children, nature, music, conversation, ideas, beauty – and I refused to spend the rest of my life high on painkillers, existing but not fully present.

My mind-fog began to clear about two weeks after my last dose of painkiller, but it took many more months for my brain to heal. Trying to write during this time was an exercise in frustration. Often, I couldn’t access words or remember how to structure sentences.

There were many days that I allowed my ultimate fear to dig its claws into me. Was I brain damaged? Were the doctors right when they cautioned my family that I might never be the same? How would I go on if I couldn’t write? What would I do for a living?

I haven’t seen many “help wanted” ads seeking brain-damaged, middle-aged, one-legged romance writers.

The prescription drug frenzy hadn’t been limited to me, I would soon learn. Though I really wanted to visit my mother in the nursing home, I had to wait until I had recovered enough that she wouldn’t freak out upon seeing me. Finally, I was well enough to go.

About halfway into the visit, my 83-year-old mother informed me that when I became ill, her physician prescribed our old favorite, Xanax, to address the panic and anxiety my illness caused her.

          “Oh, Mama, I’m so sorry you panicked like that,” I said.

          She lowered her voice to a whisper. “I didn’t, but don’t tell the doctor. Turns out Xanax is a great sleep aid.”

          I was a little surprised. “How long were you on it, Mama?”

          “Oh, I’m still on it!”

    

Doctors' Wives

Perhaps this is a good time to tell you about the courageous woman who sat next to me and held my hand when I was a mostly dead, yellow-eyed, ball of bacteria.

     She is my best friend of twenty years, the same woman who encouraged me when I was a hormonal and sleep-deprived young mother, even though she was one, too. She is the caretaker of all my secrets and insecurities, the woman who kept me going during the dark days of my separation and divorce. She is the brave soul who, just before I got sick, accompanied me on a round-trip odyssey from Maryland to Upstate New York to fetch my ailing 83-year-old mother and get her settled into a nursing home.

     Arleen is not an ordinary woman, and the story of our friendship isn’t all that run-of-the-mill, either.

     We met in January 1994, when my Lamaze instructor called to tell me about a perfectly lovely doctor’s wife who was new to town and had recently had a baby. “She’s expecting your call. I think the two of you would get along wonderfully.”

My first thought was, oh, hell – another doctor’s wife.

If you happen to be the wife of a physician, I mean no offense. It’s just that I’d been in town for about a year and a half and, after attending a few events for doctor’s spouses (i.e.: wives of male physicians) I didn’t think I fit in. I didn’t have much in common with most of these women. This was back in the day when pharmaceutical companies could legally bribe doctors with fancy food, drinks, and private boxes at pro sporting events, and I admit I enjoyed all those things just fine. But many such events provided “activities” for wives while the boys talked shop.

Once, we gals were ushered into a separate room and shown how to create something called a “stiffie Christmas bow” by a cheerful, craft-y type lady. I was the only woman in attendance with a mind so dirty I had to muffle my laughter. (Sadly, that festive “stiffie” is as viable today as the day it sprang to life from my crafty hands, which is more than I can say for my marriage.) Anyway, so the idea of meeting our town’s newest doctor’s wife was a less-than-thrilling prospect for me.

“She doesn’t know a soul in town,” the Lamaze instructor said.

Fine. I promised I’d have coffee with the new doctor’s wife.

It was cold and snowy. The address I was given was in the ritzy part of town. I begrudgingly put on a skirt, sweater, earrings, makeup, pantyhose, and heels, thinking that’s what this chick would expect. I show up with six-month-old Conor in tow and knock on the door, and a woman answers. My jaw opens in disbelief.

She’s barefoot, bleary-eyed, wearing faded jeans and a ratty, stretched out T-shirt, and cradling a two-month-old infant. What the – ? This Arleen woman welcomes me in and offers me homemade chocolate chip cookies, which I politely refuse because I’m still trying to shed the metric ton of baby weight I gained with Conor. Because she and her husband had no living room furniture, we sat on the carpet. We made awkward small talk.

Arleen later told me that the combination of my uptight clothing ensemble and my passing on her cookies made her think, I am not going to like this woman.

BFFs, March 2011

Fast-forward a couple decades. At this point, we’ve done it all and seen it all, together. Our second kids were born just days apart, and to keep ourselves sane with four preschoolers, we’d sometimes shut ourselves in the minivan in the driveway while watching the kids play in the yard. Then we’d roll up the windows, repeatedly scream the “f-word” at the top of our lungs, then get out and cheerfully ask, “Who’s ready for some Goldfish and apple juice?”

Our families melded together through the years. We set out on Winnebago vacations together to the American Southwest, the Canadian Maritime provinces, and Alaska. We celebrated birthdays, anniversaries, and holidays together.  We ate at each other’s houses so often that I actually looked forward to Arleen’s pureed, no-fat black bean soup and she knew where I kept my stash of Lorna Doones. Our children share as many memories as biological siblings. Even our dogs were from the same litter. We became sisters of the heart more than just friends, and our comfort level with each other reflects that. I will never forget the day I waited for Arleen to show up so we could walk the dogs together. I texted her. “Still coming?”

“I’m here.”

Puzzled, I looked out my front door. “Where? I don’t see you. Are you out front?”

“I’m in your bathroom,” she texted back.

Arleen and I separated from and divorced our doctor husbands at roughly the same time, and there were years where keeping each other standing was second only to caring for the kids. Things eventually calmed down, and after we turned fifty, we’d often sit on the porch drinking tea and joke about growing old together, two cranky crones sharing a small wheelchair-accessible house somewhere, the only question being who’d be pushing whom in the wheelchair. One evening in the fall of 2011, the topic of living wills came up, and we discussed being each other’s medical representative should anything horrible ever befall us in our old age. It was a lighthearted discussion. I remember we were laughing.

“Just promise you’ll give me some time to come out of my coma before you pull the plug,” Arleen said.

“I promise.”

“Promise me you’ll read to me and sing to me and talk to me and do everything possible to wake me up.”

I nodded. “Of course I will. So how often will I be doing this? A couple times a week?”

“What? No! Every day!” she said, pretending to be shocked.

“In that case, you get six months, tops,” I quipped.

Just weeks later, these issues were no longer humorous or hypothetical. Arleen was the one who was asked to make life and death decisions, and I was the one who ended up in the wheelchair first.

During my illness and recovery, Arleen has been anything and everything I’ve needed her to be – my BFF, my sounding board, my personal shopper, my angel of mercy, and even my bitch-from-hell protector. I thank her every chance I get and she always smiles and says, “It’s been an honor. I know you’d do the same for me.”

She’s right. I would do anything for Arleen. It would be an honor.

But for her sake, I hope I never have to.

She's Not Dead Yet!

When a golden harp appeared in my Shock Trauma patient room, I thought to myself, “Well, shit. I’m really dead this time. At least I’m going to heaven.” I was only partly correct. The experience would be otherworldly, but I was very much alive.

Seriously. The harp was real. Let me give you some context.

The first two months of my hospitalization were a watery, psychedelic existence of one step forward and three steps back. There was surgery after surgery, anesthesia and pain medication, grief, terror, determination, drug-induced psychosis, nightmares, loss of dignity, insurance snafus, impatience, boredom, and, just when it looked like things might be looking up, my heart went into ventricular tachycardia from the stress of septic shock and surgeons had to implant a defibrillator/pacemaker in my chest.

           I recall the moment my heart went on the fritz. Nurses were tending to me, and way down deep in my strange little opiate-saturated psyche, I was dreaming. In the dream I observed children on a playground, thinking how wonderful it was for them to be out in the fresh air, laughing.

          Then I felt myself hurtling through space. I thought I might be dying. I remember saying to the nurses, “Something really bad is happening to me.” Then all hell broke loose. The next time I surfaced I had a large bandage on my upper left chest, my arm was in a sling, and below the surface of my skin was plastic device about the size of a Zippo lighter.

         After the surgery, I remember hearing a doctor say, “We’ve got enough going on here. The last thing we need is a cardiac event.”

          I was a frequent flyer in the recovery room. I remember the joy of coming out of the anesthesia and being allowed to have a ginger ale with crushed ice. That was a big thrill for me, as my throat was always dry and sore from the intubation. Plus, I hadn’t been allowed to have anything to drink, sometimes for as long as ten hours, prior to going to the O.R.. 

Since I’m a writer, it makes sense that my recovery-room hallucinations would, at times, be elaborate and full of plot twists. My favorite was the time I looked around and smiled to myself because I’d finally figured out the ruse. Ha! I was too smart to be fooled! This wasn’t a hospital at all. It was a reality TV show about a baking competition. All these people running around were producers and celebrity bakers, and I was one of the contestants vying for a position at a famous bakery! This whole hospital/near-death thing had just been a cover story used by The Discovery Channel!

I later found out that I had verbalized this madness, much to the amusement of the recovery room nurses.

To help me deal with pain and side effects from anesthesia and medication, I was lucky enough to participate in the University of Maryland’s alternative therapies program, which included Reiki treatments. Reiki is a Japanese healing art in which the practitioner touches the patient or moves their hands above the patient’s body, manipulating life energy to promote healing and well being. The Reiki masters brought singing bowls into my patient room and chanted over me. Oh how I loved this! It gave me such comfort. These women were gentle and positive.

I didn’t always go to the O.R. for procedures. Doctors sometimes worked on me in my room, using only local anesthesia such as a shot of lidocaine. I remember one intensely painful in-room procedure in which the surgeons cleaned my amputation site and changed the drainage tube. (This is the drawback of being conscious – you know what’s being done to you.) On this day I had the company of two Reiki masters and a nurse. The nurse gripped my hand. One practitioner moved her hands above my body and touched my forehead and shoulders. The other chanted and created soothing tones on the singing bowl. I was so terrified that day that I’m not sure I could have made it through without them.

This is where the harp comes in. As part of the alternative therapies program at Shock Trauma, I also was treated to live musical performances, right there in my tiny patient room. As soon as I learned that classically trained musicians volunteered their time on the unit, I put in a standing request. My first musician was a cellist. The sounds were so exquisite I cried. I had been starving for beauty for so long that the music jolted my spirit awake. I had a visit from a viola player, too. But, by far, the most surreal experience was the day a harpist rolled her full-sized, gilded, elaborately scrolled concert harp into my tiny Shock Trauma room. It barely fit through the door. The painfully sweet notes she produced floated around me and through me. Her music helped me feel human at a time when I’d almost forgotten what being human felt like. It was magical.

          Of course, when I mentioned the harp to my best friend, Arleen, she figured I was having another one of my hallucinations. She asked, “Um, Susan? While all this was going on, did any of the doctors happen to be naked?"

          Once I regained some of my physical strength and mental clarity, the most maddening part of my hospital experience was how slow I was to heal. The goal was to get my amputation site ready for a skin graft, but the days and weeks kept passing by. On countless occasions I would get my hopes up that this time Dr. O’Toole would take me into the O.R. to clean and drain the wound and see that I was healed enough for the skin graft surgery. Then I could go home!

But over and over again, the doctors said I wasn’t ready. The news would crush me – crush everyone. But nurses and doctors explained this was standard for my type of traumatic amputation, and likened the process to a roller coaster ride. Could the leg be saved?  At first, it was yes and then it was no. Was the wound healed enough to graft? Probably. Or not. It was exhausting for me and for those who cared about me.

During this time, I remember lying in my hospital bed thinking that I couldn’t go on anymore, that I’d been pushed beyond my limit. I had no more strength or patience left in me. I couldn’t take the pain any longer. Or the boredom. Or the drugs. Or the endless hours of loneliness.

Right about then, I got a new neighbor in the Shock Trauma Unit, a dude I called “The Screamer.”  He screamed day and night. It was God-awful. I would put my iPod headphones in and listen to music at full throttle but I could still hear him. “Help me! Oh, God, somebody help me! The pain! The pain!” I finally asked my nurse what my anonymous fellow inmate was in for, and she told me he’d jumped out of a third story window and had multiple fractures and internal injuries.

I thought, hmm . . . so this guy wanted to die and all I wanted was to live. And here we are, across the hall from each other in the same hospital.

It took me awhile to sort this out in my head, but I realized that one illness isn’t any more or less awful than another. The Screamer had a mental illness. Mine was bacterial. And we’d both ended up road kill. Perhaps the only difference was that The Screamer might not have had the resources or loving support he needed to get well while I’d had more than my share. From then on, I tried not to let his screams get to me and I sent him positive thoughts from my cell across the hall.

What I didn’t know was that I’d soon be doing my own screaming. This means that some other patient, somewhere, might think of me their “Screamer” from across the hall. I’d like to track them down to apologize.