Phantom of the Choppered-Off

I have a simple philosophy about pain. I can handle it as long as it makes sense to me. Here’s what I mean. Let’s say I’ve just cut my left index finger while trying to slice a grapefruit. My fingertip throbs and bleeds and stings like a son-of-a-bitch. But I’ve just witnessed how it happened. It’s my fault. So I wash the cut with warm water and soap, pat it dry, and cover it with a Band-Aid. It still hurts, but I know it will pass. Then I eat my grapefruit.

         Or, let’s kick it up a notch or two. Lets say I just had several layers of skin peeled off the top of my right thigh in order to provide what’s needed for the skin graft of my amputation site. Yeah, it really, really hurts. But I know the pain serves a purpose – the skin was sacrificed so the large wound on my other leg could heal, which means I will get well enough to go home. Besides, I had been informed in advance that the procedure would be quite painful. I understand it's just another thing I have to get through.

I've even managed the pain of childbirth fairly well. Hey, I graduated from Lamaze class, so I had a general idea what was contracting, what was stretching, and what hormones were racing through my veins at any given time. I understood why my body felt like it was turning inside out, and I knew there was nothing I could do to stop it. The pain was a path to something beautiful -- I was about to give birth to my first child, eight pounds and seven ounces worth of baby boy who'd decided to show up facing in the wrong direction. (An omen, to be sure.)
But there’s one type of pain that got the better of me – phantom limb pain. It beat me, and I believe it did so because my brain couldn’t make sense of it. Not only was there no visual evidence to support the pain I felt, there was visual PROOF to the contrary: what I felt wasn’t even possible.

As you probably know, “phantom limb” and phantom pain” are terms used to describe what happens when a patient senses a body part no longer part of their body. Most often it’s experienced by those who have lost a limb or, like me, a part of a limb. Doctors say that about eighty percent of amputees experience some kind of phantom pain. But the phenomenon also has been reported by patients who were born missing limbs or who have had a breast or other organ removed.

 If you're not a doctor and try to read up on phantom pain, your head will spin. It’s a wide-open field at the moment, but everyone agrees on a couple things. The concept has been observed since the 1500s, when a French military surgeon wrote about it. The term “phantom limb” was first used in 1871 when a U.S. neurologist noted that “spirit limbs” were “haunting” thousands of soldier amputees left behind after the Civil War. In other words, the phenomenon has always been linked to the horrors of war. It still is.

But why does it happen? Researchers have some theories about what is going on in the human nervous system that leads to this bizarre occurrence, but nobody has any definitive answers. Is it because traumatized nerve endings shoot abnormal sparks all over place? Maybe. Is it because electrical signals from nerves send confusing and even damaging messages to the spinal cord, which then freaks out like the “Danger Will Robinson!” robot from Lost in Space? Maybe. Or is it because the brain’s cerebral cortex is struggling to create a consciousness of “self” with this new physical configuration? Maybe that, too.

As is clearly demonstrated by the previous paragraph, I am not a scientist. But I have lived through it, and I can tell you – it’s some mighty strange stuff.

It began in the hospital after the amputation of my left leg above the knee. I swore that my left leg was still there, even though it wasn’t. I felt tingles up and down a shin that no longer existed. My foot itched. My knee ached. The calf muscle felt really tight, like I had pulled it at the gym. (Yes, that calf muscle – the one that had been decimated by flesh eating bacteria and thrown into the medical waste incinerator.) It was  bizarre as hell. But these were oddly uncomfortable sensations. The pain was still to come.

While in the hospital, my left leg began to hurt from hip to toes. As surely as I felt my residual limb throb and ache, I felt the rest of the leg throb and ache. Shooting pains all along the length of the leg were common. Often, R.L. would jolt up from the pillow she was resting on, twitching violently in response to somebody stabbing something sharp directly into the sensitive arch of my foot.

By the time I was discharged from the hospital, I had felt every kind of pain imaginable along the length of the leg that no longer was. Tingling. Burning. Twitching. Itching. Aching. Pounding. Throbbing. And then there was my personal favorite – the sensation that my leg had fallen asleep, causing that heavy, dead, numb sensation we’re all familiar with. I remember that once I had the unmistakable sensation of stubbing my big toe against a metal bedframe, complete with the appropriate verbal reaction – SHIT! OW! -- even though there was no metal bedframe. There was no toe, either.

The weirdest experiences I had with my phantom leg are actually pretty hard to describe, even for a person who makes her living putting things into words. I’ll give it my best shot. Sometimes, I’d feel my left foot turned upside down, with the sole facing the ceiling, as it protruded out of the inside of my left knee. Or I’d feel my shin pulled up tight to my thigh, almost like it had fused with the femur. Or, I’d feel my left leg tucked up underneath my right leg, the way I used to sit while writing. The sensation wasn't painful.  I would simply feel it tucked under me, a comfortable and familiar position. All these weird misperceptions of physical reality intensified when I began to wean myself off the pain meds. R.L.’s tendency to jump and twitch got much worse when I decreased medicaiton.
My leg man, Jeff, counseled me that the flopping around at night might continue for years. “When you go still, your brain doesn’t have other physical movements to focus on, and it starts to make stuff up.” Again, Jeff was right. To this day, R.L. will twitch when I’m trying to fall asleep, though it’s become a less frequent occurrence.

          Since the cause for these phenomena is not clearly understood, the treatment is hit or miss, too. There were a couple things that seemed to help me pass through the stage of regular phantom limb pain and discomfort.

          The first was mirror therapy. Scientists aren’t exactly sure how it works, so I don't either, but I do know it does. I would put a lightweight full-length mirror between my legs, the glass facing toward my intact leg. Then I’d open and close my legs in sync – back and forth – and my mind would be tricked into thinking that the reflection of my intact right leg was actually my left leg. Somehow, that seemed to soothe my short-circuiting brain, and the phantom limb sensations lessened dramatically. Therapeutic massage helped, too. I had gone to a massage therapist regularly before my illness, and when I went back about six months after I’d been home from the hospital, we experimented with how much touch I could handle. I noticed that as I built up tolerance for touch at the amputation site, my phantom limb sensations lessened. 

          These days, I’m happy to report that phantom limb pain or discomfort is a rarity for me. My amputation site still aches and every once in a while I’ll get a stabbing pain through what remains of my thigh, but I think my brain has become used to the fact that part of me is gone forever. It’s figured out who my new “self” is these days.

         I wish there was a mirror trick to help me process the emotional and psychological makeup of my that new “self.” I’m finding those phantom pains much more difficult to deal with.

He's A Leg Man

A few months after I got home from the hospital, I met a man who rocked my world. He was a take-charge kind of dude. Within the first ten minutes of meeting him, his hands were on my inner thighs. He was, and still is, my hero.

(Spoiler alert – this is not one of my novels. If you’re expecting to read a smokin’ hot love scene right about now, you’re in for a huge disappointment.)

So anyway, his name is Jeff, and he’s a leg man. He’s my prosthetsist.

            I’m right there with you. I didn’t know how to pronounce that tongue-twister of a word either. I didn’t even know what it meant at first. It’s not like the word is part of our everyday lexicon, unless you happen to hang out with people wearing manufactured body parts. In fact, the first fifty times I tried to say the word I sounded like I’d popped a few extra Dilaudid to take the edge off -- “Praw-sssshhhhtiii-isht.” Even now, I get it right only about half the time.

A prosthetist (prahs-thih-tist) is a highly trained professional who designs, fabricates, fits, and services a prosthetic device prescribed by a physician. Many prosthetists also specialize in orthotics, like knee braces, and arch supports. In my opinion, that job description falls way short, since my prosthetist also become a therapist, confessor, life coach, cheerleader, Mechanical Engineering 101 professor, and close friend.

Jeff knows his stuff inside and out. Literally. At the age of eight, he was diagnosed with cancer and had his right leg amputated just below the hip. So when he tells me he understands what I’m going through, he really does. And then some. I have a residual limb (R.L. for short), so my prosthesis can attach to the thigh with a suction system. Jeff’s leg must be secured around his waist with a harness. And yet the guy zips around like nothing’s amiss. He plops down on the floor and pops up again at least a dozen times per appointment, and when he’s not at work, he swimming, running, biking, and mountain climbing with his family. He’s an awesome role model. Everyone I’ve met who knows Jeff says the same thing about him:  “Isn’t he amazing? You can’t even tell he wears a prosthetic leg!”

 But in my experience, the most incredible thing about Jeff is that he’s one-hundred-percent real. I’m not sure I’ve ever met anyone like him. He’s a mellow and thoughtful guy who manages to tell it like it is without passing judgment. I’ve come to appreciate that about him, since becoming an amputee in your fifties can really leave you spinning. It’s like moving to an alien world without speaking their language: I needed a tour guide and an interpreter, and Jeff became both. He told me to ask any questions I might have. Boy, was that a mistake.

Is this type of frustration normal? Is it always this hard to get used to a prosthetic limb? Do I really have to go through all this shit? Why me? I don’t think I can do it. Am I doing all right? I give up. Help me to not give up. It itches. Why does it itch? It hurts. It gets sweaty. I don’t have any more patience left. You should probably give my leg to someone else who’s better at this than I am. Would you like to do that?

Many times, I’ve shuffled into Jeff’s office frantic about some new development with R.L. or the latest incarnation of my prosthesis. With my eyeballs popping, I will ask, “Is this a good thing or a bad thing?”

Jeff always shrugs and says, “It’s just a thing. We’ll work with it.” If I ever write a book about Jeff, I want the cover to read:

“It’s Just A Thing”

Shit My Prosthetist Says

By Susan Donovan

I will never forget the day I arrived at Jeff’s office for my initial evaluation. The adventure began even before I met him. My writer friend Grace volunteered to escort me. “Escort” sounds so pleasant. The truth is, those who volunteered to take me anywhere in those days had to have the patience of Mother Teresa. The job was a theatre of the absurd production in four acts. Act 1:  Wheel me down the spanking new wheelchair ramp now installed at my house, assist me up and into the truck, dismantle and fold the wheelchair for storage. Act 2: Unfold and reassemble the wheelchair, assist me out of the truck and into the chair, and wheel me inside the office. Act 3: Wheel me out of the office, help me from the chair and into the truck, and disassemble and fold the wheelchair. Act 4: Unfold and reassemble the chair, help me out of the truck and into the chair, wheel me back into my house via my lovely new ramp.

Once inside Jeff's office that first day, I was directed to a room and told to wait.  "He'll just be a minute," his assistant Ryanna said. She closed the door. I looked around, instantly creeped-out by the shelves of fake feet and hands and a variety of plastic forms in a whole spectrum of flesh colors. I broke into sobs looking at that wall of parts, imagining myself to be the abandoned doll in exile on the Island of Misfit Toys, needing to be fixed before anyone would love me again.

The first of many "temporary" legs

A later version of a "temporary" leg 

                     

Poor, poor Jeff. He opened the door with my chart in his hands, ready to offer a friendly greeting to his new patient, only to find a snotty, air-sucking, sweaty, sobbing mess of a one-legged lady slumped in her wheelchair. He handed me a box of tissues. “I only have one rule here,” he said, his voice kind. “No crying unless you fall.”

That made me cry harder. We would often joke about that in the years to come, since it seemed I cried every damn time I came to see him, except for the day I actually fell trying to get into his office. I pulled myself up and went on – not a single tear. Go figure.

During that first appointment, Jeff listened patiently as I told him everything I’d been through in the last five months or so. When I was done he told me he had some good news for me.

“You are the type of patient I love to work with. I can already tell you will do great with a prosthesis. Want to know why?”

I nodded, clamping my nose with a tissue.

“You are a fighter. You beat the odds. You were healthy and active before your illness and the amputation was not because of diabetes or other disease. You are highly intelligent and you want to get your life back.”

I cracked a smile. And our friendship began.

Jeff explained four main principles to me that day, principles we would return to many times through the years.

1.                     A prosthetic limb is a marvel of engineering, but it is not the biology I was born with. Using a prosthesis would require retraining the mind and body, but even then, it would never “replace” the function of my lost leg. Expecting that outcome would only set me up for a double helping of frustration and disappointment.

2.                     Getting my “permanent” prosthetic leg could take months or even years. I had to be evaluated, approved by insurance, and go through a long process of trial and error to discover exactly how to best meet my needs in terms of technology, fit, attachment system, and a whole slew of other factors. Like the rest of my health crisis saga, the process would be two steps forward followed by one -- or more -- steps back. I would need to be patient.

3.                     I  was fortunate to need a prosthetic in 2012, as my options would have been severely limited anytime before. The leg I received would be the result of the suffering of thousands of men and women who lost limbs in a decade of fighting in Iraq and Afghanistan. The medical establishment had been forced to quickly advance prosthetic technology to meet the demand for limbs, often for young people in supreme physical condition who wished to resume previous activity levels.

4.                     This was also unfortunate for me, because the public view of prosthetics and amputees was based on media coverage, stories almost exclusively about robustly healthy people in their twenties, products of world-class military fitness training,  newsworthy because they were running marathons six months after they lost a leg in a quick and violent incident. “You know that isn’t you, right, Susan?” Jeff held my hand. “You were fifty years old when you got sick. It was systemic. You had many, many complications and it will take a long time for you to heal – not just your leg, but your whole body. You weren’t a twenty-two-year-old Marine

                               before and you won’t be after. Unfortunately, not everyone else will realize that."

           That first appointment, Jeff and his assistant took a cast of R.L. while I stood on my intact leg, supporting myself on a set of parallel bars. They covered the thigh in plastic wrap and proceeded with what was basically a papier-mâché project. The cast hardened, and Jeff slipped it off. I had my first mold! Technicians would use it to create my very first temporary socket – the top part of the prosthesis that fits over what’s left of my thigh. It was my first one-legged lurch on the path toward walking again.

          About a year later, I told Jeff that I was thinking about writing a blog -- and eventually a book -- about my experience. It was the first time I ever saw him get crazy excited about anything.

“Yes! Yes! You could become the face of necrotizing fasciitis!”

           And what girl wouldn’t want that? I can imagine it now. The next time I’m doing a booksigning I will hear the whispers . . . “OMG! Is that Susan Donovan? She’s the face of flesh-eating bacteria!”

I told Jeff it wasn’t exactly the vibe I was going for, but he pressed on. “You could help a lot of people, Susan. You have to do it.”

           As with most everything else, I think Jeff was right. 

    

    

    

The Stump

“My Stump, My Stump, My Stump

My Lovely Lady Stump (Check it out!)”

One of the ways in which I’ve always entertained myself and others – ok, mostly just myself – has been singing popular songs while intentionally mangling the lyrics. I think I inherited this talent from my mother, though her lyrical mix-ups were anything but intentional. My personal favorite was her take on Barry Manilow’s most heart-wrenching of love songs. You know the one. “Oh, Mandy, you kissed me and stopped me from shaving . . .”

     “Why would someone write a song about that?” my mother asked one day. “What’s so romantic about bothering someone while they’re trying to shave?”

     Flash forward to the early 1980s, to a warm spring night in Chicago. I was on a double date with my college roommate, sitting in the passenger seat of a guy’s convertible as we raced down Lake Shore Drive. My big hair whipped around in the wind. The radio blasted out some awesome Tom Petty. And I stretched my hands overhead and sang, “No baby, you don't . . . have . . . to live like an amputee!”  Big laughs all around.

Yeah, well, irony’s a bitch. As I’ve discovered – the hard way – if you want to continue living after you’ve lost one or more limbs, then you really DO have to live like an amputee. You’ve got to find a way to keep going.

With that in mind, I think it’s time to get all Dr. Phil up in here and address the elephant in the room: My “stump.” The detail-oriented among you might have noticed that in all these essays I haven’t turned to that word to describe what remains of my left leg. Nor have I described in detail what my leg now looks like. I think it’s time.

Like all relationships, the one I have with my chopped-off leg has evolved over time. While hospitalized, I refused to look at the strange, misshapen bandaged blob that was once my sturdy, muscled leg. I was horrified and disgusted by the nothingness of my knee, my calf, my ankle, my foot, and my manicured toes. Whenever doctors or nurses had to change the bandages of my open wound (and later my skin graft site) I would put a sheet over my face and squeeze my eyes tight. I couldn’t look at it. I did try a few times, but I felt sick and started trembling with grief. Honestly, it gave me the heebie-jeebies to even glance down at that alien thing, the swollen, mummy-wrapped rump roast dangling lifelessly from my left hip. I decided if I didn’t look at it or touch it, maybe it wouldn’t actually be there. Because, really, there was no way that thing belonged on my body. Clearly, there’d been some sort of mistake in the unfolding of the grand scheme of the universe.

I wasn’t supposed to be an amputee. That was for other unfortunate people who had endured motorcycle crashes, cancer, a crushing avalanche, or stepping on an IED in Fallujah while serving in the Marine Corps. Not someone like me. I didn’t ride motorcycles. I didn’t have a serious illness. I didn’t climb mountains and I wasn’t in the military. I was a divorced, middle-aged, romance-writing mother of teenagers living in a small town in Maryland. Losing my leg wasn’t even a radar screen blip in the control tower of my normal little life.

It happened anyway.

Lounging with R.L. in snowman PJs 

At first I didn’t know what to think or how to feel about “it”  -- what remained of my left leg. Though I never wanted to look at it, I had touched it a few times when I felt especially brave. I never dared go near the ripped-open hole where my knee should have been. But I did find all these strange, jagged incisions on my thigh held together with inch-long metal staples. One major incision ran up the inside of my thigh, then curved into a “Y” that wrapped around my groin area, front and back. I had no idea what that was all about and didn’t have the courage to ask. I think I was protecting myself. Somehow, I knew I wasn’t ready for the answer.

On good days, I’d joke around with doctors and visitors, saying that if they thought my leg looked bad they should see what I did to the shark. (Humor is my go-to coping mechanism.) We even talked about getting a custom T-shirt made that said, you should see the shark. My real feelings weren't so entertaining, so I decided to keep them to myself. Who wanted to hear that I would never – ever – accept the ugly, disgusting, useless thing that was once my left leg. Period.

For additional yuks I started a contest among family and friends to come up with a good name for it. Yes, “Stumpy” was a favorite. As was “Shorty,” “Sharkey,” “Peg,” “Lego,” and “Legolis.” (Get it? “Leg-o-less?”) My son wanted to name it “Bob.” Since none of those seemed to strike a chord with me, I decided I’d hold off on a name. I figured I’d know it when I heard it.

But all this was just distraction and for the benefit of others. I went on secretly being disgusted by it and scared of it, right up until about a couple weeks after I’d been home. That’s when my physician ex-husband, John, came over to help me change the bandages on my skin graft, and . . . .

(I really must interrupt the flow of this essay to say that, yes, there is a story to be told about my quasi-friendly, post-divorce relationship with John, and someday I’ll get to it. But now is not the time. For now, just know that he was helpful and kind during this ordeal. I was grateful for his personal and professional assistance, and made sure to tell him so. But that story has more than a few twists and turns, and it will remain a tale for another day.)

Anyway, so John came over to the house to help change my bandages. I needed his help because the home care nurses couldn’t be there every day and I was too freaked out to do the job myself. On that particular day he carefully spritzed the site with sterile saline solution, applied a wrap of non-stick gauze followed by one of standard gauze followed with three elastic bandages. After he was done, he sat in a chair near the bed and told me the whole story.

I almost lost my entire leg, up to the hip, and there was even a time when my orthopedic trauma surgeon was prepared to amputate the hip itself and part of my abdomen.

I was stunned. My ears buzzed and my head felt like it weighed five hundred pounds. What? I wasn’t sure I heard John right, so I made him repeat it, with all the details.

John explained that the bacterial infection was quite far gone by the time I reached University of Maryland’s Shock-Trauma Unit. Despite the big-time antibiotics and repeated surgeries, the necrotizing fasciitis continued its death march up the inside of my thigh. But Dr. Robert O’Toole chased the infection inch by inch in his effort to salvage what he could. He went back many times, cutting away more dead flesh, bone, and muscle with each procedure. But he did it. He kept it from spreading. He saved my thigh.

So that’s what all those jagged, shark-attack scars were?! They were the reason I still had most of my upper leg and would one day be able to walk with a prosthetic?! At that moment it dawned on me that Dr. O’Toole had performed a miracle, that the thing I hated and didn’t want to admit was part of me was, in truth, a miracle.

After John left, I sat quietly and stared at the bandaged thigh, overcome with wonder, relief, and grief. At that moment, I took my first tentative step toward something other than self-hatred and denial. I felt my heart begin to soften. I realized that it could have been a lot worse. I could be dead. No, I should be dead. And I could have no leg at all, no hip, and nothing left of that side of my abdomen. Given these alternatives, I actually began to feel grateful for “it.”

That was the moment I named my leg. I suddenly remembered how I had laughed a few days earlier when my friend Pete, the medical equipment supplier, referred to it as “the residual limb.” I couldn’t help but be amused by the politically correct euphemism for “stump.” We had a winner!

I decided on R.L. for short. (Even its name was amputated.)  I began to talk to it. I thanked it. I gently patted it and held it in my hands, understanding that only the inside and underside of the thigh was mangled – the top and outer thigh were perfectly smooth and free of scars. After that, I began to change my own bandages. And I even started to take tiny peeks at it, figuring I needed to understand everything that brave and strong leg had been through.

Slowly, I began to see R.L. as a symbol for all of me, my own battered and scarred but miraculously surviving self. I stopped thinking of it as “it” and knew in my heart that if R.L. was part of me, she was a “she.” It would be months before I dared hold up a mirror to my shark attack scars and more than a year before the sight didn’t make me nauseous and panicked.

These days, R.L. is a trusted friend. She doesn’t hurt much at all. She’s healed flawlessly, and I’ve never faced any additional surgeries, which is quite unusual for my kind of ordeal. She’s given me no problems with bone spurs or broken skin. Knock on wood. And she has the joint and muscle strength to allow me to stand and walk using my prosthetic leg. 

R.L. is a survivor. She’s a warrior. She's a bad-mamma-jamma.

           She is me.

    

The (Very) Informal Dining Room

“Don’t come in here! I’m getting dressed!”

     “Jeeesh, mom. No need to freak out. We’ll go around the other way.”

     Trying to stop my eighteen-year-old son and his friends from seeing me in my underwear was just one of many challenges I faced while living in the dining room. The space where we used to gather over meals with family and friends had become the place where I slept, dressed and undressed, groomed, talked on the phone, and received home nursing care. Until I became strong enough to go up and down the stairs to my second-floor bedroom – which would take months – it was my only post-hospitalization option for living at home.

     I remember being confused the morning of February 26, 2012, when I woke up for the first time in a twin bed shoved into the corner of what looked like my dining room. It took me a moment to recap       . . . . I was very weak. I had one leg. I was no longer hospitalized, which was wonderful, but I didn’t want to be stuck here in the corner! I longed for my own room, my heavenly Queen-sized bed and its goose down comforter and buttery soft flannel linens.

I didn’t want to simply be in my home. I wanted to be at home. I wanted my old life back.

I knew my daughter was upstairs, and that was a comfort. Though my teenagers divided their time fifty-fifty between their dad’s house (five minutes down the road) and mine, they decided that for the first month after discharge from the hospital one or both of them would stay overnight, every night.

I turned on the bedside lamp and looked around at how different the room looked. The leaf from the dining room table had been removed, and what remained was shoved into the corner smack against the china hutch. Just a couple chairs were pushed alongside. But despite all the crowding, the room felt hollow. I noticed that the dining room and living room rugs had been removed. In fact, all the rugs were gone, even the hall runner and the throw rug under the kitchen sink. They were hazards for me now, I suppose. My wheelchair could get stuck on them, or I could trip while using my walker. 

Something else was missing. My dogs weren’t here! For the past twenty-three years of my life, the first thing I did every morning was exchange greetings with one or more canines. It had been a constant in my ever-changing world. The kids might be at their dad’s and the man in my life might vary – or not exist at all – but no matter what else was going on, my day always began with my dogs. And they weren't here! It made me so sad, but it was my choice. When I got sick, my ex-husband, John, had taken the dogs along with the kids, and he’d agreed to keep them even after I got home, until I was stronger. They were sweet and loving creatures, but exuberant and large. My yellow Lab was a hundred pounds of obsessive love and devotion, and my Labradoodle enjoyed hopping up on his hind legs and hugging me. I couldn’t deal with that yet. I was terrified of falling and paranoid about anyone or anything brushing up against my surgical sites. I knew our reunion would be over-the-top, and it wasn’t safe for me. The last thing I wanted to do was yell at them the first time I saw them.

I started to cry. How pitiful was this? I was such a blob of pain and fear and helplessness that I couldn’t even hug my own damn dogs.

This new life of mine – my legless, dogless, and rugless life – began that first morning in the dining room. It would be a life focused on the most basic of things, such as personal grooming and hygiene, bandage changes, resting, trying to stay hydrated, trying to eat, and enduring the visits of home health care nurses and therapists. But more than anything, this new life of mine revolved around the need for pain control.

I was on multiple meds, but the big mama of them all was a skin patch stuck to my upper arm or back. The small rectangle needed to be changed every three days so that it could mainline the goods directly into my bloodstream twenty-four-seven. This shit was one hundred times stronger than morphine. Really. I looked it up on Wikipedia. But  despite its potency, it was merely the foundation for a whole slew of drugs. I took so much crap that I needed a printed medication schedule to keep track, which I tucked inside the Tupperware container holding all my prescriptions. (My kids referred to this as my “snack bowl.”)

I was wasted out of my skull the first couple months I was home.

Hey, I admit that my college experience included guzzling cheap beer and/or the occasional opportunity to inhale. But I wasn’t interested in the hard stuff. I never understood why people wanted to untether themselves from reality and dissolve into a psychedelic nothingness. I knew I would never do that to myself.

Ha. Never say never. For a total of five months – three in the hospital and two at home – I existed in a loopy la-la land, slogging my way through a pharmaceutical fun house. The drugs turned me into a zombie. It was a Catch-22 of sorts, since I needed drugs to endure the pain but the drugs made all of the new “real-life” challenges I encountered at home a hundred times more difficult and dangerous.

I was stoned every time I tried to safely get in and out of bed and in and out of my wheelchair. I was stoned each time I hopped along on my walker. I had to use the bedside commode and eventually teach myself how to use my new handicapped-accessible bathroom facilities while stoned. The first time I took a shower, I was stoned out of my mind and nearly fell. I had to do physical therapy exercises stoned. I had to learn to operate the microwave, can opener, stove, and toaster oven while stoned. I was stoned when I tried to dress myself, eat, drink, and carry on conversations in person or on the phone. I was too stoned to write thank you notes, let alone a paragraph for a novel. I was too stoned to read any of the books my friends brought me, or figure out my medical bills, or remember the reason I had just wheeled myself from one room to another.

It seemed there were only four things I was good at while stoned: cat napping, watching TV, listening to music, and staring at the fire. I discovered entertaining television shows I never knew existed, such as Castle, The Mentalist, and NCIS. Seriously. I had never watched any of them, and I quickly got to the point where I’d say this to anyone who happened to be nearby – “Shhhh. My show’s on.”

Naps were essential because I didn’t sleep well at night in the dining room corner. I kept waking up to the alien sound of the old radiator near the head of my bed. I guess I was more accustomed to the steady stream of alarms, beeps, and “Code Blue” announcements of the Shock Trauma Unit. Plus, I was either too hot or too cold. And I couldn’t get comfortable. I had what doctors refer to as “breakthrough” pain, meaning my narcotics cocktail couldn’t keep my nerve endings from screaming, my chopped-off bone from aching, and my flesh from throbbing and tingling.

I may have been lonely for my own dogs, but somebody else’s pet had managed to turn my mornings into a living hell. My neighbor’s pug dog, Mary Stewart, greeted each new day with a specific routine. She would press her little blackened and schnarveled-up face into the fence about ten feet from my dining room window, and let loose with a staccato machine-gun firing of barks, always in the same five-beat rhythm and always at the same brain-piercing pitch.

Aeurgh, aeurgh, aeurgh, aeurgh, aeurgh! 

Aeurgh, aeurgh, aeurgh, aeurgh, aeurgh!

Aeurgh, aeurgh, aeurgh, aeurgh, aeurgh!

Aeurgh, aeurgh, aeurgh, aeurgh, aeurgh!

I may have been stoned, but I wasn’t stoned enough to remain unaffected by Mary Stewart. She drove me flippin’ insane.

Okay. So perhaps the homely little dog wasn’t entirely to blame for my sleep deprivation. It was partly my fault. I got cocky those first nights home and tried to sleep in a position other than flat on my back, the way I’d spent most of the last three months of my life. I propped myself up on my right side, a blanket shoved behind my back and my surgery sites supported and protected by pillows. It felt exotic, and it gave me a glimpse of how normal people sleep, but it wasn’t restful.

The dining room, before it became a sick room and dispensary

Days passed. Little things happened. One day I got to sit on my front porch in my wheelchair, a bright patch of sunshine warming my pasty hospital skin. My kids made me laugh frequently. I missed my dogs more every day. I remained stoned out of my gourd.

My caring friend Leslie came by to make me breakfast every morning, and I always asked for the same thing – one hard boiled egg, one turkey sausage patty, an English muffin, and cranberry juice over crushed ice. I would eat this in my comfy living room chair every morning, a tea tray over my lap and my leg propped up, flipping the remote between Good Morning America and the Today Show.

More days passed and more stuff happened. Friends stopped by to help with laundry, run errands, or keep me company for a bit. A group of volunteers designed a wheelchair ramp for my back yard and began to bring in lumber and supplies. Another friend brought me a pair of scissors, a kindness she began to regret as she watched me cut off the lower left legs of all my jeans and sweat pants in an effort to create a sassy, post-amputation wardrobe.

And after each day passed, I would return to the little bed in the corner. I would be in that bed by eight P.M., even if the kids were still up and making a racket in the kitchen or watching TV in the living room. The noise didn’t bother me. Those were the comforting and familiar sounds of my old life. The arguing and laughing, the cabinets slamming, the bathroom plumbing swooshing – it was what normalcy sounded like.

I would lie in my corner retreat, staring at the warm burgundy wallpaper with its swirls and filigrees. I’d cry quietly to myself, remembering how I’d carefully selected the color and pattern for this room all those years before. Before. When it was a dining room. Before it became a recovery room and dispensary. When I was still me.