Hell On Wheels

A decade before my illness, I had my first experience with one of those electric carts for disabled shoppers. My late mother, Beverly, dealt with scoliosis most of her life, and began using a walker in her seventies. One day she got a hankering to go to the local Kmart, so off we went, and upon arrival, she decided it would be fun to drive a cart around the store. I had my doubts. Beverly had never been what you would call a “savvy” driver. Many of our all-time favorite family stories revolve around her creative approach to owning and/or operating moving vehicles.

          For example, there was the day my mother decided to drive from our Cincinnati suburb to Dayton, where my older sister lived at the time. She took the exit for Interstate 71 North, but when she spied the road sign that proclaimed Columbus 95 mi she panicked. “Oh, my God! We’re trapped on this highway all the way to Columbus! I don’t want to go to Columbus!”

Fast-forward thirty-five years to that day at Kmart. Though I knew my mother’s electric cart adventure might turn into one of “those” stories, I got her situated and showed her how to work the forward and backward hand controls. Within seconds, she’d bulldozed an entire underwear display rack, sending a polyester tsunami of bras and panties into the jewelry department. She gasped. “Oh, hell, Susan! I think that was the reverse!”

As much as it pains me to admit, I have now had a few motorized cart moments of my own. Ironically, my favorite occurred in that very Kmart just weeks ago, while I was Christmas shopping. You may wonder why I use a cart if I have a prosthetic leg. The answer is complicated, and I’ll devote many blogs to what it’s like to live with a prosthesis, but for the purposes of this particular story I’ll sum it up this way: the leg hasn’t always fit correctly and had a tendency to fall off at inopportune moments; it is exhausting and time-consuming for me to walk through a big store; and if it’s crowded, riding in a cart is the safest option. Before I get to my Kmart Kristmas Kart Katastrophe, here are some of my other favorite motorized memories.

About two months after I got home from the hospital, I decided to make my first solo visit to the grocery store. It was a very big deal, one that required advance planning, stubbornness, and luck. I had just received my first temporary prosthetic leg, a very low-tech contraption I barely knew how to wrangle, and was using crutches to keep me upright. I made it down the steps to the driveway, opened the car door, hobbled inside, drove five minutes up the road, made it safely from the parking lot to the entrance of the grocery, found a motorized cart, fell into the seat, unplugged the cord, hoisted my dead-weight fake leg on board, drove off slowly and cautiously to the customer service desk where I left my crutches for safekeeping, then headed to the produce section, where I promptly backed into a display of hothouse tomatoes.

“Oh, shit!” I hissed.

Yes, I’d become my mother. It was a humbling moment.

Let me be honest. I rely on these mobility carts and they contribute to my independence. But I hate the suckers. I’m only now letting go of the embarrassment and shame I’ve felt while at the controls of one of these things. I admit that in the past I've avoided eye contact with people smiling down on me with empathy or granting me access to the soup aisle with the flourish of a matador. Now I just try to smile back. Some days are easier than others.

There is one aspect of motorized shopping that I despise more than words can express, and that is the shrieking alarm that activates whenever the cart is put in reverse. The decibel level is more suited to a sixteen-wheeler backing into a loading dock, and in my mind, the cringe-worthy sound warns shoppers to grab their children and seek shelter in the nearest alcove because the out-of-control disabled lady is about to crash into their asses.

But since I need them, my retail choices are no longer based on location, merchandise quality, or price, but on whether they have a stable of motorized carts. If I pull into a familiar store and find most of the handicapped parking spots filled, I turn around and leave. There won't be any carts available.  If it’s a store I haven’t shopped in since my illness, I will call in advance to make sure it’s not a wasted trip. Unfortunately, more than once I’ve shown up at a pre-certified shop to find every one of their carts out of order, heaped together in a corner near the Coinstar kiosk, electric cords lifeless and flaccid, as disturbing a sight as the “Island of Misfit Toys” from the Rudolph the Red-Nosed Reindeer cartoon of my childhood.

While driving a cart, I have been known to avoid acquaintances I haven’t seen since my illness, just so I won’t have to answer their inquiries. It’s difficult to respond with the usual “I’m fabulous! Crazy busy!” as I’m reaching for the marinated artichokes from a seated position. It’s even worse when someone I haven’t seen in years approaches with a look of horror and I have to explain what happened to me. Seriously, sometimes a girl just wants to grab laundry detergent and milk and go home without being asked to bare her soul.

Shopping for Boston ferns 

There was one event that helped me to let go of my shame. My friend Martin and I needed to get ingredients for a cookout and went to the grocery together. Because he knew I was embarrassed about using a cart, he hopped on one, too. We spent the next half-hour selecting produce, racing through the bakery department, and laughing. In a turn of events I will remember the rest of my life, I had just made eye contact with a gynecologist’s wife I used to socialize with when Martin chased me into the pharmacy section shouting, “Don’t forget the KY Jelly! Get the economy-sized bottle!”

After surviving that level of embarrassment, what could possibly bother me?

Ah. Let’s go back to Kmart, shall we?

Yes, it was unwise to attempt last-minute Christmas shopping, but I really had no choice. Unfortunately, we were moving to a new house during the holidays, and life was so chaotic that gift shopping wasn’t a top priority. But eventually it was a do-or-die situation, so I set out to Kmart. Because they had motorized carts.

           Things got weird almost immediately. A woman talking on her cell phone was leaning against what appeared to be the store’s only available motorized cart, her rather large butt pressed against the wire basket. I tried to get her attention. “Excuse me, I’d like to use this.”

She turned briefly, looked at me, then went back to her phone call.

“Uh, excuse me. I need this cart, please.”

“Hold on,” she said into the phone. She turned around again and rolled her eyes, sighing, then moved just enough that I could lower myself into the seat without brushing my forehead against her right butt cheek. I fantasized about running her over, then putting the cart in reverse and running over her again, but somehow restrained myself.

So I cruised out into the Kmart aisles, alarmed to find the place packed with merchandise and irritable last-minute shoppers such as myself. The cart was exceptionally slow, which frustrated not only me but anyone stuck behind me. I heard many an impatient exhale as I chugged through the kitchen accessories and the curtain rods. By this time, I started to get a bad feeling. Maybe this hadn't been such a great idea.

I grabbed the step stool I needed. I found some glassware. I found a few little stocking stuffers. But I still needed to buy lights for our Christmas tree, as our stash was damaged during the move. Of course, the Christmas décor was at the very back of the store, in an attached greenhouse used for lawn and garden merchandise in warmer months. The cart began to whine and tremble, but I made it through the automatic doors to the greenhouse, grabbed a roll of 400 mini lights, and headed back into the main store. The cart died on the threshold, and I couldn’t move forward or backward. The doors began to open and close in automated confusion, banging up against the base of the cart over and over again. So there I was, trapped in the doorway, getting the crap beaten out of me by large glass and steel doors, my cart overflowing with merchandise made in China. 

I spied a store employee and called for help. He yanked me clear of the jaws of death and went to get another cart. Fifteen minutes later, he returned, explaining that he had to wait for one to become available, but that he was pretty sure this one had enough battery power to get me checked out and to the parking lot.

Not wanting to risk another dead cart – and since I was dangerously close to tears and/or hysterical laughter – I made a beeline for the cashier. After waiting another fifteen minutes, it was my turn to pay. With the cart parked in the narrow lane between my cashier and the cashier working the adjacent register,  I began to place items on the belt. Suddenly, the cashier beside me turned and jammed her elbow into the back of my skull. I was stunned -- a "bird-crashing-into-a-picture-window" kind of stunned. I saw stars.

“Sorry about that, hon! I didn’t see you down there. Could you move so I can go get a price check?”

Eventually I made it to my car and tossed my Kmart cornucopia in the trunk. Only after I was safely on my way home did I start to laugh. Oh, how I missed my mother at that moment! I wanted a few more minutes in her company so that I could tell her this story. She'd enjoy knowing the baton had been passed.

HAPPY HOLIDAYS!

I'm in the process of moving (which is a whole 'nuther story.) Plus it's the holidays. I'll be back as soon as I can get my act together. Hope to see you then!

I wish everyone a lovely season of gratitute and celebration.

The Near-Death Diet Plan

My father’s sister was known for her muscular calves. Aunt Hazel, or “Hazy” as we called her, had been a track star in her youth. She was much older than my dad, so I remember Aunt Hazy as a feisty senior citizen, when the only running she did was from the stove to the pantry. Her muscular legs endured, however. I remember sitting at the kitchen table in her Ohio farmhouse, watching her zip around in her cotton floral-print dress and orthopedic shoes, calf muscles bulging. For good or ill, I inherited those calf muscles. My ex-husband, John, had a pet name for my lower extremities: “Aunt Hazy legs.” 

So imagine my confusion that day in the hospital when I looked down at my remaining lower limb to find . . . a stick. A chicken leg. The first time John saw it, he mumbled, “Oh, my God.”

I don’t know how much weight I lost in the hospital and after I returned home, but it was all muscle atrophy. The strong body I’d once had was gone. The achievements of a year’s worth of excellent nutrition and cardio, free weights, squats, crunches, planks, kickboxing, Zumba, and walking had been obliterated by my illness. I was a limp and floppy blob. There were two main reasons for my blob status: I barely ate anything and I spent most of my three months in the hospital flat on my back.

 My first attempts at building strength were pitiful.  Simply being propped up in the hospital bed was too exhausting. But as time went on I learned to grip the bed rail and roll to one side enough to use a bedpan. That was followed by other fitness milestones – lying on my side for a few minutes, sitting on the edge of the bed without fainting, and turning over on my stomach and lifting my head.

My biggest accomplishment occurred during the week I spent on the rehab unit of my local hospital prior to skin graft surgery. With the help of two nurses and a male orderly, I slid across a board and transitioned from the hospital bed to a chair, where my goal was to sit upright for ten minutes. This fitness regimen wasn’t exactly the Insanity workout from cable-TV, but it was a huge mental and physical shift for me. For the first time in months, I found myself somewhere other than a bed, gurney, or operating table in a position other than prone. There was no time to pat myself on the back, however. After reaching my ten-minute goal I was completely exhausted and dizzy – and I had to somehow get myself back in bed. This meant I needed to push myself from the chair and pivot to sit on the sliding board. I couldn’t do it. I didn’t have the strength and I didn’t understand how I was supposed to get a one-legged body to do what I wanted it to do. I started to shake all over as I realized I might very well fall on the floor.

Right then, it hit me: My life was changed forever. This body wasn’t the old, reliable friend I’d had for fifty years. This body was alien to me in every way. I didn’t understand how it worked. I couldn’t trust it. I wasn’t sure how I’d be able to live my life in it.

I didn’t want it.

It was high drama getting me back into that hospital bed. The nurses and orderly were scared I was going to fall, too. I was a trembling, crying mess. But they somehow helped lower me to the board and slide me back to the safety of my little bed island. I was so worn out from this ordeal that I could barely move.

It was a start.

A few days later, I was thrilled to be able to I transfer myself, without help, into a wheelchair. To celebrate, my best friend, Arleen, and her brother, Martin, took me for a spin around the hospital. It was a cold, late-January day, but I told them it didn’t matter – I had to breathe fresh air and feel the sun, if only for a few seconds. I did it, and it was glorious. We continued our indoor excursion, but after about fifteen minutes I was spent.

It didn’t help that I wasn’t eating. When first admitted to Shock Trauma, I was hooked to an NG tube, a feeding tube inserted through the nose that provides hydration and nutrition. Once that was removed, I continued to receive IV fluids and was offered cans of nutrition shakes benignly labeled as “chocolate,” “vanilla,” and “strawberry.” Privately, I thought of them as “pretty bad,” “vile,” and “the pink shit.” But the nurses insisted, so I tossed back those loathsome concoctions until I couldn’t manage another mouthful.

I was rewarded for my effort with solid food: Trays of sometimes-recognizable vegetable, starch, and protein combinations fresh from hell’s kitchen. My personal favorites were the fifty-shades-of-gray meatloaf and brick-baked chicken. (Not to be confused with chicken baked in a brick oven.) I’d usually manage to swallow a couple bites, especially after the nurses explained that my healing was slowed by my lack of eating.  When the nutrition shakes showed up on my tray again, and I got the hint. So I tried my best to eat more.

"Fifty-shades-of-gray" hospital meatloaf 

Maybe this is where I should explain why this is so bizarre. My problem has always been making myself stop biting and swallowing, not this weirdly anorexic relationship with food. The nurses said it was due to my pain medications and the constant general anesthesia, but my guess is the complete absence of salt, flavor, or real butter had a lot to do with it, too. The only time I had any appetite was when someone smuggled in actual food for me. The hottie brought me chicken noodle soup. A friend who owned a coffee shop in Baltimore brought me homemade soups and sandwiches. Arleen and another friend, Frank, brought me cranberry juice, teas, fresh fruit, and soups. (Yes, soup was my fave.) But it was a real challenge to eat the hospital food.

I remember how thrilled I was when, two days before I was to be discharged from University of Maryland, my dinner tray was delivered with a “VIP” card placed on it, along with a cloth napkin instead of the usual paper variety. I glanced at the covered plate, then looked expectantly at my nurse.

“Why does this say ‘VIP?’”

She shrugged. “Maybe because you’re an author.”

“Uh, OK. But why now? I’ve been here almost three months.”

“Maybe they just noticed,” she said.

I perked up. “Does this mean the food will be better?”

“No. It means you get a cloth napkin.”

Near the end of my last round of rehab, friends started bringing me treats. I had no interest in them. Arleen smuggled in some Thai coconut shrimp and it was delicious, but I could only eat a few bites.

The next culinary shock came when I was discharged for good. Imagine the abject horror of my fellow romance writers who were there to greet me on the day I came home. I found my house stacked to the rafters with chocolate, and I had to tell them the sad truth – I’d lost my taste for it. Along with my taste for coffee, sweets in general, Doritos, melted sharp cheddar, and anything too fatty, salty, or rich. In other words, every staple known to the romance writing community. It was downright blasphemy.

Thank God that once I started physical therapy and got back in the gym with my trainer, my muscles began to rebuild. And once I weaned myself off all narcotic pain meds, my appetite roared back to its previous vigor. I must report that coffee, chocolate, and cheese have reclaimed their proper place in my life, and I’m back to my familiar goal of trying tame my appetite, not boost it.

Goodbye extra-skinny chicken leg! Hello Extra Crispy KFC!

Be Careful What You Wish For

After my head-on collision with ineptitude at the nursing home, I was thrilled that my insurance company allowed me to transfer to my local hospital’s rehab unit. It was a brand-new, clean, and beautifully designed facility just minutes from all my friends and loved ones. I thought it would be the ideal place to let my wound heal in preparation for skin graft surgery, which was the Holy Grail of this entire medical melodrama.

          See, once I received skin graft surgery – and if there were no complications – I could continue on to more physical therapy and then, eventually, I would get to go home.

           Home!

If I remembered correctly, home was that place where I could make myself a cup of tea whenever I felt like it. It’s where I could laugh with my kids, play with my two ridiculously goofy dogs, have people over for dinner, snuggle under the flannel sheets, listen to music while I tidied up the kitchen, and sit in the sunshine on the front porch and chat with my neighbors. Home was the place where the real Susan used to live, not this hollowed-out, barely-there shadow of a person I had become. I hungered for that simple little life in that simple little house, and I figured that my local hospital was the closest I was going to get to it at the time.

I was assigned a lovely private room with a big window through which I could see the actual sky. There was seating for visitors and a large, sunny rehabilitation facility down the hall. (There was also an en-suite bathroom with a big shower, but I was nowhere near ready for that great leap toward normalcy. I could only stare longingly at the indoor plumbing while giving myself a sponge bath or requesting a bedpan.)

The first night in my new digs was difficult, because I was still coming down from the narcotics overdose. And though I was immensely grateful to be anywhere other than the Pit O’ Despair Nursing Home, I wasn’t able to relax. It soon became obvious that the kind and attentive nurses and doctors on the rehab unit weren't used to dealing with an open wound like mine. And that terrified me.

As you might have noticed in previous blog entries, I’ve made an effort to gloss over the gory details of my medical ordeal. But this is where I need to explain the reason for my terror. Not only was I was weak, exhausted, confused, drugged, and in intense pain, what remained of my left leg was essentially raw meat. I’d never even dared look at it. It was an act of self-preservation – I didn’t think I’d be able to handle knowing what my amputation site looked like. So while at University of Maryland’s Shock Trauma Unit, I put a sheet over my face when doctors or nurses needed to do something with it.

But since most of the wound was on the underside of my leg, I was able to watch when Shock Trauma nurses applied fresh bandages every morning and night. It’s a damn good thing I did, too, because some of the nurses in the rehab unit had no idea how to bandage it. On my first night there, I had to talk the nurse through the process step by step. (First, you place sterile gauze on the open wound. Then, you cover the surgical staples close to my groin with at least two layers of sterile gauze. Next, you wrap the whole leg, starting at the amputation site and . . . )

Though this completely freaked me out, I tried to be tactful as I told this very sweet and kind nurse how to do her job. I didn’t want to piss her off, but I also needed my leg properly bandaged to protect the wound from infection. I was, essentially, at the mercy of these nice people. I was helpless. And though I knew they were trained health care providers who knew far more than I did about tending to the sick, this was my life. And the very nice nurse wasn't sure how to bandage my leg!

W. T. F?

After everything I’d been through – the surgeries, the the pain, the nursing home from hell – I now had to worry that these well-intentioned people at  my local hospital might undo much of what the University of Maryland Shock Trauma team had achieved.

My concerns continued. The bandage would fall off every time the physical therapists would work with me, and sometimes that meant the amputation site would touch the plastic upholstery of the therapy table. I’d cry when that happened. I came to dread physical therapy, not because I didn’t want to do it but because I worried about my leg being exposed.

There were other problems.  I had no wound vacuum, so the amputation site wasn’t being drained. The hospital had no heat lamp available to use on my leg, either. I asked my attending physician if my family could buy one and bring it in. He said no, that any equipment used on the premises had to be hospital-issued because of safety and liability concerns.

So there I was. Bandages falling off. No heat or drainage to aid in healing. Worried about infection. Worried that the wound wouldn’t be ready for the skin graft. I expressed my concerns to my kind but exhausted and overworked doctor, who patted my hand and told me I worried too much.

After a week in my hometown, my orthopedic trauma surgeon at University of Maryland wanted me shipped back to Baltimore so he could assess my progress. My belongings were packed and I was waiting for medical transport to show when my attending physician came in. He needed to examine me prior to discharge from the rehab unit.

“Hmm,” he said, poking around. “I’m afraid the wound is infected.”

I cried.

Later that afternoon, when my trauma surgeon looked at my leg and heard about my nursing home debacle, he got angry. “I’m readmitting you. I’m not letting you out of my sight until you’ve had your skin graft, and if your insurance company doesn’t like it they can come talk to me.”

So that’s how I ended up back on the Shock Trauma unit, worse off than when I’d been shipped out ten days before. But, hey, I finally got a wound vacuum and heat lamp, so I had that going for me.

December 4

It is December 4, 2013, exactly two years from the day I was helicoptered to University of Maryland Shock Trauma, where doctors expected me to die.

Today it is sunny and cool. I had eggs and toast for breakfast, checked my email, played ball with my dog, and now I'm getting ready to do some writing before I have to leave for a doctor’s appointment.

Today, my novella A PARTRIDGE IN THE AU PAIR’S TREE helps launch StoryFront, Amazon Publishing’s new short fiction program. SEA OF LOVE, my first full-length novel since my illness, was released yesterday. A novella in the CHRISTMAS ON MAIN STREET anthology came out a few weeks ago. I am up to my eyebrows in promotion.

Today, I’m in the process of moving to a new house that will be easier for me to manage.

Today, I will drive myself to Baltimore to get steroid shots that will help with pain. I will use my prosthetic leg and two canes to walk from my car, through the lobby, and down the hall to the reception desk of my doctor’s office.

Today, I am blessed with friendship and support.

            Today, I am under contract for four more novels.

            Yes, the last two years have been filled with intense frustration and grief. But there’s been joy and laughter, too. I guess that means I’m just another member of the human race.

I’ll take it.

I am alive today, December 4, 2013, and I’m grateful.