Saturday, November 30, 2013

Dr. Kevorkian's Party Palace

I sometimes write trilogies, books connected by characters, setting, and/or backstory. I always encourage readers to start with the first novel in the series and work their way through to the last. Things make more sense if the books are read in order. The funny stuff is funnier. The sad stuff is sadder. The heartrenching stuff is renchier. So for that reason, I politely ask anyone who hasn’t read my previous blog entries to go back and start at the beginning. I promise it won’t take long. They’re short. You’ll be glad you did.
     I’ll wait.
     Welcome back. So we’re all caught up, now. I almost died from an unexplained case of flesh-eating bacteria, underwent multiple surgeries including the amputation of my left leg from above the knee, and  spent about six weeks the UMM Shock Trauma Unit in a opiated haze of agony, fear, and loneliness.
This is where things take an appallingly unfortunate turn. I wish I were making this up, but I’m not.
           It was mid-January. My amputation was slow to heal and my insurance company was getting antsy.  Because I had so many complications, UMM believed I needed to remain in Shock Trauma while on their watch. This didn’t make my insurance company happy. As they pointed out, they were paying top-dollar for me to begin physical therapy and lounge around waiting for my wound to heal. I’ll sidestep all the gory details, but here was the issue: the amputation site needed to be adequately drained and healed before I could receive a skin graft, which would be the final stage of surgery. To aid in healing, a wound vacuum was attached to my leg at all times and I received several sessions of heat lamp therapy a day. As the doctors explained, this process could not be rushed. If surgeons attempted a skin graft before the amputation site was ready, it would almost certainly be a disaster. The graft wouldn’t hold and it would lead to more surgery and more hospitalization, which nobody wanted. So my insurance company decided I should be transferred to a facility that could provide sub-acute care at a lower cost. The plan was for me to heal and receive some physical therapy, then go back to University of Maryland for the skin graft. I really wanted to go to my local hospital’s rehab unit, but the insurance company refused, saying I didn’t meet requirements for coverage at that facility. So I was shipped off via ambulance transport to a nursing home in my town, about an hour-and-a-half away from Baltimore.
My loved ones were so excited. I’d be close enough to visit every day. The ever-optimistic Arleen busied herself with gathering up my sports bras and workout shorts to wear to physical therapy. She even bought me some new pajamas, assuming my hospital gown days were over.
Within twenty-four hours, I was once again on death’s door. The nursing home staff had drugged me with four times the amount of painkillers prescribed by my doctors at Maryland Shock Trauma. When Arleen showed up with my workout attire, she found me unresponsive in my bed. The sling used to hold my arm in place after my pacemaker surgery was now wrapped around my neck, choking me. Apparently, this is the moment my usually demure BFF went completely ape shit. Arleen began shouting for help, pulled the sling from my neck, then proceeded to rip the charge nurse a new one, demanding to know how this could have happened.
The nurse pleaded HIPPA – the Health Insurance Portability and Accountability Act designed to protect patients’ privacy – and said she couldn’t discuss my case with her. Arleen’s account of what happened next still makes me smile. I wish I had been conscious because I sure would have liked to have witnessed it.
 “HIPPA my ass!” Arleen recalls shouting. “Do you HIPPA know what Susan’s been through? Did you HIPPA hold her hand, wash her hair, and give her a spa treatment in the hospital? Do you HIPPA know Susan hates horseradish and makes brownies when she’s stressed?”
Arleen called my ex-husband, John, who’d already been notified and had instructed the nursing home to call an ambulance. Arleen rode with me in the ambulance and met up with John in the local ER, where I began to be treated for narcotics overdose.
Remember my story about The Screamer down the hall in Shock Trauma? Well, this was my turn.
Whether it was withdrawal, the drug ER doctors gave me to counter the overdose, the catheter a nurse was trying to shove in me, or a combination of all the above, I began screaming bloody murder from behind the ER curtain. Arleen and John had been with me through everything – the amputation,  kidney dialysis, dozens of surgeries – and they’d never heard a peep from me. What they heard at that moment brought both of them to tears.
I was wailing like a banshee.
Arleen couldn’t take it anymore. She jumped up and threw the curtain open, stood by my bed, and held my head in her arms. She recalls, “I just told you I was here. That you were going to be ok. That we all loved you and you would make it through this.”
I spent several days in the intensive care unit at my local hospital, slowing coming out of the overdose. During this time, I endured the most sinister nightmares of my life. They were beyond creepy. The dreams featured complicated plots and malevolent inhuman beings, and I would wake up shaking and crying, terrified out of my mind. During this period, I started calling my friend Celeste Bradley. She lives two time zones away and is a night owl by nature, so if it was three A.M. for me, I knew she’d be awake, alert, and probably writing. She talked me off the ledge more than once.
Around this time I started getting collection calls on my cell for care I’d received at the beginning of my health disaster. Yes, that’s correct. I was in the intensive care unit of the very same hospital now calling me about the overdue bill for my ER visit back in December of the previous year. All I could do was laugh. It was just too ridiculous. I told the woman I’d take care of my bills as soon as I was strong enough to hold a pen to write out the check.
At this juncture, I asked myself, “What’s wrong with this picture? What’s wrong with our health care system? WTF is wrong with this country?”
I bounced back from the overdose, and the issue was at hand again – where would I be shipped off to next? I told my doctors and my family that I HAD TO stay at my local hospital. I told them they HAD TO find a way to get me in the rehab unit there, where I could be close to those I loved. I begged everyone from the doctors to the janitorial staff not to send me back to Dr. Kevorkian’s Party Palace.
My insurance company said the only way they would approve that level of care is if I could make several hops forward on an aluminum walker. This seemed impossible, considering I'd just OD'd. I had been plenty weak before the overdose. Now, I felt like a floppy slice of bologna. My good leg was shaky and numb. My arms were wobbly. But I believed I had no choice. My life depended on it. So I did what the insurance company asked. I don’t know how, but I hopped around on the 'effin walker.
As my brother, Sean, observed, “It’s amazing what a girl can do when she’s not loaded up on elephant tranquilizers.”
About a year later, I was doing my regular outpatient physical therapy and learning to walk with my prosthetic leg. A young woman who worked there came up to me with a strange look on her face. She smiled shyly and said, “You don’t remember me, do you?”
This had happened before. I remembered very few of the kind and skilled people who had helped me in some way during my health crisis. I admitted to the young woman that I didn’t recall meeting her.
She told me she had been the freelance physical therapist at that nursing home. She told me that she was instructed to work with me but found me unresponsive. She said she reported to the nurse that I was comatose. The nurse told her to go back in the room and move my leg up and down a few times so they could bill my insurance company for the physical therapy.
I listened to this woman’s story with my mouth hanging open. Then I snapped it shut because, really, was it so hard to believe?
Often during my illness and recovery, I would stop and thank my lucky stars that I had people to advocate for me when I was too weak and overdosed to do so myself. I wondered what happened to people who didn’t have Arleens or Johns or Seans to stick up for them. Now I think I know.
They’re screwed.

Thursday, November 28, 2013

Boy, I'm Glad I Did That

Perhaps I’ve always known something like this was in my future. Maybe somewhere in the back of my brain, I understood that I’d better get while the gettin’ was good. I suppose it’s possible.
I wonder about this because I’ve always been grateful for having two strong, healthy legs. I didn’t take it for granted. I remember a day not long before I got sick, where I was walking my dogs around my neighborhood, breathing in the cool autumn air, feeling the sun on my face, and thinking how fortunate I was to be in the world as an able-bodied person with two sturdy legs to take me wherever I wanted to go. This wasn’t an isolated incident, either. I used to think this a lot when I walked the dogs.
Have I always known a one-legged existence was lurking around the corner for me? I remember from a very early age telling myself that I needed to cram as much into my life as possible. When an opportunity popped up, I would remind myself that I should take advantage.  For as long as I can remember, I’ve asked myself this question: “In the future, what will you regret more?  Going for it and having it not work out, or not having the courage to try at all?”
     I almost always went for it.

Jamaica, 2005

     Since today is Thanksgiving, I thought it would be a perfect opportunity to make a list of the things I’m really glad I did while I could. It is not a complete list, but you’ll get a general idea. And I mean no offense to anyone reading this who lives with a physical limitation of some sort. Yes, many of these things are possible if you’ve lost mobility or one or more limbs. Prosthetic limbs can do wonders. All kinds of wheelchairs and scooters can go all kinds of places. And there are accessible alternatives for almost anything if a person is determined not to let physical challenges hold them back.
     This is simply my perspective. I am learning new ways to do many things, but when I look back on my life, I’m damn glad I decided to go for it as much as I did. Here are some of the things I'm happy I got to do when I had two legs:

·      Swim in the ocean
·      Make love all night
·      Canoe
·      Dive off the high dive
·      Ride a motorcycle
·      Skydive
·      Walk all over Manhattan
·      Cook a Thanksgiving Dinner for a crowd
·      Go on a safari in Kenya 
      Swim with dolphins in Jamaica
·      Skinny dip in at night in the Pacific Ocean in Costa Rica
·      Hike along the Appalachian Trail with my dog
·      Play fast-pitch softball
·      Play racquetball
·      Play tennis
·      Take yoga and Pilates and Zumba classes
·      Learn to kick-box
·      Dance the night away in Chicago punk clubs
·      Sing in a rock band
·      Sing in a blues club
·      Sing in a classical chorus
·      Perform in musical theater
·      Paint a lot of walls, many of them with faux finishes
·      Snorkel along choral reefs
·      Live as a foreign exchange student in Japan
·      Complete my college education
·      In my reporter days, chase down an uncooperative source in a parking garage
·      Travel to Spain
·      Chase down a pickpocket in Barcelona, corner him, and get my shit back
·      Learn archery
·      Perform an impromptu dance to the song “Everybody Was Kung Fu Fighting” at a wedding reception
·      Jump on a trampoline
·      Play with my kids in the sprinkler
·      Catch fireflies with my kids
·      Garden
·      Hang wallpaper
·      Give workshops
·      Climb to the top of the Washington Monument
·      Participate in huge booksigning events in convention halls
·      Downhill ski
·      Cross-country ski
·      Build snowmen with my kids
·      Ice Skate
·      Go on first dates
·      Backpack in the mountains
·      Roller Skate
·      See Broadway plays
·      Hold hands and walk along the beach with a man I love
·      Go sailing
·      See a whale breech in Alaska
·      Witness an Inauguration on the Mall in Washington
·      Witness an iceberg break apart
·      See the aurora borealis from a campsite on Prince Edward Island
·      Go antiquing
·      Go horseback riding
·      Build bonfires
·      Ride a bicycle
·      Play in the rain
·      Slow dance with a man I love
·      Learn to jump on horseback
·      Carry my babies in my arms
·      Swim in a public swimming pool
·      Go to wild parties where the police were called
·      Walk around the grocery store
·      Do the splits
·      Take ballet classes
·      Walk around the shopping mall
·      Walk through pro baseball parks and football stadiums
·      Attend presidential campaign rallies
·      Run down the dock and jump in the lake
·      Race through the airport to catch my connecting flight
·      Take a shower standing up
·      Climb on the roof to watch Fourth of July fireworks
·      Play an instrument in a marching band
·      Swing dance to a big band
·      Jump up and down at rock concerts 
      March in Chicago's St. Patrick's Day Parade
·      Make love on the beach in the moonlight
·      Hike to the top of a volcano
·      Tour Biltmore Estate
·      Climb to the top of a lighthouse
·      Ride the Navy Peer Ferris wheel in Chicago
·      And walk on foot around some of the world’s most amazing places -- Key West, New Orleans, Santa Fe,  London, the Grand Canyon, Tokyo, Seattle, San Francisco, Montreal, rain forests and deserts, underground caverns . . . and the sidewalks of my neighborhood

I remember after I’d been home from the hospital about a month, a dear friend offered to take me to my bank. It was a real ordeal, since I wasn’t strong enough to use a walker and a prosthetic leg was still off in the future. So she came to get me, guided me down my wheelchair ramp, helped me out of my chair and into her truck, folded up my wheelchair, and reversed and then repeated the process in the bank parking lot. As my friend wheeled me in, a woman casually strolled through the parking lot and down the sidewalk. She held the door open for us and we thanked her. A few moments later, my friend asked, “Do you ever get angry at people for having two legs?”
     I laughed and said “no,” of course I wasn’t angry with them. I explained to my friend that I went around this planet for fifty years on two legs, and I would never begrudge someone else that experience.
     Recently, I wondered if I would have answered her question differently had I decided to put off doing the wonderful things on that list of mine. What if I had told myself I could postpone these things for another day, and then woke up the next morning to find I’d lost a leg? Would I be bitter and enraged? Would I feel cheated? If I hadn’t gone for it when I had the chance, would I regret it with all my heart?
      Hell, yes.

Monday, November 25, 2013

Sex, Lies, and Amputation

I’ve written quite a few blog posts about my health crisis thus far. In my very first essay, I mentioned that at the time I got sick I was dating a Hottie, a man twelve years my junior. Here is a sampling of some of the comments I’ve received via email loops and social media from my fellow romance writers.
“We want to hear more about the Hottie!”
“Details, please! Don’t keep us waiting!”
How much younger did you say he was?”
“Are you still with the Hottie?”
Sigh . . . All right, already. Let’s do this thing. Here’s the story of the Hottie. 
He came into my life after I’d been divorced nearly six years. During that time I’d had only one relationship and it had drawn its last wheezy breath almost a year prior. Let me be blunt – full-time writers don’t get out much, and I certainly wasn’t getting any younger waiting for a man to magically appear in my office as I typed, alone, for up to fourteen hours a day. Besides, my FedEx guy was married.
By the Summer of 2011, I was ready to find someone special. Strike that – I was ready for someone spectacularly special. So I did it. Lord help me, but I tried online dating.
I had mixed results. By “mixed” I mean that one percent were nice men; two-thirds were pathological liars; and the balance collected taxidermy knives and dwelled in the crawl space beneath their mothers’ porches.
Then I met him.
I was late for our first meeting at a little tapas place near Baltimore and the rain was coming down hard. I raced in the door, umbrella dripping, and saw a man stand up and smile at me. I think I might have gasped out loud. He looked so . . . young! He was so freakin’ adorable! And his . . . oh, hell . . . he had the kind of body that belonged on one of my fictional romance heroes!
I did a quick survey for the 20/20 camera crew or some bitch standing behind me who had been the intended recipient of that killer smile, but found neither. So I smiled back. Many months later, while lying prone in a hospital bed, I revisited this moment over and over in my head. I felt so far away from the woman who had walked in that restaurant. But once upon a time, I really had felt smart and pretty. I’d worn dresses and heels. My hair had occasionally looked halfway decent. I’d had two legs.
The Hottie came on strong that first date and all the ones that followed. He repeatedly assured me that our age difference meant nothing to him. We clicked on every level. He was intelligent, communicative, fun-loving, insightful, athletic, in touch with his emotions, and incredibly affectionate. Almost immediately, we were in a relationship.
Yeah, I know. I know, I know, I know. Really. I get it. I was stupid. I admit it. But he was so cute!
So there we were in this relationship. He went with me to my daughter’s theater performances. He met my ex-husband. My kids jokingly referred to me as a “cougar.” I had a lot of fun with him, though I didn’t get to see him as much as I would have liked. But I understood that he had to travel a lot for his job, and for the marathons and 10Ks he often ran to raise money for charities, and to spend time with his teenage boys, who lived in another city. I was ok with all of it because, hey, I had a busy life, too, and besides – I was already g-o-n-e, gone.
Plus, he was so cute!
The Hottie came to visit several times in the early stages of my illness, though I was unconscious. He even hung out in the Shock Trauma waiting room with my brother, my kids, my best friend, and my ex-husband. At Christmas, he dropped off a present and a card in which he’d written that the only gift he wanted that year was me. I was too spaced out to appreciate it but, I do remember him being there.
During one hospital visit, the Hottie climbed into the hospital bed with me and managed to reach around all the IV lines and probes and sensors to get his arms around my diseased body. He kissed my chapped lips. He stroked my balding head. He held my swollen hand.  Arleen wrote an email to my dear friend Celeste Bradley in which she praised his attentiveness. (“Good man,” she told Celeste.)
 The Hottie came when he could, but it wasn’t regularly. As soon as I was able to put a coherent sentence together, I told him that I’d understand if he was no longer interested in me. After all, he hadn’t signed up for a one-legged, pacemaker-wearing chick who hadn’t showered in recent memory. He dismissed my comments as ridiculous. The Hottie was a deeply religious man. Every visit he would pray with me and read Bible verses for encouragement. Since he happened to be a huge nerd as well,  he would recite lines of Star Wars dialogue to cheer me up. When I’d ask him (again) if he was sure he wanted to be with me, he’d respond with this quote from Yoda: “Luminous beings are we, not this crude matter.”
As my hospital stay dragged on, the Hottie called and texted sporadically, but his visits became infrequent. Just before Valentine’s Day he stopped by and I gave him a card I’d made with notebook paper and colored pencils, the only supplies I had on hand. He stared at it like he was embarrassed. (And rightly so – he’d brought nothing for me.)
Things really began to fall apart when I got home. He said he wasn’t sure where he fit into my life now that I needed to concentrate on my health and rehabilitation. I told him he fit in however he wanted to, and all he had to do was claim his spot. I made sure he understood that what I needed from him I couldn’t get anywhere else, not from family, friends, or physical therapists. I told him that his love, strength, and faith in me were important to my recovery.
When the Hottie visited, he made comments about how relieved he was that I was looking more like myself. “I wasn’t sure you’d ever be the same,” he said, no doubt remembering the bright-red balloon of infected flesh he’d encountered in the Shock Trauma unit. The visits became less frequent, but I was still g-o-n-e – gone. Besides, we were building something. Right?
One evening, as we snuggled in my temporary single bed in the downstairs dining room, I asked him one last time if he was absolutely certain he wanted to be in this with me. I reminded him that I could learn to walk again and do all the physical therapy in the world but my leg would never grow back.
“Susan,” he said, looking into my eyes, “I didn’t fall in love with the lower part of your left leg. I fell in love with you.”
Oh, thank God! I finally started to relax. He really did love me. He was going to hang in there and help me get my life back. Of course, I told several romance writer friends about this achingly tender exchange, and they all let go with deep sighs of satisfaction.
The Hottie dumped my luminous ass the next week.
He called and said he wanted to visit and insisted we go out to dinner, even though I had to hop around with my walker, which was embarrassing. (Later, I would realize this hadn’t been about doing something special for me. He insisted on taking me out to dinner so he could break up with me in public, a move that gave him some protection against an emotional meltdown, no doubt.)
So there we were, in public at a nearly empty restaurant. The Hottie and I sat across the table from each other and the vibe was so awful that neither of us were eating much. I told him that it was obvious he had something to say and that he should come right out and say it. He seemed relieved that I had given him permission to cut to the chase.
The Hottie said he couldn’t be what I needed, that his schedule made him a lousy boyfriend and I deserved more. He said our relationship was not “sustainable” for him because he felt guilty that he couldn’t be everything I needed. It had nothing to do with my amputation, he assured me, and promised we would be friends for life.
We went back to my house. We sat on the couch for a few moments. Then I gathered the running shorts he’d left in a drawer and the Christmas gifts I’d purchased for him and kept forgetting to give him. He took his stuff and walked out. I heard him sigh with relief as he opened his car door.
I cried my guts out for a month. I realize the sorrow and grief that came pouring from me wasn’t about the Hottie. It was about the loss and pain and horror I’d already been through and everything that would be required of me in the future – without a man who loved me at my side. As of this writing, I haven’t heard a peep from him. I never will. Despite what Yoda said, I can’t help but think my crude matter has something to do with it.
All this happened a long time ago, and I rarely think of the Hottie nowadays. I didn’t know it then, but I had other love lessons ahead of me, and I couldn’t get to them until the Hottie was a distant memory.
Just wait until you hear that story. I never would have imagined such a strange turn of events, and I dream up this shit for a living.