Tuesday, February 25, 2014

Need To Take A Breather

Thank you for stopping by. Because I'm trying to make two book deadlines by April 1, I will need to temporarily step back from the blog. I will see you in the spring!


Saturday, February 22, 2014

You Can't Go Home Again

Yep, though I’d only been in rehab a week, my insurance company was sending me home. There was only one problem. Wait. There were about 762 problems, and they all had to do with the fact that I had no idea how I was going to get inside my house, let alone live in it.

      I couldn’t climb stairs (see previous blog entry) yet that was the only way I could enter my house. My best friend, Arleen, had made some inquiries about getting a wheelchair ramp built, but no one had even been hired to do the work.

     Plus, it would take a great deal of planning and effort to prepare my living space. The dining room needed to be cleared out so that my bedroom could be relocated from upstairs to the main floor. And somehow,  the tiny downstairs bathroom just off the kitchen had to be remodeled so that it was safe for me to use. None of these things had even been started.

     On top of that, I couldn't take the hospital wheelchair home with me, but I hadn’t yet purchased one of my own. I had no walker. No crutches, shower stool, or handrails. I had no medical supplies for the complicated bandaging process my wound required.

     Why? Because my family and friends hadn’t expected me to come home.

     As I sit here at my desk this morning writing this, nearly two years have passed. The sun is shining and I’m in a good place physically and mentally. I’ve had my coffee. My writing is going well and I’ve been meeting my daily output goals. But reliving this particular moment has clamped my throat shut, tightened my chest, and caused my palms to sweat. I don’t know if I can do this justice, but I will try to explain what it felt like to be me at that moment, and why I was a terrified mess at the idea of going home before I believed I was ready.

     In the B.A. era (Before Amputation) I was a confident woman who reveled in taking on challenges. That woman didn’t exist anymore. I had become an utterly defenseless thing, feeble, and petrified, and it was from that mindset that I heard the physical therapist say I was being discharged.
On that day two years ago, I didn’t even recognize myself – the thoughts in my head, the emotions racing through me, and the strange skin I was now trapped inside. My body was not my ally anymore. It would be a long time before I could praise it for being strong and brave enough to pull me through this ordeal. Back then, I saw my body as a failure. It had betrayed me and caused me intense suffering. I didn’t trust it. I didn’t understand it – I had no history with this frail, one-legged creature held together with staples and gauze, covered with scars and strange blotches, a pacemaker stuck in its chest. I was a alien inside my own skin.

     And my brain? Shiiiiit. That thing had been julienned by septic shock and deep-fried in a vat of opioids. I wasn’t on good terms with the gray matter hitching a ride inside my skull. It just didn’t work right. It was confused, stuck, almost primitive. And as odd as it might sound, I didn’t even feel that I was inside my own head.

     My spirit was road kill. Seriously. What had God had been thinking when He/She did this to me? Why would the benevolent and divine power of the universe strike me down like this? It would be years before God and I were on speaking terms again. Back then, I figured God had kicked me to the curb and left me to fend for myself.

     My emotions were raw and nonsensical, but subdued by a suffocating layer of sadness and despair. So however emotionally unstable I seemed to others, they had no idea how bizarre things really were inside there. I shudder at the memory.

     So, there I was, this utterly lost woman, demanding a meeting with my hospital’s friendly social worker, so that I might discover WHAT THE FUCK was going on and why NO ONE HAD BOTHERED TO INFORM ME I WOULD BE RECEIVING ONLY ONE WEEK OF REHAB WHEN I WAS TOLD I’D GET TWO! Hello? Shouldn’t I have been the first to know?

     He sat down in a chair about ten feet from my hospital bed, his clipboard balanced on one knee. He then informed me that I had never been approved to receive two weeks of rehabilitation and he was sorry if I had been under that mistaken impression.

     Let me just say right here that, based on the above description of my mental state, it is possible he was right and I’d gotten it all wrong. However, my family and friends thought I’d be in rehab for two weeks, too, so I wasn’t alone in my hallucination. Maybe it was a group thing, you know, like how scientists say thousands of people can see the Virgin Mary in an empty lot in suburban Atlanta at the exact same time.

     As calmly as I could, I told the social worker that nothing was ready for me at home, that I was being sent into a situation that would be difficult and quite possibly dangerous. He smiled kindly and assured me that my friends and family would rally to help.
The House Of Stairs 

     “But I’m still very weak,” I told him. “I’m scared to death I’m going to fall.”
     “It’s common to feel that way at first, but you’ll surprise yourself at how quickly you improve.”

      “Have you arranged for home nursing care?”

      His eyes got big. “Well, no.”

      “Were you planning on doing that?”

      “We haven’t discussed it.”

      “Are you *&%@(!@# kidding me?”

     I admit it. I was impolite. I take full responsibility for the fact that our conversation didn’t go very well from that point on.

     He said he’d look into setting up nursing care for me at home.

     “Great! And what about physical therapy? Have you arranged for that?”

     “Not at this time.”

      I'll sum up the rest of our talk so as not to bore you. Basically, I bitched and moaned a lot, and he took notes on his clipboard. (Later I would realize that one of those notes was for someone to write me a script for Xanax.) I explained that our most pressing issue was that I wasn’t ready to climb the steps into my house and had no wheelchair ramp. I told him if the hospital released me under those circumstances it would be irresponsible.

     So we compromised. The social worker said he would delay my discharge for one day and arrange for a dry run. A nurse’s aid and a physical therapist would go with me to my house (about five minutes away) and show me how I could manage it with help. They would take a wheelchair and show me how I could navigate the doorways in my house and use the bathroom, etc.  I called my longtime friend Pete, who owns a medical equipment company. He agreed to meet us at the house for the practice run so he would know exactly what I'd need when I was discharged. Without Pete’s help, this would have been an even bigger CF than it already was.

     During most of this "dry run" I was a sweaty mess. I remember riding in the physical therapist’s car, my amputation site propped up on pillows while I gripped the armrest. We were only going about thirty-five,  but I felt like a passenger on the Starship Enterprise, hurtling through my small Maryland town at warp speed.
     The instant I saw my house, I was overcome with emotions. There it was. My home. My refuge. The place I’d been dreaming about for so long. It looked beautiful to me, even on a dreary afternoon in late February. But, much like the way I felt about my own body, this old place and I were strangers. When I used to come home after time away, I would feel a sense of warm welcome. On this homecoming, I felt confusion and intimidation. All I could think about was the narrow doorways and the skinny, sloped, and crooked driveway. I worried about the lack of handrails and the steps that were, literally, everywhere. My beloved house didn’t fit me anymore. I didn’t fit it.

     It took forty-five minutes for four adults – myself, the physical therapist, the nursing assistant, and my friend Pete – to figure out how to get me the fifteen feet from the driveway to my kitchen. It involved moving the car multiple times until I was aligned just right, retrieving straight chairs from the house, dragging the hospital wheelchair inside and setting it up, and eventually, after many failed attempts, deciding it would be safest if I just scooted up the five steps on my butt. I made it, shaky and sweating from exhaustion, then sat there on my kitchen floor and sobbed. I felt defeated. I had wanted to go home so badly, and now that I was there I realized it wouldn’t be a triumphant return. My wonderful little life and my pretty little house were too much for me to handle.

     Poor Pete. Most of his client base consists of disabled veterans. He certainly knows what he's doing, but I was a personal friend of nearly twenty years, a middle-aged lady sobbing on her kitchen floor. He tried everything he could think of to reassure me. He showed me how he was measuring the doorways and assured me he could find a chair that would work. He reminded me he’d get all the handrails I needed, plus crutches, a walker, a shower stool, and anything and everything I would later discover might make life easier. Everyone worked together to hoist me into the wheelchair, and the nurse's aid rolled me around the main floor, where we discovered I couldn't even get into the downstairs bathroom door. I was so sad and scared that I just wanted to go back to the hospital.

    You may wonder what it was like getting me out of the house and back into the car. You don't want to know.

     On the drive back, I realized something. Being afraid of the unknown is bad, but it's far worse to be afraid of what you know is waiting for you.  

     While all this was going on, a powerful force of good was beginning to to take shape. Without my knowledge, it began to spread across three states and the District of Columbia. This entity possessed the skills and determination to accomplish the impossible. And when it was done, they would look at me and say, “Eh – it was nothing.”

     I’ll tell you all about this dynamic force in my next blog entry. I'll be telling a story that contains all the necessary elements of great fiction: the power of love, seemingly insurmountable obstacles, ticking- time-bomb pacing, humor, and a cast of memorable heroes and heroines. Plus, there’s a lot of food in this story.

     You know,  I’ve written many tales over the years, but this one is among my very favorites. And every word of it will be true.


Monday, February 17, 2014

Shit Just Got Real

So I’m doing pretty well with physical therapy at my local hospital, considering how my body is nothing but one big blob of pain. The skin graft I received at University of Maryland Medical Center in Baltimore seems to be holding. Nurses and doctors tell me the layers of transplanted skin over my amputation site appear pink and healthy, and though my thigh is hideously swollen and sore from all the surgery, nothing appears to be infected. Excellent news, all around.

Now, my other thigh – where doctors harvested all the skin needed for the graft – that thing is pure torment. Every movement still tugs at the sheet of sticky gauze protecting the flesh. And if I move too fast or accidentally bump up against something with that leg? Stand back. Seriously. I’ve had two kids. I’ve been through hell with this illness. I know what horrible pain is, and this thing on my right thigh is Gitmo-quality horrendous.  

Despite the discomfort, my mood is far better now that I’m around friends and family every day.  I get visitors all the time – fellow second sopranos from my classical choral group, my son and his girlfriend, my daughter and her over-the-top performing arts school friends, local priests and ministers, and a couple of my writer buddies. Everyone brings gifts. I’ve got plants and flowers lined up on the windowsill. I’ve got a pewter guardian angel ornament hanging near my bed. My room is stocked with cheese, crackers, fruit, and chocolate that I have no appetite for. I’ve got T-shirts, balloons, warm socks, and a pile of magazines and books that I’m still too fuzzy and doped-up to read. Arleen and two of her siblings gift me with a beautiful Kindle Fire, and though they show me how to use it, it’s too complicated and confusing for me to deal with. Honestly, at this point I have the attention span of a gnat. 

 But I see progress. I am getting stronger with each day of occupational and physical therapy, and I’ve decided to make a big deal of the tiniest signs of improvement – one more sit up, five added hops on the walker, an few extra bicep curls. I’m pushing myself. I wish I could tell you that my reasons for doing so are noble, but at this point, I’m motivated by a single thought: I will be sent home in a little over a week, and I can’t imagine how I’ll be ready. 

The obstacles are overwhelming. Nothing in my house is wheelchair friendly. First, my bedroom and bathroom are on the second floor. Where am I going to sleep? How can I use the tiny bathroom off the kitchen for months on end when it needs a shower with disability access, a special contraption that goes over the toilet, and safety grab rails. How am I going to get to the basement to do laundry? Damn, how am I going to get inside my house at all? There are steps at every entrance – from the front, from the drive, and from the back deck. My head is spinning with all these details. 

Ok, I admit that I’ve always been a woman of action. I like to get things done and I like to see them done “the right way.” In some circles, this is called being a control freak. That’s harsh. What I’m saying is that here I am, drugged out of my skull, chopped up, confused, overwhelmed, and in pain, and I find it impossible to serve as the project manager for all that must be done. My friends and family assure me that they will take care of everything, but I don’t know how it’s all going to come together in time. 

Numbing fear and strangling frustration... these are my constant companions during my second stint at rehab. Every second I’m awake I am frustrated by all the things I cannot do the way I used to. Little things, like taking a hot shower. And big things, like walking, thinking, or living without pain. What frightens me most is my desire to follow the instructions of my physical therapists while knowing that one little mistake could accidentally put pressure on my amputation site – or, God help me – cause me to fall. Before I left Baltimore, my orthopedic surgeons warned me that if I were to fall on my amputation, I would probably fracture what was left of my femur and ruin the graft. This would require multiple surgeries to fix. Truly, I am unable to imagine a setback that devastating at this point in my ordeal. I can’t imagine more hospital time, more operations, and more drugs. So all I can do is be really, really careful.

Then the day comes when my physical therapists decide I should learn how to navigate steps as a newly one-legged person. Since I will be facing stairs at home when I’m discharged, they believe I should start practicing. My first reaction is, “What the effing hell?!”

 Now, I’m not dissing my therapists. They were caring and patient and worked as part of an overall treatment team looking to meet certain benchmarks. But stairs? Were they out of their minds? That little physical therapy contraption – three wooden steps covered in non-skid tread, a handrail, and a small platform for turning around – might as well have been the Matterhorn. That’s how daunting the assignment seemed to me.

They told me not to worry, that they would be at my side. They secured something called a gait belt around my waist and tugged on it to be sure it would hold. I was scared out of my skull. With two physical therapists and an assistant with me, I put my hands on the railings. Now it was time for me to get from the floor to the first step. Let’s go. 

All right, let’s do this thing.


It was like my brain couldn’t locate the appropriate neurons to fire up. My brain was freaking out, spinning in circles, yelling in my ear, “There’s no left leg! How are we supposed to go up stairs without a left leg? Where are the neural pathways, muscle fibers, and bones, and are they coming back any time soon?”

I’ve lived for fifty years with two normal, strong legs. I’ve run up and down thousands upon thousands of steps in my life, never even thinking about it. And here I am, utterly lost as I try to make the transition from the floor to the first step. 

Eventually, I just take a deep breath and jump. Pain, pain, pain. I did it again. More pain. I started to feel dizzy. My physical therapists thought it would be a good idea for me to head back down. Fine. But I had to spin around to face the other way. Sharp panic jabs me in the chest. My leg begins to shake. They help me turn around, and I find myself on the second step, looking down. Ha! My brain, the same one that freaked at “going up” had just flat-out rebelled at the idea of “going down.” I decide I can’t do it. I’m too afraid. Too weak. And now, I’m stuck.

“Come on. We won’t let you fall.”

I begin to fall. 

The ordeal takes about two seconds, but when I think about it now it seems like several slow-motion minutes. My knee has buckled. My arms can't hold me up. I'm experiencing vertigo. I shouted out, “Oh, my God!”

In that instant, fear was the only thing that existed. I pictured the splintered femur, the ripped-open skin graft, blood, agony, the operating rooms, the tears, the loneliness, and the despair. That’s what awaited me after I hit the floor. I brace myself.

Just then, a very strong therapy assistant grabs my gait belt, and though I’ve already started to fold at the waist, the other therapists catch me and set me upright. Basically, they end up carrying me down the steps and sitting me on the physical therapy table.

I look down at my amputated leg. It’s in one piece. I look at my other leg. The sticky gauze has pulled away from the raw flesh and several streams of blood are running down my shin and pooling inside my gym shoe. But as far as injuries go, that’s it. I begin crying from the adrenaline crash,  the terror,  and the relief. I hug everyone and thank them for saving me. It takes a long time before I can collect myself enough to get in the wheelchair and head back to my room. That night, I thank God that, yet again, I have been saved from disaster.

The next morning I wake up in a great mood. I am alive. I didn’t fall. I will keep working on the stairs until I feel secure. I tell myself, “Susan, you can do this. Everything’s going to work out.”

“So,” my physical therapist says as we enter the door to the gym. “Are you excited about going home tomorrow?”

I stop rolling my wheelchair and stare up at her. She seems completely serious. “I’m not going home tomorrow,” I assure her. “I’m staying for two weeks and I’ve only been here for one.” 

“No,” she said, smiling like she's giving me some really excellent news. “You get to go home tomorrow. You’re insurance company thinks you can be discharged. We discussed it in the team meeting.”

My heart drops all the way down the center of my body, and lands with a thud somewhere near my remaining foot.  

Thursday, February 6, 2014

Rehab Redux

“Remember, don’t put any weight on the surgical site.”
With that reminder, I got the green light to return to my local hospital’s rehabilitation unit, the last stop before I could go home. As it was explained to me, I needed a couple weeks of physical and occupational therapy before I would be ready to safely take care of myself outside the hospital setting. During those weeks, my friends and family would make changes around the house to prepare for my return. I was well aware that my ninety-year-old Craftsman-style home was fine for a healthy and energetic gal with all her limbs, but it was no place for a weak and spliced-together woman with one leg.  I was worried about the number of changes that had to be made in such a short amount of time.
I decided to trust that it would all work out and focus on how excited I was at the prospect of being in my own home again. It was the stuff of my fantasies. For months, I had imagined in great detail how I’d prepare dinner for my kids again, write in front of the fireplace again, and sip tea with Arleen on the porch again. It blew my mind that the only thing standing between me and my dream was a couple of weeks of rehabilitation.  I planned to make the most of it, and return home ready to rock this new life of mine.
I said goodbye to all the incredible people at University of Maryland Medical Center’s Shock Trauma Unit. I got hugs from some of the nurses, aides, Reiki practitioners, and even my favorite surgical resident, who made a special trip to my room just to say goodbye. I got strapped onto a stretcher. Clutching a large plastic bag full of my personal belongings, I was rolled down a maze of hallways and tunnels until we eventually reached a set of automatic double doors. The medical transport technician tapped his palm against the push plate and the doors unfurled.
I was out!
The shock of the cold February air made me gasp. How blissfully different it was from the recycled, stale, and faintly metallic air of shock trauma. This was real air. Cold air in my lungs! Honest-to-God natural air created naturally by the natural laws of nature!
Since this is downtown Baltimore I’m getting all giddy about, I’ll move on, but really, I can’t even describe what a thrill it was to be somewhere other than the beeping, chiming, and sunless closet that had been my reality for so long.
I was once again a citizen of the world.
For the hour and a half it took to drive to my hometown, I stared in awe out the back windows of the ambulance. I noticed how the broken lines on the highway sparkled with sunlight, how the dome of the sky stretched out like a sheet of blue-tinted glass, and how the skeletal fingers of winter trees reached toward the heavens. As you might surmise from that bit of descriptive prose, hardcore narcotics enhanced the entertainment value of the road trip. And yet, every pothole and bump made my eyes water. There’s a limit to what meds can do for a patient who’s been ravaged by killer bacteria, had her leg chopped off, and then received a graft using flesh peeled from her healthy thigh, I suppose, but now that I was out of my familiar surroundings, I began to see how bad the pain really was. Everything below my hips throbbed, ached, stabbed, burned, or buzzed. Bolts of fire would slice through me at odd intervals. And I got to thinking . . . I’m supposed to ramp up the physical and occupational therapy now? With all this pain? Are they kidding?
But then I remembered. I wanted my life back. I would not spend the rest of my days in a wheelchair. So as much as I wanted to pull an Amy Winehouse and say “no, no, no” to rehab, I knew in my heart I would do whatever it took.
I was exhausted after the trip but happy to be back in my town’s lovely new hospital. I was assigned the same room I’d had before, directly across the hall from the nursing desk. The staff seemed genuinely pleased to see me again, and some of the nurses hugged me and told me I looked wonderful.
Remember the sweet night nurse from my first go-around, the one who didn’t know how to bandage my open wound? She was back, all smiles, squeezing my hand and saying, “You are one tough cookie.” In the coming days, I would hold onto her words like a life raft. I would remind myself she was right – I was tough, determined, strong, and I was up to this challenge.
Therapy began immediately. I had three sessions a day, usually two turns in the gym and one with my occupational therapist. I had the familiar problem with my bandages – they kept falling off – until nurses rigged a system that wrapped around my surgical site, supported the remaining thigh, and closed around my waist with Velcro tabs. The accessory was attractive and partially effective!
My first challenge was two-fold: I needed to transfer from the bed to my wheelchair without assistance and travel under my own power. The process was more involved than it might sound. First, I had to sit on the edge of the bed, make sure the chair was locked, test the slip-proof bottom of my hospital sock, and then pull myself to a stand on my remaining leg. While balanced like that, I transferred my hands from the bed rail to the arm of the wheelchair, then pivoted and sat down. It hurt like hell to move around so much, but the maneuver was far from over. I still needed to cushion my amputation site with pillows (remember that warning about putting any weight on it) and arrange my sliced-up thigh so that it didn’t get jostled.
I admit that by this point I had become quite immodest. The only thing that mattered to me was that NOTHING touched either of those places, and if that meant I had to ride around wearing a T-shirt and a diaper-like arrangement of a bed sheet, then so be it. People would have to deal.
So there I was, a middle-aged, one-legged exhibitionist trying to wheel myself around the third floor. I barely made it fifty feet down the hallway on my first attempt, but with each subsequent trip I added a few more feet. Eventually I got myself all the way to the gym without help, and after a few days I was wheeling around the rehab floor, looking out windows, watching people get off the elevators, and whizzing by offices where people would look up, smile, and sometimes wave. I’m dead serious when I say I couldn’t remember the last time I’d had that much fun, diaper or no diaper.
Occupational therapy consisted of me relearning how to perform basic self-care with my new reality of one leg and reduced strength. Once I could show the therapist I was capable of brushing my teeth, giving myself a sponge bath, combing my hair, and putting on a clean T-shirt – all while in my hospital bed – I was ready for bigger and better things. The day came that I got to venture into the bathroom. It had been close to three months since I’d experienced the civilized joys of indoor plumbing – can you imagine? I was so overwhelmed by the normalcy of it that I cried. I felt human. Later that afternoon I made several phone calls to share my big news. And I knew that one day soon I would be allowed to take a shower, and my return to personhood would be complete.
Next door to the physical therapy gym was a mock-up of an apartment, where I would learn how to perform housekeeping tasks from my wheelchair or balancing on my good leg. I practiced opening and closing the door. I also learned how to set the table, load the dishwasher, and pour uncooked rice into a pot. (Everything I would need to host a fabulous post-hospital dinner party!) But I’ll never forget my very first occupational therapy session, and neither will the poor therapist.
It was about seven A.M., and I’d been sipping on a cold ginger ale but hadn’t eaten breakfast. I began to feel slightly nauseous just as the young male therapist came to fetch me, smiling as he read from the checklist on his clipboard. We arrived at the apartment and he began showing me around, asking me questions about the layout of my kitchen at home. That’s when I suddenly lurched forward and barfed in the sink. I then grabbed the dishtowel from the hook, ran it under cold water, and pressed it to my face. He looked puzzled – I don’t think puking in the kitchen sink was on his checklist.
My physical therapy sessions varied. I did a lot of stretches and leg lifts while lying on my stomach, careful not to put any pressure on my amputation site. These exercises kept my hip joints flexible and increased my muscle strength – things I would one day need to operate a prosthetic leg. I lifted two-pound barbells, worked with resistance bands, and rode a stationary hand cycle. The first time I tried the bike, I was spent within five minutes. It shocked me, considering how I used to put in an hour on the elliptical trainer like was nothing. Now I could barely do five minutes of slow and plodding movements of my arms. I gained strength quickly, though, and within a week I was up to about fifteen minutes on the hand cycle.
     Physical therapy was exhausting and it made the pain worse, but I was willing to do anything if it meant I could go home. I continued along, trying to remain cheerful, trying to smile, trying to keep my eye on the prize.
Then came the day I met the physical therapy stairs. This wooden box-shaped structure featured three steps covered in non-slip treads, a handrail, and a small platform landing. It looked like such an innocent contraption, but that thing would become a ruthless teacher. It would cut through my warm and fuzzy optimism to reveal the terrifying truth.
Those steps would introduce me to the enemy.