Friday, May 16, 2014

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.





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