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.



Beth Reecher said...

A few weeks ago, while I was shopping at Turn The Page Bookstore in Boonsboro, I bought, "Sea of Love" & "Christmas On Main Street". I Googled you & found your Blog. I wish that I had known about you before the booksigning at TTPBookstore so that I could have planned to attend so that I could have met you. I am inspired by your courage through your devastatingly, painful health crises. I am looking forward to reading your books. Thank you for sharing your story through the blog. Honesty can be brutal, but somehow necessary.

Bestselling Author SUSAN DONOVAN said...

Thank you so much, Beth. You're right -- honesty is brutal. But one of the things I've learned through this hellish experience is that the truth just IS. We assign it labels. I decided if I can't embrace what really happened to me, what would that mean? I think it would mean I'M ASHAMED TO HAVE SURVIVED. Yikes! When I realized that, I knew I had no choice but to share.

Maybe we can meet at the next TTP book signing? I hope to be there later this fall.