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.  

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