Wednesday, June 18, 2014

Phantom of the Choppered-Off

I have a simple philosophy about pain. I can handle it as long as it makes sense to me. Here’s what I mean. Let’s say I’ve just cut my left index finger while trying to slice a grapefruit. My fingertip throbs and bleeds and stings like a son-of-a-bitch. But I’ve just witnessed how it happened. It’s my fault. So I wash the cut with warm water and soap, pat it dry, and cover it with a Band-Aid. It still hurts, but I know it will pass. Then I eat my grapefruit.
         Or, let’s kick it up a notch or two. Lets say I just had several layers of skin peeled off the top of my right thigh in order to provide what’s needed for the skin graft of my amputation site. Yeah, it really, really hurts. But I know the pain serves a purpose – the skin was sacrificed so the large wound on my other leg could heal, which means I will get well enough to go home. Besides, I had been informed in advance that the procedure would be quite painful. I understand it's just another thing I have to get through.
I've even managed the pain of childbirth fairly well. Hey, I graduated from Lamaze class, so I had a general idea what was contracting, what was stretching, and what hormones were racing through my veins at any given time. I understood why my body felt like it was turning inside out, and I knew there was nothing I could do to stop it. The pain was a path to something beautiful -- I was about to give birth to my first child, eight pounds and seven ounces worth of baby boy who'd decided to show up facing in the wrong direction. (An omen, to be sure.)
But there’s one type of pain that got the better of me – phantom limb pain. It beat me, and I believe it did so because my brain couldn’t make sense of it. Not only was there no visual evidence to support the pain I felt, there was visual PROOF to the contrary: what I felt wasn’t even possible.
As you probably know, “phantom limb” and phantom pain” are terms used to describe what happens when a patient senses a body part no longer part of their body. Most often it’s experienced by those who have lost a limb or, like me, a part of a limb. Doctors say that about eighty percent of amputees experience some kind of phantom pain. But the phenomenon also has been reported by patients who were born missing limbs or who have had a breast or other organ removed.
 If you're not a doctor and try to read up on phantom pain, your head will spin. It’s a wide-open field at the moment, but everyone agrees on a couple things. The concept has been observed since the 1500s, when a French military surgeon wrote about it. The term “phantom limb” was first used in 1871 when a U.S. neurologist noted that “spirit limbs” were “haunting” thousands of soldier amputees left behind after the Civil War. In other words, the phenomenon has always been linked to the horrors of war. It still is.
But why does it happen? Researchers have some theories about what is going on in the human nervous system that leads to this bizarre occurrence, but nobody has any definitive answers. Is it because traumatized nerve endings shoot abnormal sparks all over place? Maybe. Is it because electrical signals from nerves send confusing and even damaging messages to the spinal cord, which then freaks out like the “Danger Will Robinson!” robot from Lost in Space? Maybe. Or is it because the brain’s cerebral cortex is struggling to create a consciousness of “self” with this new physical configuration? Maybe that, too.
As is clearly demonstrated by the previous paragraph, I am not a scientist. But I have lived through it, and I can tell you – it’s some mighty strange stuff.
It began in the hospital after the amputation of my left leg above the knee. I swore that my left leg was still there, even though it wasn’t. I felt tingles up and down a shin that no longer existed. My foot itched. My knee ached. The calf muscle felt really tight, like I had pulled it at the gym. (Yes, that calf muscle – the one that had been decimated by flesh eating bacteria and thrown into the medical waste incinerator.) It was  bizarre as hell. But these were oddly uncomfortable sensations. The pain was still to come.
While in the hospital, my left leg began to hurt from hip to toes. As surely as I felt my residual limb throb and ache, I felt the rest of the leg throb and ache. Shooting pains all along the length of the leg were common. Often, R.L. would jolt up from the pillow she was resting on, twitching violently in response to somebody stabbing something sharp directly into the sensitive arch of my foot.
By the time I was discharged from the hospital, I had felt every kind of pain imaginable along the length of the leg that no longer was. Tingling. Burning. Twitching. Itching. Aching. Pounding. Throbbing. And then there was my personal favorite – the sensation that my leg had fallen asleep, causing that heavy, dead, numb sensation we’re all familiar with. I remember that once I had the unmistakable sensation of stubbing my big toe against a metal bedframe, complete with the appropriate verbal reaction – SHIT! OW! -- even though there was no metal bedframe. There was no toe, either.
The weirdest experiences I had with my phantom leg are actually pretty hard to describe, even for a person who makes her living putting things into words. I’ll give it my best shot. Sometimes, I’d feel my left foot turned upside down, with the sole facing the ceiling, as it protruded out of the inside of my left knee. Or I’d feel my shin pulled up tight to my thigh, almost like it had fused with the femur. Or, I’d feel my left leg tucked up underneath my right leg, the way I used to sit while writing. The sensation wasn't painful.  I would simply feel it tucked under me, a comfortable and familiar position. All these weird misperceptions of physical reality intensified when I began to wean myself off the pain meds. R.L.’s tendency to jump and twitch got much worse when I decreased medicaiton.
My leg man, Jeff, counseled me that the flopping around at night might continue for years. “When you go still, your brain doesn’t have other physical movements to focus on, and it starts to make stuff up.” Again, Jeff was right. To this day, R.L. will twitch when I’m trying to fall asleep, though it’s become a less frequent occurrence.
          Since the cause for these phenomena is not clearly understood, the treatment is hit or miss, too. There were a couple things that seemed to help me pass through the stage of regular phantom limb pain and discomfort.
          The first was mirror therapy. Scientists aren’t exactly sure how it works, so I don't either, but I do know it does. I would put a lightweight full-length mirror between my legs, the glass facing toward my intact leg. Then I’d open and close my legs in sync – back and forth – and my mind would be tricked into thinking that the reflection of my intact right leg was actually my left leg. Somehow, that seemed to soothe my short-circuiting brain, and the phantom limb sensations lessened dramatically. Therapeutic massage helped, too. I had gone to a massage therapist regularly before my illness, and when I went back about six months after I’d been home from the hospital, we experimented with how much touch I could handle. I noticed that as I built up tolerance for touch at the amputation site, my phantom limb sensations lessened. 
          These days, I’m happy to report that phantom limb pain or discomfort is a rarity for me. My amputation site still aches and every once in a while I’ll get a stabbing pain through what remains of my thigh, but I think my brain has become used to the fact that part of me is gone forever. It’s figured out who my new “self” is these days.
         I wish there was a mirror trick to help me process the emotional and psychological makeup of my that new “self.” I’m finding those phantom pains much more difficult to deal with.

Saturday, June 7, 2014

He's A Leg Man

A few months after I got home from the hospital, I met a man who rocked my world. He was a take-charge kind of dude. Within the first ten minutes of meeting him, his hands were on my inner thighs. He was, and still is, my hero.
(Spoiler alert – this is not one of my novels. If you’re expecting to read a smokin’ hot love scene right about now, you’re in for a huge disappointment.)
So anyway, his name is Jeff, and he’s a leg man. He’s my prosthetsist.
            I’m right there with you. I didn’t know how to pronounce that tongue-twister of a word either. I didn’t even know what it meant at first. It’s not like the word is part of our everyday lexicon, unless you happen to hang out with people wearing manufactured body parts. In fact, the first fifty times I tried to say the word I sounded like I’d popped a few extra Dilaudid to take the edge off -- “Praw-sssshhhhtiii-isht.” Even now, I get it right only about half the time.
A prosthetist (prahs-thih-tist) is a highly trained professional who designs, fabricates, fits, and services a prosthetic device prescribed by a physician. Many prosthetists also specialize in orthotics, like knee braces, and arch supports. In my opinion, that job description falls way short, since my prosthetist also become a therapist, confessor, life coach, cheerleader, Mechanical Engineering 101 professor, and close friend.
Jeff knows his stuff inside and out. Literally. At the age of eight, he was diagnosed with cancer and had his right leg amputated just below the hip. So when he tells me he understands what I’m going through, he really does. And then some. I have a residual limb (R.L. for short), so my prosthesis can attach to the thigh with a suction system. Jeff’s leg must be secured around his waist with a harness. And yet the guy zips around like nothing’s amiss. He plops down on the floor and pops up again at least a dozen times per appointment, and when he’s not at work, he swimming, running, biking, and mountain climbing with his family. He’s an awesome role model. Everyone I’ve met who knows Jeff says the same thing about him:  “Isn’t he amazing? You can’t even tell he wears a prosthetic leg!”
 But in my experience, the most incredible thing about Jeff is that he’s one-hundred-percent real. I’m not sure I’ve ever met anyone like him. He’s a mellow and thoughtful guy who manages to tell it like it is without passing judgment. I’ve come to appreciate that about him, since becoming an amputee in your fifties can really leave you spinning. It’s like moving to an alien world without speaking their language: I needed a tour guide and an interpreter, and Jeff became both. He told me to ask any questions I might have. Boy, was that a mistake.
Is this type of frustration normal? Is it always this hard to get used to a prosthetic limb? Do I really have to go through all this shit? Why me? I don’t think I can do it. Am I doing all right? I give up. Help me to not give up. It itches. Why does it itch? It hurts. It gets sweaty. I don’t have any more patience left. You should probably give my leg to someone else who’s better at this than I am. Would you like to do that?
Many times, I’ve shuffled into Jeff’s office frantic about some new development with R.L. or the latest incarnation of my prosthesis. With my eyeballs popping, I will ask, “Is this a good thing or a bad thing?”
Jeff always shrugs and says, “It’s just a thing. We’ll work with it.” If I ever write a book about Jeff, I want the cover to read:
“It’s Just A Thing”
Shit My Prosthetist Says
By Susan Donovan

I will never forget the day I arrived at Jeff’s office for my initial evaluation. The adventure began even before I met him. My writer friend Grace volunteered to escort me. “Escort” sounds so pleasant. The truth is, those who volunteered to take me anywhere in those days had to have the patience of Mother Teresa. The job was a theatre of the absurd production in four acts. Act 1:  Wheel me down the spanking new wheelchair ramp now installed at my house, assist me up and into the truck, dismantle and fold the wheelchair for storage. Act 2: Unfold and reassemble the wheelchair, assist me out of the truck and into the chair, and wheel me inside the office. Act 3: Wheel me out of the office, help me from the chair and into the truck, and disassemble and fold the wheelchair. Act 4: Unfold and reassemble the chair, help me out of the truck and into the chair, wheel me back into my house via my lovely new ramp.
Once inside Jeff's office that first day, I was directed to a room and told to wait.  "He'll just be a minute," his assistant Ryanna said. She closed the door. I looked around, instantly creeped-out by the shelves of fake feet and hands and a variety of plastic forms in a whole spectrum of flesh colors. I broke into sobs looking at that wall of parts, imagining myself to be the abandoned doll in exile on the Island of Misfit Toys, needing to be fixed before anyone would love me again.

The first of many "temporary" legs
A later version of a "temporary" leg 


Poor, poor Jeff. He opened the door with my chart in his hands, ready to offer a friendly greeting to his new patient, only to find a snotty, air-sucking, sweaty, sobbing mess of a one-legged lady slumped in her wheelchair. He handed me a box of tissues. “I only have one rule here,” he said, his voice kind. “No crying unless you fall.”
That made me cry harder. We would often joke about that in the years to come, since it seemed I cried every damn time I came to see him, except for the day I actually fell trying to get into his office. I pulled myself up and went on – not a single tear. Go figure.
During that first appointment, Jeff listened patiently as I told him everything I’d been through in the last five months or so. When I was done he told me he had some good news for me.
“You are the type of patient I love to work with. I can already tell you will do great with a prosthesis. Want to know why?”
I nodded, clamping my nose with a tissue.
“You are a fighter. You beat the odds. You were healthy and active before your illness and the amputation was not because of diabetes or other disease. You are highly intelligent and you want to get your life back.”
I cracked a smile. And our friendship began.
Jeff explained four main principles to me that day, principles we would return to many times through the years.
1.                     A prosthetic limb is a marvel of engineering, but it is not the biology I was born with. Using a prosthesis would require retraining the mind and body, but even then, it would never “replace” the function of my lost leg. Expecting that outcome would only set me up for a double helping of frustration and disappointment.

2.                     Getting my “permanent” prosthetic leg could take months or even years. I had to be evaluated, approved by insurance, and go through a long process of trial and error to discover exactly how to best meet my needs in terms of technology, fit, attachment system, and a whole slew of other factors. Like the rest of my health crisis saga, the process would be two steps forward followed by one -- or more -- steps back. I would need to be patient.

3.                     I  was fortunate to need a prosthetic in 2012, as my options would have been severely limited anytime before. The leg I received would be the result of the suffering of thousands of men and women who lost limbs in a decade of fighting in Iraq and Afghanistan. The medical establishment had been forced to quickly advance prosthetic technology to meet the demand for limbs, often for young people in supreme physical condition who wished to resume previous activity levels.

4.                     This was also unfortunate for me, because the public view of prosthetics and amputees was based on media coverage, stories almost exclusively about robustly healthy people in their twenties, products of world-class military fitness training,  newsworthy because they were running marathons six months after they lost a leg in a quick and violent incident. “You know that isn’t you, right, Susan?” Jeff held my hand. “You were fifty years old when you got sick. It was systemic. You had many, many complications and it will take a long time for you to heal – not just your leg, but your whole body. You weren’t a twenty-two-year-old Marine
                               before and you won’t be after. Unfortunately, not everyone else will realize that."

           That first appointment, Jeff and his assistant took a cast of R.L. while I stood on my intact leg, supporting myself on a set of parallel bars. They covered the thigh in plastic wrap and proceeded with what was basically a papier-mâché project. The cast hardened, and Jeff slipped it off. I had my first mold! Technicians would use it to create my very first temporary socket – the top part of the prosthesis that fits over what’s left of my thigh. It was my first one-legged lurch on the path toward walking again.
          About a year later, I told Jeff that I was thinking about writing a blog -- and eventually a book -- about my experience. It was the first time I ever saw him get crazy excited about anything.
“Yes! Yes! You could become the face of necrotizing fasciitis!”
           And what girl wouldn’t want that? I can imagine it now. The next time I’m doing a booksigning I will hear the whispers . . . “OMG! Is that Susan Donovan? She’s the face of flesh-eating bacteria!”
I told Jeff it wasn’t exactly the vibe I was going for, but he pressed on. “You could help a lot of people, Susan. You have to do it.”
           As with most everything else, I think Jeff was right.