Living With Phantom Limbs

When I'm lying in bed my arms float three or four inches in the air above my belly. They don't move at all and they rarely touch. Sometimes they rest on my thighs, but that is quite rare. My legs are a little different, they move to different spots on their own, but never when I'm awake. Sometimes, my ankles are crossed. Sometimes, my legs are spread apart. And sometimes my left leg is bent and my right ankle is resting on my left knee. All these positions are comfortable.

Sadly, these are not my real limbs. These are my phantom limbs, and this is when I'm lying in bed. During the day it is quite different. My phantom arms often join my real arms, but sometimes they rest in my lap even though my real arms are on the armrests. Occasionally my ankles will cross but normally my phantom legs and feet rest with the real ones. When I cannot see my arms and legs is when my phantom arms and legs will move to their own positions. But that isn't always the case, sometimes I can see my real arms on the armrests but my phantom arms will be in my lap.

The strangest times are when I'm in therapy, particularly when we are working with my hands. Even though the therapist has my hand in their hand my phantom hand will be resting somewhere else. And when the therapist asks me to move my fingers, it is my phantom fingers I am trying to move. It is strange to look at your fingers moving, see them move, but feel them moving somewhere else.

The hard part of phantom limbs is pain. It's hard to tell what's hurting, the real limbs or the phantom ones. Although, I know it's the phantom ones that are feeling the pain. In my legs and feet, it's my heels that are always sore. I don't know why, but they always hurt. The other night I had a dream I was skiing and my toes were cold. I woke up right after the dream and I wondered if my toes were cold for real, something I'll never know.

Sometimes my arms, particularly my right arm, will fall asleep. You know, that tingling feeling you get when you sit or sleep in a funny position. I know it's my phantom arm falling asleep. The way to wake it up is to put my real arm in my lap and wait for the phantom arm to join it. I know – strange. When I was in the hospital I would wake up and it would feel like my arms were on fire. This is something very hard to explain to the nurses, especially when you’re on a vent and can't speak. There were some frustrating and painful nights. The way to put the fire out was to put ice packs on my real arms and eventually my phantom arms would stop hurting. I now take medicine, gabapentin, to control the pain. It seems to be working well because it's been months since I've had the burning sensation.

I don't think my phantom limbs will leave anytime soon. Perhaps, one day, they will join my real limbs. But since my brain doesn't know where to find the real limbs, even when I can see them, I think my extra four limbs will always be there. I guess I'll live like an octopus, with eight limbs that don't move and four that have false feeling.