Crying for a Missing Limb
It’s not uncommon to think of growing up as an adoptee, as someone whose mother handed you over to another mother (or father), as living like an amputee. That the mother-loss was less a handing over and more of a ripping or a rending or a tearing off of a body part.
Here’s some information about phantom limb pain:
Managing Phantom Pain
Phantom limb pain (PLP) refers to ongoing painful sensations that seem to be coming from the part of the limb that is no longer there. The limb is gone, but the pain is real.
The onset of this pain most often occurs soon after surgery. It can feel like a variety of things, such as burning, twisting, itching or pressure. It is often felt in fingers or toes. It is believed that nearly 80 percent of the amputee population worldwide has experienced this kind of pain.
The length of time this pain lasts differs from person to person. It can last from seconds to minutes, to hours, to days. For most people, PLP diminishes in both frequency and duration during the first six months, but many continue to experience some level of these sensations for years.
People are often reluctant to tell anyone that they are experiencing PLP or phantom limb sensations, for fear that they will be considered “crazy.” However, it is important to report these pains as soon as you begin to experience them so treatment can be started.
What Causes Phantom Limb Pain?
Unlike pain that is caused by trauma directly to a limb, PLP is thought to be caused by mixed signals from your brain or spinal cord. This is an important concept to consider, because the treatment for this pain has differences from the treatment you would receive for other kinds of pain. New therapies for PLP all involve trying to change the signals from your brain or spinal cord.
As with any other kind of pain, you may find that certain activities or conditions will trigger PLP. Some of these triggers might include:
Touch
Urination or defecation
Sexual intercourse
Angina
Cigarette smoking
Changes in barometric pressure
Herpes zoster
Exposure to cold.
If you notice any particular thing triggering an episode of PLP for you, let your healthcare provider know. Some triggers can be avoided – for example, you can prevent constipation or stop smoking. For other triggers, you will just have to understand and treat accordingly. You will not be able to prevent the barometric pressure from changing, but you will be able to understand that your PLP might be more severe on days with big shifts in the weather!
People are often reluctant to tell anyone that they are experiencing PLP or phantom limb sensations, for fear that they will be considered “crazy.” However, it is important to report these pains as soon as you begin to experience them so treatment can be started.
Treating Phantom Limb Pain
Treating PLP effectively takes a multipronged approach. Medications of several different categories in combination with non-medication treatments seem to be most effective. This combination of medication/non-medication is similar to treating other painful conditions.
For instance, if you broke your leg, you would expect to take narcotic pain medication, at least for a while. You would also elevate your leg and put ice on it.
For PLP pain management, you will take medications directed specifically toward interrupting the pain signals in your brain or spinal cord as well as using certain non-medication therapies, which also work on your brain’s interpretation of these signals.
(https://www.amputee-coalition.org/limb-loss-resource-center/resources-for-pain-management/managing-phantom-pain/)
Did you notice the word “crazy” came up twice in this short piece? I found that helpful—it made me feel less alone. Walking around as a fifty year old (okay, 55, whatever), crying about a mother I never met after she birthed me is its own kind of “crazy”. Feeling pain, feeling a burning, twisting, itching or pressure in my body and mind decades after the separation leads to more “crazy”. Phantom limb pain is so hard to talk about because you are not only talking about something that isn’t there, you are talking about something that might never have really been there at all—something that never held you in her arms or said your name.
Phantom limb pain keeps me like a baby or a child. I want my mother! Phantom limb pain also leaves me feeling that my body and mind aren’t fully my ally. They drag me by the nose through a lifetime of wanting what I don’t have. They keep me focused on my skin, on my body, on the hurt that is there, instead of letting me hear the birds singing or that someone kind wants to hold my hand and stay.
I am aware that I can’t solve a problem with the same state of mind I was in when the problem arose. To escape phantom limb pain or to outgrow it means I have to change my mind. I have to lift up my mental state so I vibrate or exist at a higher level. How do I do this?
My favorite thing to do is put in my headphones and play music. If I really need a shift, I do this and jump up and down at the same time, trying to touch the ceiling. I go for a walk. I call a friend who understands me and is good at helping me shift states. Mostly, I move. Trying to shift mental states while also not getting my blood flowing is like trying to drive on an empty tank.
The trick is that I have to overcome the desire to stay stuck in the muck. Muck can feel so warm and inviting. Change can feel like emptiness or nails down a board or a leap off a cliff. Why change when you can stay the same? Why get rid of phantom limb pain when you can keep it and hold on to the hope that maybe one day your mother will come back and sweep you into her arms and there you will be, magically a baby again, whole.
It’s over. It didn’t happen. An amputee can spend the rest of her life crying about the fact that she has one leg or one arm or no legs at all, or she can get a move on and see what it possible with her new body.
I know it’s scary. I know we have this funny belief that life should be painless and that if we are in pain, something is essentially wrong and that we are in trouble. Pain is information. Pain can tell us what it needs. When I feel that gaping ache in my self that my brain translates as mother loss, I can follow the chemical spill of anxiety and depression, or I can get off my ass and start jumping around.
The will to feel joy is something I have been learning from Pam Cordano since the day we met, and I follow her actions, and my life is so much better. She’s the one who taught me to jump up and down. She’s the one who decided she was in charge of her mental state and has taught me what it looks like to take control of your own life. I follow her because she shines.
Last night we jumped in the car and raced to an open field because Pam thought the sunset was going to be amazing. We stood in the road and watched the ever darkening light, orange and pink and grey, illuminate the clouds. It was cold out. I jumped up and down to stay warm. Pam took pictures. Pam’s husband pulled black, wrinkly walnuts from a tree and used a big rock to break through the casings so we could have a taste of fresh walnut.
It was so fun. My body felt alive. It felt good.
