The Phantom Limb Effect

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Sorry if you have already read this…I somehow took it off my site and a few people have asked me to repost it.

Meet Ally. She was born with only one arm, She has been able to live a normal life for the most part,  but she has suffered with a condition called Phantom Limb Syndrome. 

With this condition, Ally’s brain often often tricks her into believing that her non existent arm is gesturing or grabbing something. She also feels pain in the arm that isn’t there. She will feel like she has a hang nail, like she is being burnt, or even like someone is stabbing her with a knife.

If Ally winces or cries out in pain, people will most likely doubt that she is sincere. They might think that she is only trying to get attention. How can your arm be in pain when it isn’t even there? 

But Ally’s pain is real. She hurts just as much as someone whose physical arm is being burnt or stabbed.

We could say that Ally is suffering from Disenfranchised Grief. To disenfranchise means to deprive someone of their rights. So disenfranchised grief is to deprive someone of their right to grieve.

Ally’s pain doesn’t seem real to people, so they don’t treat it like it is real. She knows that if she expresses her pain socially, people will not acknowledge that her pain is valid. Because she wants to be validated, she hides her pain.

Instead of wincing, she smiles.

I introduced the concept of disenfranchised grief in my post Singles and the Church: Why it Sucks to be Unintentionally Overlooked. I asked in the post if anyone felt like they had to hide the pain they felt over being single or that their struggles were overlooked by their church family and the church culture at large in one way or another. One hundred and eighty comments later, I realized what a big problem this is. I have never gotten more comments on any of my posts.

Over and over again in these comments, people talked about how they don’t feel like they are socially allowed to grieve over their singleness. Why? Because like Ally, the church and their community says “how can you grieve something that’s not even there?” There is much less weight put on that kind of loss than a more traditional loss, to the point of it being overlooked completely. As I said in that post:

“There are funny ways that church culture reflects most people’s unawareness of our disenfranchised loss—not in what they do give us, but in what they don’t give us. The sermons that aren’t given, the prayers that aren’t offered, the books that aren’t written. As if what we are going through is not that important.”

Unintentionally and silently, we are told that there is no reason to grieve.

When my dad died, I lost something tangible. People called me throughout the day. They held me when I cried and asked me to talk about what I was going through. They came to his memorial. It meant the world to me. I needed family around me during that grieving process.

In that case, it was like a physical arm that had been shot. People needed to come around me, take the bullet out, bind up the wounds, tell me it was going to be okay, and walk with me through the healing process. They rose to the occasion and helped me recover.

When it comes to being in my thirties and facing the prospect of not having a traditional family, though, it’s more like being shot in my phantom arm. If I were to wince in pain and cry out for help, most people would look at me and say “there’s nothing there. How could you be in pain?”

The truth is, I am in pain precisely because there is nothing there. The loss is over something that never existed, and that is what makes it so elusive. I have never lost a child but I have never had a child. I’ve never lost a husband but I’ve never had a lover.

The truth is, the loss of something that did exist and the mourning over something that never existed are both very, very difficult.

Disenfranchised grief doesn’t just happen with singleness. I have a friend who had an ex spouse die and she felt like she wasn’t really allowed to grieve because she wasn’t married to him any more.

Another friend didn’t feel like she was allowed to grieve the loss of her parents because she was adopted and should appreciate the fact that she had a family at all.

A third friend had a husband who was getting his PHD and had to work insane amounts of hours. They were on food stamps and she often felt like a stay at home mom since he was gone so much. She grieved for years, but whenever she expressed her pain to people they would look at her like she was crazy and say “at least you don’t have cancer.”

And here, my friends, is where the damage is done. We are constantly monitoring our pain and the pain of the people around us. Whose life is better? Should I be this sad over something so small? Shouldn’t I be grieving more? Why is she sad when what I am going through is so much harder?

When these kinds of rules are being followed, you can guarantee that hearts are being hidden. You can guarantee that someone is being deprived of their right to grieve.

There is one therapy that has especially helped victims of phantom limb syndrome. It’s called mirror therapy. It is very simple….the patient puts the mirror near the intact limb. They move their good limb around. When they look in the mirror, it appears as if they still have both limbs. The therapy tricks their brain into believing that their body is normal, thus allowing it to heal.

It seems like we need our own mirror therapy.

CS Lewis said “Friendship is born at that moment when one man says to another: ‘What! You too?’”

Maybe we could find someone that is in very different circumstances and look them in the face, like a mirror. Instead of saying “your pain isn’t as valid is mine,” we can say “What? You too?” You too are scared of feeling alone, whether you are married or single? You too are worried that you’re not valuable? You too have faced incredible trials and have come out the other side inextricably strong, absolutely beautiful?

Maybe then we can learn to grieve together, weep together, heal together. Because pain should never have to be hidden. And people should never have to walk alone.

Have you ever had to hide your own grief? What would have made you feel better in those situations?

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