fbpx

Discovering Aphantasia after beginning GMI for CRPS

Liberty asked 1 month ago
126 views 2 comments

I feel like finding out I am aphantasic has been a huge shock to the system particularly as to how after 45 years,  I have come to find out. To confirm what two days of research as lead me to finally understand. I took the aphantasic extended test that also went through smells and sounds. Every single answer no matter how hard I tried (after I kept thinking I must be doing something wrong) was a 1. There is never an image, or a knowledge of being able to remember or recreate a smell or sound. There is nothing it is black.

 

The reason I have come to discover this is that for six weeks I have been in a rehab program for Complex Regional Pain Syndrome (CRPS), which is a neurological disease. One of the very few ways to attempt to reduce the pain is to go through Graded Motor Imagery (GMI). The GMI requires you to visualize movements as being pain free. Not to move the painful limbs but to visualize it. “The more vividly you can imagine the movements, the more effective this is. Some people will start to add smells and sounds”.  Now I realize this is something my overrun nervous system is not responsible for or my failing to concentrate and try hard enough.

 

 

 

I embarked on the rehab being shocked to realize that I could not recognize a left or right hand when going through an app. There was no way for me to relate the picture I was seeing. If the image was very obvious (an open flat hand for example)  I would be able to look at my own hand and compare, but I did actually have to look at my hand. The years of driving and not being able to take a left without looking at my left hand and making an L to make the decision, and even then at times getting it wrong, became a bit of a standing joke. The above could be solely down to having CRPS but I thought it was worth noting but to the extra level of confusion that I feel lI could be facing.

 

Throughout the programme we have been doing relaxation and meditation with guided visualization. The phrase “minds eye” is used. I had no understanding of what this really meant I supposed for me I was just trying to bring up a memory. No matter how hard I tried, there was no way I could ever imagine myself at the beach or  in a meadow. My brain would fight it, I thought it was because  I did not want to be in a meadow or a beach, for me that was not my ‘happy place’.  I thought it is not working because I wanted to be in the forest. In another guided session we were able to go to the place that we wanted to imagine a room where we felt safe, that beach or my elusive forest. There was nothing just black. I tried to imagine the forest in the distance, then my single favourite tree (it is an old stump with an amazing tree growing out of the top, I know there is space between the roots and where the tree starts, which is why it’s so amazing. I can describe it to you as I have seen it so many times but but I cannot see it no matter how hard I try. I then thought to myself start small and I tried to imagine a leaf, nothing just black.

 

So back to the realization. I was trying to relax again and imagine my happy forest and failing and I said to my husband “There is nothing I can see no matter how hard I try”. He tried to break it down and said to me, “describe a tree” so I went though the standard to describing it had a  brown  trunk  and green leaves. He then asked me to close my eyes and picture it and again nothing but black. I asked him if he could see a tree if he closed his eyes and he said yes and described clearly the colour, lines in the bark, the shadows the leaves caused on the ground. I could not believe he could actually see the tree.

 

My husband being incredibly inquisitive , started to research the subject and this is where he discovered Aphantasia. For weeks I believed that my stress levels and past traumatic events where what was blocking me, I thought it was yet another failing on my part, not being able to relax enough, being too stressed. It now clearly appears this was not the case.

 

He told me to close my eyes and imagine his face, I know he has a beard and I know in the past I have described his eyes as kind but I was not able to build up any picture of him in my mind no matter how hard I tried to ‘construct’ his face.  We then went through a list of things that we each tried to conjure up a picture. Every time he was able to fully describe what he was seeing, an ice cream, a lake, mountains, the list goes on, but for me it was nothing but black. We then moved onto smells and taste, he could describe eating his favourite food, the sensations of texture, different elements of the taste. I could not imagine the texture or taste of my favourite treat rhubarb crumble that I had eaten just five minutes before. We moved onto sound we had just been listening to music and he said can you hear the piano we just listened to, I had nothing it was silent. Again he could hear it clearly, actually hear it, this was inconceivable to me.  I felt frustrated that I could do nothing to access that part of my brain. I felt like there was huge impenetrable locked door, like one you may find back in medieval times or in The Lord of the Rings.

 

The only time in my life I see visual images is when I am having nightmares, I can see incredible detail when I am having a nightmare, for example, enough detail  to see individual hairs under the eye of a dog. The next day I know that I saw these things in the nightmare but I cannot picture them the next morning only to describe what I saw in words.

 

I followed this by starting to think about more areas in life that could be effected. How has this effected traumatic events of the past? I have had many things happen that have diagnosed me with anxiety disorder, panic disorder and PTSD. This has led me to really think about PTSD. I know these traumatic things happened in my life, I can view them as a series of memories but I cannot ‘relive’ them. Perhaps this is a huge benefit to someone who has gone through trauma, or perhaps not being able to relive events leads to more anxiety. I have no idea.

 

I then thought about my degree in photography, I have always been obsessed with recording everything (this has faded since CRPS as I have it in both hands and forearms so holding a camera now is extremely painful). However now that I look back I was recording everything as this is my only way to have to remember. I am also wondering how it effects memory without being able to store and retrieve any images. If I do not have a photo of the past I struggle to remember things properly. Most upsetting is that my dad drowned and I have no way to see his face unless I am looking at a photograph of him. Just now I had the  realization that if the photographs were to get lost / destroyed I would have no way to see his face again. I could not build a picture of him in my mind.

 

To conclude I am also wondering about feelings, after just reading this to my husband he said, “can you remember what it is like to feel happy or sad”. I could not.

Jennifer McDougall Staff October 19, 2020 01:55 pm

Liberty, thank you for being so open and sharing your story.
Your experience with Graded Motor Imagery (GMI) for treating Complex Regional Pain Syndrome (CRPS) is very eye-opening, and illuminates a gap in treatment programs for people with aphantasia.
It sounds like the benefits of GMI rely heavily (exclusively?) on mental imagery? Is there anything from this experience that is/has been working for you?
I think this would make a great article, followed by a discussion post to see if others in our growing network might have a shared experience with GMI. What do you think about telling your story in an article?
Send me a note [email protected] so we can discuss!

Liberty replied 1 month ago

Thanks Jennifer I sent you an email. Nothing in GMI has been working as it is impossible to imagine moving my hands without pain as I cannot imagine my hands, let alone them moving.

a.schroeck7 November 11, 2020 04:43 pm

This was so interesting and I found that I was able to relate to your experience a lot! I also have PTSD and while I am unfortunately able to "see" everything again during nightmares I cannot visualize things consciously when I am awade. EMDR (eye movement desensitization reprocessing) therapy has been recommended to me but I am nervous as I know it involves a lot of visualization. I want to try it and hope that it will work but am afraid that my experience will be similar to yours with GMI. I hope it is validating for you to know that this isn’t because you aren’t trying hard enough or that there is something wrong with you. Our brains just work differently. I also find it interesting that you got a degree in photography. I love photography and feel like it is so important to capture the moment because I can’t go back to it visually later on. I wonder if this is a common theme for people with aphantasia.

Liberty replied 2 weeks ago

Hi there, Yes it is unfortunate that we cannot control the nightmares, I guess those visual images are controlled by a different part of the brain. With regard to visulization for me I tried for 9 weeks and there was still nothing so that process for a possible path to managing CRPS pain is not currently there for me. Currently I am watching video of my hands moving and narrating what I am doing and saying it is without pain. This has not had any effect at this current time. I had heard of EMDR (I think it had been mentioned to me) I did not know it involved vizulization. Re photography, yes I was obsessed with capturing everything and it is my only form of reference to the past now. I really hope you find a way forward that works for you.

Scroll to Top