Concussion: Living in anguish because of memory loss

Hello souris17, thank you for agreeing to share your story with us on Carenity.

First of all, could you tell us a bit more about yourself?

Hello, I'm married and I have three children. In life I love art, the great painters, lesser known pictorial works, reading and the environment (nature, animas, respecting the environment and conservation, etc.).

I have just discovered the world of horse riding, without actually riding... I guess you could say that I dream about it! I also like cooking. Before, I used to embroider, draw, knit, etc. I also painted on porcelain. I like to listen to eclectic music. 

I also enjoy friendships and discussion, flowers and gardens, the sea and its shells that are so fun to collect... As well as its little bits of plastic that wash up on the beach...

Thirty years ago you suffered a concussion. Could you tell us how it happened?

I was working as a non-commissioned officer in the Army, as a chief accountant and at the time we were in the FFA (French Forces in Germany). I was in charge of paying the conscripts' salaries, ordering train tickets for their return on leave, the equipment to clothe them, the necessary equipment for sleep and to foresee the number of people eating in the canteen to avoid waste. I therefore always had to have a "headcount" of people, sleeping equipment, "wartime" equipment, etc.

This function requires, in wartime, to defend the post which is part of the command of the unit and ensure its smooth functioning (in the field, if there is no food, no water... you don't keep the troops in action for long). So, you have to protect the camp and be able to shoot down planes in the air (a quick threat that can bomb you very easily). So I took part in an anti-aircraft warfare course with an American heavy machine gun we often called "12.7" because that's the diameter of the ammunition. I hope you can understand the size of the thing when I tell you that it takes two people to lift it... It was attached to the gun turret of a Renault GBC all-terrain truck parked about 100 metres away because when the gun fires, the ammunition (which is about the length from the tip of your fingers to your palm) travels almost a kilometre a second. It a very fast and forceful shot, in one direction (forward), but then there's the recoil of the weapon. I took the recoil in the upper jaw and it cleanly broke my left upper incisor (the only tooth that was sticking out of my mouth a bit).

When I realised what had happened I found myself with the broken tooth in my hand and heavily bleeding. I was stunned, I was in like an upright state of shock but I didn't know it yet...

The back of my skull was hit when my head flew violently backwards under the impact, the edge of the heavy helmet crushed and pushed the upper cervical vertebrae towards the atlas (C1) vertebra, the medulla (part of the brain stem) and the trigeminal and Arnold's nerves...

My spine twisted violently from left to right, towards the bra band and above the kidneys.

Speed is a force and this invisible force, when it hit my upper jaw, went through the inside of my palate and through the most sensitive parts of my brain: the central core (the pituitary gland, the hypothalamus, thalamus and amygdala).

What impact did the concussion have on your life (partial amnesia, memory loss)? 

I was in a lot of pain and because I was stunned, I didn't realise how bad I was. 

I had taken first aid and resuscitation courses when I was 17. We were taught that the person who doesn't say anything and who seems fine on the surface may be the one most seriously affected (internally). The trouble is, when you're the injured one, if no one looks to see what state you're in... This is what happened to me. 

I didn't get any care. NOT ONE THING. The accident happened around 11am, I was allowed to go to the infirmary at the end of the afternoon, when everyone wants to go home and not think about work. The nurse told me "You're not from our regiment, we cannot treat you". 

At that point it had been at least 6 hours that the nerve in my tooth had been severed. I was having feelings of electric shocks like I was being tortured and the nurse didn't even give me a pill for the pain. I spent the night (sleepless) and the whole morning of the truck ride home in pain, with nothing to ease it. 

Around lunchtime the next day, I finally found myself in my regiment's infirmary and it was the junior officer who saw me. Instead of thinking that it was serious and seeing the head doctor, he told me to see the military dentists on Monday (it was Friday, I had already been ill for 24 hours).

And that's it! Nothing else!

I didn't realise that I had gaps in my memory, because I remembered some things very well. 

It was during the birth of my second child, 6 years later, that I had a first reaction that made me understand that what I was experiencing was not normal. 

Then 10 years after the accident, in a dream, I remembered the sound of the explosion before the impact. I have quite a few after-effects such as intracranial injury and learning and memory problems, extremely violent headaches, etc. 

How did you realise that you had memory loss? How did you feel when the memories started coming back?

I realised it one day when I happened to be having a conversation with someone I had tracked down and contacted (just to say thank you for her past work, I had this innate feeling that it was incredibly important to me, I needed to say thank you, so I could die one day with peace of mind). The person noticed that I was being overly polite and that I had remembered her as a colleague, not as a friend. By asking me questions she saw that I didn't remember, so she got more precise in her questions or gave me a few details here and there... And there I realised that I had a complete blank in my memory.

The blank, the void in my mind, it's so strange. I tried so hard to find the memory, but I just can't remember. I know it's real because there's evidence in the events that happened. It's all very unsettling for me, especially since I've just discovered this 30 years after the accident! It's a kind of emotional tsunami, you feel a kind of distress and anxiety about not being able to remember, but also joy that someone is there trying to help you recover the memories. You have a feeling (or an illusion?) that it's going to get better, that you're going to understand the whys and wherefores of everything you've been going through for so many years. But after five months, I only had three "snapshots" of recovered memory... It's fuzzy and fleeting like a feather in the wind, and nothing else comes to the surface.

Do you think your life would have been different without the concussion? If so, in what way?

I would have been different, not as weak, not as lost, I would have analysed certain situations better and I would have avoided certain people. I would have also been able to get through therapy more quickly to free myself from all this post-traumatic stress. Less stress, less unnecessary anxiety, less self-confidence due to lack of physical strength. I would have no headaches, so I'd have a clear mind to analyse situations and organise myself. I would have kept my concentration, my ability to memorise things, I wasn't even 24 years old when the accident happened! My wonderful years of youth were very difficult and wasted. On the positive side of things: I could have died, it could have been worse! 

Nevertheless, my invisible and unrecognised disability leads to hostility from strangers who don't want to understand. I have much more empathy than these people - not being able to do volunteer work (physically it's too hard), for the past five years I've been a telephone befriender (making friendly phone calls) for the elderly (many are alone, they don't all experience the same degree of loneliness or abandonment, some are much more active than I am at over 90). It has opened my eyes to my involuntary isolation over the years. COVID-19 has shown me that I am even more isolated than I imagined and have been for years.

Yes, life would clearly be different! On the one hand, I could have continued to do sports, love animals, enjoy nature walks and artistic and cultural activities. On the other hand, I am injured, with pain in my head, neck, jaw, teeth, shoulders, arms, back, and everywhere else, and I am wasting my time looking for someone who will really look into my condition and help me to get better.

Everything has been affected: my emotional life, family, friends, love life, work, hobbies, social life, daily life, learning. EVERYTHING is impacted, NOTHING is spared. And as a bonus, I feel guilty and others know how to make me feel even more guilty.

You were recently diagnosed with fibromyalgia. What made you seek help for this? What symptoms were you having? How long did it take to get a diagnosis?

Since 2017, I went to see a doctor for fibromyalgia (at pain centre in Chartres), I was sent packing, told that it was a catch-all disease, that it was all in my head (I ticked 100% of the boxes on the fibromyalgia questionnaire). I had been describing these symptoms for at least ten years. 

I went to a neurologist for my headaches. She saw my notebook with the pain sketches, she mentioned fibromyalgia in 2018, but I consider that it wasn't really recognised and written down until December 2020.

Then the depression came along! That's one more thing to overcome! 

What current care are you currently receiving? Are you satisfied with it? Why or why not?

My care could certainly be better, but it could also be much worse (i.e. nothing at all). Where I would have liked to have been helped was with the paperwork for the mandatory military insurance that you have to take out when you join, this insurer didn't pay me a cent. Coupled with the errors of not assisting a person in danger (failure of duty to rescue in French civil and criminal law), repeated professional misconduct: the regiment didn't file the required disability claim.

The physical pain was compounded by the despair of not being heard or helped! 

I would have liked to be able to live quietly and normally, with a decent salary, leisure time and a family life that I could manage and participate in. The first challenge I face in my daily life is taking my children to their activities or to school: it's hard to drive with crippling headaches. It is also difficult for me to wash my hair, to wear even the lightest of glasses, they trigger neuralgia. Cold, heat, wind, waves, air pressure, fluorescent lights, noise, air conditioning, even smells trigger my neuralgia.

Finally, what advice would you give to other Carenity members reading your testimonial?

I would encourage you to find your own personal ways to adapt to your health concerns, to follow your common sense and instinct (avoid quackery or bad doctors/practitioners). To see what good is left in the "bottle" and not what you have lost. To find a new path, which is inevitably different from what it would have been without an accident or illness. We may have lost some things, but we may have become better in other areas. I wish you all hope, encouragement, inventiveness and that you meet the right people at the right time who can give you real help and not "cookie cutter advice" that is not adapted to your particular situation.

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