You're Not Typical: A PCS journey through neurodiversity

 Trying to remember to pace yourself is difficult. It's easy to use all the spoons right away, and then some. It's even more of a challenge when planning ahead. Think about the weekend. What do you want to do? Maybe you have an adventure planned. Maybe you have something social, or a family event. Maybe a quiet getaway. Whatever it is, it took time to arrange the details and decide what is involved. Maybe someone else did the planning and you only had to say yes, which by the way is still planning. However it comes, it will take some sort of organization. How much work was involved in the planning, may I ask? Did you have to make any calls? Reservations? Plan meals? Pack clothes? In case you haven't already guessed, the point of this line of questioning is that everything takes energy. If you remember the spoon story, you might remember you are far more likely to have the spoons available to do this extra work than I am. When I want to do something that takes planning, I ha...

 If you think about disability, I bet you would picture people in wheelchairs, or who are blind, or who have some other visible ailment. PCS certainly isn't what people imagine. Yet it is a reality for many of us. I spent my first year fighting to recover and my second year coming to terms with my new reality. Once I accepted it, I had to learn to live with it. To be honest, I'm still working on that one. It's not easy given my landscape is still always changing. Being a disabled person doesn't mean I have stopped living. I don't spend my days sitting on the couch doing nothing (anymore). I'm adapting and growing, learning to be a different version of me. I've gone through a lot of growing pains to get here. I still can't spend the whole day outside, staying active and on the go. I know it is a thorn in my partner's paw but I've had to slow down. Quite often I have to stay behind and let everyone else go out without me. Honestly it's fine. I...

 Migraines are certainly not unique to PCS. They're also not the only type of head pain we get. There's also cluster headaches and tension headaches. If you are unlucky enough to get any of these chronically after a brain injury, they earn the title of Post-Traumatic Headache. The only one that stands alone is migraine. It seems to be traumatic enough without the extra title. The mechanism of these headaches after brain injury isn't understood by professionals. Indeed, the causes are varied on any given day for any specific headache I might have. But the so-called specialists will tell you that it is an abnormal pain response to the one moment in time when I hit my head. As for me, I'm not so sure. The brain is forced to change and adapt after such a brutal attack, like the fall I had. So it seems to make sense to me that something might become sensitive that wasn't before. Remember how I said this isn't unique to PCS? My aunt gets migraines with weather changes...

 I get tired. Like, really tired. I mean, more than normal, tired.  Imagine you have the flu. It could be a mild flu, or a heavy duty flu. Your head is foggy, your eyes hurt. Your body feels really heavy. Your limbs feel like they don't want to move. Nothing anyone says makes sense anymore. You can't think. That's neurofatigue. It's what people with PCS live with on a regular basis. When we say we're tired, this is what we mean. We mean our brains aren't working anymore, our bodies won't move and we need to shut down. Miraculously, somehow, we often will keep going. Just a little more. Doing one more thing. But the cost is high. Tomorrow we will have even less energy to start with. Let's do another imagination game. We each start the day with a cup of spoons. You have 40 spoons. I have 15 spoons. Let's see how many spoons we each have at the end of the day. First we need to get dressed. Then we need to make breakfast and eat it. After breakfast we br...

Persistent Concussion Symptoms (PCS) is diagnosed when a person continues to have the symptoms of concussion beyond a certain timeframe. The time frame is not exact, different sources pin it anywhere between one and three months after the concussion. These same sources, who profess to be experts in the field, will also tell you that most people (anywhere between 70 and 85%) completely recover from concussion within the accepted time frame. Anyone who is left after that is not typical, an exception to the rule. I suppose that makes me "not typical." But why should I be surprised? I have never been typical. When I was born, a valve that is supposed to close in the heart, didn't. Some of my blood was bypassing my lungs completely as it journeyed from one side of my heart to the other, depriving me of precious oxygen. I had to have life-saving surgery when I was eighteen months old. When I was a child, an ultrasound of my abdomen revealed that one of my kidneys has a double h...

 Do you know that song by Chumbawamba? It was a hit when I was growing up. The phrase in the song goes, "Do you suffer from long-term memory loss? I don't remember." I don't remember the day I hit my head. I think I blocked it out. I can remember flashes of it but that's all. Most people remember clearly the traumatic event that changed their life, unless it affected their memory. The injury didn't just take my vocabulary away. It took away my recent memories. I forgot movies I had seen, books I had read. I forgot how to do my job, a job I had been doing for 5 years. The memory loss shows itself in a variety of ways. I have had to learn to adapt and cope with it. Most people don't even notice. I understand better now how dementia can go undetected for so long. So here's a glimpse into my world. Today, a new client came into the office. She was looking for information about how to make an appointment for her husband's first visit with a nurse. She s...

 People keep telling me I'm deaf. I don't listen to them. Since I recently did an audiology assessment and found out I have both hearing loss and significant Auditory Processing Disorder, my wife feels vindicated. Now when I don't understand her, or worse, she doesn't understand me, she tells me it's because I'm deaf and she knows it. Last night, we were discussing when this year's Olympic Games are starting (next week, by the way). I told her the football starts on Thursday. She asked when are the opening ceremonies, and I said Friday. She replied, "Saturday?" I asked her how she got Saturday when I said Friday. She said it's because I'm deaf so I mumble. I don't know how, even mumbling, a single syllable word becomes a double syllable word, that sounds so different! So I wonder, how quietly, how loudly, do I speak? I don't know. But what's more frustrating to me is that I can't understand other people. And it's MORE th...

 Have you ever been lost for words? Like really lost? I mean like you can't find the words you want to say, at all. After my accident, I lost a lot of my vocabulary. I also started having trouble completing thoughts during conversations. It has gotten a lot better over the years as I have relearned the words. In the beginning, I very often would start talking only to stop in the middle of a sentence because my mind suddenly went blank. I had literally lost my words. It is the strangest feeling in the world. Well, one of them anyway. My mind was actually  blank. I didn't even have the words to say that I had no words. Imagine you are reading a book and the author just stopped in the middle of someone's dialogue. The page is empty after that. That  is what happened to me. The only way out was for the other person to say something that I could respond to again. I still have a lot of moments like that where the page goes blank, but now it usually only lasts a few moments unti...

 I'm not sure I really understand neurodivergence even now. But I can tell you acquiring it is very different from having it from birth. People who grow up neurodivergent, just ARE. That is how they see the world. It is complete. The picture isn't missing anything. They haven't lost anything, they haven't missed anything, and they don't know they are different. Even once it has been explained to a neurodivergent person that they are indeed looking at the world differently, they will tell you it looks fine to them. Because it does, and it is. But if, like me, you actually became neurodivergent through some event, you know the difference. You have in fact lost something. I am not telling you that I am in on a secret, that I know what they do not. Let me assure you, I am speaking of something quite separate. Those of us who have acquired neurodivergence are in a different group altogether. We had a picture that looked a certain way. We know what it is supposed to look ...