It's getting harder to remember things. Not the old stuff. I can tell you about things that happened 30 years ago like it was yesterday. But what someone just said to me? What I just read? Where I put my keys five minutes ago? Gone.
It started not long after my first couple mini strokes. The doctors explained what was happening, what to expect. But living with it is different than hearing about it. They also said it could be compounded by previous undiagnosed concussions. And my autoimmune disease that impacted my nerves. So there's probably multiple things working together to make this worse.
At first I thought I was just getting older. Everybody forgets things, right? But this is different. This is reading something and having no idea what I just read by the time I get to the end of the paragraph. This is someone telling me something and asking them to repeat it because it didn't stick. This is putting something down and spending 20 minutes looking for it.
It frustrates me. It scares me too. I won't pretend it doesn't. You start wondering where it ends. How much worse it gets. What else you're going to lose. I try not to dwell on that. But late at night and early morning when the house is quiet, those thoughts creep in.
It makes taking academic courses that much more challenging. I'm working on my doctorate right now. Tons of reading. Tons of writing. Tons of information I need to retain and recall. Some days I read the same paragraph three times before it sticks. Some days it doesn't stick at all and I have to come back to it later. Everything takes longer than it should.
Working in a fast paced environment? Forget about it. Literally. That's not an option anymore. I can't keep up with rapid fire information and quick decisions like I used to. The brain just doesn't work that way now.
Thankfully, the university gives me grace with medical accommodation. I'm allowed to turn in assignments a few days after the normal due dates and given more time on tests. Without that, I'm not sure I could do this. It doesn't make it easy. But it makes it possible.
Calendars and notes. Everywhere. If it's not written down, it doesn't exist. I try to establish routines as much as possible. Put things in the same place every time. Do things in the same order. The more automatic I can make something, the less I have to rely on remembering it. I make sure I rest. Make sure I take my medication. Do what the doctors tell me to do. That's about all I can control.
It frustrates me. But I'm slowly making peace with it. This is just how it is now. Fighting it doesn't help. Getting angry at myself doesn't help. I have to work with the brain I have, not the one I used to have. Some days are better than others. Some days I feel sharp. Other days I feel like I'm walking through fog. I just keep moving. Keep writing things down. Keep showing up. That's all I can do.
You ever have to make peace with something your body does that you can't control?
Thanks for reading,
Joe
Notes:
-All content is mine unless otherwise annotated.
-Images are my own unless otherwise noted.
-Photos edited using Linux photo editor and drawing and/or iPhone SE.
-Page Dividers from The Terminal Discord.
I suffered from multiple concussions throughout my early 20's and your story is exactly how my day-to-day life looks like. If it doesn't have a note, it doesn't really exist. It's nice of your university to accommodate the situation because when I told mine, they thought I made up a problem. Nobody in my family even understood the struggle to today. They think it's easy to forget things but it's not. I had multiple memory assessment throughout my entire teen to prior the accident and it was impeccable. So, at first seeing the decline made me angry and I went through denial phase as well. But now, I already make peace with it. I keep notes, reminders and tell myself it's OK to take time to learn anything at the speed and pace I am comfortable with.
You'll be fine, just make sure to stick the neurologist plans and really watch your diet. Since the accidents, I learned that I don't do well with carbs like Rice, so I am mostly on a carnivore / pescatarian diet.
It does my heart good to know you are coping so well with your memory challenges. I try to watch my diet becuase of blood sugar challenges as well. Yeah that rice will blow it.
rice is the enemy and it can cause severe brain fog. I'd also watch out for MSG intake as well. I hope you can finally finish the degree! It takes time but you can do it 😊
I'm trying to make peace with my waistline, but that can controlled if I'm disciplined enough with my diet 😆
But seriously, I'm sorry to hear about your condition, I'm not sure how I would cope with it. Does background music help to sooth things when it is quiet?
I find the hum of a small fan helps me more than anything to fall asleep. As far as to sooth when awake, I always need something on in the background. sometimes music, sometimes it is just the TV.
One thing that's certain: We are all going to experience decline of some kind, unless we die young and suddenly :) It is humbling to consider our loss and then to see it in others as the years pass. I'm trying to regard these changes as part of my life story, my experience. It's almost like we are passengers. We watch the changes as they occur.
I think it's very good for you to be able to catalogue so precisely what's happening to you now. It's helpful to you to understand and to cope. You have clear perception of your difficulty. That's the first step in handling any challenge. And then, as you catalogue your experience and share it, we have further understanding of what's happening to us.
As you can see from the comments, decline, or loss--of any kind--is a common, human experience. We all sit in our little private universes and wonder about this or that. We wonder how we will cope. We wonder what is to come. You help us.
As you describe your challenge, I relate it to my own, to my husband's, to my brothers' and sisters' challenges. Thank you for being so insightful and honest. You can tell by the comments here that you give us all a moment to reflect.
Keep on fighting. Let us know when you have completed the requirements for the degree. That moment will give us all something to celebrate.
Thank you. Yes, being able to express thoughts here helps me process deal. Sometime it helps me find clarity and answers. Sometimes others are able to help me find clarity or peace through their comments.
I can't speak to your specific situation @coinjoe, but I do relate to the loss of short term "retention" while having crystal clear recall of things from way-back-when.
In my case, most is attributable to a combination of ADHD (inattentive) and Cognitive Disengagement Syndrome (CDS)... and I would not be able to function without post-it notes and lists everywhere. Some days are almost complete write-offs.
Well done for recognizing and accepting that we have to work with what we have and not what we wish we had. Beating yourself up for perceived shortcomings is a useless exercise...
It is. I used to do this all the time due to my health challenges. It took me some time to figure out it was pointless to focus on what I couldn't do anymore. I started focusiing on the positive things in life. The good health I still had. What I could still do. No need to focus on silliness.
Sorry to hear about that. You are amazing for accepting what is and doing what you can to get through the challenges, instead of fighting the condition. It's nice of the university to make some adjustments for you.
Negative thinking does no good. I have learned that the hard way. Sometimes negative thoughts creep in. But I try to tackle them and turn them around.
I also forget things, especially when I'm tired, but I think that's "normal". Work, fatigue, obligations... I had to have heart surgery at the age of 28. I didn't want to, but my body demanded it. It was a kind of reset. I came to terms with it, that is, I adjusted my obligations to the new me.I've been carrying that "silicone" inside me for 13 years, sometimes it's better than it's worse. But there's no surrender. Because life is a constant struggle, even with yourself.
That is what is important. Adjusting and adapting. Not going to sulk and feel bad about it. All in all, I think we are doing pretty good compared to others my friend. :)
We think the same.
My dad had a hemorrhage in his brain a while ago and he experiences the same thing. Old stuff he can tell you about with no problem, but ask him what he did ten minutes ago and it is a struggle for him.
That sucks. And scary too. Hope everything else is okay with him now?
Yeah for the most part thanks! He is just getting older...
A lot of people don't really understand how just "longer than it should" has a knock-on effect on so many other things. And then, when it also take a lot more effort than it should, it compounds and causes more issues. I wish I had some kind of medication that could ease the issue, but the doctors aren't willing to even try.
That is too bad. Honestly, I am not sure this medicine even helps. Maybe it keeps it from getting worse. Who knows. Just try to keep my mind exercised best I can. Now need to stop being so physically lazy and do same for my body.
Here’s what I think, our body, in general, is basically a vehicle for our soul. Based on that, we should take care of our body just like we would a car, our body needs the best nutrients to function properly, that’s only logical.
I started by drinking the right amount of water for my weight, then adjusted my diet to include plenty of protein (chicken, various fish—especially sardines and meat, particularly chicken liver), healthy fats (avocado and high-quality olive oil), and a variety of vegetables. The only thing I still need to change is my 8 hours of restful sleep because I go to bed too late 😅😅
My advice is that you need to change your habits, that will help your body regain the balance it’s lost in your case, your memory. Plus, you should see a doctor
I think the changes in your memory didn’t happen overnight, it’s been deteriorating for years, but we just don’t realize it, and the imbalance is starting to cause symptoms 🙁🙁
I see a neurologist regularly. I watch my diet. I do need to exercise more. Thank you.
Sounds a bit like my old aging running legs, they just don't recovery or move as fast as they used too. It is a big learning curve to get the best out of them without over doing it.
But the good thing is, like my brain, they still work for the most part. They just need to warm up a bit :)
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Luckily, my body has never given me much problems. But I grew up with my family dealing with just that - epilepsy in my brother. Kidney cancer for my father, later a stroke. And my mom, don't get me started. I sometimes wonder how she managed to still be alive, and happy on top of that.
That said, if you don't mind the questions, how is your family dealing with this? Do you talk openly about it?
They take it in stride. But they get frustrated at times just like I do. Yeah, we talk about it.