I miss my words, I miss being able to talk like a grown up who went to college. I get frustrated with endless people telling me they have problems with words sometimes too. Everybody has problems finding the right word occasionally, some of us have that problem daily. Not just with the big fancy words; I vividly remember I could not remember the word “straw” when I was trying to use the metaphor “the straw that broke the camel’s back”. I am sure I looked like insane person freaking out about “The thing that broke the camel’s back! You know! Bah, what is that thing that broke the camel’s back?!” Yelling and frustrated because I knew the word, I just couldn’t remember what it was, I could picture it in my head but it just wouldn’t come to me.
People who only occasionally have these issues can usually just use another word and move on, my brain get stuck in a loop, or rather that is what it feels like. Like a computer that just froze and now has that wheel of death and won’t do anything but sit on a single screen. That is what my words finding problems are like. Then, maybe a week or month later the word will come to me and in my excitement I shout it out and look like a crazy person yet again because absolutely no one but me remembers that was an issue and I am so excited that I remembered.
Another thing that frustrates me with my cognitive decline is my loss of short term memory, I am not not just talking about walking into a room and forgetting why I am there, everyone has that sometimes. I am talking about watching an entire season of a television show or a movie with my husband and then recommending we should try watching it because it looks good, only to be told we just watched that last weekend or already saw that whole season. “Was it good?” is always my response, pretending that it must have been pretty bad if I can’t remember it. When people ask me if I have seen a particular movie I always have to say, “maybe? I honestly don’t remember”.
When I was in high school I entered poetry competitions, short story workshops for creative writing and wrote on my school newspaper and one year helped to edit it. I was so proud of my vocabulary. Now I cannot remember basic words, or even more frustrating, words will get mixed up in my head while they are coming out of my mouth and turn into some weird babble of nonsense word and people laugh. What I want to do is cry, or scream… that’s not what I meant… this is the word I wanted to use and I usually do when it’s just my husband or my kids because this happens around them so frequently that they know better than to tease me now. When it happens in public though, or at work I just have to laugh it off because I don’t ever want to look like the weak person I feel I have become.
None of the doctors prepared me for how emotionally traumatic MS would be. No one ever said, yes it can cause depression and anxiety but also humiliation, resentment and shame. I have been to my lowest of lows since my diagnosis, and most of those lows were because of how much my brain has been impacted by these changes. It’s hard to feel like a good parent when you are supposed to be reading to your children but your sight fails you and words look weird.
When I started going through these changes, there was no one online like me that I could relate to. Hopefully, if you are like me you can find some sort of peace knowing you are not alone. Shout out in the comments if you get it, need support or have problems with symptoms. We can commiserate together!