Somedays it's a lonely place

Two weeks ago, I had the kind of day that reminded me of very real and certain things: one, my body is not 20 years old anymore, and two, my stroke really bit me in the ass. It can be easy to forgot how much energy our brains need to do all the daily tasks that we are asking ourselves. One day not too long ago, I was telling a friend that I was feeling really tired. I was feeling the kind of tired that I could just get into bed and be there for days and I had been feeling fatigued like that for several days. And then she replied in her sarcastic tone that I love and said, “Well, hello, you had a stroke, of course you’re tired!” (We should all have a good friend like that who brings us back to reality). We continued to talk about the concept of fatigue about how even small traumatic events can, as I said, bite us in the ass.

So, two years later I’m still battling fatigue and still trying to figure out how to manage it. Two weeks ago, that week my energy level was pretty good so I went to the gym 4 days, got a lot of things around the house, and was happy with some personal work. The following week, my brain was toast. On the Tuesday morning after President’s Day, after the kids were all on their way to school at 8, I went back to bed and slept until 10:30. Subsequently, I laid in bed for another 30 minutes, made some breakfast, rested for another 30 minutes, took a shower, got dressed and it was almost 1 in the afternoon until my day really started. Before you start to feel jealous, don’t. 

I don’t know why it took me so long to realize this, or perhaps I was still in denial with several things, but I’m pretty sure I know exactly what keeps me tired: it’s my aphasia. 

I feel like it would be totally appropriate to interrupt right now with something inspired by an old political slogan by saying, “It’s the aphasia, stupid.” Proceed....

And what actually is aphasia? Aphasia is a result of a stroke or brain injury, and affects a person's ability to communicate. If you have aphasia, you may find it hard to talk, listen/understand others when they speak, read, write, use numbers and do calculations. And for me, in addition to all that, decisions are hard and multi-tasking are almost physically impossible for me. For instance, it is almost impossible for me to write and listen to something like music, television or voices at the same time. Before you start to say, “well, I can’t multi-task either,” either you have aphasia yourself, or you have no idea what I’m talking about. Noise literally hurts. Or, “well, I have terrible grammar, too,” it’s completely different from saying that you are prone to typos. Words literally change from what is in my head to what I end up writing. For one example, in my head I will want to use the word “specifically”, but then writing it, I will write the word “necessity.” Another example is that I will speak a word aloud and I have no idea for the life of me how to spell it. And it can be a little, normal word like “such” and it would take me a few minutes to say the word over and over again until I remember how to spell that. It’s strange how your brain works - long, complicated words are so much more easier to work with than all the little words.

Just like the fatigue, I’m trying to manage and work around all those communication limitations. Obviously I am reading and writing and speaking on a daily basis, but what has changed about it all is that communication was previously so commonplace, so freely granted like water and air, a very important core of what makes us human. Everyone needs to communicate. So, something that used to be so commonplace isn’t anymore. What it is now is truly an investment or a decision. Believe it or not, that’s been hard for me to realize and to exercise it. Because I still want to communicate like I used to - speak when I want, speak and listen like everyone else, and compete at everyone else’s pace. I don’t want to take the time to read an article for 30 minutes when it used to take 15. I don’t want to have to constantly fish for the right word while writing or speaking, I just want it to be there. I just don’t it to be there. 

I invested my time and energy to write this essay so that people would not take pity on me about the stroke, but because I have to physically write things down to help resolve problems and I’m hoping that I can help other readers that are struggling with the same issues. For a long time when I would tell people that I had “issues” from the stroke, I never used the term that I had “Aphasia”. And one day it finally dawned on me that I should use the right term because using the right term is closer to the acceptance. 

And denial is a river in Egypt, right? Rrrriiiiight.

So it brings me back to my lovely friend who so wickedly and wonderfully brought me back down to reality. The aphasia can be a really lonely place somedays and I have been terribly pissed off about it. Just like my friend reminded me that I had a stroke, here’s my own personal acceptance of reality - I have aphasia and it may or may not go away. I may be like this for the rest of my life. 

Woof. What a big bite.