Imagine getting up in the morning and realizing you don’t feel right. It’s not a cold or flu. It’s your head. You know you have a brain, but it just isn’t performing up to par. You try to carry on as usual, but everything takes longer to do. Your mind, the one you take for granted, has decided to go on vacation. It's nowhere to be found. In its place is a sense of fuzziness and not the cute and cuddly kind. It’s also not the kind that can be cured with a coffee or two. I know, because I’ve been there.
Thoughts and Speech
On one of my bad-head days (my terminology), I know what I want to do but, like a bad internet connection, there’s some buffering. There are delays in how fast I can process information, both providing it and receiving it. Sometimes there is a complete outage. Nothing gets processed. It’s possible for someone to tell me something on one of these special days and have the information totally gone the next day, even if I took part in that discussion. I have no idea what I said.
On these days, my brain seems to whisper to my body instead of taking control and sending signals that say ‘jump’ and having my body respond with ‘how high?’ My mind says ‘jump’ and my body says, “Did you say something?”
When this happens, I try to concentrate even harder on completing tasks that usually come naturally. I try to keep a grip on the words that seem to elude me, like saying, “You know that thing in the corner, the table, well not exactly a table. What students sit behind in school.” Sometimes the word ‘desk’ finally comes to me and other times the person I’m talking to will supply the word and put both of us out of our misery. Yes, all of us experience this at some time or other, but this is not the same. It’s not a one-time-only thing. It happens over and over again...one time right after another.
In other situations, it’s not so much that I can’t think of the right word, it’s more that I can’t remember what I was trying to say. One moment the thought is there and, in mere seconds, the thought is gone. I can start a sentence and then have no clue where I was going with it. When this happens repeatedly, and I'm talking about not being able to finish even one sentence over the course of many minutes, I think about the benefits of having a teleprompter. Now if I could only remember to ask for one I could….. Ooops! Gone again.
Other Warning Signs
In addition to the memory and speech problems, I also do a lot of rapid blinking and my fingernails and teeth seem to be permanently fused together. I ‘m quieter than usual and that’s saying a lot. With my brain not firing on all cylinders, it’s just easier to refrain from trying to organize my thoughts and then take it to the next level and express them. In addition, when people hear me speak, it removes all doubt that I’m in trouble and not capable of functioning properly.
For example, I’m a business analyst. I analyze data every day. I organize information and put it into documents (requirements) that both technical and non-technical people will read. In contrast, on one of these special days, saving a file on my computer may be beyond me and, even if I figure out how to select the Save icon, entering a file name and deciding where to put the file can be completely beyond me. My brain is truly fried. Sometimes, just to spice things up a bit, I also feel nauseated.
Once this bad-head day starts, I never know exactly how it will finish. Sometimes the fog lifts and I’m totally capable of having a productive day and other times the fog not only remains, it gets thicker.
If I’m lucky, the fog clears and I can have some semblance of a normal day. Sometimes a slight fog remains, but the ability to say complete sentences returns. Sometimes I still struggle somewhat with what I’m trying to write or understand, but I’m still functional. I can answer questions fairly well although not as well as on a normal day.
On other days I’m not so lucky. The fog doesn’t clear and my epilepsy starts to kick in. My absence seizures (the small ones that are annoying to me but not always visible to anyone else) become more frequent. This means that my brain activity is getting more and more out of sync (misfiring), which can result in a grand mal seizure (the convulsive one on the floor). Sometimes I manage to skip this step and sometimes I don’t.
Having had chemo, some toxic chemicals could also play a little havoc with an already misfiring brain. If cleaning products can cause a bad-head day for me, surely something a little stronger could have lasting effects. The term chemo brain does not just refer to the time when someone is having chemo, the effects can last for much longer and, for some, may never totally go away. I had a friend who had chemo and had to rely on yellow post-it notes all over her wall as she tried to keep track of the things she used to be able to remember. She used to always send me birthday and anniversary cards, but eventually that all stopped. It was just too much for her to remember. I was a mere yellow sticky in a sea of other ones. Thinking about it now, I should have asked for my own unique colour.
Some of my symptoms are also symptoms of a stroke. I’m very aware of that because my dad had a major stroke when he was a year older than I am now. The Tamoxifen I’m on now to help reduce the chances that my cancer will return also has blood clots as a potential side effect. The thought that what I’m going through could be a sign of what’s to come is yet another fear that I have to put aside so I don’t dwell on it. I know I have to take precautions.
On the bright side, when my dad is trouble coming up with the right words and forming sentences, I am someone who can relate and understand the feelings associated with having thoughts and not being able to express them all the time. It’s a frustration I can completely understand.
While I don’t enjoy these bad-head days, it’s something I have to live with. I don’t let it hold me back. I do presentations and have speaking engagements. I don’t shy away from being in the public eye. I refuse to let a little thing like a lost mind get in my way. So far I’ve been lucky. The show has always gone on. While some people with epilepsy have more trouble controlling their seizures when they are under stress, it does not have an adverse effect on me. Part of it may be that I’m able to keep myself fairly calm by doing some deep breathing before I present.
People don’t always appreciate what someone is going through when it comes to the brain. If there is no visible sign that there is a problem then many believe that there is no problem.
Hang in there if you have bad-head days, regardless of the cause. Be kind to yourself. Don’t let any frustration you feel make you become your worst critic. You are not alone. There are others who are dealing with it too. Recognize your limitations, but don’t be afraid of going outside your comfort zone. You may be able to do more than you think.
Over 30-years of writing experience, about 10 years as a cancer survivor, and a lifetime purveyor of wit and laughter.
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