COMMUNICATING WITH A CHEMOBRAIN

As some of you may have read in my prior post, I'm undergoing a rather massive life change. This, however, is not about that. At least not directly. Actually, I believe it goes right back to the beginning. To the reason I launched this blog. To talk about the silliness of chemobrain.

Except, this is not going to be about silliness. It's going to be about the difficulties I experience when I'm communicating in real time and what happens when conversations become serious and important. To say that there has been lots of important communication in recent months barely scratches the surface. Plenty of people get very frustrated when they try to communicate with me because it has become too easy for me to meander into the weeds, and then, get stuck in those weeds. This becomes a bigger issue when the conversation demands I return to the original statement. Without being guided out of those proverbial weeds and reminded of that which has already flown out of my mind, this is a problem.

The quick primer. We have long term memories and short term memories. For me, long term memories seem to have taken less of a hit than my short term memories. Many of my long term memories seem to have become more vivid with time. Is this because my brain has more free space because I'm dropping other memories? No clue. I read the research. I know different parts of the brain have different functions so I can't state that the increased clarity in my very old memories is for any reason at all. No science, therefore, no speculation or suggestions. Just an observation.

Sometimes, I am able to recall in great deal an event that occurred in recent days or weeks. Sometimes, it's as if the event never even happened. Other times, it crystallizes and when that happens, fragments of the crystal may fall off the memory. Since the short term memories are frequently what builds on the day to day responsibilities, this can be a real problem. Perhaps this is best explained like this. I might have had a discussion with someone, promised I would have something done, wrote it down, buried the "to do" list with a bunch of other things and a snippet of that memory jolts back into my brain. What happens next is I turn all of my paperwork upside looking for the note to remember exactly what I was supposed to be doing.

Then, there is working memory. Working memory is what is happening in real time, right now. As I'm typing this post and trying to capture the thoughts in my head to put them down on paper. I journal ALOT. I don't want to lose important snippets of things. I write notes. Also, ALOT. I try to do this when I'm on a conference call or really, any type of call that is of importance, whether it involves the work I am doing or for a personal matter that must be brought to an acceptable resolution. If I am sitting in a meeting, and I wish to ask a question, I write notes and I frequently write out the question before ever lifting my hand to indicate that I'd like to ask something of the speaker.

I haven't read much of the most recent research, primarily because there isn't anything that I've seen that is going to change the circumstances for me in this moment. It's not that I don't care, because I care deeply. It's just that there are only so many hours in a day and when it's already taking eight hours to accomplish what should be done in under three hours, life can be a challenge. With that caveat, everything about chemobrain was pointing to working memory and those so called "work around solutions." Use your phone calendar for EVERYTHING. Keep To Do lists (not helpful, I currently have about six, four of which I can't locate). Keep your work area tidy (also not helpful if I'm forced to switch gears quickly, things pile on top of each other). Plenty of others, but since that's not the reason for this post, I'll leave that right there.

The absolute WORST thing that can happen when someone lives with this shitty condition is to badger them during a conversation. I know that people, even people who know the problem exists, can get very frustrated when trying to carry on a conversation. I know that, like mental illness, chemobrain is a disease of the brain in some form or another. In other words, even though others may have accepted this, or say they understand, there may be far too times, they truly don't understand. And honestly, I get it. There's no pill, there's no surgery, there's not even therapy interventions that have shown any promise. When you can't produce a medication, or show the surgical scar, or demand your therapy notes as proof, we may be dismissed as having "convenient" memory lapses, or even worse, of outright lying.

Instead of calmly saying, "Don't you recall saying this....." let me give anyone who is living with a person suffering with chemobrain a word of advice. Shouting, making accusations, demanding responses is not only unhelpful, on many levels it's cruel. We get the frustration you are feeling and trust me, our frustration is on the same plane as yours. I'm trying not to make this into a competition. In the spirit of understanding both persons are feeling the frustration, I don't want to say I'm in worse shape because I have a disability. I will say that I feel like I am at a terrible disadvantage when conversations are necessary for clarification and I'm not given the time to pause, truly understand that we are on the same page and then respond, AND HERE's the KEY... to the best of my ability and to the best of my recollection in that moment. Sometimes, it will be hours later and I will recall an important piece of information because of my journals or because I've had the time to sit quietly and reconstruct a series of events. By that time, it's too late to revisit the discussion.

I am not Mother Theresa or any other saint. I have made plenty of mistakes along the journey known as life. I do my best. I try. I give it my all, or I don't do it. If I'm not capable, I'll be the first to say thank you, but that's above my pay grade. I'm not all that, I don't proclaim to be all that. I'm just me. AnneMarie.

I'm also not a liar. I was raised with integrity and honor ingrained in every fiber of my being. I have embraced the philosophy of those who are guiding me through this present maze. Live authentically. Let the truth be the foundation upon which I stand. Be honest when loved ones ask me questions, no matter how much it may hurt to speak a truth about a wound from which blood is still flowing freely. But I do this. Every day, I do this.

And yet, I'm still badgered. I'm still presumed guilty until I can prove otherwise. I'm in quite a mess. And although I know the knee jerk response, especially from those who get it will be, "Ignore those people." There are some I can (and I do ignore) and there are some I can't. There are persons who mean far too much to me to write off.

When I must have those conversations, and I must share the truth, please, give me the chance to speak. Please allow me the moment to pause, and don't think it's because I'm angling for a way of responding to cast myself in the best possible light.

I'm simply trying to remain honest, to be true. Please. Be gentle with words, with tone and just be patient. No I am not the same. I'm living in a stressful situation and being badgered for answers to questions can drop me to my knees, bring me to tears, and create terrible distress.

If you happen to be close to someone who has the problems I live with, and you recognize yourself in any of these words, I implore you to try to understand the communication dynamic and to have a bit of empathy. No shouting. No demanding answers. No cutting the person off mid sentence. No patronizing. A simple, "Time out, that's not what we are talking about," will suffice. And, if the person feels there is other information that speaks directly to what is being discussed, give them a chance to say what's on their mind. When that takes them into those weeds, help guide them out.

I can't speak for all, but I can speak for many. Our actions are not deliberate. They are not to undermine. They are not to cause harm. They are not to frustrate.

Simply stated, in any given moment, it may be all we got.

And just because we do have days of complete clarity, know this. Those days are gifts because in this world, in my chemobrain world, they are far and few between.

Most days, I struggle for clarity. Presume I'm struggling. Don't back me into a corner because once there, whatever bandwidth I DID have for a productive conversation has since flown right out the window.

Not looking to upset anyone, but this is me, in 2017. My last round of chemotherapy, specifically CMF (the mild chemo), was exactly ten years ago. March 20, 2007. It definitely worsened over those first few years. Today, it's stable but there's been not one iota of improvement. Said another way, it seems this new way of life is permanent.


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