I listened to The Daily this morning and thought that I would share what I heard and how I responded.
The episode is about a new treatment for Alzheimer’s that may or may not affect the disease. A couple is interviewed about their experience with the disease and treatment and I was struck by how Debbie described her early onset Alzheimers. The symptoms were too familiar to me.
Before I continue, I want to be clear that I am not comparing Alzheimer’s and brain tumors. 1) I am in no position to do so and 2) I don’t know why a person would undertake such a horrible exercise.
I do want to say two things.
1) Many people have dingdangbrains. Mine is a brain tumor, but there are many injuries and diseases that can impact brains similarly. A few examples: my occupational therapists worked with many people recovering from strokes, my mom has reaped information from families with children who suffer seizure disorders, a family friend directs a nonprofit organization that works with individuals who have had traumatic brain injuries - this friend was a godsend when I had brain surgery, explaining the healing process and what to expect.
2) I love Debbie’s voice, laugh, and descriptions of first noticing memory problems. I hate that she is suffering and that her disease is degenerative. Thinking of Debbie and her wife Susan makes my heart ache. Her observations resonated with me deeply and I hope you appreciate why I am posting about her.
Listen to the podcast if you want. Susan and Debbie’s story is picked up throughout the episode, but the descriptions of symptoms that I really related to are from about 4 minutes in to 8 minutes in.
Debbie tries to recall her favorite movie, but can’t recall the name. She is so smart, so with it, she deftly paints a beautiful picture in the negative space. She talks around the movie title, leaving a trail of clues for her wife to follow and pick up.
All of us have searched for words before. It’s the reason why “it’s on the tip of my tongue!” or “I lost my train of thought” are active and common expressions.
But since brain surgery, I feel these losses much more frequently. My thoughts will be interrupted by sudden, expansive blanks. Or, like Debbie, I can talk around an idea but can't pin it down. Fatigue makes it worse for me. Fatigue makes everything worse. I might not even feel tired (yet) but I know my chariot is turning into a pumpkin when I open my mouth and feel my language slip.
Debbie describes feeding the dog too many times. I have not done something like this because I have been so close. I have built many fail-safes into my routines so I don’t make mistakes like this. There have been innumerable times when I have asked myself “did I take my Keppra? Or is that memory from yesterday?” I feed the beasts at the same time I take my medicine at the same time I have coffee. If I didn’t do one, I didn’t do the others. The dog will tell me if I don't feed him, I will crave the coffee, and my pills are in a pill container with the days of the week printed on it. I wrap my day into these complicated systems because I am fearful that I might forget something important or do it but not create a memory of it.
Debbie describes her notes.
I have lists everywhere yet they are not especially helpful. I find myself writing lists, many with one or two things on them, most of them in a pile on a table. A few times a year I get frustrated, compile them, write a few master lists based on what I’ve read, and throw most away.
Debbie describes trying to grasp something that is RIGHT THERE, but eludes her when she reaches for it.
Ow. That hits so hard. Her awareness of her losses takes my breath away.
The thing that saves me when my memory lapses make me feel unmoored is the knowledge that after I get a good night of sleep, after the storm passes, once my hormones shift, or the pollen count subsides, I will feel much better. Not back to my pre-surgery self, but back to a place I feel comfortable, anchored, connected.
Debbie doesn't have that reassurance. It must be so scary.
I wish Debbie and Susan the best. I hope Debbie’s condition plateaus so she can set up some fail safes, drop breadcrumbs for Susan to follow, and continue laughing.