Repeat Offenders

Five and a half years ago my friend Pat learned she had early-stage dementia. She wrote the following email to alert a few friends. I was so impressed I wrote about Pat and her journey https://lucymoore.com/pats-journey/

“I will have a story to tell, it’s about dementia; I’m tiptoeing into its acquaintance with some shivers and some giggles. It seems a good idea to let my friends know so you can be irritated, patient, amused, puzzled, frustrated, or just plain aware of what’s happening to my more than 80 year-old brain-psyche. I’ve found that funny things do happen quite a lot, and there’s a good aura about my beginning journey into the never never. Anyway, that’s the prologue on this side of the fence. I intend to be friendly no matter what.”  

Since then, the friends – now known as Team Pat – have traveled with her into the “never never,” helping with tasks, being there for her in stressful times. She is still “friendly” as she promised, and she is still very much herself, a person we all adore. She is still in her house, still folding paper cranes and decorating nature with them, still sitting on her front porch enjoying the comings and goings in her neighborhood. On my visits, we talk about our pasts, our current complaints, local happenings, and we laugh a lot.

After a few minutes, Pat asks “How’s Roberto doing? Good I hope!” My husband is an old friend of hers and drives Pat to dental appointments. They are very fond of each other and manage to make her trips to the dentist into adventures.

I respond, “He’s doing great! Going to the gym regularly which is really good for him.”

“Really? That’s wonderful. I’m so glad!” And we slip into a conversation about exercise and how much we both hate it, and comical yoga moves we’ve invented, and the benefits of walking. A few minutes later, Pat asks, “And how’s Roberto doing? Is he OK?”  I have learned, for my sake as well as hers, to vary my answers.

“He’s good!” I tell her about our Japanese lessons and how much he loves learning to write Kanji, the Chinese characters adopted by the Japanese centuries ago. And we’re off, talking about our love of Japan, and we end up folding a few paper cranes….in silence, until…

“How’s Roberto. What’s he up to?”

“Well, actually, he’s kind of anxious about his brother who’s having a really hard time. It’s a concussion and he lives alone, and….”

“Oh, no! Tell him I’m so sorry. That’s gotta be hard to deal with. His brother…wow.”

I thank her and promise to pass on her message. We talk about both of us being only children and that there are advantages sometimes, and how we’re not spoiled (contrary to popular belief), well maybe a little, and we laugh about how we always expect to get our own way.

A few minutes go by. “So how is Roberto? I hope he’s just great!”

(more…)
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Last Night I Sat on My Cat

Benny

It had been a hard day and the comfy TV-watching chair awaited. As I came in for a landing, the usually smooth touchdown erupted in a writhing yowl. I leapt up and Benny fled for safety. He is a solid black cat, not even one white whisker. For those of us with Macular Degeneration (AMD) dark things have a way of disappearing, losing their form and features, sometimes swallowed by a black hole.  A friend’s mother, who has AMD, feared her daughter would face the same diagnosis. “Just promise me,” she warned, “never get a pet that is the same color as your floor.”  I understand and am grateful for our beige carpet and red tile. I can see Benny – or is it my black backpack? – anyway I see that there is a black featureless object in my path and can avoid it.

It has been an adventure these past few months as I adjust to the sudden onset of AMD in one eye. The physical challenge is obvious. Vision in the affected eye is compromised; there is the loss of some depth perception, sensitivity to light, the swallowing of dark objects. Lines of type tend to wobble slightly. The good news is that I am still able to do everything I want, just with a little more effort and a greater degree of caution. I am at my desktop, behind the wheel (in the daytime), on the walking trail outside the house, meeting friends for lunch, even facilitating now and then. I know that time is probably limited for some of those things, but this is an exercise in uncertainty, a challenge to live in the present. My blog “The Future You,” https://lucymoore.com/the-future-you/ offered the reassurance that whatever challenges lie ahead will be handled by a “future you,” and that the “present you” needs only to deal with the present. Worrying “what will I do if….when….?” Is not the job of the present me. She needs to be sharp, take care of the business of today, be responsible about doctor appointments, avoid smoke, protect eyes from the sun, and be a big girl when it’s time for the monthly injection in the eyeball, which is not as awful as it sounds.

The work of this adjustment is as much mental as it is physical. I have great admiration for my brain as it works to interpret the new, scrambled messages from the eyes. Just think, for many, many decades they have been a well-oiled machine. Message from eyes to brain: cat curled up on chair. Message from brain to body: do not sit on a cat. Yowling catastrophe avoided. Now the message from eyes is “all clear, take a seat.” The brain believes it and I sit. But daily I can feel the brain struggling to re-interpret these unreliable messages.

“The eyes tell me there’s a black blob on the floor,” says the brain to Lucy. “But we can do better than that! It’s probably Benny the cat or your backpack. Unlikely it’s a heap of coal or a pool of black lava” Or, as the fluid in my eye shifted one day and produced a distinct warp in the adobe wall outside the window, my brain was on the job. “Don’t fall for it, Lucy. The eye is tricking us again. The adobe wall is still straight. Not to worry.”

If you are still with me on this rather fantastical trip, this will amaze you. My current good eye, unaffected by MD to date, has for years been the “bad eye.” It has a “wrinkle” of the macula, meaning that when I looked out of that eye there was no such thing as a straight line. It was as if Salvador Dali did a very light paint job over everything I saw. It didn’t bother me because my brain quickly learned not to take seriously the wavy messages from that eye, and to rely on the “good eye.” But now, that once good eye is the one that has gone rogue and is urging me to sit on my cat. The eye we relied on for the truth has betrayed us. So what is the brain to do?

Quite logically, my brain has turned to the eye with the wrinkle, the Dali eye, and said, “Buckle up, my friend! Your partner over there has gone off the deep end, sucking black cats into black holes, warping the adobe wall. You are now in charge of vision on this aircraft!”

Of course, I’m only dimly aware of this change in the cockpit. I look out of both eyes and take my brain’s readout for what I see and carry on.  Every once in a while I cover one eye to see what each is seeing today. And early on in this journey I noticed that the Dali effect was fading. The door jamb, the edge of a picture frame, the window sill were less wavy than before. The brain was interpreting the message from the eye with the wrinkle, making corrections, straightening out those curves to keep this aircraft aloft.

Now I know it is impossible to undo the wrinkle without elaborate surgery. The warp in the vision is still there. My eye is still delivering that warped message…. But the brain, my beautiful brain, is smoothing out my flight, telling me that those lines are nearly straight. How can this be? It is a mystery and I’m grateful. And I’m sure there will be more mysteries ahead as my brain and I travel this uncharted territory.

Look at center dot with one eye. If it looks like this, relax.
If you see this, call your eye doctor

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