March

March is the most unpredictable month of the year in the Midwest. I write this as a blizzard of snow, sleet, thunder and lightning sweeps across our region. This comes days after our third false start to spring. The birds are confused and plants are stopped half-way through sprouting.

I can identify with this sort of confusion, as I’m sure many of my readers can too. The unpredictability and inconsistency of neurodegenerative disease is one of the most frustrating aspects for me. Just when I think I have adjusted and can manage a new symptom, something changes.

I often hear people talking about acceptance, as if it is a hard-won goal that once obtained can sustain you for the rest of your life. What I am learning is an ebb and flow of patience, humor, acceptance, and frustration which seems to occur as circumstances and my brain circuitry shifts.

My most recent challenge has been a new level of depletion. It is difficult to describe to someone who hasn’t experienced it. I could call it a “bad day” or say I feel “off,” unable to concentrate, but none of these quite matches the severity and despair I can feel when this happens. I wrote the following poem to try and describe it as best I can.

My mind is tired today,

Weary.

Not from lack of sleep,

My eyes are wide awake.

I struggle to think,

Mundane, simple thoughts

Scatter and drift away.

Why did I come into this room,

What was that word….?

I can’t seem to get off this couch -

What was I going to do next?

Startling, occasional “Oh No Moments” replaced by

A soft cover of peach fuzz on my brain,

Immobilizing my good intentions.

I’ve now given this particular state of being a nickname so I can let others know when my brain function is on a partial shutdown. It is a sweet and endearing name, Amy. I want to remember to act with compassion and curiosity when Amy comes to visit.

When Amy comes around, I need to take more breaks, decrease my expectations and set aside time to just be. This isn’t always convenient as I often had other plans for the day. But I know what Amy wants. Rest. Patience. Kindness.

So, I do my best to give up my ambitions and sense of achieving to allow Amy the time she needs.

Amy is an abbreviation for the amyloid proteins that are accumulating in my brain, which clumps up around the neurons and effects my brain’s ability to work well. So, I am befriending Amy, as best I can, so that I can enjoy my life to the fullest, in spite of, or perhaps even because of, the changes happening in my brain. I hope you can join me in greeting Amy with a little patience and kindness when she comes to visit you as well.