AEA Community Support Group

What motivates you in your work at the AE Alliance?

I am very moved by those who have suffered from this illness in all its varied forms, and those who have found the personal strength, support and good fortune to come through it.  I’ve had a lot of help along the way from professionals, friends and family.  In 2020 I asked my treating neurologist about a support group that might help me and he was unclear about what currently existed.  In my desperation it was clear to me that there was a need for patient to patient support during the various stages of illness, post treatment maintenance and recovery. I’d like to be of help to others who are in the early stages of dealing with this unexpected life turn, and learn from the more experienced about how to manage in the future.

Per my doctor’s recommendations I kept a journal for a few months which, when I read over it, depressed me. (It became an objectified record of my uncharacteristic behavior and the side effects that I was experiencing.)  I found another avenue for dealing with the ravages of LGI1 AI Encephalitis by writing haiku. The following eight haiku show my progression through my year of unraveling, and more importantly allowed me to come to terms with experiences that came to define each stage of my journey, and actually find some closure so that I could move on.

My Year of Unraveling
February - December, 2020
[Living with AI Encephalitis]

Me? Not who I was.
Out of sorts. I’m distorted.
Dazed. Distant. Withdrawn.

Fevered brain, scary.
Memories erased, bored out.
Doubt and fear.  Self worth?

Touchstones disappear.
Unhinged, I struggle for answers.
Fighting to see light.

What is my endgame?
Can’t shake the grip of despair.
Reaching skyward, in vain?

Must avoid collapse...
Desperate, I burden you.
How do We survive?


Meds coursing through me—
Dousing the fire... rays of hope?
Still, a solo trek.

Daily rituals and deeds.
The present is what I have.
Daybreaks and sunsets…

I can sustain hope.
The journey can lead to joy.
Yes, I have come through.