1. The Question
Why do you feel the need to make the rift in our family all about your mom’s disease? You know too well that’s not the case at all.
damn good question
thanks for asking
2. The Life Raft
for 35 years I experienced our family as 98% love
2% occasional mild grouchiness
nobody’s perfect, yet
you guys are to me
for the next 9 years, every day
I listened, watched, did battle
as ALZ hacked away at mom and dad
both
I learned to accept powerlessness against it
that everything we’ve tried to help, will ever try, is shit
window dressing
arranging knickknacks, dusting bookshelves on the Titanic
ALZ choked me, left me sobbing, sunk me, tried to drown me
burned me more times than I can count
it burned me bare
I’m burning still and here I am
the essential intact, still grateful
ALZ released the voice and the artist and the mother and the father in my sister and me
restored the mermaids
instead of drowning us it is releasing us from fear to become an entire ocean
returning more of our parents to us than we’ve ever known before
returning more of our planet to us than we could possibly have received before
as ocean, we can reimagine anything, even ALZ, as a Life Raft
as ocean, we’ve pushed away those who hurt us
we accept that we’ve pushed you away, we don’t blame you
as ocean, we’ve pulled toward us those who forgive and love us flaws and all
we accept that we’ve pulled some relatives closer, wrapping them around us
warm blankets and fuzzy socks on bitter nights
we accept your anger at abandonment as our own
So, livid cousin, devastated aunt, ghost uncles on whose behalf wicked-brave women speak to me
I am sorry for your pain and my part in it
I am sorry when you feel poetry as a cleaver in my hand or weight around your neck
I am sorry when you experience me as a basher of family
that is not my intent
and I honor what you feel
I’ll call myself a liar before I ever call you one
So why do I imagine ALZ as a Life Raft now? to hang on to you
while ALZ is taking mom and dad from me
as long as it holds its share of the blame for this extended family rift—holds my perspective too—
I don’t have to lose you.
I don’t have to lose you.
You.
You.
Maybe I have to lose you for a little while, while we heal the rifts within, but not forever.
Look again. At us. At what we’re saying. At who we are. Where we are.
You will always be within my we. This we…
We are not exiled. We are not silent. We are not helpless. We are not liars. We are not orphans. We are not bashers of family. We have not been cut in half. None of us. That’s our fear talking. Our fear. We are family.
We are poets and pilots.
We are parents and gardeners and farmers.
We are mermaids in matching pajamas.
We are the whole bloody ocean now.
When deeply wounded we can be cleavers.
We’re both more vulnerable and more powerful than ever.
Nobody’s perfect, yet
you guys are to me
3. Stupid Cleaver, You Missed Our Hearts Again
Alzheimer’s disease
you meat cleaver
you hacker of brain and bone
you forest fire turning memory and limbs to ash
you can’t get at these hearts
Alzheimer’s disease you tried to exile us:
I struggle to understand how any of this is the family’s fault.
(So do I. You are still my family. Hope I’m still yours.)
Alzheimer’s disease you tried to accuse us:
When you write about our family and how many walked away, you know that’s not true.
(I walked away. Several of us did. We had to heal. We were bleeding. This is true for us. You are still our family. Hope we’re still yours.)
Alzheimer’s disease you tried to orphan and silence us:
Writing about family that chose to distance themselves. No one chose that. Everyone is reading it and in awe of the bashing.
(I chose distance to repair and rebuild my broken heart. So did my sister. Are we no one to you now? How is it that you still hear us and we still hear you?)
Alzheimer’s disease you tried to hack us clean in half:
Your writing is warm and loving. Hang on tight to those Berg traits.
(I cannot be divided. I can’t divide myself. Not even when people I love ask me to. ALZ taught me that. So did my family.)
Alzheimer’s disease you hack out my eyes, blinding me, my ears, deafening me, but somehow you keep missing my heart entirely:
Had lawyers and judges not been introduced to our family none of this would have happened and you know it. My God you make us seem like heartless people who abandoned you and that hurts more than anything. Her siblings would give anything to see her again and you’ve chosen to blog about what a bunch of assholes we are. When it all really comes down to that fucking court case.
(Yes. For you it comes down to that. My heart expanded to hold your truth when I allowed it to fully break. Yet even on the days you rage at me for being me, your love is still there. My broken heart sees yours. I am the last human on earth who would ever call you heartless. So put that in your pipe and smoke it, ragey. I’m so sad for our pain and loss that sometimes I have to step away to mend. But not today. Today I welcome your pain and rage. I envelop it. I am pain and rage now. Pain is my guide. Rage is my bitch. So bring it. All of it. I will withstand your pain and your rage. I will hug you tighter for them when I next see you. I expect you’ll do the same. We are not made of such fragile stuff as we imagine, you and I.)
Alzheimer’s disease you turned me into a writer of sad and dreary form letters:
Dear [insert another family member who I love here], I’m disconnecting from you for a year. I hope we can reconnect again later on. I learned today that the poem I wrote yesterday devastated you. I am sorry about that, it wasn’t my intent. I am angry at a disease, and my own powerlessness in the face of it to stop it from destroying my parents. Rage is part of that. Rage is part of me now. This is me now. But blame isn’t. I’m not angry at you guys. I don’t hate you. I don’t blame my family. I love you. For my own health, and my sister’s, I need to write about our experience of Alzheimer’s disease. Disconnecting temporarily allows me to do that without inadvertently hurting you again. If you need me for anything urgent this year, you can reach me at ____________. I look forward to reconnecting again in the future. I love you. – Lori
Alzheimer’s disease, you fucking jerk
you made me the cleaver
there goes another of my precious limbs
4. Ocean
as your arms tire
day by day
release into me
drop cleavers in
sink blood-weary hands ever deeper
I have all the time in the world
I am ocean
we are mermaids
no leg to stand on among us
beyond words
beyond loss
beyond exile
beyond welcome
the essential
holds
our family
holds
us
those who cried this ocean with me
aren’t anchors
you are my life raft
my only way
home
