It was a warm autumn, which meant that even late into October, the trees still held on to most of their leaves. But the storm changed that. After the storm, whatever remaining leaves the trees had were gone. Climbing out onto my fourth-story fire escape, I could peer into the distance and see things that were not visible before—storms are like that sometimes, revealing the invisible. Looking south, I could just begin to make out the gray buildings of Boston’s skyline.

I felt for the trees that autumn and every autumn after. At the mild age of 30, I was losing pieces of myself faster than I could replace them. My childhood, my relationships, my hopes for the future, and at times even my sense of humor.

I did my best thinking on my fire escape. All my thoughts (good, bad, and ugly) would come and go like “passing clouds,” just as my therapist had suggested I observe them. Of course, I hadn’t seen her since I moved from Pennsylvania last June. She appeared to be my age, but with impressive calmness and wisdom. She listened and pondered and witnessed my journey, which in hindsight must have been an incredibly emotional experience for her. During our last session, she finally disclosed, “I have a parent with early-onset Alzheimer’s too.”

My mom was also losing pieces of herself faster than she could replace them. Her memory, her home, her language and emotions. She hademotions, but as time went on they seemed less and less grounded in reality. At times, she was expressionless and still, other times irritable, other times she was sad for all the injustice of the world. Sometimes she displayed this childlike sense of bliss and cheerfulness, skipping down the halls of her memory care facility. She was in a dream-like state. Observing her made me feel as if I was in a dream-like state. Some days I could help her try to put the pieces together; other days I was grateful she remembered my name.

“It’s me, mom.”
“Carolyn?”
“No, Ann Marie.”
“Oh, of course! Ann Marie! Hi honey, how are you? Carolyn… can you help me with this?”

Some people think Alzheimer’s is simply a disorder of forgetting. That if you merely remind the person of the relevant facts or details, then you can set things right. But the confusion extends far beyond this. Alzheimer’s (from what I have inferred from my mom’s perspective) is like trying to navigate through a new city. You get lost. At night. And then your headlights go out. Then you ask for directions, but someone answers in a foreign language. Then you find a map, but you lose your glasses. And suddenly “north” is a concept too difficult to understand.

You never find your way home.

She started declining when I was in graduate school. I remember sitting in lectures about the brain, about cognition and perception and the various “dementia processes.” My professor would recite the symptoms without inflection in an emotionless black-and-white tone, as I lived them in colors that were all too vivid.

Sometimes I wonder if I am jaded by my education. Some people talk about how a person with Alzheimer’s chooses to “let go” or “decide when it’s their time.” I wait patiently for this serendipitous moment, unsure if it will even come. All I keep thinking about is how my mom’s brain is shrinking, tiny neurons dying one at a time like fading stars in a dark night. She will never find her way home.

In Boston I am part of a support group with people who live their lives with amazing compassion and courage. I hear their stories about coming home to rotting food in the fridge, laundry that has stagnated in the washing machine, and wads of cash in odd places. Stories of feeling so alone and yet being too raw for human connection. These stories resonate with me.

Sometimes losing pieces of yourself can be beautiful. You can lose the pieces that no longer fit, that prevent you from growing, that weigh you down. We are not bound to a single moment in time; we can grow and let go. The trees do it so vividly every autumn. But we are not trees. When someone you love has Alzheimer’s, losing these pieces is never-ending and devastating. There is always something left to lose, something left to grieve.

From my fire escape the city is vibrant and my life is ostensibly normal. Since moving here, I have learned to embrace small joys in life. I have explored new restaurants with friends on a quest to find the best lobster roll in Massachusetts. I have returned to tap dance on Saturdays. I play the acoustic guitar. Since findings lights and a helmet, I have taken to riding my bicycle in the city streets, on bike lanes and “sharrows.” I drink coffee and paint.

When I walk through the Boston Public Garden, I am almost overcome by the sounds of children and street performers, by the sight of willow trees and swans near the water. I see old couples on park benches. Statues and fountains and roses. And there is me… a cliché with skinny jeans and blond highlights and a Starbucks latte. But the city is alive, and I am a cog in its beautifully poetic machine. It is quite the contrast to a sleepy memory care unit with quiet bingo and “easy listening” hits on repeat. I wish she was here. She should be here.

We should be shopping on Newbury Street and swimming in Walden Pond and sharing cannoli at Mike’s Pastry. Instead, I learn about which grocery store isle has the Depend Underwear and ponder whether it will matter if I visit her on Thanksgiving Day or the day before. Sometimes I write her letters she will never read. Sometimes I read old letters from her and realize that there was so. much. love. There cannot be grief of this magnitude without it.

Looking out from my fire escape, I try to find it: the reason why all this had to happen. It is so hard to look at the trees during winter and imagine the bright spring colors growing within them. But they are there. Through immense loss, we are also able to choose which pieces we keep. When there is nothing else left, I choose to hold on to love. After the storm, after we lose all the pieces of ourselves we are meant to lose, there is still love underneath snow and brittle bark.

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“Take some time before you go
Think of Monday’s coming down
And the people that you knew
The ones that aren’t around
You’ve been fading day to day
I’ve been moving town to town

If I could give all my love to you
I could justify myself
But I’m just not coming through
You’re a pill to ease the pain
Of all the stupid things I do
I’m an anchor on the line
Of the clock that tells the time
That is running out on you.” -CC

the transition at work took more out of me than i had hoped. i knew it would be tough… i didn’t know how tough. my frustration tolerance has worn thin. fighting on a lot of fronts… some minor inconveniences that send me up the wall (e.g., we have no pens at work?!) and some are more worthwhile battles (e.g., mental and physical health, relationships, etc.).

now that i am forced to tolerate certain emotions… i’ve realized what a big part of my mental energy is spent on worry. it makes me un-fun and lame. new goals will involve infusing that joy back into life.

things to look forward to:

  • surprise bday parties
  • standup comedy to support the Alz association
  • Darlingside in concert
  • having my car back
  • trips to nj/pa
  • time spent with adam
  • dinners with carmen
  • SPRING (soon please, soon)

 

Oh hey 2018…

Things to be grateful for:

  • Seeing Guster live with Naticia
  • Weekend sleepovers
  • Seeing WALK THE MOON live
  • Power Barre (as much as I hate it/fail at it)
  • Tap classssss
  • Crepes at Mr. Crepe
  • Brunch with a support group friend who has morphed into a friend-friend
  • Setting limits with people
  • Being vulnerable (eep!)
  • Reading The Boy in the Striped Pajamas (and having my world shaken)
  • Heart-to-hearts with Carmen
  • Calling my mom
  • Staying warm
  • Carmenere from Chile (2013)
  • Making Pasta al Pomodoro
  • Promising work prospects
  • Upcoming open mics (???)
  • Tiger cat
  • The capacity to still feel gratitude in this cold and broken world

“I would still like you the same… even if you were acting like a crazy person.”

#thatblewmeaway

 

6am. 7 degrees outside. Heat broken. Seems like a fitting end to 2017.

It is most certainly time to send off 2017.

The year started in Bucks County, with an argument, a lot of drinking, and a bruised knee. I tried to tell myself it wasn’t an omen for what was to come.

I took a job at a local school district in hopes of moving forward with my life in Pennsylvania… staying near family, cultivating friendships, and ultimately, saving a romantic relationship. Two weeks after I took the job (and canceled any plans for Boston), he broke up with me.

I’ve said this before, but I never expected Hatboro-Horsham School District to save me. I’ve been through three jobs this year, with a possible fourth on the horizon. That one was by far the most transformational. It put me back on my feet. When I think about all the mistakes I’ve made, surely canceling my plans for Boston was a big one, but when I think about my job at HHSD, there is something that has been redeemed.

In the midst of all this, I saw a friend whom I hadn’t seen in a long time. I wish it had been under better circumstances; I wish we hadn’t been grieving so deeply. When her heart aches, mine aches too. We have mirror neurons but I believe we have mirror soul-stuff too.

Through the redemption that good friends and a good job offered, I was able to reassemble my life and my plans for the future… I saved money, planned my escape from Bucks Co, and acquired a job in Lexington, MA. I left PA in the middle of the night, with a heavy car and heavy heart. Boston or bust.

And the first half of 2017 was over.

Somerville was a lovely reprieve… I spent a lot of time on my fire escape, watching the sun set and convincing myself that it wasn’t a dream. I began playing guitar and painting again. I worked at my new private practice with passion and grit. Set better limits and ended toxic patterns. I acquired a helmet and rode my bike to Spy Pond. I went on dates. I laid in lakes and walked downtown on weekends.

It was so lovely that I never went back to NJ/PA until Thanksgiving. And to my surprise, I was overwhelmed with gratitude and love. Shortly after Thanksgiving, I read some old emails between my mom and I. She loved me SO much. And I was finally able to let go of all the hurt and anger. I remembered my best friend… I hadn’t seen her in so long.

On the job front, there was more uncertainty… brothel-gate and the prospect of losing what felt like everything. Be absorbed or bust. I cannot believe how bitter and warped some people can be… I cannot understand how someone drops a bomb in their lives like that. The effects continue to ripple outward… to family, practitioners, interns, schools, neighboring practices… It seems like it will ripple forever. There are some things that only God can forgive.

I cannot describe the wave of depression that hit me after I realized that once again I might have to re-evaluate (and re-organize) my career. I am so tired of rallying. To the friends that stood by me, I am infinitely grateful.

Christmastime, a promising relationship and more gratitude. More love. In addition to seeing family, I got to see some of my favorite people… Laura, Justin, Carmen, and Dean. My heart is full even if it is broken and hurting.

It is most certainly time to send off 2017. And welcome in 2018.

“Well I’ve been out walking
I don’t do that much talking these days
These days
These days I seem to think a lot about the things that I forgot to do
And all the times I had the chance to

And I had a lover
It’s so hard to risk another these days
These days
Now if I seem to be afraid to live the life that I have made in song
Well it’s just that I’ve been losing for so long

Well I’ll keep on moving
Things are bound to be improving these days
One of these days
These days I’ll sit on cornerstones
And count the time in quarter tones to ten my friend
Don’t confront me with my failures; I have not forgotten them”

“A great big bang and dinosaurs
Fiery raining meteors
It all ends unfortunately

But you’re gonna live forever in me
I’ll guarantee, just wait and see

Parts of me were made by you
And planets keep their distance too
The moon’s got a grip on the sea

And you’re gonna live forever in me
I guarantee, it’s your destiny

Life is full of sweet mistakes
And love’s an honest one to make
Time leaves no fruit on the tree

But you’re gonna live forever in me
I guarantee, it’s just meant to be.” -JM