Wandering

Wandering

Anyone who has read this blog for a while (or let’s be honest, who has met me for ten minutes) knows that I’m a huge Lord of the Rings fan.

One of the most quoted lines from the books and movies is “Not all those who wander are lost.” But this week, as I return to my life after losing my beloved Nana, I can’t help but feel that I’m not just wandering. I am lost in some strange wilderness without her constant love and guidance, and no amount of happy memories or cherished keepsakes can fix the fact that she’s not here anymore.

Even though she never read the books or saw the movies, Nana was highly supportive of my passion for Lord of the Rings. She cared about everything I cared about, and after hearing about me saving up for a movie tour of New Zealand for over half my life, she was thrilled that I finally got to go.

I was completely unprepared to come home and find out that Nana had fallen while I was gone, and even though we thought she was okay, she quickly deteriorated in a series of highly upsetting events until I got The Call.

It was two in the morning after an entire day of her making the death rattle, after a day of knowing that she was doing that in Georgia and I was in Chicago crocheting everything I could get my hands on and going to Walgreens at 10 PM to make sure her locket would have a picture for the funeral. I was playing a brand-new video game, yet another distraction, when I got a simple text from my mom: “Can I call?”

I knew it was The Call, the one that would tell me that I lost my best friend, but I appreciated that Mom still remembered one of the many accommodations I used to help me process losing Nana in a way that worked with my brain chemistry.

Getting a text ahead of time meant that I never needed to worry about being startled when I got a phone call - I knew it wasn’t The Call and everything was okay, at least for the moment.

I wanted to be “in the know” about Nana’s medical condition day by day, but I made sure to let Mom know what sorts of things I needed not to know - the sorts of things my OCD has fixated on in the past that I didn’t want to risk getting triggered by again.

And although my regular therapist has been out of town since the day before Nana died, I reached out to a grief counselor in her practice who came up with some other ways to help me feel not quite so lost in my wandering.

The thing I was most worried about was that a loss of this magnitude would send me back to the nervous breakdown I had my junior year of college, the hardest and scariest time of my life that I have trouble even thinking about all these years later. But I still do think about it, and remember that it was caused by trauma, and it was surely traumatic to endure a loss like this and to have to watch even half of it with my own eyes…

The grief counselor told me that the best way to avoid a reaction like I had junior year was to not be in denial about what was happening. That’s what got me in trouble junior year, so this time, I had to face things. After my first session with her literally in the cemetery, I participated in the funeral, even the activities I found upsetting.

I managed to look at the plain pine box that held my favorite person and dropped some rocks she found in Israel inside the hole. I read my eulogy three times - once at the funeral, and twice at the nights of shiva my family observed back in Georgia. I went through her apartment and took back some of my favorite things from our time together.

And still, I’m scared because it somehow doesn’t feel real.

I think I know why.

My brain protected me from remembering most of the day I watched her have her own nervous breakdown combined with a seizure that was the first signal anything was wrong. But I do still remember bits and pieces of it. I was sitting at the front right seat of her kitchen table, the one that’s been donated to a furniture bank now, playing Pokemon Go because I knew there was nothing I could do to help her and all I could do was trust something familiar when I was scared.

I was never scared of Nana before, but I am lost because I had to watch her fall apart before my eyes. She was my rock, and watching her crumble was a kind of pain I never knew before.

I’m lost because for the only time in my life, I had to fake a smile for her. I made myself do it when I saw her for the last time because I knew my two options were to fake a smile or cry forever. She remembered enough at the time to recall my overly happy smile from New Zealand, when I was wandering in a far more pleasant place. She asked me if I still smiled like that, and I didn’t have the heart to lie.

I’m lost because my mailbox is empty and so are my arms. I’m never going to hug her again, because she is in a plain pine box in the ground under dirt that my fastidious Nana would never let touch her in life.

I’m lost because I have some of her things - the pot we cooked pasta in, her beloved work apron and nametag, our memory box, some jewelry - but none of those things are her.

I’m lost because people are talking about her in the past tense, like she’s not here anymore, and even though I know it’s grammatically true, I can’t read cooked or thought or was without wanting to run away.

I’m lost because on the flight home from shiva, I watched the first half of Fellowship of the Ring and half-heartedly pointed at the places I had just visited when the world felt right. All I could think was that I called Nana from halfway around the planet at those very places and she was there with her cheery voice full of love, excited to hear what I was up to even if she didn’t understand it at all.

In the last whirlwind of a week, I’ve been thinking about all these things and so many more as I try to find my way in a world where the person with the biggest heart I’ve ever seen no longer has a heart that beats.

I’ve been told that love can be a map out of this strange place, but right now, I feel like the character in my new video game, lost in dark depths, searching for little lights that make the wandering more bearable. One day, I know those lights will connect to make a string that will guide me to a better place, but for now, it’s enough work just to stay afloat.

I’m reading grief books, journaling, and doing everything the grief counselor says. I’m going for walks in the sunshine and connecting with my remaining family and watching the world for signs that somewhere out there, Nana is thinking of me and wants me to feel her love.

And most of all, I’m trying to accept the wandering. To accept the fact that I don’t have my shit together nor will I in the near future, and that’s okay. To accept the fact that I am lost because I was so dearly loved by someone so wonderful that the world feels empty without her no matter how many people crammed into my house for shiva. To accept that my writing, which she loved so much, isn’t beautiful right now, and I don’t know when it will be.

But it’s here, and so am I - and no matter how long I find myself wandering, I am going to keep going, for Nana’s sake.

Michelle Cohen, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

Predictability in Chaos

Predictability in Chaos

As the long days of my grandma being in hospice drag on, I have turned to a variety of coping mechanisms to keep afloat.

This experience has been a test of the coping mechanisms that have always worked for me, and as things continue, I am faced with the problem of needing continuous solutions to feel okay.

Even my favorite coping mechanism, rewatching the Lord of the Rings trilogy, hasn’t really appealed to me. I like the idea that I know how the movies go and good will always prevail over evil no matter how many times I watch it (spoiler alert!). But at this point, I’m too full of nervous energy to sit still and watch such long movies - not to mention that it would feel strange to watch them here so soon after seeing all the places for real in New Zealand. (It would also remind me that, when I was in New Zealand, I called Nana multiple times and she was perfectly fine every time - which only reinforces how strange it feels to watch this sudden, steep decline.)

I needed something entirely new, and for that, I turned to a product I’d seen in many Facebook ads before. I had never crocheted before, but I found a kit from a place called The Woobles that looked idiot-proof with video walkthroughs that suit my current need to always have some kind of noise around, even if that means keeping random YouTube videos on when I’m playing video games where I don’t like the sound (this way, I don’t give room for my particularly noisy thoughts to surface).

And so, when I started keeping a list of my coping mechanisms in my anticipatory grief journal, I included “try to crochet a tiny dinosaur.”

The pattern for Fred the dinosaur looked intimidating at first, but I have to admit, it was a nice distraction to use my brainpower for something other than pre-writing Nana’s eulogy and obituary (which put me out of commission for hours). I started with the very beginning videos, learning how to hold a hook and yarn, and eventually cobbled together a green dinosaur with yellow spikes and yellow stripes on his belly.

Once I saw that I had successfully created this dinosaur, I was - for lack of a better word - hooked. Crocheting meant keeping my hands busy, concentrating on something hard enough to keep me distracted but not complicated enough to discourage me, and a way to turn this confusing jumble of feelings into an art project that somehow managed to look good.

Best of all, crocheting is something I can do whenever I feel the need to. When I’m upset, I can rush through smaller projects so I can feel like I’ve accomplished something, and when I have more patience and concentration, I can try larger or more complicated projects. I feel like I’m doing something good with all this excess energy as I watch the little plushies accumulate in my apartment, and I also have an easier time reaching out to my friends, as I enjoy showing off what I’ve made and have found it hard to start conversations with people in light of everything going on.

This week, I packed for Nana’s funeral, which will be out of state, and I didn’t think I’d have the wherewithal to put things together afterwards. I wrote everything that needed to be written, no matter how much it hurt, and all that’s left for me to do is wait for the inevitable.

Even in the chaos of not knowing what will happen from one day to the next - or even one hour to the next - it has helped me so much to have some predictability through crocheting. I don’t have to make a decision about what to do; the pattern has done that for me already. And I know that if I do fourteen stitches in this row and eighteen in the next, I will wind up with a cute little animal that at least somewhat looks like the picture on the packaging.

I even have to admit that there’s some comfort to be found in counting the rows over and over to make sure they’re right, or doing other behaviors that may seem obsessive. But it’s always been a strategy of mine to channel my OCD into positive things even during my darkest times, so crocheting is giving me an outlet for that as well.

It’s not a fix for the overall situation, but honestly, nothing really can be. I’ve had friends try to help but acknowledge that the only way to fix this would be to turn back time and make Nana healthy again, but since that’s not really a possibility, I have to find solutions that help me feel grounded when the world feels shaky. And right now, that looks like crocheting a tiny army of fantasy animals that can make me smile, even if only for a little while.

Michelle Cohen, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

The Camp Question

The Camp Question

After being part of various Jewish communities my entire life, there is one question I always dread: “What summer camp did you go to?”

It’s a common assumption that everyone who grew up Jewish in the US went to overnight Jewish summer camp. But for a variety of reasons--money, family situation, physical or mental health, and more--some people don’t go.

I loved my experience at Emagination, a day camp held at Mercer University in Georgia that focused on coding, computers, and video games. It was far from my house, but my parents drove me every day because I was unable to stay overnight due to my mental health. Because of my OCD, I couldn’t eat food there either--but because the camp wasn’t Jewish and therefore wasn’t kosher, I was allowed to bring my own food.

Whenever people ask me about camp, this isn’t the answer they want. I have heard more times than I can count about how everyone has this wonderful, life-changing experience at Jewish camp that can’t be replicated elsewhere, so nothing else counts as a good answer to the question.

I understand that for many people, this experience happens and is something wonderful to remember for the rest of their lives--but for some people, it’s not possible, and even as an adult, I am regularly reminded of the fact that my experience is different and therefore wrong.

I’ve never seen this handled kindly until a few days ago, when I was at a local Jewish event with a friend. There were many teens there, and the inevitable questions started with school and quickly progressed to camp. Some kids had answers immediately, and I could tell from the shine in their eyes that camp is their happy place.

But there was one boy who didn’t have that answer. He looked awkward and uncomfortable all of a sudden as he said that he doesn’t go to camp.

I zoned in on that conversation immediately. I was so curious to hear how people would treat this; I was expecting something like “I’m sorry you missed out” or a quick exit to the conversation.

And then, I heard it--the kindest response to “I don’t go to camp” that I’ve ever heard.

My friend immediately said that was totally fine, something I’ve never heard even at Jewish events for adults where icebreaker questions always ask about camp. She said that not everyone goes to camp, and not everyone has to do things right away. She said that if he changed his mind, he could become a counselor later on, but that’s also not necessary.

I was honestly thrilled to hear this response. I have never heard anyone accept the answer without trying to convince the kid to go to camp if they are still of an age where they can, express regret that they’re missing out on part of the essential Jewish experience, or launch into reasons why camp made their life the way it is and the kid isn’t going to get that.

I noticed a visible change in this young boy after he was given this response. He didn’t look quite so retreated into himself; his body language seemed calmer. It’s almost as if he was given permission to be different in a way where it feels like everyone has to be the same.

I don’t know why this boy doesn’t go to camp, but I do know he was at a Jewish event with his family. He was still making friends and connecting to the Jewish community in a way that he could do, and not missing out on the entire Jewish experience simply because one part of it looks different. And even without going to Jewish overnight camp, I’m sure there’s something in his life that brings a shine to his eyes.

Some people get that shine in their eyes from a day camp where they’re the only Jew and the only girl but far from the only one interested in their favorite hobbies.

Some people find that shine later in life, like at conventions or on my lifelong dream trip to New Zealand--both of which I could describe with all the same powerful adjectives as people who went to Jewish overnight camp.

And I know plenty of people who have found that shine at camp--but assuming that’s the only way to find true happiness and Jewish connection can be so alienating to those of us who couldn’t for whatever reason.

Whether or not camp was your way to find community, please keep in mind that it’s not the only way. Offering acceptance and kindness can go such a long way in feeling like you belong in the Jewish world and beyond.

Michelle Cohen, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

Poetry for Life!

Poetry for Life!

Howdy everyone! I am one of those lucky people who makes a living doing what they love. In fact, I have written a book called, “How to Make a Living as a Poet.” The joke I tell, is that they keep the book, in the fiction section of the bookstore. 

The book is real though, found under mysteries; it’s a bona fide “who done it!”

My passion is poetry. My main work is performing and creating poetry with people living with dementia. The place where my work and the work of No Shame On U intersects is we both are trying to reduce stigma.  My work entails changing the story of navigating dementia to include moments of joy, laughter and creativity.

In 1997 I first used poetry with people living with dementia.  I was able to return 15 years later to reconnect with them.  Check out the 3 minute CBS news report.

https://www.youtube.com/watch?v=dBHXcww9gWE&t=1s

Since starting the Alzheimer’s Poetry Project (APP), we have done programming in 34 states and 6 foreign countries.  That's a lot of people, places and poems.

How Can We Change the Stigma of Dementia?

On the one hand, no poetry or arts program will alter the course of the disease. Yet, we know that social isolation can be as deadly for us as smoking. When a person receives a dementia diagnosis, because people are afraid of the disease, or don’t know what to say to their friend or family member, or are embarrassed, the social circle begins to shrink. We can use the arts as a communication tool and way to bring people together. 

A few ways to use the arts to help change the story. 

• Hold a person’s hand and recite a poem with them. Say a line and have them repeat it so you perform it together. Shift between funny and poignant poems. Have fun!

• Sing or dance with them. Sing their favorite songs! Polka around the kitchen. 

• Take a walk and notice the colors all around you.  Ask them about their favorite color. 

Yes- Stop and smell the roses!

Here is a 1-minute video that shows a group of people with dementia and their care partners playing “Pass the Smile,” an improvisation game. Watch for the lovely moment at the end. 

This is so fun to do with family or friends. You can change it up and do any emotion. People like doing mock anger, shaking their fists and scowling, or emoting surprise, gasping and looking shocked. Be playful! 

https://youtu.be/2XTBgqoCOyY 

These techniques are called “Participatory Arts,” which is a fancy way of saying you perform and create together. We have found that by using this technique, engagement levels go way up!

I go into much more detail, in my book Dementia Arts: Celebrating Creativity in Elder Care, Health Professionals Press, 2014. In the book, all the lessons are the form of recipes. As with recipes, you are meant to make them your own, add your own spice, flair and touch. 

When I submitted the photos for the book, by my friend, the German photographer, Michael Hagedorn, the publisher said, “These photos are so great, we have to do the book in color.”

Michael took the photo that is part of this blog post.  I worked with Evadene for years and always said to her, “Evadene, Evadene, prettiest smile I've ever seen.” This would crack her up and make her smile even more. 

Email me at garyglaznerpoet@gmail.com, and I will be happy to send you the poetry chapter from Dementia Arts at no cost. 

Poetry operators are, as they say, “Standing by.” More info on my book and the APP can be found at:

https://www.alzpoetry.com/

Thanks so much for having me as a guest blogger! Please allow me to end with my poem: 

We Are Forget

We are the words we have forgotten.

We are shifting and pacing.

We wrote this poem.

It’s a pretty poem.

Can you bake a cherry pie?

Never more, never more.

We have no horizon.

We don’t recall washing or eating

or what you just said.

Ask me my name.

Ask me if I have children?

You’re a pretty lady.

You have beautiful eyes.

Wash me, put me to bed clean,

hold me as I fall asleep.

Give me a kiss, brush my hair.

You are my daughter?

Light washing over us moment, moment.

You’re a handsome man.

Our hand writing is beautiful

twists and loops of letters

we can’t remember our hands.

Our ears are wishful

we can’t remember our ears.

We can speak every language,

we can’t remember our mouths.

We are porous.

We are the past.

We are forget.

Guest Blogger: Gary Glazner - Founder and Executive Director at Alzheimer's Poetry Project

A Time For Journaling

A Time For Journaling

When I was a little girl, my room was full of journals. In a recent attempt to clean my bookshelf, I found journals dating back as far as six years old, written in nearly illegible handwriting but always making sure to include “Dinner was at home” for a reason I honestly can’t remember.

As I got older, journals became less important to me. I was writing stories in fantasy worlds; it wasn’t as important to keep track of what I was doing in the real world. Even after I got into blogging, I never really considered it the same as journaling - a blog post is a story meant for an audience, whereas a journal entry is meant to be just for the person writing it.

When I was young, and I didn’t quite know how to verbalize some of the things going on in my head, I used to show my journal to my psychiatrist, but it always felt strange. I was always careful to mark the correct page and only show her the smallest amount of text she needed to understand the situation. And now, when I blog, I curate which information I feel comfortable sharing and don’t share a word beyond what I am comfortable with.

But lately, I wondered if this was enough. When I took a break from the blog to try to deal with Nana getting sick and starting hospice, I felt overwhelmed by a sudden rush of feelings that I needed to untangle, but I wasn’t ready to share these feelings with the world.

It was then that I remembered all the hours I spent journaling as a child, and the comfort it brought me. I’d heard of grief journals, but all the ones I saw before were for after losing someone and had prompts to write about the person’s last days, death, and funeral - things that have not happened yet.

It took me a while, but I eventually found a journal relating to a term that was new to me: “anticipatory grief.” It means exactly what it says - the grief of being in the process of losing someone who is still technically here - but it also means so much more. I ordered the journal to be an outlet for the overwhelming confusion of medical decisions and the sudden loss of a relationship Nana was no longer capable of having.

I wound up with a simple journal that started with writing about the person. That, I could do - and I wanted to, so much. But I never knew if my friends were getting sick of hearing about what was going on in my life, and I spoke a lot with my parents but also limited this since we were all so embroiled in the process of keeping Nana safe and figuring out her next steps.

The pages in the beginning of the journal I bought were guided with prompts about death that helped me realize I was lucky in at least some aspects. I had Nana as her full self in my life for thirty years, and she got to see everything from my birth to my recent trip to New Zealand. We didn’t need to forgive each other for anything, and we had no unresolved business - just a jagged end.

The middle pages just had a line for the date and one question: “How are you feeling today?” It seemed a little too loose for me to like at first, when everything was up in the air, but as soon as my pen hit the page, things started to make sense. I journaled in these pages until the complicated knot of emotions started to untangle, and I started to feel like things were more manageable.

And, unexpectedly, the prompts at the end of the journal weren’t about the end of her life. Instead, they were about everything else - the memories we shared, the good times we had, the things I wanted to remember about her as things got worse. The things that were so hard to think of at the moment, but could help so much in the future.

I don’t know if I’m ever going to return to regular journaling. But for now, a little structure to sort through these unfamiliar and overwhelming feelings has been a huge help, and I’ve extended it to other areas of my life as well: I’m writing in a planner book instead of just using my phone, jotting down daily goals and to-do lists, and writing anything else that feels relevant.

Like last week’s shopping trip, this is just something little that I can control. But the more I do to wrangle these feelings, the less powerless I feel at such a tumultuous time.

Michelle Cohen, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.