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.

The Cheez-It Phase

The Cheez-It Phase

You may have noticed that I haven’t written a blog post in about a month. Usually, I don’t take long breaks like this, but thanks to an unexpected family tragedy, I haven’t quite known what to do.

I’ve written about Nana, my beloved grandmother, on this page before. She’s read every blog post, and more than that, she’s supported me through literally everything in my life. And a month ago, she was completely fine.

But then, she had a nervous breakdown. Even after my own breakdown nine years ago, I had no idea how devastating one could be, and I watched her descend further until she required hospitalization from multiple falls. Something broke in her brain, and although we don’t have a completely secure diagnosis, we know a few things: Nana has rapid onset dementia, has lost her ability to take care of herself, and is in hospice, which means she has six months to live at the most.

I know I’m lucky that it’s taken me this long in my life to experience grief like this, but it feels overwhelming nonetheless, and as soon as I got back to Chicago, I was unsure of what to do. I started researching the phases of grief, but nothing made sense. I’m certainly nowhere near acceptance, don’t think I can bargain with anyone about this, and the initial anger has faded to a weird sense of feeling out of control.

I know there is nothing I can do. Her care is already figured out, and nothing I say or do can fix her head or return her to the wonderful person she was just one short month ago. I needed to leave her, go back to Chicago, and figure out how to live my life as best as I could while dealing with all of this.

When my dog Reese died a year and a half ago, I told my therapist that I felt like everything was out of control. Everything was so sudden, and I couldn’t fix anything that actually mattered. She told me that I was right, I couldn’t control the things that would have a large impact - but I could control the littlest things in my life until I felt like things weren’t quite so out of control.

She told me to pay a great deal of attention to the fact that I chose my own outfit for the day and what I ate for dinner, how I organized my desk, and in what order I got my work done. I couldn’t control life and death, or the processes of either, but I could choose these little things and feel like I had at least somewhat of a grasp on things.

This is why, when a friend let me know he was going to visit our neighborhood Wal-Mart before it closed for the last time, I tagged along. I couldn’t control Nana hurtling towards death at an alarming pace, but I could control what was in my pantry, specifically one of my favorite snacks.

As someone who has always been picky with food, I often frustrate people by having a favorite shape or type of common snack foods, and don’t like eating others. I was upset when I heard this Wal-Mart was closing because, so far, it’s the only place where I’ve been able to find Scooby Doo stamped Cheez-Its, which taste better to me since they are crunchier and also have the cute shapes to enjoy.

It’s not that my world would end if I didn’t have the right Cheez-Its in my pantry, but I knew that something small like this was exactly what my therapist would have told me to do at that moment. And so, an hour before the store closed, I bought all five boxes of Scooby Doo Cheez-Its remaining in the store, and texted my therapist:

I told her, “I think I’m in the ‘I can’t control life and death but I can control what’s in my pantry so I’m buying all the Scooby Doo Cheez-Its in the Wal-Mart in the hour before the store permanently closes because they’re good for a long time and that’s one less thing to worry about’ phase of grief,” and although this phrasing is kind of funny, it gets at an important point:

I don’t know how much longer Nana will live, nor will I have the opportunity to speak to the person I loved for so many years once more. I know I’m the sort of person who needs to control things or I will start to spiral - it’s an OCD thing I’ve had to grow used to over my life. And although I don’t know the specifics of how this situation will go, I do know exactly how I will fall apart if I don’t take care of myself.

It feels strange to say this, but somehow, buying enough Cheez-Its that I don’t have to think about a future supply feels like putting a band-aid on the most gaping wound, but it’s somehow still helpful. I know it won’t fix the wound, but it will at least give me the tiniest bit of energy to focus on the things I need to do, and a splash of happiness in a deep well of sadness.

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.