CaringKind is the heart of NYC’s Alzheimer's caregiving and their mission is to create and promote comprehensive and compassionate care for persons with Alzheimer’s disease and related dementias.

WATCH Daniel’s opening remarks as the featured guest speaker!

Below is the transcript:

I’m Daniel Kenner and I’m the captain of team MY BUDDY AND ME. The last time our team walked this boardwalk, both my parents were here to join us. Dad was diagnosed with frontotemporal lobe dementia on Valentine’s Day 2013. Four months later mom was diagnosed with colon cancer. After a long, and loving, and extremely challenging, four years, they passed away within a month of one another in 2017. We were fortunate that we were afforded a long goodbye and any day I get to talk about my parents, is a good day. I had a serious bout of depression this week and I remembered a birthday message my dad wrote when I turned 23. It said, “Hope this year is the beginning of more success for you. You’re a very special son, Dan, and we love you very much… mood swings and all.” Dad was always way ahead of his time. Then it said “PS Make mom happy, don’t go backwards but forward.” And I think that’s applicable on a day we’ve joined together to put one foot in front of the other. I want to thank my very generous teammates, they are truly my family. Countless times over the years you have put me first. I appreciate I can share with you the good, the bad and the ugly, even though it breaks my heart when you see me sad or scared or lonely but in a very powerful way, I’m blessed you are the ones I can be comfortable to do so with. I know you walk with all of us on our mission today. Thank you! Our family was lucky that Dad’s dementia chipped away all of the BS, all that was left was purity. There was no anger, there was no agitation. There was only kindness. Love. A smile that creased to the edges of his eyes. When he spoke it was from the deepest reaches of his heart. In this sense we were lucky. I want to take a moment and recognize the long hours, sacrifice, and hard work all the caregivers gathered here today bring to the task of caring for your loved one. There will be many, many along the journey who are not able to fully engage and you are the strong and you are the capable and if you haven’t been told, or reminded, recently, I am so proud of you! If we did not recognize and fight what is unfair, the fairness in the world would not be nearly as precious. It’s important to be grateful for the present, to celebrate those we are with today, what they can do now. And so I want to recognize all our family and friends, our neighbors and coworkers, here with us today who do have dementia or, any another long-term illness. Thank you for allowing us to be beside you and trusting us with your stories. That is no light feat. You give us glimpses of your life that we never knew. It is these stories, these extraordinary tales and accomplishments, we will hold and share for a lifetime. Dementia interferes with daily life. It starts out slowly, intrudes gradually, interrupts before you’re ready. It detaches you from the life you created, the goals and the plans. It restricts your life, it separates you from the future. It’s my honor to speak in support of CaringKind for they provide the necessary resources that help manage the burdens and stress when life spins out of control. It’s an organization that gives you the chance to realize how big your community is. And that’s one of the positives to tragedy. It allows you to see the good in people. If everything was perfect we wouldn’t find opportunities that shine a light on empathy and compassion and generosity. You just have to embrace the concept of “yes.” To allow others to carry you when you need to be carried. Today we are a community, and we rally together and by allowing others in, our family, our friends, our neighbors, we all get to see the best of ourselves. Single moments are so dear, so precious. Savor the visits. Listen, share, smile, connect. Live in the present, because that's all there is. The future is not dependable. That’s why we’re here today. To make new memories. The sadness may never go away, it’s easy to notice the struggles in life. Just don’t forget to embrace the joy, the love, the connections and to always honor how far we go. Thank you for being here and best to you and your families! Please come and find me and lets talk about Jacob and Maureen.

“I think one of the things that I learned through my mom’s illness is that I had been joking about it being like the last line of the Beatles’ White Album—‘the love you take is equal to the love you make’,” Daniel said. “I think she did so much for children and the community that when we really needed it, people never said ‘no’, people were always there to help us.”

Read the rest of the interview HERE

EVENT DETAILS

“On Good Grief we explore the losses that define our lives. Each week, we talk with people who have transformed themselves through the profound act of grieving. Why settle for surviving? Say yes to the many experiences that embody loss! Grief can teach you where your strengths are, and ignite your courage. It can heighten your awareness of what is important to you and help you let go of what is not.”

LISTEN HERE and please call in at 1-866-472-5792!

To round off our first exhilarating month of release, Daniel appeared for a brief interview at THE WRITERS LIFE!

Q: How hard was it to write a book like this and do you have any tips that you could pass on which would make the journey easier for other writers?

I’d get sick after every draft I completed. I’d be so worn down, exhausted, afraid, unsure. But invariably, writing Room For Grace was my chance to keep their voices close. I needed to keep hearing them. It was like body armor for me. I feared the inevitable. Writing and journaling those four years of my parents’ illnesses allowed me to participate more closely and to monitor changes and nuances. I believed my mom when she told me we’d find lessons in all the small day-to-day moments. Though, many of the moments were profoundly sad. But, I knew I was giving my family a gift. A record. A tribute. I gave them my presence and my curiosity and gave them the opportunity to be articulate. We spent a lot of time together, in the last eighteen months. There were always going to be more lessons, that’s just who my mom was and, there were always going to be more stories, that’s just who my dad was. I was always going to want to give my mom a piece of my mind, that’s just who I am. We were all present for something mysterious. That’s unconditional love, to share in mystery together. Mom and I pushed each other so that her courage became my courage. The last thing I remember her saying was - I want to thank you for being so free with your thoughts. I shared an incredible bond with my parents. To hear their fears, many of them devastating, to watch their lives shrink from disease, it wasn’t easy. But to be one of the vessels they could pour their thoughts into gave me a sense of peace. And ultimately, after they passed, I had no regret. In its place, I had pages and pages and pages of amazing stories waiting to be tackled, to be remembered, to be shared. If I had any advice I guess I would say, anticipate the needs of those around you, speak for those in need and stay fiercely loyal.

Click to read the rest of the interview.

Recorded live at Reimagine NYC. With Host Kimberly Paul. Event Details HERE

Thank you for this interview!  I’d like to know more about you as a person first.  What do you do when you’re not writing?

I see a lot of theater. I sit in the sun and squint. I eat cheese. And ice cream. I get depressed sometimes. Or lethargic. I take walks and listen to people and write down fascinating quotes or interact with strangers in parks and subways and busy New York Streets. Sometimes just to get a reaction. I like to take the Staten Island ferry. I play board games. I make fun of my friends. I edit and edit and edit all my sentences and overthink most things. I love to watch movies. Why aren’t there more heist films? I love buying vinyls and thumbing through the racks of old soul and funk records. Sometimes I combine these things and take the ferry when it’s sunny outside and I’m really sweating, eat an ice cream cone after I’ve just seen a movie and eaten spicy noodles and shopped for a record and just read a play while the ferry charges towards the Statue of Liberty.

When did you start writing?

My uncle recently reminded me that I wrote three “books” by the time I was I think eleven. My first book was a memoir. Which is hilarious. The second was about a girl who gets bullied in middle school because she’s adopted and the third, The 3 A.M Huddle, was about a boy who plays with his baseball cards after he’s supposed to be sleeping. My dad was convinced Bob Dylan was part of our family so I grew up listening to a lot of Bob while other kids were singing lullabies. But I started to seriously write in high school. My grandmother had Alzheimer’s and writing became an outlet. I wrote my second play, Fields Of Sacrifice, based on an Andrew Carroll book. Unfortunately, when I was on the cusp of further independence, taking my driver’s license permit test, I found out one of my best friends, Nick, was unaccounted for after the fire erupted at the Great White concert at The Station nightclub. Foam sound insulation caught fire after pyrotechnics were set off. I remember watching the news footage, almost paralyzed with fear, which showed that any escape was nearly impossible, and there near the front of the stage, was a boy who looked like Nick. Nick was the youngest of one hundred people who lost their lives in Warwick that night. My friends and I lost a gentle friend in the most horrifying way. For his funeral, his mother and father gave Nick a “Graduation” with the motto, “Do Not Fear To Hope,” a line Nick had written in They Walk Among Us, his play about three guardian angels passing on messages of love and hope. My mom liked to say every time she came into my room after that, I was writing volumes and volumes of stream of consciousness poems and songs. I guess I’ve always channeled my pain and put it on paper. I remember thinking all of a sudden I had to grow up with the absence of one of our best friends. So, I’d sit there after school, just writing and writing and writing. And then I’d come down for dinner when Dad’s meatballs and spaghetti was ready.

The rest of Daniel’s interview with I’m Shelfish appears HERE

BUY ROOM FOR GRACE

Join us at Pete's Candy Store Saturday the 27th at 6pm to celebrate ROOM FOR GRACE! I'm going to be joined by many friends (Kevin Daniel, Feign Pathos, Gabby Sherba, Danny Klau, Jordon Ferber) and we're going to turn the space into a variety show a la LAST WALTZ baby, then we'll celebrate in grand fashion.

Finding out your mom had stage 4 cancer must have been devastating and I know this is a hard thing to talk about, but how did you get through it without crumbling?

Daniel: I allowed myself to crumble. I was very low and very depressed, unmotivated. There was stasis. I couldn’t move. I mean both of my parents in such a short amount of time, really? But they were soul mates. It’s almost not surprising now when I think about it. But for a very long time, before I had Room For Grace, a project to keep me close, a project that filled my heart with purpose, I was angry and my faith was basically demolished. It was like a perpetual snow storm. All the routes I had learned through life were suddenly blocked and impossible to see. There was a lot of sadness and isolation and confusion.

See the rest of the interview at HERE

An excerpt of Daniel’s preface, “You Held My Hand And Walked Me Out Of The Water” was featured today on STREETLIGHT! Click HERE!

The first chapter of ROOM FOR GRACE, “Stage 4,” appeared today on RISING INDIES UNITED! Read it HERE.

What first inspired you to write or who inspired you?

Both my parents were teachers and avid lovers of the arts. As a young boy I remember playing all the time. I didn’t need much - blocks, Legos, art supplies, a football or a Wiffle Ball bat. But I also remember buckets and buckets of books in my room and my mom’s classroom and visiting the Rochambeau Library up the street from where I grew up and that’s not to mention my dad’s bookshelf. He was a director and a theater professor at RISD when I was growing up and I remember discovering all these voices in the worlds of Tennessee Williams, Edward Albee, Arthur Miller, Artaud. The readings with my mom always tended to be a little lighter: Chris Van Allsburg, Lowis Lowry, Eric Carle, “The True Story Of The Three Little Pigs,” “The Giving Tree,” “Where The Sidewalk Ends.” But then she left out a John Grisham book in the kitchen one summer and I remember reading that when everyone went to bed. I had the Pawtucket Red Sox game quiet on my radio to hide my audible gasps of suspense. I think it was “The Client.” I was like ten or eleven years old. Ha. But of course, there was one other member of my family, and that was Bob Dylan. I grew up in a household where his writing was more important than Shakespeare. Or the Shakespeare of our time, but nonetheless, um, vital learning let’s say. Of course there were his classics from the sixties, and there his writing imitated and honored and birthed from the greats - Brecht and Rimboud and William Blake and Ginsberg and honestly, the Bible – but my favorite growing up was “Blood On the Tracks” because it felt like I was getting closer to Bob Dylan himself. But then in college I’d say the playwrights that really affected me, their philosophy, their style, their voice were probably Samuel Beckett, Sarah Kane, Howard Barker, Annie Baker, Sarah Ruhl, Stephen Adley Guirgis.

At what age did you know you wanted to be a writer?

I guess I grew up thinking I was going to be a quarterback like Joe Montana or a shortstop like Omar Vizquel but I was always too much in my own head not to do something creative. When Dad ran the theater department at RISD, I always wanted to be on set talking to the actors, handling the tools, trying on the costumes, watching from the wings and every angle of the auditorium. In high school, my grandmother passed away from Alzheimers and then shortly after my best friend died in the Station Night Club fire, and writing really became my retreat, my solace, my safe place. I’d write furiously. And then throw it in the trash. And start over. It wasn’t until after my mom and dad passed that I found a lot of these early writings. My mom had gone into the trash and saved them. I mean, I guess she knew I’d need them eventually or want them. And of course, she was right. There were also notes I wrote to Santa Claus. Those were great to read. They make me look like I was an easy child. I was not. But to answer your question, it might not just be writing, but I like working with a creative element. I’ve painted in the past and really enjoyed it but my true passion, and I’m definitely hoping to get back to it now that Room For Grace is completed and published, is working on the stage and on film. I really want to work outside of my own writing, to work in somebody else’s world and in an ensemble again.

READ THE REST OF THE INTERVIEW WITH “ECCENTRIC BOOK-A-HOLIC” HERE

“This memoir is so much more than an account of a mother’s illness written by her son. It’s a beautiful, heartfelt journey into all of the feelings that encompass losing a loved one.”

Read Lynchburg Mama’s review!

Daniel Kenner spent an hour on the Where’s The Grief Podcast for an open conversation with fellow New Yorker Jordon Ferber about adjusting to life after loss, growing up in a Bob Dylan household and a few choice nuggets about the Kenner family that you won't find in Room For Grace. So, if you're taking public transportation home, cooking dinner tonight, or even just going to sit in your favorite chair after the kids are asleep, give this extraordinary episode a listen! (Includes explicit language.)

To purchase ROOM FOR GRACE please visit www.Amazon.com.

LISTEN TO PODCAST

I called my mom, Maureen Kenner, the day her obituary was published to see if she agreed with the tone, the accolades, the progression. She didn’t answer; which only seemed obvious after it went to voicemail. She died four weeks after my dad, Buddy Kenner, died. 

Mom chose “Grace” as her confirmation name and lived by that code. She spent her lifetime as a teacher working with the handicapped, elderly, and disenfranchised. She lived like the inspirational banners that adorned the bright walls of her Room 4 classroom and saw possibilities in every field trip, every circle in the sand, every Scattergories game, holiday song, night out for pizza and ice cream sundaes, every grandchild, niece, nephew, student, and family member.

But what is “grace?”

Is “grace” strength?

My father had frontotemporal lobe dementia and my mom, diagnosed with Stage 4 colon cancer only five months later, was his caregiver. She remained steadfast even when his disease prevented him from giving her the care she sought from a husband and partner.

Is “grace” poise? Their dreams of their retirement were never clouded with health issues. The life they worked toward was not there; it had changed past the point of recognizing. The reality of what they retired to was obvious.

Is “grace” the ability to trust, respect or remain optimistic? “Will I be ready in his time of need?” Mom worried about that all the time. “What will happen to him when something happens to me? What’s going to happen to me when something happens to him?” She worried that neither of them would be strong enough to keep their vows. She had such a strong sense of accomplishment for all they had achieved together, but it was clear that their happiest days were behind them.

It is said in the Book Of Job, “The Lord giveth, and the Lord taketh, Blessed be the name of the Lord.” Maybe “grace” is found in delicate actions - when we are genuinely there for others, putting our neighbors before ourselves, sharing in their joys and trials. I know Mom found her joy and happiness in the joy and happiness of others. She’d say, “When you put others’ needs before your own, it is truly in giving that we receive.”

I believe Mom found her “grace” through her courageous ability to ask for and to receive help. For four years, our community rallied behind our family, nourishing us with daily visits, leis of orchids, origami cranes, handmade cards, gift boxes, songs, and signs on our lawn. As the seasons changed, our community remained inspired to do good for my family. They let their spirit grow and let it make a difference, unafraid to open themselves up to heartbreak and disappointment. When there was an abundance of pain, and the generosity of others powered my family through to live another day, that’s when I learned about “grace.”

From Blogging Authors

Chapter 1: Stage 4

Been talking down to my headspace this gloomy afternoon and my soul feels shook, maybe even sad, so I thought I’d marinate for a few moments on the beautiful evening I shared with family and their close friends in Dayton, Ohio on Tuesday night. Near the end of the round table discussion that the Kettering-Moraine Branch Library hosted for ROOM FOR GRACE, I was asked a question along the lines of, “How are you going to measure the success of this project?” I’d like to talk about that now, as a project of this magnitude has many stages of success and to be honest, I thought it was the most thought provoking and striking question of the event.

SUCCESS: STAGE ONE There were family and friends, social workers, volunteers, doctors in abundance, everyone helping and I felt like I was floundering. I didn’t know what to do. I didn’t know how to help. Then my mom was told by her palliative care doctor that she may only have a year left to live. The oral history project I started with her the week of their thirtieth wedding anniversary was my way of saying, I’m here and I want to hear. I want to immerse myself into your life, your voice. Mom was a woman who got to live her dream. For seven days, for thirty hours, she spoke candidly about her upbringing, her siblings, her passions, her failures, her years with my precious and beautiful father and about countless, countless children she taught over her career. I wanted her to spare nothing, to give me everything, to trust me that I would be delicate, that I would hear her and celebrate and honor a life well lived. That bond between mother and son multiplied countless times during those days. We strengthened our core. I was lucky. I gave her someone who listened. And it was a success.

SUCCESS: STAGE TWO I gave the first draft of ROOM FOR GRACE to my mom for Christmas. It was the last Christmas gift I gave her. She told me it was the nicest gift anyone had ever given her. She felt her life was validated, preserved. She knew I cherished her ability to share it with me. We were so close then. Our unit. But she was getting sicker. Dad was only getting sicker. The book was my way of coming home. I was so afraid, the changes rapid, the affects gut-wrenching. My parents were changing and they were leaving me behind. But giving my mom that draft was a success. To see her fingers on the pages, to hear her voice run through the stories of the hallways and classrooms of Fox Point, to see her cozy and comfortable in her pink fleece bathrobe, that was a success. She knew she had lived her best life, that she was capable, that she was strong, that she was accomplished. I gave her pride. And seeing her life in those pages, gave me a mom I was proud of. Her selflessness, her empathy, her competitiveness.

SUCCESS: STAGE THREE My parents died weeks apart. My mom waited for my dad before she could let go. To be honest, I don’t know if she let go, but I know when it was time, her body did. For two years I thought she would go before him. It terrified me. How would my family and I take care of my dad the way Mom did? Oh, God, it did, it terrified me. But honestly, I felt strong when they passed. We had done the work, had all the moments and lessons and all the moments and lessons in between, and I felt grounded, I felt safe, I felt like I knew the way ahead. That they were with me. I had no regrets. I had given everything. Sometimes it wasn’t pretty, but it was real, and we did it together. I knew I would never be without them. But then something happened. Time, I guess. Maybe sorrow, how do you put it into words? But when I could, I slowly started writing and editing ROOM FOR GRACE again. It became what my dad had called a safe harbor. Working with their voices kept me safe. It kept me close to them. In a way, they were alive. The work was long and arduous but most days, I woke up and got to be with them, work with them, showcase and highlight them.

SUCCESS: STAGE FOUR I wrote a freaking book. I did. It sounds silly. But I wrote a book. And it was really hard work. Many days spent alone, in doubt, reliving and rehashing many heartbreaking moments. I gave the work my all. I wrote ten drafts. After every draft, I got really sick. Just empty, nothing left. But then the motivation would creep back in, and I’d get back up, and keep going. There was a lot of work to do. And because of the help I had along the way, I wrote a book.

SUCCESS: STAGE FIVE I got ROOM FOR GRACE published. I thought writing was going to be the hard part. Endless amount of emails and pitches, in hopes that someone would see the truth in the project, that someone would see the faith, the hope, the courage, the inspiration. There was so much rejection. But not only rejection. It was silence. And it was deafening. I felt like I let down my mom and dad. My family. Myself. I’ve always wanted nothing more than to be an artist, to take my experience and change it and mold it into something creative. To be listened, to be heard, to be considered, that someone else would give me what I had given Mom. What had I done with my time?! It felt helpless. I had created something and the people I had chosen to reach out to didn’t even respond. It must my fault, I feared. And then, it got published. I got to hand the work over, there wasn’t going to be any more excuses, there would be no more drafts, it was time to let go. It was going to be published. I got to work with designers. All those months alone, and finally, I got to finish the marathon alongside a devoted team.

SUCCESS: STAGE SIX The book has been released. It is now a product. For sale. But there is a voice in my head trying to diminish the accomplishment of what I achieved with my mom and my dad. It is trying to take out the roots of why the project was started in the first place. It is trying to undermine their memory. Sell more books, the voice screams. You haven’t sold enough books, it teases. It’s up to me to get the book into your hands, so that maybe you hold it as dearly as I do. It’s up to me to get the book to you so that word of mouth starts churning. So that its success branches, that it isn’t mine any longer, but ours. That we relate heart to heart. That we listen to one another. That I have the chance to make deep and meaningful connections like my mom urged. One of her final lessons. I believe there’s something in these pages, in these stories that will resonate and benefit you, that maybe your heart will recognize the joys and the trials. I’ve already had the chance to interact with so many special people, who have come to the readings and the events, to celebrate, to honor my parents, my family, me, the work, the final product of ROOM FOR GRACE. I’ve already had so many successes, but this last stage is weighing heavy today. How do I remind myself it’s not just about sales? Yet again, as an artist, I need the confidence to know that I made something, that it’s successful, that I can make something else. The next project. Jeez, am I ever going to be ready for the next project? As I see it, there have been six stages of success. Five should outweigh the last one, and yet...

Welcome Daniel! What an interesting background you have. Do you believe that your other interests such as adopting Les Miserables for high school stages provided a solid background for eventually becoming an author?

Daniel: Absolutely. I’ve gravitated towards stories and visual arts since I was young. Bob Dylan and John Grisham were my favorite writers by the time I was eleven years old. My dad’s bookshelf was full of plays, everything from classical to the absurd to the theater of cruelty. I was in heaven. There was always so much to absorb. And then, I wanted to find my own voice, and I think I was able to find that through the process of creation. To tell a story. To play. The dance of the controllable and the uncontrollable. I became obsessed with the idea of what would I leave behind. What would symbolize my life, my meaning? So to me, creation was vital. Our world is patched together with the human capacity for love and over time, through poetic meditations of love, loss and desire, I’ve found ways to create the art of my experience, my interests and my existence.

Were you a detail freak when it came to writing your book, Room for Grace?

Daniel: I had to be. My mom got cancer five months after my dad was diagnosed with dementia. We had to make a lot of lemonade if you know what I mean. My dad, my idol, was disappearing. It was the disease. I had to have a project that would keep me close, that would give me a purpose. There were nurses and doctors, social workers and volunteers, but I felt like I could help by listening to their story. And to try to capture it in some way. So yes, I definitely became frantic about writing and recording the stories. Preserving my family’s legacy. My dad was losing his ability to communicate. I had to be sure that my mom’s voice was heard. It took three years to complete Room For Grace but I can hear my mom very clearly. And I’m very proud of that.

Read the rest of this insightful interview at Blogger News