Thursday, July 10, 2014

A conversation with author Deborah Shouse

A while back I had the notion that I would begin a series of interviews with authors. I wanted to talk with people who had written about themes I found compelling – love and courage and growth and self-awareness.

I connected with a couple of writers whose works had resonated with me and asked if they wanted to do an interview. My life is pretty full-on at the moment, so I won’t go as far as to promise this will be a regular series, but you will probably see some interviews from time to time.

The first of these is with Deborah Shouse, who has written Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. The book chronicles her mother’s journey with Alzheimer’s and Deborah’s very personal response to her mother’s disease.

I have some experience with the topic, as my father suffered from dementia before he passed away, and many of my peers are dealing with similar issues with their loved ones. However, what struck me most about Deborah’s book was not necessarily the subject of Alzheimer’s, but her own personal response to dealing with a frightening and emotionally-laden loss.

Instead of feeling burdened by the experience of caring for someone who had previously cared for her, she used it as an opportunity to further open her own heart and accept without judgment each stage of the disease. At its heart, this is a story of courage, connection, deep humanity and unconditional love.

 * * *

K: I understand you kept journals throughout your mother’s illness; however, at what point did you make the decision to write a book and what prompted that decision?

Deborah: I started turning my journal entries into essays. I read one of these essays at a literary event and so many people came up to me afterwards, saying: “My mother has dementia… My father…My aunt…” I felt an immense connection with these caregivers and wanted to continue sharing my stories.

K: Each scene in your book is written with such immediacy and detail that I feel like I am right there beside you, experiencing everything along with you. How did you manage, as you were writing this, to put yourself back in that space and capture the emotional and material intricacies of what had happened years earlier?

Deborah: I used my writing to help keep me sane, balanced and enjoying the present moment. I would take notes of what Mom said and I would often journal after I spent time with my parents. For me, it was a way to focus on noticing the gifts and lessons I was so abundantly receiving. It was also a way to record Mom’s last years and share these meaningful experiences with family and friends.

K: You do a beautiful job of describing the effects of Alzheimer’s and, in turn, the effect of those changes on your family. Your mother gradually loses the capacity to perform the simplest of functions we take for granted, such as dressing herself or recognizing her loved ones, and her personality begins to change. While you mourn each loss, you also show an amazing capacity for accepting the changes and simply staying present in the moment and loving your mother as she is. Can you talk a little bit about that?

Deborah: This became my spiritual practice—accepting Mom for who she was right then. Of course, that’s what we all want—it’s the essence of unconditional love. Each time I was tempted to feel sad or upset, I allowed myself those feelings of loss and also looked for something positive. I always found it!

K: In one scene you give your mom a blanket and she stares lovingly at it and coos, “what a sweet baby.” This reminded me of when my own mom was dying of cancer and was heavily medicated. We gave her a teddy bear and she held it to her chest and spoke lovingly to it, calling it Trevor (her grandson’s name). It was both beautiful and heartbreaking. You then go on to say something that really resonates with me: “Maybe this is the lesson we are all to learn eventually. In the end, only love is left.”

Deborah: I learned so much about love from being with my mother and father during those days. My father showed me how to truly love and my mother let go of her rational rules and was really able to receive affection. Being with her, looking into my mother’s eyes for 30 minutes was a deeply connective experience.

Q: I’m a big proponent of the healing power of storytelling, and you mention this in your book as well. In fact, it has influenced your career to some degree, has it not? Can you share your thoughts on some of the gifts of storytelling?

Deborah: The more we share our stories, the more we realize how connected we all are. Caregivers often feel isolated. Ron and I have been able to share our stories all over the world and we’ve learned how deep our similarities are. In Turkey one man said to me, “Your story is my story.” That kinship, that sharing of the heart, means so much. Plus, there’s often a social stigma with dementia. The more we share the richness of this journey, the more support we’ll get for those who live with Alzheimer’s.

K: I know that many people who have been through challenging experiences, such as the complicated loss that occurs with Alzheimer’s, report that the experience changed them in some positive ways. While living through your mother’s illness and death was clearly very painful, did it leave you with any gifts?

Deborah: I feel so lucky I got to travel with my mom on this journey. My gifts include widening my understanding of love, opening myself to slowing down and patience, surrendering into accepting a person just as they are, learning to be in the present and appreciate the gifts of the moment.

K: Writing and publishing a book is a monumental journey. Now that this is behind you, what is next?

Deborah: I am working on a book about creativity and the caregiver's journey. The book will focus on creative activities to do with your loved one who has Alzheimer's and will also offer ways for caregivers to creatively frame this tender and challenging journey. I welcome ideas from your readers. What creative activities have you explored with a person who has dementia? And how do you keep yourself connected and creative?

K: Thank you, Deborah, for taking the time to share your thoughts with us today. I wish you all the best on your next endeavor.

* * *

You can find Deborah’s book here. She donates a portion of proceeds to charity and to date has raised over $80,000 for Alzheimer’s programs and research. 

In addition to her book, Deborah writes a weekly love story column for the Kansas City Star. Together with her husband, Ron, she travels all over the world to perform her writings to audiences in places as far flung as New Zealand, Nova Scotia, Puerto Rico, England, Ireland, Chile, Costa Rica, Italy, Turkey, Ecuador, and the U.S. Virgin Islands. An amazing lifestyle, to say the least!

To learn more about Deborah’s work, visit her blog or follow her on Twitter @DeborahShouse.

Thursday, June 19, 2014

The ties that bind

In the fall of 2011 my life was in a shambles. It had been blown wide open by domestic violence and the ensuing child pornography case. I was in the full throes of PTSD and walked around in alternating states of fear and numb disbelief.

It was during this tumultuous time that I went out on a routine errand and came across two animal control officers manning a makeshift adoption clinic. They stood in front of the entrance to Walmart, flanked by a folding table and a crate full of kittens. They asked me if I wanted a kitten.

I made the spontaneous, and somewhat dubious, decision to adopt and bring home two kittens. It was perhaps not the wisest thing to do at a time when my life was in upheaval, but as it turned out, it was fortuitous.

The kids fell head over heels for the cats. Their kitten antics brought a levity and joy to our household that had been sorely missing. It was like the clouds parted just a bit and allowed the sunlight to pour in.

The kids loved them in the rough and tumble way kids do -- they hugged them and dressed them in doll clothes and rocked them in the crooks of their arms. The kittens were tolerant of all of it but I half expected, as they got older, they would begin to give the children a wider berth in the interests of self-preservation and dignity.

What happened instead, surprised me. The female cat, Lulu, became closely bonded with my daughter and the male cat, Sebastian, did the same with my son. They stuck with them like glue.

I would often get up during the night and walk the halls. I was too anxious and frightened to sleep. Every car passing by, every creak of the house settling, would put me on high alert. I would walk down to the kids’ rooms and look in on them. Every night – every single night – the cats would be sitting there on the foot of their beds, like sentries.

One night, it struck me. They were watching over my kids. They knew. Somehow, in their cat senses, they knew. My eyes welled up with tears of gratitude for these two protective souls. I began to think of them as guardian angels sent here to help my children navigate this difficult journey.

In May of 2012 things had escalated to the point where I felt we had to leave our home to ensure our safety. I still remember the panic I felt when I had to try to sort out not only a safe place for us, but one for our pets as well. I was fortunate in that the family who took us in was gracious enough to also take in our cats. A neighbor took in the kids’ goldfish.

However, only a couple weeks into our stay in our new “home”, my ex-husband found us. I will never forget the drop of my stomach when I was told that his car was idling out front of the home. By the time the police arrived, he was gone.

The result was that we had to leave again. We were fortunate to find a new safehome, but this time we were not able to bring the cats with us. Sebastian and Lulu stayed behind, in the care of a friend. It felt like an amputation and we all mourned the lack of their presence in our daily lives. I remember my kids, curled up asleep at night, and the empty space at the foot of their beds.

Two years have gone by since then -- two years that feel like a lifetime. Since then, I have learned quite a bit about the connection between pets and domestic violence. I know, for instance, that almost half of pet-owners will delay or refuse to leave a violent relationship because they are unwilling to leave behind a pet. I know that for some, this decision proves fatal.

Many of you know I now work for a domestic violence services agency. I don’t talk a lot about it here on my blog, because I want to keep my professional life separate from my blogging life.

I work for an agency that provides services to several thousand victims every year.  We get calls to our hotline all the time from women who want to leave an abusive situation, but don’t want to leave behind their pets. It has helped me to see that my situation was not an exception, but is unfortunately an all too common dilemma.

Because this is such a significant unmet need, our agency has made the decision to build an on-site pet shelter so that women and children who have to flee their homes can bring their pets with them. It is a big undertaking, but a necessary one, we believe.

For the past several months I have been immersed in the planning of the new pet shelter. And for the past week, I have been working furiously, with the help of some talented colleagues, to prepare for the launch of a crowd funding campaign to help raise money to build the facility. It has been a bit like birthing a baby -- intense, nerve-wracking, but very exciting. I have all fingers and toes crossed that the campaign will be successful.

Today, I am stepping across the invisible boundary that separates work from blog, and I am sharing with you the results of that labor. I want to share it because, despite the fact that this is a professional endeavor, it is also a deeply personal one for me. My heart is invested in this.

On our site, there is a short video that gives some information on the connection between violence and pet ownership. You may recognize one of the stories (and a few of the faces) in the video. If you would like to support the campaign, that would be wonderful, but please don’t feel a sense of obligation. More than anything I want to simply share what has been an immensely gratifying project.

You can find the campaign and video here.

It is my hope that this pet shelter will help families, just like mine, who have felt the impossible bind of having to choose between love and safety. It is my prayer that it will offer comfort, safety and hope to those whose lives are impacted by abuse and violence.

Note: If you are yourself needing refuge, please contact a local or national domestic violence hotline for information about shelters in your area. A small percentage of shelters can accommodate pets, but even those that do not can help you locate resources to keep your pets safe while you are in transition.

If you choose to donate to the cause or share the campaign, please know that the funds go 100% to build the pet shelter and in no way impact my job or my compensation.

Wednesday, May 28, 2014

A heart-shaped hole in the world

You may write me down in history
With your bitter, twisted lies,
You may tread me in the very dirt
But still, like dust, I'll rise.

Does my sassiness upset you?
Why are you beset with gloom?
'Cause I walk like I've got oil wells
Pumping in my living room.

Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I'll rise.

Did you want to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops.
Weakened by my soulful cries.

Does my haughtiness offend you?
Don't you take it awful hard
'Cause I laugh like I've got gold mines
Diggin' in my own back yard.

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I'll rise.

Does my sexiness upset you?
Does it come as a surprise
That I dance like I've got diamonds
At the meeting of my thighs?

Out of the huts of history's shame
I rise
Up from a past that's rooted in pain
I rise
I'm a black ocean, leaping and wide,
Welling and swelling I bear in the tide.
Leaving behind nights of terror and fear
I rise
Into a daybreak that's wondrously clear
I rise
Bringing the gifts that my ancestors gave,
I am the dream and the hope of the slave.
I rise
I rise
I rise.

Godspeed Maya Angelou. You are gone, but you have left behind your wisdom, grace and phenomenal beauty in the form of words. We can follow them, like a trail of crumbs, so that we may rise as well.

Tuesday, May 27, 2014


Tonight as I was putting Danny to bed I picked up a framed picture on his dresser and looked at it. It was a family picture taken about 7 years ago at Rocky Mountain National Park. We used to go there every fall and rent a cabin.

Dan told me a few years ago, not long after his dad was removed from his life, that he wanted that picture of the four of us in his room. At the time, I was uncomfortable with it, because everything was so fresh and awful and the last thing I wanted to do was look at that picture. But I set my feelings aside, framed it and put it on his dresser.

For three years I have avoided looking at that picture because every time I saw it, it stirred up so many emotions -- none of them pleasant. Tonight, however, I looked at the picture and felt nothing negative. I simply thought, "That was a fun trip. I miss the mountains."

And you know what? It was a fun trip.

Dan pointed at the picture and noted that I still have the same coat. He asked if this was the trip where Anna threw up in the pool, and I said no, I think it was the trip where he threw up in the car.

Maybe that's what freedom is. To see the ugliness of the past and not be emotionally bound by it, but to simply think, "Yeah, that happened." It was so very painful, but among the broken fragments of the past, there was beauty, too. 

Monday, May 26, 2014

Some beauty, some advice and a rant

If I were a virtuous person, I would have spent the long weekend packing and cleaning and painting the walls. This is what I told myself every five minutes. But then I would turn around and say back to myself, hey, chillax, it's a holiday weekend, sit back and read a book or three. I argued with myself in this fashion until finally, thankfully, I won.

No packing. Lots of reading.

In addition to two books on the neuroscience of happiness and well-being (have read about five or six so far – can’t stop, so fascinating, will share more later), I’ve also read some great stuff on the web. I thought I would share the highlights with you:

This post, called Strong, by Deb at Bright & Precious. Deb’s writing is beautiful and soulful. Here she writes about her years-long struggle to regain her health after cancer treatment -- about having the strength to get up every morning and show up for life, in spite of everything. This piece on being strong because you have to be, because you have no other choice, really hit home with me. Sometimes obstacles are brief and fierce. Sometimes they go on for years, and are still fierce. Deb's a remarkable woman.

This post on Writer’s Block by Chuck Wendig at Terribleminds. Chuck doesn’t believe in writer’s block, but he lists all the things that keep us from writing (and that we tend to attribute to writer’s block) and what we can do to move beyond them. Warning – his writing is full of the swears. Enter at your own risk. But, bonus – he is an amazingly talented and entertaining writer. You may not want to leave.

I discovered Chuck’s blog because of his viral post Not all Men, But Still Too Many Men, written in response to the Santa Barbara shootings. Oh. My. He addresses the entitled assumption that pervades our culture (so many cultures) that women exist to fulfill the sexual and emotional needs of men. On a rantypants scale of 1 – 5, it's about a 26. I posted it to my Facebook wall and some people took issue with it. I loved it. I work in an industry whose very existence is to serve the women who’ve been hurt by this sense of entitlement, and of course, I’ve personally been at the receiving end of it. Most days I simply get up and quietly deal with the fallout of this craziness (see Deb's post, above), but occasionally it makes me want to swear and rant (or at least nod vigorously while reading someone else’s sweary rant).

Finally, as long as I’m sharing links, I was interviewed a few weeks ago for The Pixel Project’s Survivor Stories. They spoke with women from all over the world who have survived sexual or domestic violence, and have been posting an interview every day during the month of May. You can tell my interview because there is a ginormous picture of my head.

If all this talk of violence and long-suffering is too much, go here to see some adorable kitten pictures.

Finally, thank you for your lovely comments on my last post. Heart-warming and unexpected.

Thursday, May 22, 2014


Today was a bittersweet day. Right now there are so many things coming to an end -- some joyful, some sad. I’m usually pretty even keel, but today, in a moment of sentimental indulgence, I cried for all of it.

For living in a house that is packed with moving boxes.

For my boss, who encouraged me to stay home today so I could be there to greet the kids when they came home from their last day of school. (Celebrate with brownies and ice cream, she said.)

For the memory of sitting my kids down and telling them that we could no longer afford to stay here, that we would find another place and it would be lovely and they could help me pick the house.

For having to choose my words so carefully -- never mentioning that their father had emptied out their trust.

For the recognition that I’ve stood on this precipice for so many years, and now that I’m finally stepping off, it’s only to land back on Kansas soil.

For the privilege of sitting in a metal folding chair in the school gymnasium to watch the end-of-year awards ceremony.

For my daughter, who was called to the front of the auditorium five times.

For the many children, my son included, who sat expectantly and whose names were never called.

For the teacher, who leaned over to me during the event, to let me know that my daughter had waited until the last of class to tell her classmates she wouldn’t see them next year, and that the tears streamed down her face when she told them.

For the realization that she had borne this news silently for so many months.

For all the awards ceremonies and field trips and class parties and field days I couldn’t attend because I was working or ill or simply trying to hold it all together. And for the times I took off work and did attend.

For the loss of that dream – the always-there mom I wanted to be, the hearth-and-home family life I had imagined, the freedoms and choices I assumed I would have.

For my amazing, gentle children, who have brought me joy which surpasses anything I might have imagined in my youth.

For the graduating fifth graders, who held the privileged seats on the bleachers in the back of the room, who walked out of the auditorium for the last time ever, smiling and reaching out to high five the younger kids sitting cross-legged on the floor.

For the fourth graders, who hooted and jumped with joy as they were called to rise and take over the bleachers in the back.

For that one small boy, who was accidentally pushed to the ground in the melee, who got up and walked uncertainly to the bleachers and took a seat by himself on an empty stretch of bench. (Don't worry small boy, it gets better. It really does.)

For the sadness I felt at leaving behind this school, the teachers and staff who have been with my kids through all the crazy-scary-heartsick years, who kept an eye on them and scanned the parking lot during recess and checked in with them daily and hugged them and knelt down to their level and spoke sweetly to them.

For the one teacher especially, who believed in my son.

For the middle-aged woman in a purple sweatshirt who smiled kindly at me as I stood in the grocery aisle, looking at boxes of brownies through tear-filled eyes.

For the sunshine that warmed my face and make me blink as I walked out of the store.

For all these things my heart swelled and broke.

For a moment I stood there in the parking lot -- a woman on an ordinary day in a no-name town in the middle of a big expanse of prairie -- and reveled in the full force of all these emotions. Then I got in my car, drove home, made brownies and sat on the porch, waiting for my kids to come home. My beautiful kids.

Today was a bittersweet day.

Then and now

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