HLC Chats with Abby Kass

Abby Kass has spent more than 30 years in the field of education, as an arts education administrator, and, for the past fifteen years, a public school Spanish teacher. After caring for her dad, who had cancer, at the same time that her husband, Ben, had ALS, Abby also became a certified caregiving consultant. She is devoted to supporting caregivers who are doing what she refers to as the most challenging, yet loving and meaningful work she has ever done. A devoted fan of all things Disney, Abby’s blog, PixieDustForCaregivers.com, contains reflections of her experiences in caregiving and grief, many of which have connections to and are inspired by her favorite Disney films and characters. Abby received her B.S. from Cornell University and her M.S. from Bank Street College of Education.

(HLC): Do you have a nick name? How did you get it?

(AK): Not really. Just Ab or Abs to shorten my already short name!

(HLC): What is your favorite childhood memory?

(AK): My favorite childhood memories are those with my family. I smile and laugh whenever I think of my dad and the drives we took. He was so funny. I also loved coming to the city to go to the theater with my mom and my aunt Eleanor, and baking with my grandma.

(HLC): Camp HLC is one of our wonderful programs. Have you ever attended a summer camp? If yes, what was your favorite memory about camp?

(AK): I attended day camp for several years when I was growing up. I was a real klutz, and still am, so I avoided the sports. My favorite part of camp was doing arts and crafts and playing around with my friends on the bus.

I was so fortunate to attend Camp HLC as a volunteer for the first time last weekend in New Jersey! The warmth among the staff and families was truly touching. I loved seeing the children interact so beautifully, help and compliment each other while they worked on the scrapbooking project, and also to see the parents and grandparents participate. I was also touched by the shout outs - there was so much genuine love, enthusiasm, and appreciation for each other.

(HLC): Who is  your favorite musician?

(AK): I love music so I do have several favorites, from pop music to Broadway. Cher has been my favorite performer since I was around 8 years old. I was so obsessed with her that my mom even used to buy a special cake to celebrate her birthday!

(HLC): Do you have a pet companion? If so, please share his/her name and what you love most about him/her.

(AK): I grew up with pets and cannot imagine life without one, though sometimes I think I’m their pet! They bring so much joy and comfort. In February, I adopted a very adorable 2-year old cat named Tinker Bell (she’s very small - I call her fairy sized!). A couple of weeks before I adopted Tinker Bell, I lost my beloved cat, Disney, who was 17 and bravely dealt with a lot of illnesses. Disney was the cuddliest, sweetest cat ever, and when my dad and my husband Ben were both ill, what I especially loved was that she was always there and ready to listen to me and be good company. It was especially hard to lose Disney because she was my last family kind of connection to Ben. And, because she had so many medical conditions and required all kinds of medications, I continued my role as a caregiver, which I was surprised to find that I missed. Now, Tinker Bell and I have bonded as we learn more and more about each other - she is very sweet and funny - and fast!

(HLC): People would be surprised to know that....  (cool fact about you!)

(AK): I have had a dollhouse since I was young that I continue to decorate, and I love miniatures. I make domes and shadow boxes that celebrate a person’s life story all in miniature, even making tiny versions of photos, invitations, and other memorabilia.

(HLC): What is one thing you can share with others about resilience and adversity?

(AK): My experience has taught me that Christopher Robin was absolutely right when he told Winnie the Pooh: “You are braver than you believe, stronger than you seem, and smarter than you think.”

(HLC): What's your go to person, book, or movie for inspiration?

(AK): Ben was a tremendous inspiration because throughout his battle with ALS, he always kept his humor and persistence about doing things until he couldn’t any longer and finding creative solutions for navigating each issue he faced. It was a great lesson in how to tackle difficult situations that life puts in front of you. Walt Disney is my celebrity inspiration because of his fantastic creative vision and belief in our ability to do the impossible. I can find inspiration in almost any Disney film, but I aspire to be Mary Poppins!

(HLC): If you have a go to resource (website, blog, etc...) that you think would help others, please share it!

(AK): I actually kept a journal of important Disney quotes and characters that helped me deal with caregiving and grief that became my blog, PixieDustForCaregivers.com. I share my own reflections on caring for Ben during his battle with ALS while I also cared for my dad who had cancer. I also share my experience with grief. There’s a lot of reflection and also some practical thoughts. I highly recommend keeping a journal and, if you like to use the computer, putting your thoughts in a blog.

There are Facebook groups for pALS and their caregivers and in those groups you can find useful information and people who understand your feelings and experiences.

(HLC): Share something that you want others to know about ALS...

(AK): ALS is a cruel disease that can be very isolating. Ben was fortunate to have had his voice for five of the nearly six years that he battled ALS, even though his speech was impaired. His physical voice gave him an emotional strength. When he lost the ability to communicate easily, people often ignored him and only addressed me, which hurt him and made him feel invisible. I involved Ben in conversations, acknowledging his presence, and, showing that he mattered and was heard. Sometimes, people watched and followed my lead. It is so important to remember, and show others through example, that despite an inability to easily communicate, or move, that a person with ALS (pALS) can think, feel, and have lots of ideas. PALS need to know that they matter. ALS robs speech and other abilities, but we cannot allow it to rob the dignity and humanity of the people we love.

Thank you Abby for participating in our ALS Awareness Month campaign, HLC Chats With. Abby joined us at Camp HLC at Fairview Lake to help facilitate our scrapbook activity and we are so grateful for her support. She is amazing! Thank you Abby for all of your help at Camp HLC, for participating in HLC Chats With, and for all that you do to spread ALS Awareness and support other caregivers through your service and blog, PixieDustForCaregivers.com.