NANCY’S JOURNEY

A month away

I was sad when I returned home from my wonderful month of October in Red Wing, Minn. Fitting with my mood, the sky has been grey for the last two days.

I was awarded the Capstone Fellowship for Children’s Literature last spring. I was thrilled about the honor, but October seemed so far away that I didn’t even think about what a month away would be like. Then suddenly it was the end of September, and I was packing up my car for the month.
tower

That is when the worries started. How can I be gone for a month? Should I try to drive home to see Barry each week?  What if a very specific letter from the IRS that will signal a hearing about back taxes arrives while I am gone? How will I stand being away from my granddaughters?

What if they get sick and need me to babysit? Will I get any work done? What will it be like living with four other artists in the 100-year-old house on the Anderson Center grounds? Will I be irritating? All these things went through my mind as I headed down Highway 61 toward Red Wing. It seems that I have a fondness for Highway 61, because that is the same road that takes me up the North Shore of Minnesota.

Another worry was also weighing on me. I was asked to give the keynote address at a conference in October about how creativity and art has helped me cope with Barry’s frontotemporal dementia (FTD). Although I had thought for months about what to say, I didn’t know if I could get through it without breaking down. I had never given a talk about this journey we are on. Writing about this journey is one thing, but speaking about it to a huge room of teachers would be a challenge.

Becoming a new person?

When I pulled into the Anderson Center, I had the clear thought that if Barry hadn’t gotten sick and started us on this journey, I likely would not have received the fellowship, done many of the things and gone to many of the places that I have over the past few years. This concept is very hard to come to terms with. I have been feeling a sense of joy and excitement all summer as this new life I am living unfolds. I have made new friends and tried new things. And I feel guilty about that. Because of Barry’s illness, I am becoming new person.

On my own, for example, I have been dealing with the IRS, changing the printer ink cartridge, fixing my closet doors that keep falling off and now found myself holding a box of art supplies as I arrived to begin this fellowship. The fact that Barry is lying alone in bed at the nursing home day after day is not lost on me. I think about him constantly. Would he want me to keep living and growing? I think so, yet I sometimes wonder if he really wants me to stay by his side each day until FTD finally wins this war with his brain. But I decided not to think about that for the next month in my new home away from home.

From the instant I arrived at the Anderson Center, I knew I would love it. The attic room was a good place for me to work. I could spread all ideas out on the floor; and it was very quiet up there with the exception of Asian beetles constantly hitting the overhead light. I loved the pace at the center. I got up early each morning and worked for a couple of hours. When the sun came up, I would go for a walk along the Cannon River Trail. The rest of the day was spent in the attic until it was time for a quick bike ride before dinner. Our dinners were at 6:30 each evening and the conversations were lively with the four other artists living in the house. If I was irritating, no one ever said anything. We all got a long very well.

What I’ve learned
birds
Here are few things I learned during the month: I can work anywhere — I really do not need a studio, only a table. I learned that my imagination is still alive and well. Now I have a bunch of new book ideas that I am excited about. I learned that I love meeting and getting to know new people. I learned a lot from the other artists that month. (A 62-year-old can even learn from young people, so thank you novelist Mike G. for all your good advice!) I also learned that I could speak about Barry’s illness to a large group without breaking down.

I missed my granddaughters, but everyone did just fine without me. The IRS was there when I came back. Although I didn’t get the letter I wanted, the IRS sent lots of other letters. And the bill collectors were still there when I got home. I learned the world ticks along just the same whether I am at home or off living somewhere else.

This was not a depressing realization, instead it left me excited about my future, which I hadn’t been for a long time. When the month was over, I went to see Barry. I had been there twice during the month. He seemed thinner and was speaking less. I asked him if he missed me and he said, “I did not miss you.” So I guess Barry’s world ticked along just fine without me — or did it?

Now it’s mid-November and I am back at my old routine of seeing Barry each day while trying to get some work done. I can’t help but wonder what it will be like when he is gone. Will I be as excited about my new life when that day finally comes? I have a feeling that I may be starting all over again trying to find my way.

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17 comments on “NANCY’S JOURNEY
  1. Guess our lives don’t come with an instruction manual, do they? You can do it. You’re writing your own manual.

  2. Audie Gillespie says:

    Nancy, I really appreciate the way you share your feelings, hopes and doubts in your writing about coping with Barry’s illness, and how it affects your life and those around you. This is some of the most heart-felt and honest expression I have ever encountered anywhere, and bless you for sharing it so openly. I am truly in awe of your courage, resiliency and your love of life. So down to earth, and so inspirational. I am guessing that I speak for many of your friends when I say you are really showing us a marvelous example of someone facing terrible circumstances and immeasurable loss, with a shining soul and a generous heart. Sending love to you and Barry and all of your family. Audie Gillespie

  3. Karla Brewster says:

    You are an inspiration to all. Thanks for sharing your journey with us. I pray for you every single day. If you need help with the IRS, my husband is a great CPA and you’d get the Karla Brewster discount.

  4. Jane says:

    I’m on that same journey. My husband is still at home but I don’t know for how much longer. It is so good to hear about life and adjustments but it is very frightening! I have been looking at nursing homes and have found one. Hope there is room there when we are ready. So lonely and so many decisions to make all alone! Thanks for sharing.

  5. Christine bekiares says:

    Life itself does not come with a manual. I try to think new challenges offer an opportunity for growth and problem solving. I sent my daughter a bracelet that said something like, ” She thought she could, and she did.”

    You are N inspiration to me!

  6. One day at a time is what worked for me….Try not to wonder what would happen if what has happened had not happened. That was very tough for me. Also difficult was letting go of the guilt that I could not really solve the problem of Paul’s illness. You are doing so amazingly well. Amazingly. Be well, happy, peaceful, and safe. Your art gives so much to so many people.

  7. Jim Burns says:

    Hang in there Nancy-my first installment check to the IRS bounced-I was sure they were going to repossess my Nissan-there is life after tax problems.Prayers for you and your family.

  8. Mary Beckman Woodward says:

    Our lives are eerily similar. I also had been dealing with H’s back taxes and bills I knew nothing about as his mind slowly unraveled. I also took a month to help care for my 2 oldest grandgirls in Florida. I decided they needed Grammy na know. For the past 3 years instead of working on our world adventure bucket lists our fun life together came to a crashing halt that day of the first major aneurysm( we had done pretty well till then working around the slow deterioration. ) Now as I was packing to go halfway across America I realized their last 3 years had been anything but normal. One call after another Grampy is not expected to live- packing , rushing up to Mpls( my son-in -laws in the Navy and often half a world away) So rather than our fun adventures , the plane, and Mpls meant sadness ( both their great Grandparents ( my mom and dad) died during that time and Harry had 5 emergency brain surgeries and their only cousin( my youngest grandgirl was rushed in to have a grapefruit sized tumor( neuroblastoma cancer- she’s a survivor!!!) removed. So THEY DESERVED JOY. And yes, my daughter , son and all 3 grandgirls needed Grammy back and needed our bucket list of fun back. And like you nothing fell apart when I was gone . Rather all our hearts grew several sizes and our laughs and giggles came back. And when I returned home a therapist friend gave me a bucket and said ” the world is waiting for all of you again. Harry isn’t waiting . It’s time to gradually put your creative wings back on. And thus my soul and mind realized what another therapist friend said- you need you, the kids. Grandgirls , friends and family want you all back. And thus I gradually gave myself permission to LIVE AGAIN- to go on daily or weekly or a little longer adventures. This weekend the youngest , my son and I will be up at OUR BIG LAKE and hopefully witness the gales, and later Grammy will finally again share Christmas with my oldest two . Before I made that decision we all let the the brain disease control us . Now we’ve got our buckets out for new adventures- we’re not in denial just the opposite – we’re acknowledging the experiences but not carrying the baggage around 24/7. Happy bucket list Nancy! Love , Mary

  9. Sandy Cournoyer says:

    Your month in Redwing sounds so peaceful and healing. My husband is also in a care facility (5 months). He has the language variant of FTD. Speaking on the phone with him will soon no longer be an option. When you asked your husband if he missed you and he said he didn’t. Well, I had those same sentiments spoken to me as well. Daily I struggle with grief yet anticipate with hope a future that is clearly unknown. I just know it won’t be with him.

  10. Karolyn Lee says:

    I am so in awe of you and the way you are handling your life! You are such a strong person and a great inspiration for me and I know many, many others! Thank you for sharing your very personal life! Keep those books coming. I can not wait for the next one!

  11. Julie Schulz says:

    I was in that room full of teachers. You brought me to tears and laughter all in one lovely talk. We were hanging on your every word. For us, you are a goddess, someone we admire and wish we could meet. To discover the human side of you, and to be honored that you would share your story with us, was an amazing thing. I am the teacher who had you autograph I Like Me for my best friend’s daughter, and she LOVED the book, as I knew she would. I feel honored to be hearing your thoughts. Thank you.

  12. Kendra tlusty says:

    Thank you for sharing your story at our conference, Nancy. Your message of resiliency struck a resounding chord with us all. Your vulnerability and transparency was a gift to everyone who heard your message.

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