MY JOURNEY

Imagination can get you through anything

A few weeks ago, I was stuck inside because the outside temperature showed a minus 30 degrees wind chill factor. And I wasn’t feeling well, so I just sat around doodling.I took a large drawing that I was working on, but wasn’t happy with, and ripped it into doodle-size sheets. I usually just use the back of the used paper, but when I ripped this one up, the front pieces became the perfect backdrop for a doodle or two. I do this all the time, so if you own a doodle of mine, look on the back. You may discover part of a book illustration that did not work out or a piece of fine art that did not make the cut!

On this day of cold, grey skies, I used that beautiful blue-painted scrap of paper to imagine spring. I drew spring from a memory of my favorite trail up north. I loved that new doodle because it took me away from the cold, dark winter day! It dawned me that I have learned to rely on my imagination over these past few years as a way of coping with Barry and his struggles with FTD.

About once a month, I drive through the apartment complex where we were once caretakers. I am not sure why I do this other than some deep psychological motive that I don’t understand. When we worked there as caretakers, it was the very worst time for both of us. For Barry it must have been a nightmare that he couldn’t wake up from. I was always yelling at him because he would not help me with our tasks. He was becoming confused and losing the ability to figure stuff out. We did not know he had FTD at this time. I now admit and take total responsibility for the stupid idea to become caretakers. I had thought we could have a decent place to live, Barry would have a job taking care of the place and I would just help out when I could. But within the very first week of cleaning, it became apparent this was a bad, bad move.
birds
How does imagination come into this sad part of our lives? One morning, we were up at 5 a.m. to shovel the walks. It was a very cold morning, and I felt quite alone as I shoveled the first of 75 walks. Barry was nowhere to be found. After shoveling a few walks, I stopped, leaned on the shovel and looked up at the sky. The stars were out, it was quiet and absolutely beautiful. It reminded me of the winter mornings in Norway I experienced back in the 1970s. Soon my imagination kicked in and I pretended that I was in Lillehammer, Norway, for the rest of the shoveling job.

Later that morning Barry appeared, limping as he came toward me. He had fallen on the ice and hurt his back. Because of FTD, he could not stop himself from falling. Lillehammer vanished at that moment as I yelled at him, “You can’t be hurt! We have no health insurance.” Poor Barry didn’t mention his back again. That winter was long and snowy, but each time I shoveled in those early morning hours, I pretended I was in Norway and it made the job a bit easier. To this day, I draw that same winter sky in many of my doodles. What was such a horrible time also was a beautiful time.

If I didn’t have an imagination during those days of cleaning, I would have lost my mind. Sometimes as I scrubbed a kitchen, the light came in just right and reminded me of Mexico or of a summer day when I was a young girl. And the work went quicker.

After Barry was diagnosed, I came back to live with him in the one bedroom plus den apartment. I pushed my bed against the window in the bedroom and each night I opened the blinds so I could just see the pine tree tops. I imagined myself up north as I looked out at the snow-covered tree tops. Those trees calmed me each night as Barry tried to shower in the middle of the night or made coffee at 3 a.m. I had no idea that when summer finally came that I would not have to imagine myself up north. I would actually be there hiking many trails!

As I did that spring doodle, I realized that imagination and art can really help a person cope, even during the worst of times!  Why do I continue to visit the old apartment complex? Maybe to show myself that it did not defeat me or maybe because I actually have some really wonderful memories of that place — thanks to my imagination!

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19 comments on “MY JOURNEY
  1. You are brave enough and strong enough to take on the whole world. But it’s only this piece that you have to hold. We’re on your team, Nancy. We’ll help you hold it.

  2. Nancy Paxson says:

    It is so inspiring to hear your musings and reflections. Reminds me the benefits of writing thoughts down. I do it so rarely, but think it is a worthwhile thing to consider. Thanks for your honest and open sharings!

  3. Nancy Paxson says:

    It is so inspiring to hear your musings and reflections. Reminds me the benefits of writing thoughts down. I do it so rarely, but think it is a worthwhile thing to consider. Thanks for your honest and open sharings!

  4. Karolyn Lee says:

    I am so impressed with all you have been dealing with and still carry on everyday tasks, talks, workshops, helping Barry and the list goes on. You inspire me plus lots of others that love following your writings. Pam is right…the creative arts do help heal.

  5. Christine bekiares says:

    Thank you for continuing to inspire all of us. A retrospective look can feel cruel, but clarifies our misunderstanding. Now you can forgive yourself too. Like you, it constantly happens to me. Fortunately my husband does not remember my often short sighted response to him. Keep moving forward. So many of us have benefitted from your insights. Hats off to you, Nancy.

  6. Mary Wattson Kupper says:

    Thank you again for sharing your life and thoughts. I wish I had been closer to you to be there for you in all of this. On a side note, my Grandfather was from Lillehammer, Norway. Were you there with relatives as well?

  7. claudine coughlin says:

    Dear Nancy, You are simply amazing at how you can put into words the best and worse times in your life. It would be so wonderful if we could be able to see what is going on our loved ones mind and be able to help them and not frustrate and anger us. I think of lots of times that I was so upset with Tom and his I inability to convey to me what was going on. These are all memories now and I wish I could go back and make apologies.
    Thank you for being able to verbalize what is going on with you and it helps me with my feelings of guilt. Love, Claudine

  8. claudine coughlin says:

    Dear Nancy, You are simply amazing at how you can put into words the best and worse times in your life. It would be so wonderful if we could be able to see what is going on our loved ones mind and be able to help them and not frustrate and anger us. I think of lots of times that I was so upset with Tom and his I inability to convey to me what was going on. These are all memories now and I wish I could go back and make apologies.
    Thank you for being able to verbalize what is going on with you and it helps me with my feelings of guilt. Love, Claudine

  9. Ellen says:

    Love your insights and honesty

  10. Norma Sewell says:

    Thank you. Your comments help me to remember it was not my “husband”, but the “bvFTD” that was creating such trauma in our lives for so very many years. After finally finding a competent physician in the last few years of his life that diagnosed what was happening, and no longer hearing I was the cause of all of the behavior that previously would have been so abhorrent to my husband, it did make the journey somewhat easier. I have read that bv FTD is the “bastard” of all diseases for what it does to the patient and the family and the subsequent guilt you deal with. I spent many, many days/hours with him in the SNF. You think it might be easier after their death. It is not the case. The saddest thing to deal with is after 50 + years of being with someone you have loved, fathered your children, responsibly provided for his family, and highly respected for his strong moral values start to morph into a totally different person. As time progresses you watch them die inch by inch until they are totally unable to do anything for themselves. Then one night you get a call and you are instantly awake and you know what the message will be. Your whole life turns upside down. Thank you for sharing your journey. It gives courage to all that have had to travel that terrible journey. One thing we did was to have a sign that if we squeezed hands it meant “I love you”. He always knew that meant.

  11. Lee Freeman says:

    What a wonderful and peaceful piece of writing. You are such an inspiration to me!

  12. Lesley Jones says:

    Dear Nancy, Dear Norma, does the pain and the guilt pass with time? Does watching this filthy disease destroy a beautiful brain in a beautiful husband get any easier? Is it possible to be any more alone while people make the right noises and the vultures circle. How can you make up for the times when you didn’t understand what was happening and you became a monster. Does he remember. Will he forgive me. I admire your strength and the beauty of your words and your dreams for your future. I see no future for myself so I hope yours will be a long and happy one.

    • Norma Sewell says:

      Dear Lesley, I so understand your pain and the guilt. I have read enough about bvFTD to know that is part of what you are left to deal with. There were many classic bvFTD characteristics that we dealt with and did not know what was going on. It is going on two years since my husband died. My honest answer is that it does not hurt any less, it may hurt slightly different. You think after they are gone it will be easier, so far I feel it is harder – there is a finality that you can’t escape. I so miss the sense of touch. One struggle is to really and truly remember that the “damn bv FTD” was not your real husband – easier said than done so very many times. I do have many letters, etc. in his handwriting that talks about his love for me. After fifty-two years with someone that could be the “wind beneath your wings” you just don’t “move on” as if everything is just grand after they have died. I try to keep myself busy and exercise, but the tears are always there. The one thing that helps me is my Christian faith. I do know that he is sleeping, but on that wonderful Resurrection Morning there will be no more tears and all things will be made new. I have spent much time reading the Bible. I know if you can find someone to talk with it does help. For anyone that has not experienced this they do not understand, and most feel it is now history so why talk about the one you lost. Similar to trying to explain what it is like to give birth. If I can help you in some way, let me know.

  13. Mary Beckman Woodward, says:

    This was another masterpiece, Nancy! Thank you.I too found solace in trees , vistas and lakes. After Harry got ill, was hospitalized , in nursing home rehab and courage center, I needed to feel the sheltering arms of our cabin and feel the breeze of Lake Superior. I must have had temporary insanity. I convinced myself this would be good for Harry. So I packed his clothes, meds, bandaids, diapers and we were off to what I envisioned would be a healing adventure. He couldn’t wander off our deck. We unpacked at the cabin. I put on wonderful music. I laid out drawing paper, colored pencils and his camera. This after all was where we did research and wrote 3 long books. Well Harry just sat there. Unaware of the trees , birds, the lake in the distance , the wonderful woodsy smell. We went to bed early. I blew up the extra aero bed and positioned it so he would have to climb over me to get to the great room and outside. It worked pretty well. The next day I decided to tend my large area of trees- some saplings. I took Harry and we opened the fence I had put up to protect my trees from deer. I got him inside my orchard fence. Put him down on a blanket and moved from tree to tree. In a while I was about 30 feet away in the fenced area. Then I saw one of the trees wildly moving. I dropped everything. Did a bear get in the enclosure.? But as I approached the moving tree I saw Harry convulsing on the ground. Now what to do?I couldn’t leave him to go to the cabin and phone. So I waited while I tilted his head and prayed. I knew seizures looked scarier but weren’t serious generally. I waited about half an hour to 45 minutes Till he was able to slowly get up and lean on me.. We slowly made it to the cabin. He had soiled himself. So I took his bottoms off outside and we went inside. I put him to bed . I tried to call our good friend from house church who’s an MD , whose place was 2 miles from ours. No one answered. I let Harry sleep after giving him meds. I took my lunch, went out on the deck , tried to meditate and soothe my jangled nerves. I breathed, drank in the beauty of the dancing trees and the big lake. I then wrote some , checked on Harry, listened to music and read. I had for some reason ( it was a lot of work getting Harry in and out of cars and into restaurants) picked up extra meals when we had breakfast. So I got Harry up and fed him. He ate half. I put foil around the remaining food and put it in the refrigerator. In about an hour it was time for his meds. I went in the bedroom to get them. In the meantime Harry got his foil rapped sandwich and put it on a plate and turned the microwave on. I came out with his meds just in time to see him take a burning foil sandwich and throw the flaming sandwich out the door. When to my
    horror I saw shooting flames leaping up and spreading on the ground. I ran grabbed 2 gallons of water and an old blanket and suffocated the fire. This was a trip from hell. Our wonderful peaceful sanctuary had dangers now lurking around every corner.. Should I try yo get Harry in the car.? And drive home dead tired ? Or should I wait till dawn. ? I waited till morning , gathered as much as I could. And I drove the 4 hours. When I got Harry to bed I sat and sobbed. I knew our artsy dream place was forever lost to both of us. Harry did get up there one more time. A dear former student of mine came from Washington and took us up. We even got to go on Lake Superior. I knew Harry would never be back . He was oblivious . I think my student did it for me so I would have good final memories of Harry at the cabin and some closure.. I would only be able to do day visits till Harry went in the nursing home.at first it was odd- being all alone, but I came to love the freedom and peace , the earthy pine smells, the fog rolling in, , the Eagles soaring and the trees moving to the wind gusts. On the 3rd visit alone up there, I took my freedom back. I made a ritual as I
    Left the city, I left all the worry baggage at the curb In minneapolis . I could compartmentalize my life. I was free up north. I could be creative up at the cabin! I could breath freely uo north. The craziness of our
    life with Harry deteriorating every day , just seemed to float away the closer I was to the cabin.i was climbing out of the all encompassing affects of the brain disease on all of us and learning to once again take in the healing of wind, water , trees and trust. My soul was emerging from the long nightmare.thank you Nancy for forcing me to relive some of the memories your wonderful images portray. Love, Mary

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