Monday, January 16, 2017

The Fierce Urgency of Now

Yesterday, I watched the Kansas City Chiefs play the Steelers in a playoff game. Any year the Chiefs made the playoffs, we fans were hopeful that the Chiefs would make it to the Superbowl. We always hoped we wouldn’t be disappointed—again.

During commercial breaks, I watched other fans’ reactions online. About the time I realized the Chiefs were going to fall to the curse of their playoff games, a photo of a youthful Jim popped up on my Facebook newsfeed.

Jim was the sole reason that I became a Chief’s fan. Through winning seasons and losing seasons, he was steadfast in his loyalty. During the early years of our marriage, Monday night football was opposite the movie of the week. With one TV set, I never watched a single movie during football season.

Although, it seemed magical that Jim’s photo appeared on my phone just as I was thinking of him, I scrolled past other old family photos. Jim’s cousin Debbie had decided to make an online album of old family photos, and I assumed she had posted the photo. I downloaded the photo and added it to my own online album of Jim’s pictures.

“Can I steal this for the Fisher album?” she asked.

“I just stole it myself. That’s where I thought it was,” I replied.

It didn’t take me long to figure out that my nephew John had posted it.

Seeing Jim’s photo put a lot of perspective in my outlook, and reminded me of the real urgency of now. When he was diagnosed with dementia of the Alzheimer’s type, my goal became to do anything possible to change the outcome.

The urgency to do something, rather than patiently wait for the inevitable, was part of my nature. I trolled the internet looking for anything to stave off a degenerative, fatal disease. I tried to get Jim enrolled in drug trials. He was turned down for one trial because he was too young and for another because he had lost the ability to communicate.

I began to go to the Alzheimer’s forum to advocate for more research dollars. I saw the urgency to find a cure in the eyes of caregivers, and my heart hurt for them. I felt their pain and knew the disappointment of hearing a doctor say, “Even if they find a cure, the disease is so far advanced that it’s too late for him.”   

As the years went by and the disease won, I continued my advocacy, as have many others who lost loved ones. We all share the same hopes and dreams—a cure for Alzheimer’s.

I recently read the “I Have a Dream” speech Martin Luther King, Jr., delivered at the Lincoln Memorial in 1963. Although his speech was loaded with quotable sentences, one phrase caught and held my attention. King spoke of “the fierce urgency of now.”

Many of us won’t step out of our comfort zone to fight for our cause with the conviction of Martin Luther King, Jr. Most of us anonymously fight our fight. Some of the rich and famous meet the challenge as they or their loved ones discover Alzheimer’s when it strikes close to home.

Just this week, I learned that the former head coach of the Kansas City Chiefs Marty Schottenheimer has Alzheimer’s. This too, helps me put the Chief’s loss into its proper perspective. Next season, the Chief’s have a new start and a chance to redeem themselves.

As far as Alzheimer’s, there are no second chances. With more people dying each day that passes without a cure, we have the “fierce urgency of now” to end Alzheimer’s.

Copyright © January 2017 by L.S. Fisher

Sunday, January 8, 2017

Choices, Chance, and Monopoly

A few weeks ago, my grandson went to the closet where we keep our games and came out with a vintage Monopoly game. I hadn’t played the game since I was a kid and sure didn’t remember anything about it or the rules. My grandson gave “money” to Harold and me and the game began. It turned out to be a game of choices and chance. The roll of the dice could give you a chance to purchase properties, pay rent or taxes, draw a “chance” or “community chest” card, or maybe “go to jail.” It didn’t take long for me to find out what the expression, “do not pass go,” meant.

My son, who was watching us play, noticed something rather peculiar. “Mom, you are being so cautious about what you spend, and Harold is buying without a second thought. That’s totally the opposite of how you are in real life.” I had to agree.  

Spending habits aside, the game made me think about how each of us has a monopoly on our own destiny. Have you ever stopped to think how much your life would be affected if you had made one major choice differently than you did? Or what if that lucky break hadn’t come your way?

Chance can put us in dangerous situations. Decisions can lessen the danger or increase it. How often have you heard someone say, “If that had happened to me, I would have… (blah, blah, blah).” One thing I’ve learned in life, no person will ever know what he would do in someone else’s situation. I don’t have a clue why they react the way they do, because I have not lived the same life.

In my own life, I met Jim by chance, chose to marry him, and chose to work at it. Dementia cut his life short by chance, and I chose to become an Alzheimer’s volunteer, which brought about a major change in my life. I’ve gone places I would have never gone, had experiences I would not have had, and found friends I would have never met.

Who we are and what we’ve become is a conglomeration of choice and chance. Sometimes, we might not even distinguish the difference. Have you ever noticed how many of us go to college and never work in the field we studied? Sometimes, that’s choice and sometimes it’s chance. Maybe we couldn’t find that special job we wanted. The winds of chance did not blow in our direction. Sometimes, we just grow older and decide that wasn’t the career path for us.

At one time, I wanted to be a teacher. Then, I wanted to be a journalist. What really happened was I became a mom and stayed home with the kids while they were little. My first real job after returning to college was in subscriptions at a coonhound magazine. Believe me, I never saw that coming!

After that company moved out of town, I, by chance, was selected to interview for a job on a computer. You have to realize that I had never seen a computer, much less used one. I chose to believe that it was something I always wanted to experience. That choice changed our family’s economic situation. Up until then, we had spent several years living frugally and still barely getting by.

Nine years after Jim passed away, I chose to remarry. So, here I am, in this house, in this room, at this table, working on this PC because of a lifetime of choices and by chance. It’s a scary thought that my destiny would have changed if I had made one different decision along the way. Yes, I have a monopoly on my life. No one else will ever have the exact experiences or make the same decisions I have made.

On the other hand, I’ve always had a feeling that the choices and chances I took were meant to be. I seriously doubt that I’ve always made the wisest or even most logical choice. My decisions have been good, bad, and ugly, yet somehow, in the end, it worked out.

I believe I’ve often been “nudged” along the right path. My path.

Copyright © January 2017 by L.S. Fisher

Friday, December 30, 2016

Resets and Do-Overs

Each January, we greet the New Year with optimism that we will experience a whole lot of “happy.” Somewhere in the recesses of our brain, we seem to think putting up a new calendar magically starts everything anew.

How we felt about 2016 may depend on how we look at life in general. If we accept the ebb and flow as a natural part of the tides of life, we probably didn’t see a lot of difference from any other year. Some of us, in any given year, have major life events that will forever distinguish certain years no matter how much time passes.

Other than those special years—graduation, marriage, births, deaths, etc.—the years of my life just blurred together. In retrospect, I couldn’t even tell you which years were good years and which were bad unless some exceptional event set it apart from others.

Jim was the most amazing person I ever knew when it came to dates and years. I believe his ability to remember his past so distinctly was because of his phenomenal memory coupled with living in so many different places throughout his lifetime.

I had hoped that 2016 would be the year when a breakthrough in Alzheimer’s would make this a red-letter year. Although, we’ve had successes, we are still short of the prize. This year saw a historic increase in Alzheimer’s research funding, and that increase holds a prayer and a promise that we may be on the cusp of the ultimate discovery.

Personally, this year held failures and successes. I lost an election, won a prize, finished some projects, and plodded along with others with no end in sight. I’ve been blessed with generally good health, with only a few minor setbacks. I’ve made several new friends and lost a few.

On the positive side, I learned how to line dance this year. I helped with my brother’s memoir, and I’m so proud of him and my sister-in-law for bringing his story to life. I’ve made many, many happy memories and found several dashes of humor in the world around me. I believe, I’ll give 2016 two thumbs up.  

Oh, is this when I should be thinking about resolutions for 2017? Will we ever learn that the all or nothing nature of resolutions sets us up for failure? I recently read that a paltry 8% of people are successful when it comes to resolutions. I’ve long been a fan of goals rather than resolutions.

Healthy Living recommends “resets” instead of resolutions. The point is that instead of attacking resolutions like gangbusters (my term, not theirs) on January 1, just to give up when you break it, reset each day. So you didn’t cut out all sugar on January 2 per your ambitious New Year’s resolution, simply reset on January 3, and try again!

Jim and I used to call that “overs.” When something didn’t work out the first time, we allowed do-overs.

In 2017, I would like to wish you a multitude of resets and do-overs to help you achieve your goals and to follow your dreams!    

Copyright © December 2016 by L.S. Fisher

Sunday, December 25, 2016

The First Day of Christmas

I recently watched a Christmas movie where gifts from the song “The Twelve Days of Christmas” arrived at a home prior to Christmas, with the final gift and message arriving on Christmas Day. While searching for the name of the movie, which turned out to be My Christmas Love, I came across two other Hallmark movies based on twelve gifts of Christmas.

The interesting thing I discovered during Christmas services this morning was that Christmas Day is the first day of Christmas, which means that I’ve always had the entire gift-giving thing backwards. I guess I’m not alone since Hallmark has it wrong too. I think we all assumed it was a countdown to Christmas in the same manner as advent.

So, on this first Day of Christmas, I can’t help but remember the Christmases past. In so many ways, the passage of time lies in our memories of white Christmases, balmy Christmases, blue Christmases, indifferent Christmases, bittersweet Christmases, beleaguered Christmases …well, you catch my drift.

My memories of Christmas fit all of those. I remember being worried as a kid that Santa couldn’t come unless there was snow on the ground.

The Christmas when I was 18, I spent fifteen minutes of Christmas day with my new husband. That was one of those blue Christmases as I headed home, and he headed back to Vietnam.

I remember many Christmases as a new mom, worrying whether “Santa” was going to be able to afford a decent Christmas for my kids. It seemed we always managed, and we let the kids open their presents on Christmas Eve to leave Christmas day open for the big dinner.

Since we spent Thanksgiving with my family, we always spent Christmas day with Jim’s family. Virginia would cook a huge meal and everyone was invited. We’d cram into her small house and on those “balmy” Christmas days, the overflow would go outside and eat Christmas dinner on the picnic table. The day would be full of joy, hugs, laughter, and love.

After the kids were grown, we had our family get-together on Christmas Eve. When my youngest son was on-call for his work, we just started having it on a Saturday before Christmas. We’ve just been flexible about it. Christmas Eve is my granddaughter’s birthday, so by moving our family gathering, she can celebrate her special day at home.

For the decade of Jim’s dementia, Christmas was bittersweet. I saw each Christmas become more and more disconnected from the traditional Christmases of our past. One year as I was clearing a shelf to decorate, I boxed up some of the framed photos that sat on the shelf the rest of the year. Jim silently pulled the photos out of the box and set them back on the shelf.

After Jim went into the nursing home, I brought him home for Christmas the first and second years. It went pretty well, but it was certainly different. After that, I spent Christmas day with Jim at the nursing home. After I came home later in the day, I usually missed most of the people who had come to Virginia’s house for Christmas dinner.   

Since Jim’s death, my Christmases have been a hodgepodge, but most would not be considered “traditional.” Still, in a way, they are somewhat traditional for me. All the hectic celebrations are out of the way by Christmas day. It has truly become a holiday from obligations for me. And that isn’t all bad. I love to light up the trees and enjoy the peace and quiet. It’s a great time to reflect on the good times and to count my blessings.

Since the twelve days of Christmas do not end until January 5, I suppose I should leave up my Christmas decorations until then. Whew, that takes off some pressure. I usually plan to take them down the first day of January, but now I have a reprieve. After all, we should celebrate all twelve days of Christmas, don’t you think?

I will also count myself as one who does not judge the people who leave their outdoor lights glowing until January 5. After that, seriously, shouldn’t you shut them off?

Copyright © December 2016 by L.S. Fisher

Tuesday, December 20, 2016

Predictable and Unpredictable

I’ve watched several Hallmark Christmas movies lately and if there’s one thing that can be said for them—they are predictable. Even Harold who isn’t a fan had watched a few minutes of a show a few nights ago.

“Well,” he predicted, “she isn’t going to end up with the guy she’s dating at the beginning of the show—it’s going to be that guy she just met.”

“I can usually tell within the first few minutes who will be a couple at the end. These shows almost always end with a kiss, and a happily-ever-after.”


When I went to bed that night, I opened a Nicholas Sparks’ book. I told Harold, “You know, this book is predictable too. One of the main characters always dies in his books.” And, by the time I finished the book, sure enough. Death happened.


I haven’t figured out why I’m watching Hallmark movies or reading Nicholas Sparks when I’m a big, big fan of unpredictable stories with an unexpected twist at the end. Maybe these little happy movies and tearjerker books just let my mind go on autopilot rather than think about the unpredictability of life itself.

Sometimes we reach a point in our lives that we think yesterday was predictable, today was predictable, and tomorrow will be predictable. It’s about that stage in our lives when the unpredictable can throw us into a tailspin. Complacency never lasts forever, and a split-second can change your life forever.

The only predictable thing about life is that it is unpredictable. Nobody, but nobody, makes it through this world unscathed. What really matters is how we handle adversity.

In the first place, Hallmark movies aside, no one outside of a fairy tale, lives happily ever after. A kiss, or getting married, isn’t the end of a story; it is the beginning. When you utter the words, “for better or worse” and “in sickness or in health” you are uttering them for a reason.

The greatest test of traditional wedding vows is whether your love is strong enough to withstand the unpredictable—hard financial times, disease, heartbreak, accidents, death of a dear friend or family member, or even affluence at the expense of family time.

On December 20, 1969, I exchanged these promises with Jim. We didn’t have any idea what the future held for us. We were young and in love, so we took a chance. Life is unpredictable, but whatever it threw at us, we were in it together.

I believe the most unpredictable thing was that my level-headed, intelligent husband would develop dementia at forty-nine. Not only unpredictable, it was unimaginable, which is saying a lot for a person with my imagination.

Still, I wouldn’t have wanted to know on that day in 1969 that it would end the way it did. I’ve always been the kind of person who would never give up on life or happiness no matter what. I hope that never changes as long as I breathe.

Recently, I visited the cemetery to put a poinsettia in front of the columbarium wall beneath Jim’s marker. As I touched his name, a sharp wind blew causing my eyes to water. Well, at least I blamed the wind. When I climbed back into my car, I wiped the tears, and drove away to continue driving the unpredictable road of life.

Copyright © December 2016 by L.S. Fisher

Thursday, December 15, 2016

Indelible: Memoir in Progress

Lately, I’ve been posting some short passages to Early Onset Alzheimer’s blog from Indelible, a memoir in progress. Several people have asked me when I will finish the memoir, and the short answer is “I don’t know.” I believe I can have it finished by this time next year, but there are no guarantees.

I began putting the memoir together in 2008, but the source documents date back many years. I began documenting Jim’s health from the time I first noticed something was terribly wrong. This document was extremely useful when we began the physician circuit looking for answers. Did you notice that you have to fill out forms for every doctor you see? It was much easier to answer the questions when I knew the answers.

“Wow!” One nurse said when I handed her Jim’s health questionnaire. “I don’t know that much about my own medical history.”

“I don’t know that much about mine either,” I admitted.

In addition to capturing emails where I kept friends and family updated on what was going on with Jim, I transcribed a collection of audio tapes. I kept the recorder in my car and as I left the nursing home, I talked about how things were going at the home, with Jim, and often the humorous antics of the residents.

I started each tape with the date: “It’s October 15, 2004, and I’m on my way home…” By the time I heard my voice saying the date, I would know whether it had been a good day or a bad day. Often I’d say, “I’m just so tired.” It seemed like I never had enough hours in the day and that I sacrificed sleep to get everything done.

When I pulled all this information together, I had an unwieldy documentary of our dementia journey. Every time I sat down to work with the raw material, I became overwhelmed. The enormous task of weeding through the minutia to uncover the story was part of the problem, but the biggest problem was dealing with the emotional blow of re-living the most heartbreaking years of my life.

In January 2008, I decided to begin a blog dedicated to early onset Alzheimer’s. My first blog post, “The Indelible Mark” was an epiphany brought on by a dream.

What does an indelible marker have to do with dementia? When someone we love has Alzheimer’s or a related dementia, we often think they are fading away as their memories and skills are erased. We grieve for the past and dread the future. Yet, we are blessed with living in the present and find moments of joy radiating in the midst of an ordinary day.

When Jim developed dementia at forty-nine, we knew life would never be the same. Our memories eventually became my memories. The disease stole Jim from me, but it could not steal the indelible mark he left behind.

Alzheimer’s Anthology of Unconditional Love are indelible images of Jim. In one picture, he smiles from beneath his favorite Stetson. In the other, he walks away from the camera on a beach in Oregon. I can’t imagine his indelible memory living in a happier place.

This short blog post was the beginning of telling Jim’s story in a manageable way.

Helping edit my brother’s memoir Sanctity inspired me to go back to work on our story. So I pulled up the rough draft and began working my way through it.

I am in a better place to work on the manuscript now. Enough time has passed that I can handle the emotional baggage—most of the time.    

Copyright © December 2016 by L.S. Fisher

Monday, December 12, 2016

Excerpt from "Indelible": Happy Anniversary

Excerpt from “Indelible” (memoir in progress): 

“I brought balloons for our anniversary,” I said, and he smiled. One had a yellow smiley face with kisses on it, and the other said “Happy Anniversary.”

“Today is our twenty-fifth anniversary,” I said. “We sure were young then.”

He looked at me like he didn’t have a clue what I was talking about, but he liked the balloons. I put the balloons close to the fiber optic tree I bought him earlier in December.

Jim leaned back in his recliner and turned his head to watch the tree. He looked at the tree, the balloons, and then at me as if he wanted to say something. He moved his mouth like he was going to talk, but no sound came out.
I sang some Christmas songs to him and he seemed to understand what I was singing.

“I’m trying to get him to say Rudolph,” I told the aides when they came in his room.

“If you get him to say ‘Rudolph’ we will bow down to you,” one of them said.

The aides left and two of the residents came in with the name cards from their dinner trays. They handed the cards to me and one of them said, “Will you take our tickets so that we can get a room tonight?”

“You already have a room,” I said.

 “No, we don’t have rooms, but we have tickets,” she said, “We just need to figure out who to give the ticket to.” I handed them back their “tickets” and they wandered away in search of someone who would give them a room for the night.

An elderly gentleman walked down the hallway, stopped in the doorway, and said, “Hello ma’am. How are you? Merry Christmas!”

“Merry Christmas!” I said.

“All I want for Christmas is a Cadillac,” he said.

“I guess we could all wish for that for Christmas,” I said.

“Good night, Ma’am!” He turned around and headed back the way he came from. I didn’t recognize him and had been trying to decide if he was a visitor or a new resident. He was dressed a little oddly, but seemed with it intellectually. I thought that maybe he was a resident by the way he stopped, turned around, and went back.

I began to feed Jim, and he ate pretty well, but he choked when I was about finished. I stayed for a while longer to make sure he was okay. I put his recliner in a more upright position and moved the balloons and card to his tray.

Jim was looking at the balloons. I was surprised they had held his attention that long. At least he was looking at his surroundings. Sometimes he wouldn’t look at anything.

I kissed him goodbye. The lump in my throat made the words come out in a whisper, “I love you sweetheart. Happy anniversary.”

Copyright © December 2016 by L.S. Fisher

Sunday, December 11, 2016

Excerpt from “Indelible”: Christmas 2003—Snowdrift Memories

Excerpt from "Indelible" (Memoir in Progress): 

I gave Jim a bath before I fed him. When I took him back to his recliner, he fell asleep, tilted, and fell. He finally started taking steps even though he didn’t seem to wake up. He finally woke up when I put him into his recliner.

 I had planned to take down his Christmas tree, but the box was still in the car where I had forgotten it. The rain pelted against Jim’s windows, and I dreaded going back outside.

As I spooned his food, I talked to him. “Well, I’m not going back out in that crap to get the box for the Christmas tree.” Jim’s eyes moved toward the tree. “I guess you’ll get to enjoy it one more day.”

Since Jim had been in the home, the only thing that kept me off the roads was snow drifted so deep I couldn’t drive on the gravel roads. The roads drifted depending on which way the wind blew. If the roads running east and west weren’t drifted, then the roads running north and south would be.

I could remember a time when I wouldn’t dream of driving on wintry roads, but then, I didn’t have to drive when the weather was bad. Jim used to drive me to work when the roads were slick. It seemed that the worse the roads, the more he wanted to drive on them. He called it “busting the drifts.” Driving a four-wheel drive wouldn’t have been half the fun of traversing treacherous roads in our old two-wheel drive cars, pickups, or vans. We had been stuck in many snowdrifts.

One morning, several years ago, Jim and I headed off to work in our baby-blue Ford van. Jim  navigated the drifted snow like nothing was wrong. We drove past his brother’s house, and we could barely see the tracks Billy had made on his way to work. Snow was still falling and high drifts had formed on the section of Sinkhole Road that headed north.

We slid and plowed through the snow until we came to a standstill in a drift.

“Guess, we’ll just have to go back,” Jim said.

“When we get home, I’ll call and tell them I’m drifted in,” I said.

Jim threw the van in reverse, but it wouldn’t budge. There we sat in the middle of the road, giant flakes of snow falling in the predawn hour.

“We might as well walk back to Billy’s,” Jim said.

“Okay,” I said, grabbing up my purse and lunch. I tried to force open the van door, but it was pushing snow.

I slammed the door. “I’m not going out in that! The snow is up to my knees, the wind is blowing, and it’s like a blizzard out there.”

“Well,” Jim said, picking up the thermos and pouring two steaming cups of coffee, “We’ll just wait here. No one can get past us without helping us out.”

Smiling at the memories of being stuck in snowdrifts with Jim, I pulled a blanket over him and reclined him in his chair. Jim turned his big blue eyes toward me, and for an instant, I was looking into the eyes of the man Jim used to be when he was my lover and my best friend.

“Goodnight, sweetie,” I said, kissing him on his nose. His eyes glazed over, and he seemed to be looking through me. Robotically, he turned toward the TV, and its dancing lights and music grabbed his attention.

Copyright © December 2016 by L.S. Fisher