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Monday, December 29, 2014

The Broken Road

Broken Road - Photo by Jimmy Capps
As another year winds down, I find myself reflecting on the past year, and the years before that, and how I’ve arrived at this time and place. Have you ever stopped to ponder the small events  that shape our entire lives? The positive influences: a chance meeting, an unusual connection, making the right choice, joy, success, birth, and random acts of kindness. Life isn’t all smooth traveling. We have negative forces at work: accidents, disease, heartbreak, betrayal, deceit, failure, and death.

Everything that happens in life shapes who we are. The choices we make determine the quality of our very existence.

This year the broken road has climbed some high peaks and traversed through some deep valleys. I’ve lost loved ones this year. Most recently a cousin to a lingering illness, a niece to an unexpected death, and today my sister-in-law’s mother died from Alzheimer’s disease.

Life is tainted with a special type of sadness when a loved one is afflicted with dementia. Even with our small successes in Alzheimer’s legislation, this awful disease is still without a cure or effective treatment.

Alzheimer’s changed the course of my life. It took away the man I’d shared my life with, changed the color of the sky, and the taste of the air. It left a hole in my universe. Snapped away all my plans and dreams and left me with a different destiny.

It’s hard to believe that Jim died nearly ten years ago. I’m still sorting through a lifetime of mementos, and my heart breaks when I find one of Jim’s favorite shirts, a guitar pick, an old pair of glasses, an outdated drivers license—things that he once touched, used, or cherished. Old pictures memorialize slices of our lives, and stacks of videotapes provide a record of vacations, jam sessions, or a mundane day with a conversation long forgotten. The loss ambushes me from time to time.

But just like others who lost loved ones, I found more strength than I ever suspected lurked within me. Basically, when life crumbles, you have two choices: quit or move on. I like to say that I’m not a quitter so the second choice was a natural one for me. I conquer another piece of the broken road. Life goes on and life can be so good, sweet with many more smiles than tears.   

I had some major life changes this year—retirement, marriage, living in a different home, publishing two books, and watching time blur by and recede into the past. I have much to be thankful for as most of my family keeps on keeping on without missing too many beats.

When I think about life and all the “stuff” I’ve accumulated—toys, possessions, collections—it becomes clear that the important things in life can’t be bought. It is the intangibles that make life worth living: attitude, love, happiness, faith, hope, family, health…

To move forward in life, I can’t keep looking back at what once was, but must anticipate what is yet to be. After all, everything that happened along the broken road is imbedded in my memories, and seeped into my DNA. I’m comfortable with who I am and where I am at this stage of my life.

Today at the post office I saw a former co-worker. In fact, he was picking up the company mail. “Looks like retirement suits you,” he said.

“I love it!” I agreed. There’s something totally liberating about choosing what to do and when to do it. Oh, sure, I still have commitments and appointments that I keep, but most of my day is what I choose it to be.

“What are your plans for today,” Harold often asks me when we first wake up. He is a planner, I’m a seat of the pants type of person.

“I plan to drink this cup of coffee,” I say.

“Then what?”

“Drink another cup.” One thing I know—until I’ve had my coffee, I don’t want to think about the day beyond this moment, much less plan it. Besides, instead of spending time and energy to make plans, I’d rather be moving on down the road toward my destiny.


copyright © Dec 2014 by L.S. Fisher
http://earlyonset.blogspot.com

Monday, December 22, 2014

Some Days Are Sad

I’m an optimistic person and would classify myself as happy—at least most of the time. Yet some days you get an early morning phone call that seems to just make the earth tilt a little different. I got one of those phone calls Friday morning.

I turn my phone’s sound off at night because the whistling, dinging, and notifications interfere with my sleep. Once I discovered the alarm still rang with the sound off, I just automatically turn it off at night. So when I heard the phone buzz, I picked it up trying to figure out why my alarm was silent. It wasn’t the alarm malfunctioning, it was a phone call from my son with bad news.

My forty-seven year old niece Krystal had passed away in the early morning hours. Shocking, unexpected news. Devastating news. The kind of news that can suck the air from your lungs. A cherished family member gone. Just gone. Forever from Earth.

My sorrow at losing a beloved niece cannot even compare to the crushing blow this was for her parents, husband, children, siblings, grandchildren, and those privileged to be in her inner circle. It was a big circle because Krystal had a loving heart and a gentle nature.

Today was her funeral. Three days before Christmas, and what? The hap- happiest time of the year? No. Hundreds of people gathered together to remember Krystal, honor Krystal, and to lay her to rest.

As the photos on the PowerPoint transitioned, we saw Krystal as a little girl, a teen-ager with big hair, in a beautiful white dress on her wedding day, cuddling her baby, with her family, turn around, turn around. Krystal with her little smile, sparkling eyes, and quiet sense of humor. I had watched her grow up in real time and the photos were fast-forwarding through the years.

When most people can’t find time to join one church, Krystal belonged to two. One a traditional Lutheran Church and the other a more modern non-denominational church. Both pastors, one traditional, and the other quite unconventional both spoke of the woman they had grown to depend on and cherish.

After words of comfort and prayers, we queued up with a long line of cars to go to the cemetery for the interment. After the long drive, we huddled beneath umbrellas as the rain began in earnest, shoes sinking into the soft earth. We shared umbrellas, coats, hugs, and sorrow as the rain beat down and we prayed the Lord’s Prayer.

We went inside the church to share a meal and comfort each other. To share the sorrow. As I talked to Mike, he said, “You know what it’s like, Aunt Linda.” I do know what it’s like to lose a beloved spouse. It’s like losing part of yourself. An unfillable void. “There are no words,” he said. I couldn’t agree more.

I know the pain of losing a parent, and the crushing blow of losing a brother. I do not, thank God, know what it is like to lose a child. We all want our children to outlive us. I can’t even imagine the heartache a parent feels at a time like this.

There’s no amount of optimism that can take away the sadness. Even a belief that those who have gone before us are rejoicing in Krystal’s rebirth, she’s not here with us. We sure would have liked to have kept her a whole lot longer.

Some days are just sad, and the rain keeps falling. There are no words.

copyright © 2014 by L.S. Fisher

        

Tuesday, December 16, 2014

MRI: Aligning Your Molecules

Magnetic Resonance Imaging (MRI, to most of us) is a way to use your own body composition to analyze what’s going on inside you. A strong magnetic field aligns the hydrogen protons in your body and then radio waves knock them out of their aligned position. I’m not ashamed to admit that knowing my molecules are being messed with kind of gives me the heebie-jeebies.

MRIs are a great diagnostic tool and a way to detect cancer or the brain damage from dementia. When Jim had an MRI, they had to sedate him because of his claustrophobia. In fact, during one test, he pushed the panic button, and they took him out of the machine. It was the results of an MRI that let us know that Jim had brain atrophy.

I recently had an MRI to determine the cause of numbness in my fingers and pain in my arm. Based on the data gained from the tests the neurologist ran, the culprit seemed to be in my spine. The best way to look at it—an MRI. Surely, that couldn’t be as bad as needles poked into me at random places.

This was my second MRI. The first was about two years ago. I suffer from occasional bouts of vertigo that causes severe vomiting for the first day or two. I can’t walk without help because I feel like I’m on a ship caught in the middle of a hurricane. I went to the emergency room, where they performed an MRI to rule out a brain tumor. Thankfully, the MRI was negative—or as I described it to my family, “negatory” on the brain.

I don’t remember much about that MRI since I was a little out of it. It was a blur. I did remember the part about not having any metal, so in preparation for the latest MRI, I carefully removed my earrings and my rings before I left home. When I looked at my hands, I noticed my glittery metallic nail polish. Could the polish have enough metal in it to make a difference?  I was unsure, so to be on the safe side, I removed it. The bad thing was the ruby color came off, but I could still see metallic sparkles on my nails. Suddenly, I became obsessed with removing it. I did another round of polish remover, but the sparkles just seemed to shine brighter.

Okay, now what? I have a super-duper nail buffer that will remove anything. The trouble was, I wasn’t sure where to find it. It wasn’t in the tray where I keep my polish and other nail paraphernalia. So the hunt was on. Harold suggested it might be in my travel bag. Sure enough there it was! With a good buffing, all the metallic glitter was gone.

At the hospital I changed into a gown and they got me as comfy as possible on the narrow hard bed as they readied me to slide me in the tube. “What kind of music do you like?” the tech asked me.

“Soft rock,” I replied. They plugged my ears, put a thick cloth over my eyes, and placed the headphones on. They placed a “panic button” in my hand in case I needed to get someone’s attention.

“Would you like a warm blanket?” she asked.

“Sure,” I replied.

After I was all situated, they slid me into the machine and the clanking began. I knew to hold perfectly still because that was important. I forgot to ask how long it was going to take. I thought maybe ten or fifteen minutes. I listened to song after song as the machine clanked and hissed.

Suddenly, I noticed the hair on my head seemed to be moving. Even my eyelashes were being pulled. I thought about freaking out when my cheeks felt like they were being lifted, but I held out pretty well until my nose started itching. It can’t be much longer, I thought, as another song began. Just then, the machine sounded different. Whew, must be winding down. But no, it just seemed to start all over again.

Finally, by the time they pulled me out, I had stopped being hopeful when the machine quieted down. I didn’t realize I was out of the machine until they removed the headphones and took the cloth off my eyes.

“How long did that take?” I asked.

“Oh, about twenty-five or thirty minutes.” Sometimes it’s better if you don’t know how long something is going to last.

And to make matters even better for me, I never read about how my water molecules would be used to create a signal that would be processed to form an image of my innards. The magnetic coils are turned on and off which creates the noise of an MRI. The sound of the machine can be equivalent to a jet engine at take-off, hence the ear protection.

I guess MRI’s are pretty miraculous and it’s a whole lot better than the exploratory surgery they used to do to find out what was going on inside. But still, it’s a pretty weird experience and not one I’d want to do again soon.

Copyright © by L.S. Fisher Dec 2014

http://earlyonset.blogspot.com

Wednesday, December 10, 2014

Alzheimer’s Advocacy at Work

For many years, I’ve been an Alzheimer’s volunteer and advocate and have attended the annual Advocacy Forum in Washington, D.C. for fourteen consecutive years. Because of my advocacy on the national level, the Greater Missouri Chapter asked me to be an Alzheimer’s Ambassador, to Congresswoman Vicky Hartzler and I gladly accepted.  

Yesterday, I received an email from Harry Johns, Alzheimer’s Association CEO, sharing good news about Alzheimer’s legislation. Congress has incorporated the Alzheimer’s Accountability Act into the Fiscal Year 2015 Omnibus Appropriations Bill. The proposed $25 million increase in Alzheimer’s research demonstrates our legislators’ focus on finding a cure for Alzheimer’s disease.

Why is the Accountability Act so important? It will require the NIH to submit an annual budget to Congress and the President. This budget will specify the necessary funding to reach our goal of finding effective treatment or a cure by 2025.

The Accountability Act has been a top priority for the Alzheimer’s Association and its sister organization, Alzheimer’s Impact Movement (AIM). My sister, Roberta, and I joined 900 other advocates to carry the message to Congress last spring during the Advocacy Forum.

Harry Johns says the bipartisan effort is a significant step toward winning the fight against Alzheimer’s. He said, “It demonstrates that our relentless efforts working together across our nationwide organization—including our dedicated Ambassadors and our hundreds of thousands of advocates—to make ending Alzheimer’s a national priority are making a real difference.”

Alzheimer’s is the most expensive disease in America and the cost will skyrocket as the baby boomers age. In 2014, the cost of Alzheimer’s will reach $214 billion, including $150 billion to Medicare and Medicaid. In contrast to the cost of the disease, only 0.25% of this total is committed to research—our only hope to end this human and financial crisis.

I have been fortunate to help in the effort to increase research funding for a disease that affects more than five million Americans and their families. We are gaining momentum and it is imperative that we relentlessly advocate until this devastating disease is eradicated.

Copyright © December 2014 by L.S. Fisher
http://earlyonset.blogspot.com 
 



Friday, December 5, 2014

Understanding Alzheimer's: Where's My Memory?

Taylor Osman, author of "Where's My Memory"
The far-reaching scope of Alzheimer’s disease is almost impossible to comprehend unless someone close to you develops the disease. Once you have come face to face with this merciless foe, you recognize the signs and symptoms even in complete strangers.

Several years ago I was at an enormous craft festival when I bumped into a middle-aged man who had a lost look in his eyes. In fact, he was lost, and I instantly knew why. Before long, his brother found him. He saw me standing there and said, “My brother has Alzheimer’s.” I just nodded. He knew that I knew.

Knowing and understanding Alzheimer’s doesn’t have a lot to do with age. My grandchildren have always understood the devastation and gaping hole that dementia leaves in its wake. Some of their memories of their Grandpa Jim are hazy. Our youngest grandchild knows his grandpa only from stories and pictures.

When one person has dementia, it touches the entire family. My sister, sister-in-law, nieces, and grand-nieces have been dedicated fundraisers for Alzheimer’s. We hold an annual traffic stop, and we stand in the heat, rain, or whatever Mother Nature throws at us. We smile, wave, and thank passersby as we collect for Jim’s Team.

One of the nieces that helps us fund raise each year is Taylor. Recently, my niece Rachel shared a poem her daughter, Taylor, had written about Alzheimer’s. The poem was originally published in Accolades, the student poetry collection. Taylor gave me permission to share this poem on my blog.

Where’s My Memory?
by Taylor Osman

Who are you?
I look and think.
Where’s my memory?
I should know you, but I don’t.
You’re in my heart, but not my mind.
I see and feel your warmth.
I know you just for a split second.
Wait, the thought is gone.
Who are you?
Where’s my memory?
Why is it like this?
A tear runs down my cheek.
What is this for?
I have to know, but I just don’t.
Remind me again, who are you?
Where’s my memory?
My memory is fading away.
I have it one minute, but then it’s gone.
Where is my memory?

Dedicated to all the people battling Alzheimer’s


So what is it exactly that makes some people understand Alzheimer’s when others never seem to get it? Taylor gives us the key to understanding in the lines, “You’re in my heart, but not my mind. I see and feel your warmth.”

When you understand that the heart will remember what the mind forgets, you realize how important it is to spend quality time with your loved ones who have dementia or Alzheimer’s. Your warmth and hugs express your love even when your loved one does not remember your name, or understand your words.  Those split-second moments of clarity when you open your heart are far too precious to miss.

Copyright (c) December 2014 by L.S. Fisher
http://earlyonset.blogspot.com


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