Category Archives: your memoir

Kathy’s Story: Life As A Caregiver

Life doesn’t always turn out the way that you expect it to. This is the story of Kathy.

Kathy sits across from me sipping a herbal tea, at 71 she is active and tells me that she is going dancing after our interview. Kathy has been a widow for 4 years, and she is trying to adjust to her new life.

She met her husband at a dance when she was 19. He was the older brother of one of her friends, and after the dance, he got her phone number from his sister.

Dave asked Kathy out on their first date by posing her a question. “If you can tell me the color of a red pencil, then you can go out with me.” She liked her husband Dave because he was smart, funny, and a little sarcastic. “I got tired of the sarcastic part pretty early on, and I let him know that.” Dave had a significant limp from a bout of childhood Polio. He was born before the advent of the Polio vaccine and contracted the disease as a baby. Growing up he worked hard to compensate for his handicap by regularly working out in his homemade basement gym.

On the surface, Kathy felt that they were dating casually. However, six months into the relationship she ended a connection with another man. Clearly, there was a part of her that knew that there was something special about her future husband.

She was still in school, and Dave returned to college studying at Lewis University. Kathy recalls a letter that he sent her around their 3 month anniversary. In the letter, he thanked her for the brownies that she made him and told her that he would also like some cookies. Although humorous, that simple comment foretold of things to come.

They had little money, and it took them 6 years to save enough to get married. Dave eventually became a special education teacher, and Kathy taught elementary education, both for the Chicago public schools.

They saved and bought a home on a large lot in the country. They traveled a bit. They raised a family. This was the American dream of the 1980s. Dave loved to eat. In fact, Kathy says that he was obsessed with eating. Dave started to gain weight and went from thin to morbidly obese. Along with his obesity came diabetes. Along with diabetes came diabetic neuropathy. Along with diabetic neuropathy came immobility. He was already limited by the aftermath of his polio, but his neuropathy made him disabled. It became difficult for him to walk or maintain his balance. This made it hard for him to contribute in a meaningful way at home.

Slowly, but progressively, more and more of the home tasks fell on her. This is how she describes a typical morning in those days:

“I would get up at 4 AM and walk the dog. Then I would throw clothes in the clothes washer, and empty the dishwasher. In those days I made a lot of oven breakfasts, and so that would be cooking. After breakfast, I would get my kids ready and drive them to school or the sitters. Then I would go to my full-time teaching job.”

Kathy was feeling tired and stressed. Despite this, she put one foot in front of the other and pushed forward. “I didn’t think about it, I just did it.”

Dave’s condition continued to worsen and his doctors came up with a new diagnosis, Post Polio Syndrome. Post Polio Syndrome is a syndrome that occurs many years after a person has contracted Polio and it is characterized by muscle weakness, fatigue, and pain. Dave went from using crutches to being a wheelchair user in 1996. It was becoming increasingly difficult for him to get out of the house, and once out he could only go to handicap accessible locations. This was not only difficult for him but his entire family.

Kathy continued to push forward, but her life was becoming further limited, and she was avoiding social gatherings because of the enormous difficulty in transporting Dave. Her world was closing in.

In 2009 she started to notice another change in Dave, he was beginning to stutter. Dave was a bright and inquisitive individual, but now his logic seemed way off. Simple things, like learning how to use an electric wheelchair, were beyond him. He was complaining of vision problems, although his eyes tested OK. He had trouble writing. In 2011 an ophthalmologist examined him and thought that he may have Parkinson’s Disease which can be confused with another illness called PSP. Dave was seen by a Neurologist who did an MRI of his brain. That test showed an unusual hummingbird pattern which is the classic sign of PSP or Progressive Supranuclear Palsy, a disease that destroys part of the brain. This explained the stuttering, lack of coordination, problems with logic, and the fact that Dave had gone from being a nice person to a nasty one. Dave started to show a lack of empathy, and at the same time, he was becoming progressively needier. If Kathy was out of his sight for a moment, he would bang on the walls or call her cell phone to get her attention.

She now had caregivers coming in, but they were only present 3 hours a day. “Sometimes that was the only time I could sleep as Dave would often be up at night.” Another symptom of PSP is dementia. Kathy’s situation was similar to someone who had a spouse with Alzheimer’s disease. It was a tough time. She had discovered a Facebook group for PSP caregivers, and that served as a lifeline for her. “Connecting with other caregivers, I started to understand that Dave’s behaviors were due to his disease.”

The course of PSP runs from 6-15 years, and on August 17, 2014, Dave passed away at home.

Kathy spent much of her marriage taking care of Dave, and through the process became ever more isolated from the outside world. A part of her wanted to live, to experience, to explore. In many ways, she was like a person who had been released from prison after spending 20 years in confinement. She had a desire to move forward, but her life had been so structured that she didn’t know how. “My friends in the PSP group talk about this. That first year is go, go,go. It is like you are trying to make up for all of the years that you couldn’t do anything. You move forward, and you make mistakes. I joined a dating site, but I didn’t understand that there are predators that lurk on these sites. Let’s just say that I got hurt.”

Kathy continues to move forward, but at times it is difficult to know what forward is. She is starting to do things for herself. She travels more, she has joined a gym, she is taking dancing lessons, she casually dates, she learned how to swim, she learned how to ride a horse, she is a regular at a senior MeetUp group. Despite this she is lonely. She has gone from being a caregiver to being free. However, being a caregiver was her identity. She has lost her identity.

“I decided that it was time to talk to someone who could help me figure out where I go from here. I need to accept that fact that I may never have another partner. I need to be happy with myself.”

Kathy says that she is still a work in progress. She continues to expand her experiences, but at a less frantic pace. She is enjoying her friends, family, and grandkids. She continues to learn and grow.

We never know where life will take us. Every day is a gift. Good days have bad in them. Bad days have good in them. It is our task to extract what good that we can from every day, as we will never be given that day again.

Kathy is a heroic person who is trying to live by that philosophy. I wish her well.

If you have a story that you would like to tell me please click here for more information.  It is free and it is a way to preserve your legacy. 

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Kathy

Terry’s Story: Building A Guitar Museum

This is the story of Terry, and his 40-year desire to create a school and museum so he can share with others his love of stringed musical instruments.

I enter Terry’s music store, and he is pouring over an ordering catalog. He writes down items in a spiral notebook and then places a call to his music house’s customer service representative. From what I can tell he is ordering guitar strings, guitar tuners, and perhaps a pick-up or two. Terry is 65 and does all of his ordering the old school way, as he doesn’t own a computer.

After about 10 minutes he invites me to sit in a chair towards the back of his La Salle, Illinois store, which is called “The Guitar Junkyard.” It is a shop filled with every imaginable type of guitar and stringed instrument. Guitars are hanging from the walls, the ceiling, and on racks. Old looking one, new looking ones, fancy ones, handmade looking ones. Guitars are everywhere; they visually represent his life of collecting.

Terry always loved music, but as a child, he didn’t think that this would be his life. Terry was raised in the affluent Chicago suburb of Hinsdale. He went to Iowa State University in Ames because his parents expected him to go to college, but he always felt that he was more of a “hands-on” type of guy. Like many teenagers, he wasn’t sure what he wanted to major in. His choice was based on rules of elimination. English was crossed off because he didn’t like the rigid rules required. Meteorology was eliminated because of the excessive chemistry load. He was left with an anthropology major. He had been playing the guitar since he was a child, and so he decided on a music minor. Terry considers himself an ethnomusicologist, based on these areas of study.

In 1972 Terry taught himself the banjo. In 1974 he joined a bluegrass group in Ames as a banjo player, The group was locally successful. Terry was now working as a carpenter, and the band served as a nice counterpoint.

A good friend was managing a music store in Ames. He called Terry with a request to run the store for him for a couple of weeks as he had a family emergency and needed to travel out of state. Initially, Terry was reluctant; he had no business knowledge. His friend convinced him that it would be easy, and it would only be for a short time. This would be a turning point for Terry.

The friend never returned, and Terry was given the store manager job. The owner arranged to have someone train Terry on the business side of the store, and he was off on a new and unexpected career. Terry adjusted to his new job but found it too slow-paced. He started to buy junk guitars for the sole purpose of learning how to fix them. Eventually, he became an expert guitar repairman. Terry specifically refers to himself this way as opposed to calling himself a luthier. Terry had a steady job and was playing music on the weekends. His wife had advanced herself too, eventually earning a Ph.D. Life was good.

For every up, there is a down. After two years the store owner decided to close the Ames store, and Terry was out of a job. Around this time his bluegrass band was starting to fall apart. Once again, things were changing for Terry.

With a small bank loan, he started his music store, which became a successful enterprise. Around the same time, he was approached by another band, “The Warren County String Ticklers” to play the guitar and sing. Terry was a busy guy, running the store during the week and playing gigs at night and on the weekends. The Ticklers were popular locally leading to TV appearances on Iowa Public Television. Life was once again excellent, and it was about to get better.

Illinois Public Television was in the process of putting together a show for Jethro Burns, of Homer and Jethro fame, and they need a band for him. Through their Iowa TV connections, the Ticklers were chosen for the job. The show, called “Country Music Hall,” was a success and the band started to tour with Jethro. County fairs, state fairs, TV appearances, and more. Terry was traveling with an “A” level performer, and he was having the time of his life. His store was thriving, his wife’s career was advancing. Terry was on a successful fast track.

Life started to unravel by the mid-80s. Jethro Burns became ill and had to leave the tour for an extended period, and various members of the Ticklers were abandoning the band for various reasons. Although Terry loved working in the band, he was tired of the band life. Set-up, tear-down, fast food, long hours. It was exhausting, but more importantly, it kept him away from his friends, wife, and son. “About 3% of musicians become professional, but only about 0.1% reach a level of enough success where they can have a pampered life on the road.”

His wife got a job for the Department of Agriculture, and the family left for Washington DC for a three-year commitment. Terry left an employee in charge of his store, which quickly went from making a profit to being in debt. At one point he had to return to Iowa for two months, to save his business. “I found a drawer of bounced checks and people said that the shop was often closed during business hours. Apparently, my employee was making more money at the local pool hall than at the music store.”

Eventually, his wife’s Washington job ended, and she returned to Iowa State University. Terry’s shop was in the green, but this phase was also short-lived and a new twist that was about to happen. His wife’s university job ended, and she had to find a new one. One of her job offers was in Illinois, close to her family who lived in the LaSalle area. Terry packed up his shop and moved it to LaSalle, where it remains today.

All of this time Terry was collecting guitars and other string instruments. He says, “I only need one of each type.” Unfortunately, there are countless varieties to be had. Construction techniques can differ, body shape can vary, ornamentation can change. “When I make money I don’t pay myself; I buy another instrument.” This explains the expansive number of instruments in his shop.

Terry says that he has wanted to create a museum and teaching center for many years. The building that he rents for his store is for sale, and Terry is in the process of buying it. He envisions a museum on the first floor and his music store on the second.

Most of his instruments are not collector quality, but they all tell a story. He would like to allow people to play them and experience their differences. Also, he would like to share some of his talents. As a professional performer, he understands that there is more to playing on stage than plucking an instrument. He envisions a center that teaches the art of performance. As a self-taught guitar repairman, he plans a teaching program that could train future instrument fixers.

He would like to create a foundation to manage his museum and collection. His eventual goal would be to be the director of instrument repair. “I could leave the running of the place to someone else.”

Will Terry succeed in his quest? The outcome is unknown. He has the instruments, and he will soon own the space. He feels that he will have enough capital to make the fundamental changes needed to turn his shop into a museum. What is less clear is if he can draw enough people to LaSalle, Illinois to sustain the museum. He is very close to Starved Rock State Park. A park that gets over 3 million visitors a year. He is thinking of ways of attracting those visitors to his museum which he plans to call, The String Instrument Museum for Preservation, Luthiery Education” or SIMPLE. He wants to use the tagline, Music is SIMPLE.

Terry is 65, but he is still dreaming. Sitting in a rocking chair is not in his plans. He has wanted to establish his museum since his college days, and he is now a few steps closer to achieving his goal. His concept is novel, a place to showcase a diverse collection of string instruments, rather than one that displays museum-quality pieces. He wants to bring his type of music appreciation to the general public.

At the end of the interview, I asked Terry if he had any life regrets. “Are you sorry that you didn’t continue in anthropology, or as a professional musician?” After a long and thoughtful pause, he just said, “No.” Terry is right where he wants to be.

I wish Terry well in his plans and his future.

In life there are many ups and downs. It is how we view these twists and turns that determine our life satisfaction.

Terry’s music store:
The Guitar Junkyard
1049 8th St
LaSalle, IL

If you would like me to write your story, click here.

Terry
A massive collection.

Let Me Write Your Story

Dear reader, I need your help. If you help me, your actions will also help you.

I want to document the lives of people.  This process would involve writing their story and taking some photos of them.  I’m interested in telling the story of regular people who have had extraordinary experiences. Extraordinary is a confusing modifier, so let me explain.  I would like to write about stories that changed the direction of someone’s life, either for good or for bad.

Most of us would say that having a child causes a monumental change in a person’s life. But what about the person who had to deal with a child’s serious illness, or perhaps the person who had a severe illness as a child? Did these experiences significantly change the trajectory of their life?  

How about someone who fell into a career path, only to find out that it was their life’s calling?  How about the person whose career path almost destroyed them?

Do you have a passionate interest that has impacted your life? Are you driven to change the world, no matter how small? Have you changed your ways (good or bad), and how did that impact you?  Did you make a significant career change that was surprising to those around you? Did some random event transform your life? YOUR LIFE MATTERS. YOU HAVE A STORY TO TELL.

I would want to explore one storyline with you, which would likely take several hours of your time.  Also, I would spend some time with you to take some photos.

I would write up your story and post it on my blog along with some of the photos that I shot. I’m doing this as a proof-of-concept for a possible book, which could include your story.

Who will know who you were 100 years from now?  I look at old photos of relatives, and I don’t even know their names, let alone their story. What would it be like to personally touch a future relative?  What would it be like for them to know just a little about who you were? What would it be like to have someone distill a pivotal part of your life into a cohesive narrative?  What would it be like to have high-quality photos attached to that story? Images that would transform written words into a real person to the reader. Not just random cell phone snapshots, but pictures that were taken with the expressed purpose of making your story real.

I am a professional interviewer.  I am a writer. I shoot photos professionally.  There are folks with lesser skills who would charge you to do what I’m offering to do.  Your story is worth telling.

If you are interested, here are some more details:

My initial effort will be limited to 5 stories (5 individuals). If you have an interest in me doing this for you, please don’t wait or hesitate.

I will decide whose stories that I document.

For this round, I will travel up to two hours (by car) from my Chicago area home.

Naturally, you will need to allow me to post/publish your story and photos. (I know, obvious)

I will make my written narrative and select photos available to you for your archives.    

Email me at SPAMmike_kuna@hotmail.com (remove the word “SPAM” in the email address). In a paragraph or two tell me about your story. Don’t let yourself or your story disappear with the passing of time.   

Let me know if you are interested.

Dr. Mike

PS If you are further than 2 hours away from Chicago, write me anyway.  Although my initial efforts are limited geographically, I absolutely will consider expanding the scope of this project in the future if there is enough interest.

Your story is important.
Photos make your story alive.