Category Archives: Tell me your story

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.

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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

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Terry
A massive collection.

LilliRose’s Story: Living with Hidradenitis Supporativa

I arrived early at the Schaumburg Starbucks. I didn’t want to be late.  I had corresponded with LilliRose for several weeks and had sent her my photo a few days earlier.  I told her that I would be wearing a red ball cap for identification. I didn’t know what to expect, as she was my first interview

After a short time, I heard my name being called from behind me.  “Mike Kuna?” I turned to see a beautiful 24-year-old with a bright smile.  It was LilliRose, here is her story.

LilliRose grew up in Schaumburg, the oldest of two children.  Early in her life she started to take dance and had a natural talent for it.  She is creative and excelled not only at dance but also at acting. Although dedicated and intelligent, LilliRose had difficulties in school with reading and math.  It was later determined that she had both dyslexia and dysgraphia. Her mother stepped in, helped her, and eventually, her reading ability improved. However, math continues to be a struggle for her.

LilliRose was active in school theatrics and was also involved with a musical theater production company during elementary and high school.  Her acting skills caught the attention of a manager who told her, “You can act,” and for several years she tried out for a variety of parts that ranged from local TV commercials to LA productions.  In school, she was active in Poms and maintained a “B” average despite her learning issues. On the surface, it would appear that she was leading a charmed life.

When LilliRose was ten, she discovered a lump on her inner thigh close to her groin.  She is a private person and kept the bump to herself. Months later that her mother discovered it when she saw LilliRose in a bathing suit.  Concerned, her mom took her to a dermatologist who told her that he didn’t know what the bump was. Other doctors and other treatments followed.  The bump sometimes got bigger, sometimes smaller. None of the treatments helped.

It took about a year before a new doctor finally came up with the correct diagnosis, Hidradenitis Suppurativa (HS) a rare skin condition where the patient develops painful cysts, papules, and nodules in the groin, breasts, and armpits.  Cysts can ooze malodorous pus. The disease is chronic, its cause unknown, treatment is limited, and there is no cure.

LilliRose tried to ignore her illness and to live her life as a typical teen.  She went to school, dated, and was active in extracurricular activity. “I didn’t think about HS very much.”  She held onto the false idea that one doctor told her, “You will outgrow this illness.”

She entered Columbia College as a dance major.  However, after a year of schooling, she realized that she did not have the all-consuming passion necessary for a dance career.  She is now on a hiatus from school and supports herself as a server.

Two years ago the bottom dropped out for LilliRose.  Her lesions spread to her underarms, and this was devastating. “Before they were hidden, now everyone could see them.”  She also became aware that her HS would not fade away with age. It was sobering for her to realize that she could be dealing with HS for the rest of her life.  LillieRose fell into a deep depression.

“I ignored my HS before, but two years ago I faced it. I didn’t understand how I could deal with the sores and pain when I was younger and then couldn’t as an adult.”  Things that she did in the past became difficult. She started to give up activities. “The pain can range from intense burning to bruise-like. Sometimes the searing pain will shoot down my leg.  It can make it impossible to dance. Sometimes, I can’t even go to work.” Eventually, LilliRose sought help by attending an outpatient treatment program for anxiety and depression. “It was helpful, but I knew that it was not enough.”

One day she decided to move forward by taking a more active role in her life.  She studied nutrition and discovered that certain foods made her condition worse.  “I love french fries, but if I eat them I know, I’ll have a flare-up the next day.”  She regularly went to the gym. She attended a meditation class. She started to learn things for the sake of learning.  “I have a friend who is a forest ranger. We go walking, and he tells me the most amazing things about the forest.” She changed jobs, she made new friends, she read more.  “I didn’t want to take medication for my depression. I prefer a more natural approach.”

LilliRose feels fortunate that she has very supportive parents and a wonderful and understanding boyfriend. Although she would like to feel even better, she has made progress dealing with her anxiety and depression.

Her HS has impacted her in a variety of ways, but not all of those ways are negative. It has made her acutely aware of other individuals who suffer from physical and emotional illness.  She plans on going back to school next term, this time to study business. Her goal is to eventually open a center where people of all types of disability can gather. A place that will provide dance and art therapy.  A place that will be a home for rescue animals who have nowhere else to go.”I have two dogs, and they are always there for me when I’m having a flare-up. Animals can be healing” The center will provide a welcoming place anyone who suffers from a disability.  A place where they are accepted, understood, and helped.

Thank you LilliRose for talking to me.  

If you have a story that you would like to tell, please contact me at SPAMmike_kuna@hotmail.com (remove the word SPAM in the email address).

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LilliRose