Category Archives: family

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

On Living In A Cargo Van

I moved to the far western suburbs of Chicago 30 years ago. Many things in my life have changed since that move. I married 25 years ago. I had three more children. I purchased a house. However, there is one thing that I did before all of the above that has remained to today. That one thing is my retirement camper fund.

I have a pool of money that I established over 30 years ago. The fund amount is sensible, but not tremendous. It has served as my “dream fund,” a fund to build a dream on.

When I approached my retirement, I started to think in earnest about that money and how I would use it. I have the heart of a country boy, and I am the most content when I am in nature. My spirit has always gravitated out west, and I am drawn to places there. Would I want to move there permanently? The truth is that I want to live close to where my kids are. For me, relationships trump scenery. However, that doesn’t mean that I wouldn’t want to spend extended periods of time exploring the National Parks and other scenic wonders.

My ease with the outdoors offers me the advantage of doing these explorations relatively cheaply. I have a senior pass for the National Parks, and I have camped my entire life. I have owned campers in the past, so I have a good idea of what I need when it comes to creature comforts.

If I camp for more than a few days, I need to be in something that keeps me off the ground. I am also a “compartment” kind of guy, and I like the idea of having most of the things that I need at the ready and organized. I don’t mind cooking, so I need some sort of ability to do that. Naturally, I need a way to charge my camera, phone, and other gadgets.

With proper ventilation and a 12-volt fan, I can likely survive without AC. My last camper had a bathroom, but I never used it. It was more straightforward to use the campground’s provided facilities. Refrigeration would be helpful, but I’m teaching myself how to make real meals using my own dehydrated foods and off the shelf products. I can’t go for an extended period eating only granola bars and beef jerky.

What I have discovered from my years of camping is that I don’t need a lot to thrive. At home, I am a gadget lover because I like exploring innovation. However, on the road, I practice KISS (Keep It Simple, Stupid!).

The primary goal of my retirement fund was to purchase some sort of camper. Pop-up, trailer, RV? I have toyed with all of the above, and each has its advantages and disadvantages.

My fund is not generous enough to buy a new RV, but I could afford an older C class. They are the best RV value, but they are big and bulky. I would likely have to tow a car, a hassle that I don’t want to do.

A pop-up could be a solution, but do I really want to constantly setup and teardown at 65?

I looked at trailers, and they seem to be an (almost) perfect option. However, there is my backing up problem. Dear reader, I understand the mechanics of backing up a trailer, and I am able to back one up. However, I need a backing up guide. If my wife is with me, I can get my camper where I want it.

You may remember that I am dyslexic. This problem impacts my senses of position and space. It is challenging for me to conceptualize where a trailer is relative to its tow vehicle. When I back up a trailer by myself, I have to continually get out of the car, visualize where the trailer is, back up a bit more, and repeat. It is very frustrating. I marvel at my friend Tom’s backing up ability. I have been with him many times when he had to back up a considerable construction trailer; he is a real pro. He has offered to teach me his tricks, but I will always have my spatial problem.

My needs have also changed over the years. I started to seriously look at options two years ago . At that time I felt that I needed something that would sleep my entire family, as our favorite vacations had been grand camping adventures. However, we have not had a big family campout for over three years. Even overnight campouts are limited, as my kids now have lives of their own.

It is sad for me to think about the end of our big family camping trips. However, when a door closes a window opens. If I accept this reality, I also can refocus my efforts on ways to camp that allow travel for one or two.

A “Class B” camper comes to mind. These are tricked out vans that offer all of life’s conveniences in miniature. Full kitchens, bathrooms, built-in entertainment systems. However, they are costly, and many of their luxuries (like the bathroom) are not needed by me.

For the last year, I have been talking to my friend, Tom, about building out a cargo van. He is willing to help, and he has the skills that I lack. At one point he found me an old mini-bus that could be converted, but I was too chicken to pull the trigger. Even with Tom’s expert help the conversion process could be lengthy and daunting.

Every camper option seems doable,, but I always find something to keep me from moving forward. That is until this last week.

I stumbled on a YouTube video from a company that makes a modular system for the Dodge Promaster van. This is a relatively inexpensive cargo van that boasts a “tall” version that has an interior height of over 6 feet. Their system locks modules into floor tracks, and the whole interior is easily removable. The kit includes the floor, wall and ceiling panels, a platform bed, a simple kitchen, and a seat/storage box. The best thing is that it can be installed in 2 hours.

Cargo vans have only two seats, but for those now rare family trips, we could use a second transport car, and a tent for other campers. If needed, I could sell my current car and use the van as my primary vehicle. I am moving into retirement, and my transportation needs are simple.

I mentioned the option to Julie, and she seemed reasonably receptive. We have been married for a long time, and we no longer find it necessary to “make our points” with each other. Well, at least most of the time.

Dear reader, I’m not sure where this will all lead me, but I’m pretty excited about it. Tom said he would go with me to check out some Promasters at the local Dodge dealership, and I have sent an email to Wayfarer Vans, the company in Colorado who makes and installs the conversion kit. This option seems like the right balance of convenience and price. Say a little prayer for me so that I make the right decision.

When I started writing this blog, I talked about traveling to National Parks to photograph and write about them. This could bring me one step closer to that dream. My plans have moved slower than I initially expected, but they are definitely moving in the right direction. Fingers crossed.

Our time on this planet is short. I have spent my life in service of others, and it is still hard for me to think about my personal needs. I can’t always do what I want. However, I don’t want to draw my dying breath considering, “Why didn’t I do that? Why didn’t I experience that? Why didn’t I try that?” Dear reader, I am working hard to live my life to its fullest. You never know what tomorrow brings.

I’m learning how to dehydrate my own food.
I’m 6’2″ and I fit!
I want to photograph and write about nature.

When Children Go Off To College

The hotel was geographically close, but it still took almost 40 minutes to get to our destination as we had to transit on rural roads. We were then met by road construction when we arrived. I always feel uncomfortable when I’m not familiar with my environment, and road construction makes that unfamiliarity more intense.

A turn here, a detour there; finally the parking garage. Once out of the car we followed the herds of people as they meandered towards the middle of campus. We arrived at the student center where most of our meetings were scheduled. A large red brick building in a classic Georgian style. It was time for college orientation to begin.

Grace will be my third to go off to college, and it has become more difficult for me with each child. When my oldest daughter went to school, I had three little ones still at home. My next daughter had already been away at a magnet STEM boarding high school before she left for college. It was still tough to see her go from a campus that was 20 miles away to one that was over 1000 miles away.

My Grace has been at home for the duration, along with my son Will. My last two kids have liked doing things with me, and we continuously have turned small events into adventures. A trip to Walmart can become an exploration, making dinner together can serve as a time to bond and laugh. Since my wife returned to the workforce (she would correct me at this point telling me that I should say “paid workforce”), We have often been like three musketeers. Naturally, as they have gotten older, their friends have taken up more of their time, but we still do things together. Being with them is a total pleasure for me.

Now, my Grace will be 5 hours away by car. Indeed a doable trip on a weekend, but not around the block.

I remember going to my college orientation many years ago. It was an information only experience. I went with my friend John, who was also attending the same university. No parents, no sleepover in a dorm room, no team building exercises.

When I turned 18, I was considered an adult. Currently, we define people in their 20s as “emerging adults,” who still need parental support. College orientation is now designed to ease fears. Providing information is secondary, as all of that information is on the university’s website.

We attended sessions with my daughter, and apart. The two-day affair included her spending a night in a dorm room, while we returned to our hotel. A harbinger of things to come.

I am fortunate to have kids who are motivated and dedicated. I know my daughter has all of the skills needed to have a successful college career. I am overjoyed that she is moving forward. I am intensely sad that she is leaving. At times my mind goes in crazy directions. “What if she marries someone locally and doesn’t return to Illinois?” “What if she decides that her dad isn’t the fun adventurer of her youth and just a boring old man to be avoided?” “What if…”. I understand that these thoughts have no place in my mind, but they are present anyway.

This is a problem that modern parents face. A hundred years ago our children would return home with their spouses to work on the family farm. When I was growing up in Chicago, it was common for family members to buy houses on the same block. Now, our children may live in another city, state, or even country. This fact of life made only slightly more tolerable by the innovations of FaceTime, texting, and Facebook.

Our goal as parents is to help our children become successful and independent adults. This is my goal, but like most things in life, an independent child is a coin that has two sides.

My kids are transitioning from precocious but dependent children to mature and independent adults. In our conversations, they now explain things to me. In our adventures, they fully contribute. In our chores, they are equally responsible. This is the way it should be. Is it wrong for me to want this for them and also to want them to think of me as their father who is there for them? Who can pick them up when they fall? Who has wisdom that they not only need but want? I hope that they will continue to comprehend how significant they are to me, and how very much I love them.

Each day brings me new experiences and new things to learn. At whatever level that I am allowed, I will maintain my connection with my children. They may be striving towards their future, but that doesn’t mean that they have to give up their past.

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.

On Father’s Day

Yesterday was Father’s Day, and I am a father of 4. If you are not a dad, you may consider the holiday a “Hallmark holiday.” An event designed by businesses to get you to buy things. If you are a dad, you probably understand that it is more than that.

Established over a 100 years ago it was an attempt by a daughter to honor her dad, who raised six children on his own. Her initial success was moderate at best, and after many years, she abandoned the concept as her life moved on. She eventually returned to the idea in the 1930s and started to promote it anew. This time retailers were on board as they saw the advantage of a day that could mean additional gift purchases. In 1972 President Richard Nixon officially declared it a national holiday. Although used by the business world to hawk products, it also can be an excellent way to celebrate the father or father figure in your life. Father’s Day celebrations don’t have to include expensive gifts and commercial greeting cards!

For many years my wife traveled with my kids to Minnesota on Father’s Day to spend time with her family. Unfortunately, I had to work and was home alone. I don’t believe in letting other people control my happiness. It was important to my wife to be in Minnesota, and so she was. However, I could still make the day significant for me. I started to go on “great adventures” with my sister Carol. We would get into my car and drive in a random direction. We would stop anywhere that looked interesting, to explore. We would culminate our exploration by discovering a random local restaurant. Some were great, some less so. Either way, it was wonderful fun. I have delightful memories from those “Father’s Day” celebrations, as does my sister. In the last few years, Julie has not traveled on Father’s Day weekend, and I have shifted to a more traditional celebratory day.

I have become older and more sentimental so Father’s Day has become ever more significant to me. My family has risen to the occasions and Father’s Day gets the same treatment as any other significant family day from birthdays to Mother’s Day.

For these special days, the celebrant is typically honored with a meal of their choice. Frequently of the homemade variety, sometimes of the restaurant kind. My tastes run pretty basic, and I asked for chicken, mashed potatoes, and a salad. I also asked for a sugar-free dessert, as I gave up eating large quantities of sugar some years ago.

Last Father’s Day I was promised a new BBQ grill, as our current one is over 27 years old. The old grill now has two speeds, burn and not hot enough. I have replaced many of its innards over the years, but it is just too worn out to repair further. Cooking on it is like solving an advanced math problem. You need to calculate relative hot and cold spots on the grill and then move your food around to make sure one piece isn’t chard while another is raw. Life happens, and the grill never came. However, this year my wife informed me that a new one was ordered and was coming in the next two weeks. Yay!

My daughter Grace searched the internet and found a recipe for a sugar-free apple pie. My son William wrapped some gifts. Both Grace and William made me cards with the most beautiful sentiments inside. My wife made me dinner. My daughter, Anne, called in her greetings. My daughter Kathryn, who is studying abroad in Moscow, texted hers.

For me, it was a perfect day of celebrations. Yes, I was delighted to get the grill, but that was a minor part of my happiness. The majority of my good feelings came from the fact that people were willing to recognize me and expend effort to make me feel special. Some words written on a card, a phone call, a dinner, time together. Efforts that said that I was important enough to them for them to take time out for me. This is what mattered and this is what made the day awesome.

It takes so little to make someone feel special. In fact, I think it takes more energy to do the opposite. What does it take to wish someone a good day? What does it take to write a sentence or two in a celebratory greeting? What does it take to recognize someone for a job well done? Very little. So many times people will say that they are too busy to do these simple things. Too busy? Really? Likely not.

A gift of your time or goodwill is typically reciprocated by the receiver. Yes, there are “users” out there, but they can be quickly sniffed out. The Golden Rule has been around for over 2000 years. “Do unto others as you would have them do unto you.” Pretty simple, pretty straightforward. Why is it then that we see the Golden Rule ignored everywhere from our personal lives to our government? Practice it today; play it forward.

Shari’s Story: Living With Autoimmune Disease

It is 7 PM on a Thursday, and I am seated across Shari, a 46 years old woman with shockingly red curly hair. This is her story.

Shari grew up in the middle-class Chicago suburb of Downers Grove. She showed exceptional creative talents at an early age and would entertain her parents with her complex stories about bunnies. There was something different about Shari, an old soul with an inquisitive mind.

Early intelligence testing gave a partial answer. Shari was a genius. Coming from a family of achievers, she was right at home. Shari was in the top two percent of her high school class, a fact even more amazing as she was involved in over 20 clubs/activities while she worked a part-time job. Despite her accomplishments, Shari always found the most peace in simple things. She deliberately choose the smallest bedroom at her parent’s home and shunned excessive possessions.

College was expected, and she applied and was accepted to the University of Illinois, a premier university. Always a storyteller, she decided on a rhetoric major. As a concession to her father’s fears of unemployability she also took courses in accounting. As in high school, Shari excelled at the U of I. She overloaded herself with classes, worked different jobs, and even became a resident advisor for her dorm. “I took six years of classes in 4 years,” she told me. Her academic achievements at the U of I were significant enough for her to be named a Bronze Scholar, one of the university’s highest undergraduate honors.

Despite her success, something was not quite right. Late in her college career, she became ill to the point of requiring hospitalization. Despite her academic success she felt stressed, instead of accomplished. “I raced to the top of the mountain, and there was nothing there.”

More studies followed at the University College of Cork in Ireland where she obtained a certificate in Irish Studies. Then it was time to get a real job.

What jobs are available for rhetoric majors? Not many, and so she accepted a two-day temporary position at Ace Hardware corporate doing routine data entry. When you are smart, you can generalize what you know and see the bigger picture. In Shari’s case, she was able to use her accounting knowledge to see errors in the data that she was inputting into the computer. She told her supervisor what she observed and went from a two-day temp worker to a full-time position on her first day. Shari was entering the corporate world.

One task led to another, and soon she was designing complex databases and doing statistical analyses for Ace. At the same time, a romance was forming in her life. She met her first husband when she lived in Ireland. He traveled to the US so they could check out the viability of their connection. When his visa ran out, she quickly decided to marry him.

Unfortunately, the relationship was doomed. Her husband couldn’t hold down a job, and would impulsively spend money. She would react by working harder to pay down their debt. Shari learned more programming languages, and soon was working on mainframe computers. A lucrative but time demanding job in pre Y2K.

Wanting to do the right thing it wasn’t uncommon for her to work late in the night and then bring home additional work. The stress of unnecessary debt, extraordinarily long working hours and a difference in values eventually took its toll, and her marriage ended. Raised in a strict Roman Catholic household, the divorce was devastating to her.

More jobs, more responsibility, more challenges. Shari was being pulled by two forces that were equal, but opposite in direction. A desire to have a simple life, and a wish to do an outstanding job in the corporate world.

Along the way, she met her second husband. He was resentful that Shari had a circle of friends and convinced her to move so they could start anew and be on an equal playing field. Where did they move? They moved from Chicago to Australia. In Australia Shari did what she does best, learn. She finished a Master’s degree in creative writing at the prestigious University of Sydney and then went to work at the university. Shari told me that she loved living in Australia, as everything she needed was within an easy walk. A simple life was what made her happy.

She traveled to India on holiday and became ill. She returned to Australia sick and very weak. She found herself working from home, as she did not have the energy to get dressed and travel to work. This went on for many weeks. Slowly, and with the help of medical professionals, she recovered. However, something had changed, something was wrong. Also, her second marriage was now failing, and another divorce was on the horizon. The prospect of a second divorce was sobering.

Shari continued to work at the University of Sidney, and her brilliance promoted her. She was given important projects and a team to work under her. One of her hires was a man named Jason. A person who barely said two words to her while they worked together. But more on Jason later.

With a broken second marriage, she decided to leave her life in Australia and return to the United States. She left behind true friends and the basic life that she loved.

Now back in the US she once again got jobs in business and IT. Learning new systems quickly, always seeing the bigger picture, always overworking. After 18 months she returned to Australia to visit friends and co-workers. Her former employee Jason was at one of her welcoming dinners. “He seemed different, more talkative and engaged.” By the end of the evening, they were holding hands. Four years later they married.

Finally, it seemed like things were going her way. She was married to the love of her life, she had a small and manageable home in Downers Grove, and she had a good job.

Stress was working overtime in the background as she continued to overwork. In the first year of her marriage, she was hospitalized with a bout of Ulcerative Colitis. She developed chronic anemia. In 2012 she was hit by a severe, unknown malady that left her twitching, and uncoordinated. She couldn’t think straight and had no short-term memory. She was in constant pain, and she was continually sleeping. She went from being able to see the bigger picture to not knowing if she let her dog out. It was a horrible time for Shari.

She sought medical attention and diagnoses were made. Autoimmune thyroid disease, autoimmune neuropathy. She started to do her own research and determined that one of her problems was Hashimoto’s Encephalopathy (HE), a diagnosis later confirmed by her physicians. HE is an autoimmune disorder that causes an inflammation of the brain and produces neurological symptoms because of that inflammation. Other related problems emerged, Lyme Disease, Possibly PANDAS (another autoimmune disease caused by a Streptococcus infection). The combination of stress and infectious agents were creating a one, two punch that was making her life unmanageable. Her body was literally destroying itself.

Shari fought back. Using her own research, novel treatments, and an expert medical team, a multi-modal treatment emerged. Thyroid replacement hormone, steroids, neuro-cognitive training. These have all helped improve Shari’s functioning. However, her health is still fragile. She takes one step forward, only to slide backward with the slightest stress.

Shari is a giving person, but she can become over-involved helping others. She willingly helps friends and family, but her actions can result in an exacerbation of her autoimmune illnesses making her non-functional for days. She would like to be a financial contributor in her marriage, but even part-time work can be too stressful. She struggles with her current lack of functioning, her poor memory, her fatigue.

She says that many doctors missed her diagnoses; they only reviewed simple lab panels and didn’t delve further. She wants to advocate for others who are dealing with undiagnosed maladies. At this time she is a health coach for a young woman who suffers from another chronic disease, but Shari wonders what her next step should be. She knows that it can’t be fueled by the obsessive drive that gave her success but contributed to her sickness. Her illness has forced her to re-explore what has consistently made her happy in the past, a simple, basic life.

Despite her illness, she is grateful. Grateful for the beauty and majesty of nature, grateful for her caring friends, grateful for her loving family, and most of all grateful for her soulmate, Jason.

Life is what you make of it. Sometimes it is more important to celebrate what you have than to constantly grieve over what you have lost. Rejoice in today as will never be repeated.

Do you have a story that you would like me to tell?  If so, click here for more information on this project.

 

Shari

What A House Fire Taught Me

Many people see events as separate dots on a timeline. This is not the way that I view things.  To me, everything connects to everything else. I believe that the world is continually teaching us life lessons, but most people ignore them. This leads me to the story of Mike and the builder.

My father was reasonably handy, but only repaired things under duress. Our house was in shambles.  Although we had a basement workshop, he didn’t teach me the arts of construction and repair. Mostly, he would just tell me to fix things. The results would often be poor, and I would hear about it.

I assumed that by some magic I should know how to do things without any teaching or experience.  This made me a self-starter. It also made me hesitant to tackle significant repair jobs.

I never lost interest in fix-it-up projects, and they still fascinate me today. Accomplishing a small repair can give me a sense of pride and joy.

If you have read some of my other posts, you are probably familiar with my friend Tom.  He is a general contractor, and we are the best of friends. We complement each other in our skills.  There are things that I know how to do that are helpful to Tom. There are things that Tom knows how to do that are helpful to me.  The fascinating thing is that many of the ways that we help each other are not by providing direct services to each other. Instead, we complement each other by our association.

Tom is acting as the general contractor on a home rebuild project.  A fire started in the garage of the home, and in 20 minutes it caused an immense amount of damage.  In 20 minutes the homeowner’s lives were changed forever. Their family was safe, but almost all of the contents of the home were destroyed.  Part of the house will need to be rebuilt entirely. All of the interior walls, floors, doors, and fixtures will need to be replaced. The roof, siding, and driveway will have to be reconstructed.

I have been documenting the progress of the repair with photographs.  This project has been done in short segments. However, recently Tom invited me to spend the whole day with him as he was having his carpentry crew do some significant deconstruction and construction of the house.

He picked me up in his dually from Starbucks, and we headed off to the Naperville site. The house was boarded up, and about one-half of the siding had already been removed. I pulled out my Canon 5D Mark III from my Manfrotto backpack, and I started to shoot.  Soon his crew arrived. A caravan of trucks and vans lined the street. Their contents contained carpenters ready to do battle with a house. This job was too big for one person alone.

Tom’s carpenters are experienced, and they scattered over the house without so much as a word from him.  Soon they were ripping down the remaining siding and pulling off the charred wood. The house started to disappear as pile after pile of burnt wood, siding, and other materials filled the driveway.  As the walls came down in the garage, I could see the destruction that the fire caused. It was sobering.

Tom was now coordinating their activities.  Soon we started a shuttle process. To the recycling center with the siding.  To the lumberyard for lumber. To the garbage dump to offload garbage. To the hardware store to get hardware.  To the grocery store to get water. And so it went.

Piece by piece the garage came down, one slice at a time.  Piece by piece a new structure started to emerge, one board at a time.  The new construction wasn’t rising from the ashes; the ashes had been swept away.  The new garage was rising with careful and methodical planning. The new space modified to improve on the old, but still on its familiar footprint.  A structure connected to the remaining beams that were healthy and strong.

There will be a bigger loft above the garage, better lighting on the adjacent porch, a concrete driveway to replace the melted asphalt one.  The new space will look similar to the old, but it will be better.

The effort will be immense, the cost high. In the end, the owners will have their familiar house back, but it will be improved.  Something good will arise from something terrible.

You may think that I’m am using this construction project as a metaphor. However, I would like to challenge that belief.  A metaphor is typically a word or phrase used to describe something which is not literally applicable. What if these life lessons were utterly relevant?  What if there was a cohesiveness that binds us to our planet and all of its occupants? Like laws of physics, these laws were also constant. If one understood these “laws of the world” he or she could apply them globally to improve other aspects of their existence. I believe that we can enhance who we are, what we do, how we feel. The world around us can be our teacher; we need to stop, look, and listen.

Here are just a few of the things that this house taught me:

-Bad things can happen for no reason.

-It is important to accept things that you have no control over.

-It is essential to take responsibility for those things you do have control over.

-Most events or situations are neither good nor bad. We assign these values artificially.

-We can take good things and make them bad.  However, we can also take bad things and make them good.

-When faced with a difficult task, things go better with friends to help you.

-The homeowners will have a better house once the construction is completed.  They will need to pay for this metamorphosis with discomfort, time and effort.  They will have to accept a certain amount of uncertainty. This is no different than making a change in a person’s life. Changing from an unhealthy place to a healthy one will require discomfort, time, effort, and uncertainty.

-At the recycler, we saw mountains of worn metal that will be melted and repurposed.  At the garbage dump, we saw broken cardboard boxes being prepared to be processed for future use. We also saw garbage that had to be discarded, as it was dangerous and toxic.

We may have parts of us that we think are bad, but with effort, we can make those parts good. Other parts have to be discarded, as they are so broken that they pose a danger to us.

-The fire destroyed some of the homeowner’s garden. For new growth to thrive, the dead plants need to be removed.  

Just like the dead plants we need to rid ourselves of bad habits, behaviors and relationships to make space for good, healthy ones.

These are just a few of the lessons that I learned from a burnt house and a general contractor.  Dear reader, look around you, life lessons are everywhere. Perhaps your clothes dryer is trying to tell you something.  Think I’m being ridiculous? Think again.

After the fire
Removing the bad to make room for the good
Rebuilding
Old metal will be melted and become anew
Some things are so toxic that they have to be completely discarded

 

Sitting In The Car Waiting

I sit in my car and wait. My daughter is inside her teacher’s home having her oboe lesson. I hear the sounds of a small gas engine, likely a lawnmower. It drones in the background. The temperature, a pleasant 67 degrees. It is damp due to recent rain. On my lap is my trusty lap table. On that table is my iPad. I type.

Another Monday in my retirement. It started with me donning rain shoes, rain jacket, and umbrella. As usual, I walked to Starbucks. I was surprised to see Tom’s truck already in the lot, as I’m typically the first to arrive. He was inside drinking coffee and polishing off an unknown snack; probably a scone.

Donovan, the barista, poured my tall cup of Veranda as soon as he saw me enter. I grabbed it and sat down next to Tom and started our Monday review.

Tom didn’t go to the Blues Festival as he had wished, due to yesterday’s rain. I did go on my breakfast walk with Ralph, despite the rain. We checked an auto-posting problem for his website, talked about our kids, sipped our coffee. And so the conversation went. Tom asked me if I had time to go to Roselle with him and I did a quick calculation, as I needed to drive Grace to her lesson. A few adjustments were made, and off we went.

Back home I did a minor project, and now I sit waiting in the driver’s seat of my red Flex. I don’t like to be unproductive, which is why I brought my gear with me.

Sitting, typing, occasionally looking out the car’s windows to a slowly changing scene.

Now a senior man in bib overalls is mowing his grass directly across the street from me. The mower’s growl replacing the noise from the more distant one that droned earlier.

I seem content with my new found slower pace, but at the same time, I’m slightly restless. I continue to feel that I need to be doing more, accomplishing more, being more. This is countered by the reality that I am doing things, just not at the pace that I had originally set for myself. I grant myself forgiveness for the reduction in my output.

As I sit, I notice that I am feeling grateful, and I’m not sure why… let me think. Grateful for living in a good community, Grateful for friends and family. Grateful for my health. Grateful that I still have the wonder of a little boy inside of me.

My mind drifts again. What would it have been like if my grandparents had not immigrated from Slovakia? Likely, I would not exist. But what if I did? Limited education, limited opportunities, a limited life. I wonder if I would have made the best of it. It seems to be in my nature to view things in a positive way. I think that I would have been OK.

Some people think that they can fix their lives by being somewhere else. In some cases this is true, but in most cases, it is not. After all, we take ourselves with us wherever we go.

I drift again. I wonder what is in store for the rest of the day. I guess life is a box of chocolates. I’ll bite in and see what I get.

Dear reader, what are you grateful for today?

Posting on the road.

Driving back home.

The Kuna Kampout

Traditions are customs, activities, or believes that are repeated over time. They can seem trivial to those who are outside the group, but they are essential to the individuals inside of it. Traditions offer a sense of security, belonging, and stability to participants. They sometimes serve a higher purpose, or they can be significant based on their merit. In our family, the Kuna Kampout is a tradition that extends to the greater group of my siblings, cousins, and their respective connections. It occurs once a year at a state park in Michigan, typically early in June.

My cousin, Ken, reminded me that the first Kuna Kampout happened in 2002 and was the result of a conversation that I had with him at another family event the year earlier. We were talking at the Clans Christmas get-together called Droby Fest (named after a Slovak meat/potato/rice sausage). I was telling him how much I enjoyed camping, and he had the idea of having a summer campout.

As a child, most family activities were done en masse with all relatives. Birthdays, First Communions, Confirmations, Christmas Eve, Easter; we would all gather, eat, play, and connect. However, our family expanded over time, and it became more and more challenging to host these large events. Our parties transitioned from extended family get-togethers to immediate family get-togethers.

On the Kuna side of the family, this change occurred when I was in high school. Suddenly, the only times that I saw my cousins were at weddings and funerals. I was young, and my life was busy; I didn’t think much about the change.

For the next 20 years, it was unusual to see my cousins as most of the weddings had already happened, and funerals were, thankfully, rare. In the 1990s my sister was talking to my cousin at a funeral, and together they came up with the idea of a fall reunion picnic. I was given the job of making the invitation flyer, and so started a series of major and minor get-togethers that have continued ever since. Our family is lucky to have my cousin Ken and his sister Kris, who have become our event planners. They are instrumental in keeping our family traditions alive.

Within the tradition of the Kuna Kampout are embedded sub-traditions. My nephew’s late night group hike. My cousin’s baked over coals pineapple upside down cake. A campfire sing-along accompanied by my bad guitar playing. However, the main reason we get together is to talk, eat and reconnect. It is over these three activities that we recommit to each other.

I am very fortunate to have nice relatives. No one gets drunk and violent. No one makes snide remarks. No one needs to brag their way to synthetic superiority.

For traditions to continue, they need to be flexible. I had to be flexible to attend this years camp out, as all of my immediate family could not attend. I had a choice to stay at home, or go solo. I decided to push myself and go to the event.

Being an introvert I like the security of having my immediate family around me, but instead of focusing on what I wasn’t getting I decided to ponder what I was getting.

The advantages of going to the camp out solo were:
It would be much easier to pack.
I would be able to spend more time with my cousins.
I could determine what activities I wanted to do.
I would challenge the guilt that I feel over doing things for myself.
I could try vandwelling.

These last two points were of great interest to me. I always have had a sense of obligation that somehow dictated that doing things just for me was bad. This is a ridiculous belief, but it is one that I hold. Over the last few years, I have gone on a couple of small trips with my friend Tom. However, the Kampout would be my first solo event. I want to write about people across America, and that will involve traveling by myself. This solo excursion could be a step in that direction.

Going solo would also allow me to try vandwelling. I am a big guy, but I have a big car that has fold down seats. The rear space is enough for a sleeping bag, and the ability to sleep in the car on a road trip would make any solo travel immensely more affordable. Another step towards my goal.

I am happy to say that I accomplished my goals. It rained heavily on the night of the campout, and sleeping in my car was an advantage, as many of the tent dwellers were soaked the next morning.

In review, this is what this year’s Kuna Kampout gave me. I kept a tradition and grew a little closer to my relatives. I broke a tradition, by traveling solo, and grew a little more personally. Lastly, I tried something new, vandwelling, and grew a little more adventurous.

Dear reader, explore and celebrate your healthy traditions, but feel free to modify or eliminate repeated behaviors that prevent you from moving towards your goals. Celebrate the relationships in your life. There is no better time than right now to let those around you know that they are your priorities.

My home away from home.
Vandwelling.
Playing the guitar
A smaller, but enthusiastic group this year.

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).

To learn more about this project click here.

LilliRose