Category Archives: self-assessment

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.

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.

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.

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

 

Concerning My Birthday Party

The offer to me came earlier this year, and to Julie’s shock, I accepted it.  The offer? Julie asked me if I wanted a birthday party to celebrate my 65th birthday.  She has queried such options in the past, and I have always said no. But, dear reader, it is time for a change, and I am changing. With this said, my simple “Yes” was anything but easy for me to utter.

Why would it be so difficult for me to allow someone to celebrate such a special day? The answers go beyond the obvious, but many of these reasons will be familiar to those of you who have been reading my blog.

First, the obvious.  I am an introvert and being the center of attention can be an exhausting experience.  

Second, the more significant reason.  My life has been a life of service, both professionally and personally.  I have formed many of my relationships under the umbrella of things that I have done, or could do, for others.  I think that this reality is not accidental. In part, I feel if you can help someone, you should. In part, providing a service to someone justifies the relationship. “Be my friend, and I will help you.”  In part, it allows me to have a certain amount of control over the connection. Like most people, I am complex, as are my motivations to do things. Those motivations are neither good nor bad, they are.

Back to my birthday party…

My real fear of asking someone to do something for me is that they won’t do it.  This is based on my childhood where that was my experience. I learned very early on that I had to rely on myself.  I could not expect others to do things for me. Having to rely on myself made me angry, and I turned that anger into the fuel that drove me forward.  As I have said in previous posts, “Take a disadvantage and turn it into an advantage.”

I became robust, resilient, and self-reliant.  However, there is a flipside to this coin. There is a part of me that wants to be loved, cared for, nurtured, and celebrated for who I am, not what I do.  This aspect of me is buried deep in my psyche and highly protected. However, part of my current efforts to grow beyond past limitations is to confront these needs and acknowledge them.  Hence, “Sure throw me a party.”

My past strategy had been to never expect anything from anyone, but to fantasize that people in my life would be there, “If I needed them.”  As a psychiatrist, I know the folly of such a fantasy. I have worked with many caregiving patients (often women) who have devoted themselves to others in selfless ways.  They have selected individuals who were more than happy to be cared for. Sadly, when these caregiving individuals needed help in return, their relationship was nowhere to be found.  Their connections signed up to receive full service, not to deliver a service. Naturally, this makes sense. However, even psychiatrists use psychological ploys to get through the daily experience that we call life.

Although my actual birthday was earlier this year, my celebration is scheduled for this weekend.  I am stressed as this event draws a clear line defining my worth to those around me. My old tapes are playing.  Instead of thinking that the people who care about me will be happy to celebrate with me, I think that they will be resentful and act out their feelings in one way or another.  I have heard stories of people traveling to another state to celebrate a milestone with an old neighbor or a casual friend. This seems entirely normal for others, but not for me. Are my close connections willing to put themselves out a bit to celebrate with me?  My rational self says yes, my inner child says, no. I guess I will know the truth in a few days.

To add to this drama, Julie has asked people to write a little note or letter to me which she will bind into a scrapbook.  I want such records to pass onto my children and grandchildren. I don’t want to become an unknown image on an old photograph.  I want to be a real person to my future lineage. I don’t think that this is grandiosity, I believe that it is based on my sense of mortality.  Who are we if no one remembers that we ever existed? Here again, I fear that I’m burdening others. This reality will also be soon known.

Dear reader, thank you for following my story.  We are all imperfect. My goal in life has always been to make a difference in the world, however small.  I want to leave the earth a bit better, rather than a bit worse. Otherwise, why should I exist?

To move forward with my life, I have decided to be fearlessly honest with myself and those around me, including you.  I may be 65, but I still am growing and evolving. I am traveling forward to a destination not yet apparent in the fog that is my future.  However, I am starting to see vague shapes ahead, and my writing is one of the things that is allowing this clarity to happen.

Next Sunday is my birthday party; the day will come and go.  It will be replaced by Monday. Will it justify my childhood fears? Will it support my objective reality?  I guess I will have to wait and see. Either way, I will grow. Peace.

 

Meeting With Pastor Dave and WordPress

I accept the fact that I’m an introvert, but that acceptance wasn’t always the case.  Before I understood this aspect of my personality, I used to be self-critical of my behavior.  I would see people around me on the move. They would socialize with one group, and then another.  They had 5 or 6 “best friends.” They would form “close” connections based on their personal monetary or career needs.

I would think to myself, “Why is it so hard for me to socialize in these ways?  If I could be more like them I could…” I felt that there was something wrong with me.  

I can’t recall the actual moment when I realized that I was an introvert, but I do remember that it was a great relief to understand why I behaved the way that I did.  It was affirming to view this aspect of me as a positive trait; part of who I am.

With that said, there are times when introverts have to play the part of an extrovert, and I am able to put on a coat of sociability when necessary.  However, since this isn’t my natural demeanor, it can be exhausting. Usually, I manage these energy expenditures carefully. An extroverted activity followed by some private time.

As I have written many times, I do like people, and I do enjoy interacting with them.  However, I need my personal space to recharge. I am not energized by large groups; I am depleted.  It is a rare day that I would deliberately schedule multiple social interactions. One of those rare days was yesterday.

At 1 PM I had a scheduled meeting with my pastor.  I belong to a large non-denominational church, and I was meeting with its co-founder, Dave.  I had set up a meeting with him weeks earlier. The meeting was based on my “leave no stone unturned” philosophy of life.  Other than that, I wasn’t sure what I was expecting to happen at the meeting. I knew that in some abstract way I was trying to move forward on the “next aspect of my life” thing.  Pastor Dave is a smart guy who takes charge of his world, but beyond that, I knew little about him.

The morning of the meeting met me with dread.  “Why would he want to meet with me? He is too busy.  I am using up his valuable time.” And so the tapes played.  I understand the historical reasons for these thoughts, and I do not let them stop me.  However, they are still distressing.

I returned home from my morning walk and briefly discussed my concerns with my wife, Julie.  She was busy getting ready for the day, and I tried to respect her time limitations. I drove over to my friend Tom’s house and also voiced some of my fears to him.  It is a good thing for me to share my irrational fears with people that I’m close. This is a relatively new behavior and a healthy one.

Soon it was time for me to go to the church and my anxiety returned full force.  I reminded myself. “He is only going to spend 30 minutes with you. It is not that much of an imposition.”

One PM arrived, and I found myself seated in a medium sized room at a large round folding table.  In walked Pastor Dave. I started to talk, not knowing what would come out of my mouth in the next second.  I assumed that Dave did this sort of thing multiple times a day, but he told me that he was more involved with the vision of the church and that he enjoyed the chance to do something different.

Our conversation continued well past 30 minutes.  At the hour point, his assistant stuck her head into the room to remind him “about that call that he needed to make.”  I’m sure that this was the standard protocol when she sensed that a parishioner was taking up too much of the pastor’s time.  I immediately started to grab my coat, but Dave put his hand up indicating that he wanted to continue to talk. He recommended a couple of books that might be helpful to me, and also suggested a life assessment that he found personally useful.  Ninety minutes into the meeting we ended with a prayer. I didn’t feel like I wasted his time, it was a nice feeling.

Shortly after I arrived home, I drove my daughter, Grace, to a meeting.  In my mind, I imagined returning back home. I would take a long shower and put on some loungewear. I would immerse myself in a project and I would consider having a glass of wine.  Then, the reality hit me. I had signed up for a MeetUp group on WordPress, and it was running from 6 PM to 9 PM that evening.

Part of me wanted to bail out of the meeting, but I also wanted to go.  Fears crept back in as I imagined that I would sit in a room of WordPress experts. Would I be wasting their time?  Would I look foolish or stupid? I had only been learning the software for about a month and felt very much a newbie. Dear reader, I will not allow my fears to determine who I am.  I put on my coat, plugged in the coordinates into my phones GPS, and drove to the meeting.

I found myself in a classroom with about 40 other people.  Time to put on my extrovert cloak. With a smile on my face, I introduced myself to the three people seated around me.  Soon we were engaged in a nice conversation. The formal part of the meeting consisted of a speaker talking about a major revision that was about to take place on the WordPress platform.  To my surprise, I understood what he was talking about and could see the implications of the upcoming changes. There were groups members who knew more than I did, but it seemed that I knew more than some others.  The meeting ended, and I said my goodbyes to my new acquaintances. I was happy that I went.

In total exhaustion, I returned home.  Julie was reading a book in our bedroom, but wanted an update on my day, especially on my meeting with the pastor.  I briefed her as best as I could. It was then time for my long-awaited shower. Extra hot, extra sudsy. I let the water run on my back as it relaxed my tense neck and shoulders.  The day was over.

Dear reader, we are who we are.  I believe that we all have strengths and weaknesses.  I accept the fact that I am an introvert, and I have used this knowledge as an advantage, rather than considering it a disadvantage.  I am a great independent learner, I am never bored, I come up with wonderful ideas when I am by myself.

However, there are times when I need to reach beyond my introverted self if I wish to move forward.  Sometimes the uncomfortable option is the right option. Some actions can be hard, but worthwhile. I feel that for me it is important to respect my personality, but still challenge it with reasonable risk-taking.

If we are unhappy, it is easy to blame our unhappiness on circumstances or other people.  However, it is our responsibility to make any change. We can’t expect others to usurp that responsibility.   I encourage you to gently step outside your comfort zone today and gain a little more control over your life.  Who knows where it will lead you.

My Mega Church

 

How WordPress Taught Me About Myself

Dear reader, I believe that everything we do in some ways connects to other aspects of who we are. We show our true selves in our everyday actions.  Things that seem unrelated are often related if you look closely enough.

In this post, I explore how the process of building web pages has also taught me about how I relate to people. This is less of a stretch than you may think.  Let’s start…

My adventure in creating websites started around 15 years ago and was directed more by need than want.  In those days I was a partner/owner of a medium sized psychiatric practice. With my two partners, I had built the practice into a thriving enterprise.

Most of our business was generated from former clients and referring professionals.  However, we knew that we needed a website, as it was becoming a common instrument that new clients used to find their next care provider.

I come from a blue-collar background, which inherently makes me a do-it-yourselfer and cost-conscious. I was already heavily invested in creating marketing and advertising materials for the practice and had been doing everything from brochure design (remember paper?) to head shots of the staff.

It was only logical that I build the website.  To hire someone to design even a simple one would have cost thousands of dollars, as well as countless hours of committee work to write copy, and approve design concepts. I felt that I had the potential to do the necessary tasks: photography, copy creation, design, deployment.  However, there was a problem, I had never designed a webpage, I had never taken a computer course, and I had never written a single line of HTML. In hindsight building a complex website was an insane thought. People spend years learning this stuff. What was I thinking?

Naturally, it was a massive project that was complicated by the fact that I had to learn everything on the fly. Initially, I tried to go the easy route by using the hosting company’s template-based web designer.  I wrote two entire versions of the clinic website with that program, but it just couldn’t handle a site as complex as the one the I envisioned. I recall spending an entire Saturday trying to upload a few more pages to the site, only to have it repeatedly crash.  Finally, I realized that I would have to go beyond the limitations of this easy software and use something more sophisticated. That moment was sickening to me, as it meant that not only would I have to learn an entirely new software package, but I would have to recreate every single page of the website again.

This process was occuring in my almost non-existent “spare time.”  I created extra working time by removing needed sleeping time. I know my partners had no idea of the hours that I put in. They assumed that I was able to build a site during my lunch break. For months most of my evenings and weekends were spent staring at a computer screen. Sure, my lack of knowledge made easy things more difficult, but there was also the reality that I was wearing all of the creative hats. It was overwhelming.

The more sophisticated software that I settled on was from a British company called Serif. It was graphically based and similar to the page layout programs that I had used for paper publications.  The familiarity offered me a small degree of confidence. However, building an interactive multimedia website is very different from placing photos and print on a physical page.

Eventually, I got the hang of it and created seven redesigns of the clinic site over ten years.  It wasn’t too long before friends started to ask me if I could help their small businesses and build a website for them. This is how I became a web designer/content creator.

In 2015 my friend, Tom, asked me if I would write some copy for his small business website.  He had paid someone to do the total creation of the site, and he wasn’t pleased with it. “I don’t think that the website represents me very well.”  He told me. “Sure,” I said. I was eager to repay a favor that he had recently done for me.

Tom is a smart and creative guy who has a sense of style.  Initially, I thought that he was overly critical of his site.  I assumed that a professional would know all of the tricks to creating a visually appealing and engaging experience. It was then that I looked at the web pages. His site was an example of “you don’t always get when you pay for.”  Cluttered, poorly written, lousy clipart, encyclopedia length boring content that was likely copied from elsewhere. It was not good.

“Tom, why don’t you let me build a new site for you?”  The words came out of my mouth without thought. “I can’t let you do that, I don’t want to take advantage of you,” Tom replied.  Suddenly, I found myself convincing him that it was OK, and a good idea.

Like most projects, it was much more complicated and time-consuming than I initially thought. Despite being a lot of work, it was fun and I felt good helping my friend. I was proud of the way the new website turned out. Simple, clean, beautiful!

Fast forward to 2018.  Tom had been doing some marketing research and decided that his site would be more searchable if it was created using the WordPress PHP format instead of the simple HTML of the site that I wrote.  He even found someone willing to port my created content to a shiny new WordPress site. So, what did I do? I took a look at the prototype site and saw a different vision. Once again I was asking my friend if he would mind if I would make some “adjustments.” Some of this may be grandiosity, some reality. I know Tom very well, and I have some understanding of his business. Two pieces of knowledge that his WordPress colleague didn’t possess.

Dear reader, you are reading this post on my WordPress blog site that I created several years ago.  It was a straightforward creation that involved a few mouse clicks. I set it up with no knowledge of WordPress in about 30 minutes. On the other hand, Tom’s site is a very complicated bonafide website that is loaded with all sorts of content. I was telling him that I could improve his site and I didn’t even know how to modify a single page in WordPress.  Why do I do such crazy things?

As you know by now when I don’t understand my behavior I ponder and try to figure it out.  This is what I came up with:

I love learning new things, and I love intellectual challenges.  Despite being slow going, there is a genuine thrill when I figure out even a small aspect of a new puzzle. Knowledge is my cocaine.

I have pride issues.  I put a lot of energy and effort creating content for his original website.  I want my work in a setting that adds to it and doesn’t detract from it.

I show that I care about someone by doing things for them.  Talk is cheap. Actions speak louder than words.

I want to justify Tom’s friendship with me.  I want to give him a good “return” on his investment in our connection.  This realization was a surprise. In reality, I know that Tom connects with me as much for my imperfections as my strengths.  I don’t need to prove my value to him, and I honestly feel that he would like me just as much if all we did was to hang out with each other. In fact, Tom is also a helper who is more comfortable taking care of, rather than being taken care of.

This need to be valuable to my friend stems back to a time in my life when I felt that I had little value. The, “I am not worth anything,” part of my life. This likely is also a reason why I did all of the extra work for my former clinic. It was a way to prove that I was worthy of my fellow doctor’s time and attention.

I am a protector. I have a strong maternal side to my personality. When I feel close to someone, I am constantly trying to make sure that they are safe and that their needs are met. I can guarantee that my friend does not need my protection. He is physically stronger than I am and has survived most of his life without my sage interventions. Luckily, Tom seems to understand my motives and tolerates my actions. He is happiest when his business is thriving. I want to make sure that his website does as much as it can do to help his business thrive. For whatever reason, I think I hold the key to making his website the best that it can be.

Conversely, my protective trait drives an immediate family member crazy. They view it as me trying to control them.  In reality, I’m just trying to make sure that they have everything that they need. However, I do understand their annoyance, and I have tried to modify my behavior.

These are some of the reasons that I came up with, but that is enough writing for today. Hopefully, this post will get you thinking about how the unrelated parts of your life that are actually related to each other.  Connect the dots and learn just a little bit more about yourself! Have a great day.

WordPress as an insight oriented therapist?