If I were a car, I would probably be a minivan. Sensibly designed with just enough flash to make me interesting. Ferrari’s are exciting, but if you need to get the job done you hop into a reliable and roomy Honda Odyssey.
Are you a person who likes to fly by the seat of your pants? I don’t fit into that category, I’m a planner and a tester.
A few months back my friend Tom and I installed a mains power port on the side of my campervan, and in the weeks afterward I created a simple power distribution system for the vehicle. However, I never operated it.
Dear readers, a Midwest October is upon me; perfect to do a little van exploration. With nighttime temperatures in the high 20s (-2C) it was time to test several different camper systems.
Early yesterday I pulled out the 30 Amp extension cord from the camper’s storage bin and attempted to connect it to the van’s receptacle. Crap! It wouldn’t go in. The pins on this type of plug are circular, and with some study, I was able to determine that they were slightly out of alignment. A little bending with my multi-tool and the plug slid in and mounted.
I went back into my van’s storage and located the $16 Walmart electric heater that I had purchased a few weeks earlier. I plugged it in, turned it on and… it worked! I was then off to the basement to find my 25-year-old sleeping bag. It is old and flattened, but it is also extra-long and thereby perfect for my 6’3” frame.
With heater and bag in place, I was ready to do a test run. The wilds of a National Park, you may ask? No, my driveway, of course! When I told Julie about my plans to sleep in the driveway, she nodded in acknowledgment. After 25 years of marriage, she didn’t feel it necessary to comment on the absurdity of my vision. My more adventurous friend Tom thought that I should try to sleep in the cold with the heater turned off. Likely, as some sort of manly exercise. It should be noted that Tom possesses an ultra high quality and very warm REI sleeping bag, as opposed to my 25-year-old “pancake.”
As bedtime approached, I gathered my camping essentials: water bottle, laptop, and iPhone. I traversed the 30 feet from my front door to the camper and entered with anticipation. It was cold! On went the electric heater powered by my garage’s outlet. I reached down and powered up the van’s 12V power system, and then flipped on its interior lights.
The heater seemed anemic, and I thought I would be spending the night freezing. But, in short order the van warmed up. I settled in my sleeping bag, fully dressed including a stocking cap. Like any other wilderness he-man, I opened up my laptop and checked Facebook, braving a weaker wifi signal from my house.
I worried that I wouldn’t fall asleep, as I fell asleep. Comfortable, warm, sleeping in a van parked in my driveway Silly for Dr. Mike, a 65-year-old physician, exciting for the 9-year-old Michael inside of me.
The outside temperature dropped to 29 degrees, but my little heater plugged on. In fact, I had to turn it to low in the middle of the night because I was getting too hot.
I write this the next morning after following my tradition of walking to Starbucks. Here I sit at my usual table, typing and sipping coffee. Mission accomplished.
My adventure may seem childish to you, or it may not. However, it was fun and informative for me. I tested out several of my camper’s systems and felt the security of reassurance. I had a “backyard” camping adventure. I had a good time.
Dear reader, so often we get locked into doing only “appropriate” behaviors. We don’t allow ourselves simple pleasures because we have deemed them childish. We criticize our children, “You are too old to do that.”
I am here to tell you that it is OK to explore the child in you because that is the part of you that still possesses wonderment. I challenge you to rediscover that aspect of you. I believe that you will grow just a little bit more in the process.
Why is it that I can focus on a single negative in my life while ignoring so many positives? How can I change this waste of energy?
I think my thinking pattern is similar to many others. I can let a single worry dominate me. Typically, I find that this stance is a waste of my time and energy. Yet, I continue to do it.
I have made attempts to change my behavior, and some of my efforts have been more successful than others.
I have gotten better at letting go of trivial slights. The driver that cuts me off no longer spoils the rest of my morning.
I also employ cognitive techniques to correct my perceptual distortions. When I get upset about something, I will pull back and logically explore the problem and reframe the information at hand in a more realistic way and less catastrophic way.
Also, I work hard to let go of situations that I have no control over. I’ll, “Let go and let God.”
The above techniques all fall into what I would call a pathology model. In other words, they focus on lessening my current worries. The problem already exists, and so I actively treat it.
Good doctors not only treat problems they also practice preventive medicine. I would like to think of myself as a good doctor and what I advise my patients can also apply to me. So how do I prevent worry? There are many ways, but the one that I would like to share with you today is called a gratitude list. This technique is simple, but it does require some practice and thought.
The positives in my life far exceed the negatives. However, I can take my blessings as expectations and thereby ignore their significance. A gratitude list is one way to acknowledge these good things, and when I do this, I automatically have a more positive outlook of my life.
Here are the steps I use.
-Once a day I think of 3-5 things that I’m grateful for. They can be significant things or minor things. For instance, I might be thankful for my health (major thing), and I also may be grateful for having coffee with a friend (minor thing).
-I make an effort to vary the things that I’m grateful for. In other words, I don’t repeat the same list every day.
-Sometimes I’ll write down my gratitude list, sometimes I’ll only make a mental note.
-I don’t just write down a list, I also think about each example on that list. I may recall that I’m no longer on any medication and that I’m able to walk long distances once again. I might think about a walk that I took and how much I enjoyed it. For my second example, I may be grateful for having people in my life who want to spend time with me. I might remember the conversation that I had during my coffee klatsch, or how much I enjoyed the taste of the coffee.
-If possible, I recall my gratitude list during the day, repeating the above technique.
When I first started this daily exercise I had trouble coming up with unique things to be grateful for. However, over time, it became easy. The trick is to limit your list to a manageable number. I find that 5 examples works for me. I want to have time to think about my list, I don’t want to write down a lot of meaningless examples.
By doing this exercise regularly, it has become evident that I have much to be grateful for. When I think about my life in positives terms I feel more positive about myself, I attract more positive people, and many of my problems feel more trivial. All of these benefits for the cost of a little time!
I would encourage you to make a gratitude list every day for the next 30 days. Let me know if it makes a positive difference in your life. If the answer is yes, it is easy to incorporate a gratitude list into your daily routine.
Last week I had surgery, a long surgery that required over an hour of operating room time, but the operation was not my greatest fear as I approached this process.
What concerned me the most? I feared having to get a pre-op clearance from my internist; a simple visit that would require less than 10 minutes of contact time. You may be thinking that my primary care physician is mean, rude, and evil. Of course, this is not the case. He appears to be a nice man and a good doctor. If I felt otherwise, I would not work with him.
So Dr. Mike, what is the problem? First a little more background information.
As a person who has battled obesity all of my life, I have become acutely aware of the stigma that comes with weighing excess pounds. Few human attributes can be ridiculed and condemned in the millennial “microaggression” culture of 2018. Imagine criticizing or mocking someone because of their race, sex, religion, sexual preference, gender identity, physical stature, or a multitude of other differentiating human characteristics.
Making fun of “fat people,” is an acceptable national sport, even though the CDC reports that over 70% of adults in the US are now overweight. Of course, as the overweight population explosion redefines the concept of what is normal weight, there will always be those outliers who exist beyond a standard deviation from that norm. There will always be a group to abuse with fat jokes, both overt and covert criticism, and outright disdain. If you are obese, it appears that it is OK for others to assume that you are lazy, dirty, and stupid.
We would never make such assumptions for other medical epidemics. Imagine someone undervaluing you because of your high blood pressure, or your fasting blood sugar? Just like obesity, these illness are caused by multiple factors: genetic, environmental, and lifestyle. Unlike obesity, there are good medical treatments for these ailments, making them easier to treat. The majority of folks with high blood pressure can significantly reduce health risks with medication management alone. However, the majority of obese people will continue to be fat despite diet plans, medications, exercise, and shaming television shows.
I lost over 100 pounds about 3 years ago. I did this after failing many traditional techniques of weight loss. I feel that my weight loss was indeed a miracle that was fueled by common sense, rather than modern medicine.
We are humans, not machines. We are motivated and influenced by a multitude of factors. This variability can be considered a weakness, but it should also be acknowledged as one of our greatest strengths. We are complicated, and as such simple blanket solutions have marginal utility.
Over the three years since I lost weight, I have regained a small percentage of my weight. Most people have told me that I look better with a few extra pounds. They say I look less gaunt, and more vital with this increase. Additionally, I have long shifted from judging myself based on a number on a scale. My lifestyle changes have been just that, they are not strategies to lose weight and thereby achieve some sort of false utopia. “My life will be good if I am not fat.”
Three years into this process:
I still can wear my same wardrobe.
I still exercise every day, walking from 3.5 to 8 miles.
I still avoid all forms of concentrated sugar.
I still practice healthy eating.
I still make an effort to eat more natural foods.
I still assess and correct hidden forms of weight gain, like emotional eating.
When I determine my current status I would say that my efforts continue to be successful, but what about the matter of my small weight gain, does this one objective parameter signify failure? I would say, “No.”
I sit in a chair opposite from my primary care doctor who is staring at a computer screen.
“You have gained weight.” My doctor says. My initial impulse is to apologize for my failing. I resist. My second impulse is to defend my position. I resist and remain silent. “Are you exercising?” I reply that I am and had already walked four miles before our appointment. “But what about cardiovascular exercise?” He retorts. And so it went. Three minutes of questioning that felt like three hours of interrogation. Pain always feels worse when inflicted on an open wound.
Dear readers, I’m am a resilient person. Besides, I am good at using the counterbalance of logic when dealing with my emotional exaggerations. However, there is more to this story than just a detailed account of me stepping on the scale and my emotional response to that event.
Being a physician, I understand the power that doctors have over their patients. Patients come to us in an extremely vulnerable state looking for help. Studies have shown that a statement like, “You need to quit smoking,” will convert some active smokers into former smokers. Unfortunately, in medicine one size does not fit all. It is easy for physicians to generalize the above truth and think that simple pronouncements can be used to motivate all lifestyle change. However, a doctor’s command is a partial solution at best, and should only be used when wielded within a broader understanding of what causes people to change.
Many of the illnesses that physicians treat on a daily basis have a strong lifestyle component. My weight loss eliminated my need for blood pressure tablets, high cholesterol medication, and a CPAP machine. So why is it that physicals don’t learn and employ simple motivational techniques so they can move their patients towards health? I don’t ascribe to know all of the answers to this questions. However, I do know some of them.
Physicians in the US work in a production model. We get paid by the volume of the work that we do. See fewer patients, make less money. As medical practices get bought up by business investors the push for physicians to do more continues to increase. A good business model consists of finding ways to spend less and make more. This fact is contrasted by a simple truth; we are caregivers, and most of us want to provide care.
Our contact with patients is reduced by the use of physician extenders. Someone else takes our patient’s blood pressure and obtains their chief complaint. We employ electronic medical records (EMRs), which provide a clear notation of our treatment plan, but does so at the cost of patient interaction. Patients now have the “privilege” of answering our questions as our eyes are focused on a computer screen instead of them. Patients want care from us, and we want to meet their needs. There is a pill for everything, and today’s EMR makes prescribing absurdly easy. Is writing prescriptions the same as providing care? I believe that it is only a part of our job, and it should not define us in total.
When I retired from private practice, I was fortunate to have patients write goodbye letters to me. Almost universally they said that they valued their time with me because I listened to them, didn’t judge them, and guided rather than controlled them. To do these things I needed to spend time with them. I would have made more money if I saw 6 people in an hour, rather than the two that I scheduled. However, I would not have known my patients as well, and more importantly, they would not have known me as well. Trust is a function of integrity multiplied by time. Trust by itself offers a positive corollary to patient satisfaction and well-being. Besides, a career that includes connecting with others is eminently more satisfying to we providers than one that does not. A win/win.
One factor needed to motivate change is time. Unfortunately, extending the length of appointments may not be possible in today’s corporate medicine climate. There are indeed a variety of stop-gap strategies that doctors can do to build a connection, such as deliberately spending a few minutes directly with the patient before turning to a computer screen. Such simple changes can make a patient feel more connected, but they still don’t address the elephant in the room.
How should doctors interact with patients to create change? Fat people know that they are overweight, and should lose weight. Alcoholics know that they drink too much, and should stop. Diabetics realize the importance of blood sugar control, and that they shouldn’t eat that extra donut. We live in a culture that shames, and it is likely that some will avoid being humiliated by their physician by avoiding seeking necessary medical care. I admit that I have been an avoider in the past.
Big problems become smaller when shared with someone. I am willing to tackle projects that I would not usually attempt when I have someone at my side. This phenomenon is even more evident if that “someone” has expertise that I lack. If you have been reading my prior post, you know that I have been converting a cargo van into a camper. I dare to significantly modify my van because I am doing the project with a friend who has expertise far beyond mine in such manners. We, physicians, have expertise far beyond our patients in such manners as health. Most reasonable patients accept this, despite the advent of the Internet. A colleague of mine has a cup in his office that reads, “Please don’t confuse my medical degree with your Google search.” However, most patient’s intrinsically understand our expertise, which is why they are seeing us.
Doctors need to connect with their patients as human being to human being, and they need to do this on a level that patients can relate to. We need to become trusted knowledgeable friends rather than overbearing, critical parents.
We need to understand where our patients are coming from, and how willing they are to make change. We need to problem solve with them. Imagine if my doctor asked me, “Are there any barriers that prevent you from seeking medical attention?” Or, “Are there any ways that I can help you with your lifestyle change?” Those simple questions would instantly change my relationship with my care provider. I would want to meet with him, and I would look at setbacks as problems to be solved, rather than justifications for criticism.
Once a patient’s cards are on the table, all things are possible. Is the doctor’s goal the same as the patient’s? What are the barriers to achieving the desired goal? What steps should be tried? How will progress be measured? How is a reversal of progress addressed? Empathy joins, criticism divides.
A meaningful connection with a patient doesn’t happen all at once. Relationships develop over time. However, imagine helping your patients make a significant and real change. Imagine the satisfaction of having a substantial connection with them. What would it be like to work with real people instead of being a reviewer of lab data? What would it be like to end your workday with the knowledge that you truly connected with someone in a meaningful and significant way that changed their life? What would it be like to move from treating diseases to treating people?
We blame our patients for their failings, while we steadfastly hold on to methods and techniques that simply do not work. Imagine if our relationships with our patients were more as a knowledgeable and caring peer rather than a stern and critical parent? Imagine yourself as the patient. You are aware that you have a problem and you need help. Who are you going to ask? Someone who tells you what you already know, makes you feel bad, and offers no real help? Probably not.
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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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.
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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.
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.
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).
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.