Tag Archives: Conflict

Be A Kid

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Scott Drotar 'Merica
Why are we blowing stuff up? ‘Merica. That is why.

The Fourth of July is a pretty big deal across the rural Midwest. While I know that places, like New York City, Boston, and Washington D.C., may put on some impressive shows and get all of the press, but if you really want to celebrate the Fourth, you need to come to the Midwest. The Fourth of July is sort of a perfect storm of holiday festivities in this area. You get to have a cookout during the day, relax with family all evening (typically over several adult beverages), and then watch fireworks in your backyard that night. While these are activities that most everyone likes no matter where they live, in small towns across the Midwest it is on another level. This immense enjoyment stems from the fact that this holiday is right in our regional wheelhouse. Because if there are three things we do well in “Small Town, USA,” they are backyard barbecues, family gatherings, and blowing stuff up. Combining these three components into one holiday, and then adding in the fervor and zeal that comes with celebrating your patriotism, creates a trident of unstoppable holiday spirit that develops into an insanely good time. As you can imagine, many of my favorite Summertime memories occurred during these epic celebrations of American spirit, especially the years when my parents would host a Fourth get together. One of these patriotic parties in particular holds a special place in my heart, not only because of the fun and fireworks and such, but also because of an important lesson that it taught me.

When I was growing up, almost every year my family would host a Fourth of July get together at our home. Other than the fact that the Drotars know how to party, my family would host the gathering because our backyard had a perfect view of the town fireworks display. This was critical for a great Fourth barbecue, as it meant that you could continue to enjoy your adult beverage (the fireworks area is alcohol free) and the explosive show without battling through a crowd of people searching for the “perfect seat.” I do not remember exactly what year it was, but when I was around 10 or 11 years old my folks hosted one of these Fourth of July barbecues. Relatives, family friends, and neighbors came over (comfy, lawn chair in hand), and we ate burgers, played horseshoes, and lit fireworks all day. When it finally got dark enough that night, everyone picked out a spot in the yard, leaned back, and watched the colorful explosions lighting up the sky. I spent the day enjoying the festivities with my childhood best friend (his whole family was there), downing Mountain Dew, lighting firecrackers, and having a great time. As he and I were taking in the fireworks that night, and being every bit the tenacious, pre-adolescent boys that we were, I experienced a fairly trivial event that, has not only stuck with me my entire life, but has ended up having a huge impact on me.

Scott Drotar Fireworks
Every time I see fireworks, I am reminded of the important life lesson they taught me. 

As the town’s fireworks display was about to get going that night, my friend and I picked out a great spot in my yard to watch the show. My younger brother and one of his friends had set up a few feet away from us to get a good view of the colorful combustions to come, and a few adults were nearby too. As the light show in the sky started, my cohort in crime and I overheard my brother and his friend talking about each round of blasts and rating each one on a 10-point scale (1 being a lame, kiddo sparkler and a 10 being air raids over Baghdad explosive power). Being the jerky, adolescents we were, my friend and I decided to poke fun at my younger sibling for getting so much enjoyment out of some town fireworks (because obviously we were way too cool and grown up to like something like that at all of 11 years old). After a few minutes of doing our best to humiliate my little brother, one of the nearby adults stepped in and told us crossly to “leave him alone.” Not being one who misbehaved often (or at least I did not get caught often), getting this gentle scolding made quite the impression on me. In addition to making me straighten up and stop my juvenile behavior, it also impacted me in a much more profound way.

This moment has stuck with me for years. For me, it is one of those memories that you remember in vivid detail, no matter how much time goes by. I think the reason that this fairly uneventful moment from my life has remained such a clear memory is that it reminds me of an important lesson. That night, my friend and I wanted to assert our status as “big, bad teenagers” by making fun of my younger brother for getting so engaged and having so much “childish fun” watching the fireworks display. We wanted so badly to be grown up and treated like adults, that we were not only trying to act like we were not excited about the explosive show in the sky (which we both knew was a lie), but we were also teasing others for enjoying it. As I have thought about this night over the years, I have realized how truly backwards my thinking was at that age. I should not have been trying to solidify myself as an adult, but instead doing everything I could to remain a child for as long as possible. Because while we all have to grow up in terms of our lives and place in society, we do not have to completely let go of the childlike wonder and exuberance that we have when we are young. This moment always helps me remember how important it is to “be a kid” sometimes.

Scott Drotar Leaf Pile
A leaf pile is all a child needs to be entertained for hours.

When you are young, you have the ability to get enjoyment out of almost anything. Give a kid a pile of fallen leaves, a big, cardboard box, or even just a pit filled with sand, and they will be entertained for hours in complete bliss. As you grow up though, and this is happening sooner and sooner in our society it seems, you start to lose this youthful creativity and happiness. As we mature, and become jaded by life’s obstacles and burdened with the responsibilities of being a grown up, our capacity to enjoy the simplest parts of life slowly slips away. This would not be so bad, but unfortunately once you lose this childhood gift, it is very difficult to get it back. In most cases, by the time you realize how precious this ability is, it is gone forever. That is why it is so important to recognize how priceless these feelings are, cling to them as much as you can, and appreciate their impact on your life, as you carry them with you into adulthood. I am so thankful that I had this moment to show me the importance of “being a kid,” as well as the maturity to recognize its value at a young age. This has allowed me to maintain some of my youthful exuberance, even though I have had to grow up faster than most, and I am certain that this has made an enormous impact on my overall happiness as an adult.

While I needed a specific moment from my life show me the importance of maintaining some of your childhood innocence and excitement, you can see the powerful effects of these emotions all around you. Think about the happiest people you know, or better yet the people who make you the happiest when you are with them, and then try to describe their personality. More often than not, the happiest people in your life are the ones who exhibit the most childlike wonder and fun. This does not mean that they are any less mature or successful as adults, but more so that they had the vision and mental perspective to recognize the importance of these feelings and maintain them into adulthood. No matter how busy your life is or how much stress and anxiety you have as a grown up, you have to remember that it is ok to “be a kid” sometimes. In fact, it is not only alright, it is recommended. Take the time, at least every few days, to let yourself enjoy the simplest things that make you happy, the way you did as a child. Splash in a mud puddle, go play with puppies at a pet store, or go to the park and sit on a swing. You will be amazed at how great this will make you feel, and if you let your “inner child” out to play often enough, you will find that your adult world is a much happier place.

Did this article leave you wondering something? Are you curious about a certain aspect of my life? Do you want to know my favorite color? Submit your question to “Roll Models Mail Call,” and I will do my best to answer it in a post.

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Discrimination

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As you have probably heard on the national news circuit recently, my home state of Indiana has been quite the topic of conversation lately. For those of you who do not know, on March 26th Indiana passed a piece of legislation called Senate Bill 101 (SB 101), better known as the “Religious Freedom Restoration Act.” This bill states that “a governmental entity may not substantially burden a person’s exercise of religion…” This may not sound so bad, but what this document opens the door for is pretty scary.  It implies that if a business owner does not want to provide his company’s services for a certain group of people because of his religious beliefs, that he does not have to. Believe it or not, a business in my tiny hometown of Walkerton, Indiana, which has a population of only 2,500 people, became the first organization to illustrate the dangers of this legislation. “Memories Pizza,” a small pizza place and one of very few restaurants in my little town, was the first business to openly state that they would deny their catering services to same-sex couples. Whether you agree with same-sex relationships or not, we all can agree that discrimination is bad, and that by allowing companies to deny service to any group of people they choose, we are opening the door for discrimination to occur. As I have been trying to stay up to date on this hot button issue that has been plaguing my hometown, I have been thinking a lot about prejudice and discrimination, and how these despicable parts of human behavior can impact your life.

Scott Drotar Memories Pizza
Memories Pizza, a restaurant in my hometown of Walkerton, Indiana, was the first business to show the dangers of the “Religious Freedom Restoration Act.”

Having been born with a severe, physical disability and having to use a power wheelchair my entire life, I have had to face a fair amount of discrimination. Whether it is a group of teenagers deliberately making fun of my disability at the mall or a business inadvertently not being wheelchair accessible, being singled out and treated differently as a result of something I have absolutely no control over is never easy to deal with. Even though throughout my life I have developed a lot of coping skills to help me manage the negative emotions that arise when these prejudicial situations occur, these feelings of discrimination still have an impact on me. It is not the judgment and discrimination from others that I struggle with however, but rather the feelings of self-discrimination that they create. For example, there are times when I will not go out to do something, because I am worried that I may be viewed or treated differently due to my disability. This self-discrimination is far more dangerous than the judgment of others, because it prevents you from even attempting to experience numerous parts of life. In reality, you could have enjoyed many of these situations without any feelings of discrimination arising, but because of your own fear of these potentially painful emotions, you prevent this from ever happening. As I have matured and learned how to better work through these difficult emotions, I have realized that this self-discrimination is actually what makes acts of prejudice so dangerous, as this is what gives these heinous acts their power.

When I was in my first year of college at Notre Dame, I had to write a term paper on civil rights for my required freshman composition class. As a part of this project, I also had to conduct an interview with someone and include the information I gathered in my paper. To satisfy this criterion I decided to interview a quite well respected professor in the African-American studies department, who I had had for another course the previous semester. During this interview he told me a story from his own life that greatly changed the way that I think about discrimination. Back in the 1970s, when he was 18 years old and was about to graduate from high school, he and his best friend, both of whom were black, decided to enjoy their final Summer of youthful freedom and independence by making a Jack Kerouac-like journey across the country. They spent countless hours planning their way, gathering the supplies they would need, and making all of the other necessary preparations to make their way from the “Deep South” to the California coast, and as the school year was drawing to a close they were merely waiting for graduation so that they could embark on this epic, once in a lifetime journey. Unfortunately though, they never made it to California. In fact, they never even made it out of their hometown. Despite the fact that they had spent a lot of their hard earned money preparing for this trip, devoted an enormous amount of time planning their route, and had been looking forward to their “On The Road” adventure for months, they never even left. They were so concerned, being two African-American, young men, about being discriminated against on their trip that they cancelled the whole thing before even starting.

Even though this was the late-1970s, and a lot of progress had been made in terms of racial equality and civil rights, the powerful effects of discrimination were still a major issue. There were still some people and places where outright discrimination would occur (and sadly, I fear there always will be), and the acts of prejudice and ignorance from these few individuals could be quite upsetting, painful, and at times even dangerous. While these prejudiced people were only a small minority of the general public, and the chances of coming into contact with them was extremely low, the power that these individuals had over their victims was quite large. Despite the fact that these two well-spoken, young men probably would have had no problems with discrimination during their cross-country trip, the anxiety and fear of this happening prevented them from even attempting to live out a dream that they had worked so hard to turn into a reality. This self-imposed discrimination is far more powerful than any form of prejudice that someone else could inject into your life, because it takes complete control over your actions. Whether these feelings of self-discrimination are justified or not, they were powerful enough to stop two young men from seeing the country, as well as keep me from experiencing certain parts of life, and this is what makes them so dangerous. The danger lies in the fact that self-discrimination does not need to have anything “real” attached to it in order to control you. Even though most of the potentially prejudicial situations that you avoid would have been discrimination free, you still do not get to enjoy them because your own self-discrimination and fear prevents it. It is this type of discrimination that you have to learn to control, if you want to stop the prejudices of society from having a major impact on your life.

Scott Drotar Civil Rights
While the “Civil Rights Movement” ended decades ago, even today discrimination is still a major issue in our society.

Just as developing the psychological tools necessary to cope with the prejudices of others is a long and emotionally painful process, learning how to deal with your feelings of self-discrimination is also an extremely difficult task. The first step is being able to recognize these feelings when they arise for what they are. You have to be able to see that your fears are stemming from your own feelings of self-discrimination, and not from something out in the world. The next step is the hard part. You have to be able to realize that your fear and anxiety is coming from possible, yet not necessarily probable, outcomes, and then convince yourself that you have no real reason to believe that you will be discriminated against beyond your own nightmarish thoughts. While this is a very difficult thing to do, if you can make yourself truly believe that your worries about being discriminated against are merely the worst possible outcomes and there is no reason to think they will happen, your feelings of insecurity and anxiety will instantly lose all of their power. Since self-discrimination has nothing “real” attached to it, once you convince yourself that your fears are just highly unlikely possibilities rampaging around your head, this once awful sense of dread ceases to have any meaning. You will immediately be free of your self-discrimination, and you will be overcome by a revitalizing sense of freedom that is beyond words. Now, this is not an easy thing to accomplish, but nothing worth doing ever is, and by learning to deal with your feelings of self-discrimination you open yourself up to a whole, new world of opportunities and experiences to enjoy.

Thanks to the enormous amount of vocal opposition to this unfortunate piece of legislation from all over the country, it seems like this most recent act of outright discrimination in my home state will be eliminated soon. Even though it looks like my hometown and the state of Indiana will survive these sad, despicable acts of public prejudice that have been wreaking havoc recently, the effects of this discrimination will be felt by those mistreated for years to come. Having to face these actual acts of discrimination, only makes your feelings of self-discrimination stronger and more difficult to cope with. In order to effectively manage and get beyond these emotions, you have to recognize that these fears, although extremely terrifying, are only figments of your imagination. They are only as powerful as you allow them to be. Remember that only a very small percentage of the people and places you come into contact with are prejudiced, and the vast majority of the situations you experience are wonderful and discrimination free. Take the time to slow down your thinking, regain control of your brain from your emotions, and see your feelings of self-discrimination for the illusions they are. This will allow you to eliminate these nasty notions from your life, and without these self-imposed obstacles in your way, you will be able to fully enjoy the happy, fulfilling life that you deserve.

Did this article leave you wondering something? Are you curious about a certain aspect of my life? Do you want to know my favorite color? Submit your question to “Roll Models Mail Call,” and I will do my best to answer it in a post.

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A Recipe for Success: Low and Slow

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Scott Drotar Secret Barbecue Rub
Covered with my secret barbecue rub and cooked “low and slow,” my ribs don’t even need sauce.

Over the last few years as I have been enjoying my journey through the culinary world, I have learned a lot, had tons of fun, and prepared some tasty creations (as well as some bad ones). While I have developed numerous skills to use in the kitchen and accumulated countless recipes though, without a doubt my forte when it comes to cooking is my barbecue, specifically my Kansas City style barbecue ribs. I can and do barbecue in several different styles, but my dry rub, Kansas City style is by far the best. My ribs are so moist and tender that when you bite into them the meat just melts in your mouth like butter, and this is while your tastebuds are exploding with delight at the smoky, sweet flavor engulfing them one by one. People have even referred to my delectable ribs as “heavenly meat candy.” Unfortunately, my dry rub recipe is a closely guarded secret that even my own mother does not know, so I cannot share it with you, but I have shared a KC style BBQ recipe on Pinterest that is very good and similar to mine that you will really like. Even more momentous than sharing this recipe however, which is saying a lot since I love barbecue, I am also going to pass on an incredibly important life lesson that you can learn by cooking good barbecue.

On the surface making good barbecue seems pretty simple. You just buy some baby back ribs, lather them up with sauce, and throw them in a nice, hot oven, grill, or rotisserie. Yet it seems like people who use this method always end up with a bunch of ribs that are tough, dry, and flavorless and always wonder why. Now, there are several things wrong with this bare bones, Neanderthal-like approach to barbecuing, but by far both the most costly and most common mistake is that they cooked their meat too fast and at too high of a temperature. Ribs need to be cooked slowly over low heat in order to remain tender and juicy, and by heating them up to 250° F or more (baby back ribs only need to reach a temperature of 175° F to be safe to eat) you are basically turning your great cut of meat into tasteless rubber. That is why every self-respecting barbecue cook remembers the rhyming phrase “always barbecue low and slow.” As critical as going “low and slow” is to making great barbecue though, it is possibly even more crucial in your life, especially when dealing with difficult situations.

When I got my trache when I was 15 years old, my life changed drastically overnight. In addition to just trying to recover from my near death experience, I also had a lot of new things to get used to and had to teach myself new ways of doing certain tasks. One of the things that was very difficult and frustrating to relearn to do was swallowing. As you can imagine, after having your neck sliced open and tubes put in, your throat can be a little sore, making swallowing pretty painful. Also, since I had been medically sedated for several days, it had been a long time since I had last eaten anything by mouth, and like any other muscles, the muscles in my throat had gotten weaker. This was especially dangerous because I was recovering from pneumonia, and if I aspirated (fancy, medical term for “swallow down the wrong pipe”) anything into my already weak lungs by not swallowing correctly, the infection could return. At the same time however, I also needed to consume as much food as possible, because while I was fighting for my life I had lost around 20 pounds. My weight of only 48 pounds when I was admitted was so low that my parents were actually questioned by a social worker from the hospital to make sure they were not neglecting to feed me. I had to get some weight back on quickly to regain my strength and fully recover, but eating was both painful and dangerous due to my difficulty swallowing. You can easily see how this put me in quite the pickle.

Scott Drotar Weight Loss
After my weight loss during my time in the hospital, my dog, Jorey, weighed more than me.

I realized that putting the weight back on was going to be a gradual change, since even without any swallowing issues it is only recommended to gain a few pounds a week. I also knew that there would be setbacks occasionally, and that I could not let myself get discouraged or frustrated if there was a day where I just could not eat much because of my throat. This also needed to be a slow process, because if I tried to eat too much, too fast I could end up doing serious harm to my already fragile lungs. Keeping all of this in mind and focusing on the long-term was my way of keeping my emotions low and remembering to take things slow, which would give me the best chance at successfully gaining weight. The importance of adopting this “low and slow” mindset is readily apparent when you contrast it with a more “emotional and fast” approach, as happened between my mother and I.

After I was released from the hospital and returned home, my mom was mentally, physically, and emotionally exhausted and raw from the horrific experience of nearly losing her son. As a result of this, she did not have the energy or mental ability at the time to see my weight gain situation as I had, which caused some tension between us. In her mind, even though I was home and no longer in danger of losing my life at any moment, I was still on the brink of death. She was convinced that if I did not get my weight up immediately, I was going to end up back in the hospital, or worse. While she understood that swallowing was painful and I was having to learn a whole, new way to eat without inhaling my food, my mother still was fixated on me eating as much as humanly possible. It was not that she could not understand or comprehend the difficult balance between gaining weight and swallowing correctly that I was facing, but her emotions had taken over and convinced her that if she pushed me hard enough I could gain 20 pounds in only a couple of weeks. Our differences in how we saw the situation I was in, my “low and slow” and my mother’s “emotional and fast,” created quite a bit of friction between us, and it even resulted in a lot of tension, some tears, and even a few major blowouts. Thankfully though, after a couple weeks my mom slowly got more rested and regained her control over her emotions, and with the help of my father as mediator we were able to sit down and work things out. Once she understood that my “low and slow” mindset was not me taking the situation lightly, but instead my way of creating the best chance for successfully gaining back some weight, she felt much better and supported my gradual approach. With us now on the same page as far as how to best fatten me up, I was able to successfully put on almost 12 pounds in the three months before Winter hit.

Scott Drotar Low and Slow
One of the most important things to remember to make great barbecue, and manage difficult situations in life, is to take things “low and slow.”

This story from my life is a perfect example of how keeping your cool and taking things gradually, going “low and slow,” can be a critical part of getting through difficult circumstances in your life. Chances are, if I had adopted my mother’s mindset and tried to gain back all of the weight in one meal, I would have ended up damaging my throat, slowing my recovery, or back in the ICU with pneumonia from aspiration. By taking things “low and slow” on the other hand, I was able to safely get back to a healthy weight in a relatively short amount of time, which definitely played a large part in my overall recovery from this tough period in my life. The next time you are getting ready to put some ribs on the grill, remember this story about my mother and I and be sure to cook your meat “low and slow.” It may take some patience and seem like a silly way to barbecue, but by maintaining this cooking method you will end up with ribs that are moist, tender, and full of flavor. More importantly, the next time you are presented with a difficult situation remember to step back and take things “low and slow.” If you keep your emotions in check and realize that great things often take time, you will find success much more easily. Just one more reason why barbecue is one of the greatest things ever. It not only excites your palette and fills your belly, it also carries important life lessons that will bring you success and happiness long after the bones are picked clean.

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Respect

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Scott Drotar Aretha Franklin
Aretha had it right when she sang that all we need is a little respect.

As a lifelong academic and someone who relishes logic and rhetoric, I am one of those people who loves a “friendly” debate. It doesn’t matter what the topic is (I have no shortage of opinions), I just enjoy the back and forth, premise-conclusion style dialogue of a heated discussion. Not to mention the fact that it is by discussing controversial issues  that we learn more about them and grow as individuals. I won’t lie though, the thing that I like the most are the powerful emotions that rise up inside me as these conversations really get going. That fire in your belly that swells up as you defend your position is something I enjoy immensely. As much as I love the passion and conviction that erupts within me during these civil arguments however, and as much as I want to “win” this oratorical fight to the death, there is one line I will never cross during these debates. I will not lose respect for the other sides opinion.

Having respect for others is probably the most important aspect of creating healthy interactions between people. We all want to feel that our bodies, thoughts, and opinions are respected, and we all feel violated on a very personal level when they are not. It is not important to us that other individuals necessarily agree with what we feel, think, and do, just so long as they respect our behavior and decisions. It is all about feeling in control, and being free to form our own thoughts is probably the most coveted type of control we have. As long as we feel as though we are respected enough to have whatever opinions we choose and maintain this mental autonomy, other people can argue with us as much as they please. In a nutshell, respect is the difference between attacking an argument and attacking a person. We are fine with others disagreeing with and arguing against our opinions (in fact weird people like me actually like it), so long as they are actually targeting the merits of our arguments, not us or our right to have them. We are even fine if they argue well enough to change our opinions and teach us something, so long as they respected us while doing it.

One example of this phenomenon from my own life that I have written about before is the way my relationship with my mother suffered when I decided to move to Kansas. I knew before I told her that she would not be too crazy about this idea, so I was ready for some resistance, but I figured she would remember that this was my decision to make and see reason. I thought that she eventually would come to terms with the fact that this is my life, that this is what I had worked the last four years to achieve, and that she had been preparing me my entire life to live on my own, so it was time to try. Her reaction to this information was much stronger than I had anticipated though, and as her emotions took over more and more she went from politely disagreeing with, to aggressively attacking, my decision to move out West. While I had prepared for her knee-jerk reaction and motherly anxiety after hearing my news, I had not prepared for the disrespect I felt by the way she responded to me. Since I was not ready for this verbal assault on my choice, I felt violated, put down, and like I was losing control over my life, and this caused me to become defensive and attack back. As a result of the disrespect I felt from this single, 10 minute argument, my mother and I spent the last few months of our time together barely speaking. This could have been avoided however, even though we were polar opposites on this decision (and still are to some degree), if we had merely maintained respect for the other’s feelings.

Scott Drotar Respect
My mother and I may not always see eye to eye, but we do try to always respect each others thoughts and feelings.

Whether you are pro-choice, own 30 assault rifles, want to build a “Great Wall of America” between the United States and Canada, or think aliens are going to beam down this Thursday to probe non-believers, you are free as a U.S.citizen to have whatever opinions you choose. You are free to have any crazy beliefs and feelings you want, with one condition. You can have your opinions so long as you do not infringe on the rights of others to have the same freedom. This most primal, deep seated right, that is at the core of our nation’s laws, is based upon the idea of respect. Our founding fathers realized how important this basic, human liberty is that they based our entire nation on it. If it was good enough for the father’s of our country, why is it then, that we now live in a society that is infested with disrespect everywhere you turn? We can debate that controversial quandary later (get it?), but whatever the reason, it is apparent that we as a society need a reminder of the critical role that respect plays in our lives. I hope that you will take some time today to think about whether you are respecting the people in your life as much as you should. I would imagine that everyone, myself included, will come up with at least one individual who they are not giving enough respect, and we should all make a conscious effort to change our ways, and if necessary, apologize for the disrespect we showed them in the past. This will go a long way in forging stronger relationships with the people in your life, as well as make our country as a whole a much better place.

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A Caring Conundrum (Part 2)

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In the first part of this series, I discussed the negative emotions I experience when I feel like I am being bombarded with medical advice by my nursing staff and loved ones when I am sick. While these individuals are only trying to help me, it can feel like they are trying to make decisions for me, and this loss of autonomy is a big deal to me. Having the perception that I have to decide between my control over my life and my health has actually caused me to make choices that were not in the best interest of my physical well-being in the past. Thankfully however, in addition to these negative feelings that erupt within me, there are also copious amounts of positive, powerful emotions to shift my perspective to a happier, more centered place. These positive feelings are the topic of this second part of my Roll Models Series, “A Caring Conundrum,” and this will be followed by the third, and final, part that ties everything together.

Scott Drotar CareStaf Nurses
I am so fortunate to get to work with a nursing agency like CareStaf.

Having had nurses since I was 15 years old, and having lived on my own with 24 hour nursing care for the last decade, I have pretty much seen it all when it comes to homecare. I have had caretakers that were good, like the one that gave an exam to a class I was teaching because I was too sick to, that were bad, like the one who stole from me, and that were just downright weird, like the one who called his parents his roommates. That being said, I know how extremely fortunate I am to have the nurses I do and to have a homecare agency like CareStaf. I truly believe that all of my nurses, as well as the office staff who do my scheduling and such, see me as more than a paycheck or business opportunity. They see me as a person trying to live his life, and they want to help make my life as great as it can be. These incredible individuals, all the way from the owner of CareStaf, Dennis, to the staffing coordinators to my nurses, don’t merely care for my health, but they care about me as a person. Especially in our current age where the almighty dollar reigns supreme, this is not an easy thing to find, so I am eternally grateful to have the nursing team I do.

When I get sick, it is this fact that my nurses care so much about me that makes them want to give me the best possible medical advice they can. They know how quickly my health can deteriorate, and they worry that something will happen to me. Although this can result in my feeling like they are trying to run my life, the way they care about me is something that I would not trade for the world. It is exactly that my nurses care about me as much as they do that makes it possible for me to live an independent life 600 miles away from my family knowing full well that at times I am going to end up sick and in the hospital. I can live this incredible, independent life because I know that when I get really sick and scared, they will be there for me. They will sit up in an uncomfortable folding chair beside my bed all night to watch over me. They will stay with me in my hospital room on their own time until my parents can get to me, just so I won’t be alone. They will stop hospital staff from hurting me trying to get chest X-rays and such by being my voice when I am too ill to speak for myself. They will not let anything happen to me, and knowing that fact is what helps give me the courage to live on my own.

Scott Drotar Care About Me
Here I am with some of the nurses that cared about me enough to make sure I survived my rambunctious, college years.

If not for this feeling that no matter what my nurses will keep me safe, there is no way I could lead the happy, fulfilling life I do. The way that my nurses care about me acts as a mental security blanket that brings me comfort in the face of my disease. While I have every confidence in my ability to make the best possible health decisions, if and when my body is just too sick to allow me to make these choices, it is nice to know that I have a whole team of nurses that will keep me safe. This safety net keeps me from living in fear of what my disability will throw at me next, because I know that even if I fail, my nurses will be there. The way they care about me and the trust we share is one of the most precious things in my life, and I am reminded of this fact every time I am sick by the concern and worry on my nurses faces as they work to give me the best medical care they can. Even though I may feel like I am losing my autonomy at times, this negative feeling is no where near as powerful as the love and compassion I feel as my nurses care for me.

Fortunately, as is almost always the case, when I am sick the emotions of love and caring that I feel are much more powerful than negative emotions like irritation and resentment. This is what allows for me to maintain perspective and appreciate the way my nurses care about me, but it is not as easy as merely recognizing the two sets of emotions. You have to be able to work through all of these complex, dynamic feelings in the moment in order to properly value how much they care. This ability to sort through both the good and the bad emotions that arise will be discussed in the conclusion of this series.

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The Unknown

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Over the years I have experienced more than my share of scary situations. I have been suspended upside down for 20 hours while my back was cut open so they could fuse a rod to my spine. I have had a hole cut in my throat so they could insert a plastic tube because I had stopped breathing. I have even been pulled over on the side of a toll road in the dead of night unable to catch my breath, just hoping that the ambulance would arrive in time to give me oxygen. I have endured all of these horrible scenarios, and even though every one of them was terrifying and took all of my courage and fortitude to survive, there is something else in my life that is much more frightening. This is something I have to face every day, and despite the frequency with which I have to deal with this scary situation, it never gets any easier to overcome. This idea that torments me is the fact that I have no clue as to what will happen to my body next as my disease progresses. It is the fear of the unknown that scares me the most.

Spinal Muscular Atrophy (SMA) is a progressive, degenerative disease. This means that with every passing day, my disability wreaks more and more havoc on my body. While it is a given that I will gradually get weaker and more physically fragile, how and when my disease will ravage me next is a complete mystery. On any given day I could wake up in the night drowning in my own secretions struggling to breathe. I could wake up in the morning and pull a muscle getting dressed, putting me on bed rest for a week. And I know one day I will wake up and not be able to swallow safely as my muscles weaken, forcing me to endure another surgery to insert a feeding tube to sustain me. I wake up every day not knowing whether this will be the day that my disease takes away another piece of my life, and even though losing the ability to do things is hard to manage, it is the not knowing that I find to be the most difficult aspect to deal with. It is like I am playing a game of “Hot Potato” by myself. Sometimes I feel like I can almost hear a timer counting down the time to the next attack on my body, and all I can do is wait, go about my life, and hope that when the timer reaches all zeroes that I will be strong and prepared enough to overcome this new obstacle.

I could give you any number of examples of times when I had to face the unknown in order to successfully make it through challenging events in my life. However, I think that the following situation involving my mom will most clearly illustrate how difficult dealing with the uncertainties of my disease can be, not only for me, but for my family as well. For as long as I can remember, I knew that I wanted to go off to college (specifically, the University of Notre Dame) after high school and live independently of my family. That was my life plan, my dream. My family was completely supportive of my goals, and they helped me do everything I could to make my dream a reality. I got perfect grades in school, effectively branding myself as a geek and killing my popularity. I did tons of extracurricular activities like band, drama, chess, and academic competitions, just in case being a nerd during school wasn’t geeky enough. I also studied my ass off for both the SAT and ACT, and I scored high on both tests. Finally, the time came to send in my application to Notre Dame and wait to see if my family’s support and encouragement and my years of effort would pay off.

Scott Drotar Notre Dame Acceptance
We all knew that great big envelope meant my dream of being accepted to Notre Dame had come true.

Four long months later, there was a large, thick envelope in our mailbox from the University of Notre Dame to Mr. Scott Drotar. Both my parents and I knew before even opening it, that I had achieved my dream and been accepted. While this life altering moment was filled with smiles, happiness, and tears of joy, this was also the moment that my relationship with my parents, mainly my mother, changed dramatically. It was at this point that my mom realized that my life plan of moving out on my own, which she had always vehemently supported when it was just some far off pipedream, was actually starting to take shape. It was no longer the hypothetical “someday, if I go off to college,” but the more concrete “next Fall when I go to Notre Dame.” The thought that I was going to move away from home, where she would have no idea who was taking care of me, if I was safe, or what I was doing, terrified her. Even though there were specific issues that she was worried about, the primary source of her fear was the not knowing, the “what if…?” For the first time in her life (and mine), she would not know if I was safe.

From about a week after I got my acceptance in April up until I left for the dorms in August, my mother and I had at best a strained relationship. This was tough to manage on several levels, but most notably this was the first time in my life that I did not have the unconditional support of my parents (my father silently supported me but had to keep the peace). While getting accepted had provided me the opportunity to pursue my quest for an independent existence, there were still lots of logistical issues to work through before I could actually make my dream a reality. Major hurdles, like how to get nursing paid for, training enough nurses, and finding a suitable dorm room, were all things that had to be addressed before I could safely live on campus. Up to this point, any time I needed help figuring out how to overcome the obstacles presented by my physical limitations to live a “normal” life, my mother had always been my biggest supporter and advocate, but when it came time to make arrangements to get me on campus, I was on my own. While she did not actively undermine my efforts to solve these logistical issues, she definitely didn’t help either. Any time I would start talking about an aspect of campus life or the dorms, she would quickly bring up some highly unlikely, off-the-wall scenario that could happen to harm me. Things like “what if your nurse abandons you, in the snow, no one walks by for hours, and a gnome comes and steals your phone?” Ok. Maybe she was not that irrational, but you get my point.

Scott Drotar Dorm Room
I was moving into a whole new environment. Scary looking, right?

I had a really hard time understanding why she felt the way she did while this was happening, but looking back now I know that she was reacting out of fear. Her fear of not knowing whether I would be safe. I know this because I remember how incredibly terrified I was of the exact same thing. I was almost petrified by fear at the thought of leaving the only life I had ever known for something completely unknown to me. I had no idea whether I would be able to keep myself safe and healthy on campus, and I was afraid of all of the “what if…?” type situations that would occur. I had it easier than my mom for two reasons though. First, in exchange for facing my fears of the unknown, I was getting to go on this great, new adventure and fulfill my dreams. This made the risk I was taking much easier to justify. Second, even though I was entering into a totally unknown situation to me, and I had no idea what would become of me, I was in the driver’s seat and had at least some control over my circumstances. My mother in addition to having to face her fear of the unknown, also had to come to terms with the fact that she would have no control over my life any longer. This is a double-whammy of feeling out of control and helpless, so I can understand why she reacted the way she did.

Not knowing what is going to happen or when is so frightening to my mother and I because in order to keep me alive and healthy for my entire life, we had to be able to plan for and anticipate every potential danger. By carefully mapping out how to handle possible problems that could arise, we were able to avoid putting me in harmful situations. Moving off to college, to live in an entirely new environment, with an entirely new set of people was such a big undertaking however, that no matter how hard we could try, there is no way we could anticipate many potential problems. I fully believe that if we had been given a list of all of the possible issues, even if it was 500 items long, that this transition would have gone much more smoothly. It was the not knowing and the inability to plan and feel in control that was so terrifying and debilitating. It was the “x” in the equation that scared us most. It was the fear of “what if…?”, the fear of the unknown.

Scott Drotar The Unknown
My mother and I both have a large fear of the unknown aspects of my disability that we are constantly working to deal with.

Despite having to make the bulk of the arrangements on my own and having to learn to do things for myself all at once, I was able to accomplish my goals and fulfill my dreams of attending the University of Notre Dame and living independently. In order to do this, I had to develop the skills to go about my life knowing that I have no idea as to when or how my disability will challenge me next. I don’t have all of the answers to coping with my fear of the unknown, and I still have to work at it to this day, but there are a few ideas that help me manage my feelings. It helps me to think of everything that I have accomplished despite my disability, especially those things that experts said I would never do. This helps me remember that I have, and I can, overcome a lot, which means that I will probably survive the next hurdle life puts in my path, even if I don’t know when it’s coming. I also try to remember that by living my life in spite of this fear and inspiring others, that I can help people, give my life meaning, and leave a legacy that my family and loved ones can be proud of. Most importantly though, I keep in mind that the whole reason I fear the unknowns of my disability is because I don’t know when they will occur. This means that they could happen 20 years from now, and that is a long time to worry about something. So, since I cannot stop it from happening and cannot control when, I may as well just live my life as if it is 20 years away. This prevents me from worrying about these unknowns that are out of my control, and it helps me focus my time and energy on living a happy, successful life. By thinking about things this way and through the support of my family, I can find the courage every day to get up and go about my day, and if it happens to be a day that I have to fight this disease, then I will gather my strength and fight like a champ.

We all have to go through situations where we have to move forward without knowing what is going to happen at some point in our lives. We like to know what lies ahead of us so that we can plan for our safety and success, and as a result when you cannot do this you feel fear and apprehension. You have to learn to manage your fear of the unknown, so that you can avoid having these feelings limit your life experiences and happiness. Recall all of the things you have accomplished, and trust that you have the tools to overcome a lot of adversity. Be an inspiration for others by living a fulfilling life in spite of your fear. Remember that you don’t know when anything bad will happen, which is why you are afraid, so it could happen decades from now, and you don’t want to waste that much time worrying about anything. By developing these mental tools and coming up with some of your own, you will find it much easier to cope with the unknown. With this fear out of the way, you will be able to enjoy and experience so much more in life.

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Book Review: “Getting To Yes” by R. Fisher and W. Ury

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It is time for the second installment in the “Scott Drotar Literary Review”. This week we will be discussing the best-selling book on negotiation, “Getting To Yes”. Remember as always that I am not a book critic, and these are my opinions. If you disagree with my thoughts, or better yet agree with them, please leave me a comment, and we can discuss it.

I will admit that I actually had this book on my “ebookshelf” for quite a while before I read it. I thought it would be a businessman’s take on artful communication that focuses on short-term gains instead of long-term effects on relationships. That is not how I like to communicate so I was hesitant to start it. It was well reviewed though, and I consult with a lot of businesspeople, so I opened it up thinking that at the very least, I would learn what not to do. I could not have been more wrong.

“Getting To Yes” is definitely one of the best books on communication ever written. The authors do an amazing job of showing how to reach agreement in the most difficult types of conversations. Not only that, but they also focus on achieving win/win outcomes that foster strong, long-term relationships. They accomplish this by introducing their four step process. Each section is loaded with examples, many of which are from the real world, that help to illustrate each part of the process. Everyone stands to gain from reading this masterpiece, whether they negotiate in the boardroom or at the dinner table. I find myself applying the lessons found in this book almost daily, and this book motivated me to go on to read their follow-up books “Getting Past No” and “The Power Of A Positive No”. I have nothing negative to say on this one, because they nailed it. It gets a “Yes” from Roll Models and a 5 out of 5.

5 Chair Rating

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