Category Archives: Emotion

Celebrate

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On this day 29 years ago, my parents welcomed me into the world. They named me “Scott,” which originates from the Old English term for the Gaelic warriors from Scotland. Even though they had no way of knowing what was in store for me or what sort of man I would become, it turned out that this name was extremely fitting for the life I would live. Because as they would soon find out, I was going to need all of the fight I could get to battle through all of the hardships that life was going to throw at me.

Scott Drotar Celebrate Life
To me, birthdays are a reason to celebrate life.

As you have figured out after reading this far, today is my 29th birthday. While for most people birthdays become less meaningful as you get older, for me the opposite is true. When you have a life expectancy of only 3 years, are told by numerous medical “specialists” that you need to live as a shut-in to avoid germs, and have gone into respiratory failure on multiple occasions, you look at your birthday in an entirely different light. Today I get to celebrate another year of fun that I was not “supposed” to get. I get to celebrate another year with my loved ones, another year of new experiences, another season of Notre Dame football. I get to celebrate living.

When you go about your life knowing that you have less time on this planet than most people, you see things a bit differently. I know that I will not live to be 70 or 80 years old, because my body will just not hold up that long. If I am lucky, I will be able to make it into my 50s before my body has had enough abuse that it decides it cannot fight any longer, and this reduced timeframe to experience the world has changed my perspective on some things. Since I have at best 50 years of living, and I am now 29 years old, I am on the backend of my life. Knowing that you have already lived over half of your days makes you look at the world through a different lens. You gain an understanding of what is truly important in life and what makes you happy. You strive to develop and maintain your relationships with loved ones and cherish every opportunity to create new memories with them. Most of all, you learn to value the amazing life you have had and appreciate the time you have left, which drives you to take advantage of every new experience you can find.

Scott Drotar Cake
Nothing beats a delicate, moist piece of yellow cake with creamy, rich, chocolate frosting on your birthday…except two pieces.

Even though my birthday marks another year of my life that is over, and it signifies me moving one step closer to my final days, I still look at September 10th as a day to celebrate. Today commemorates another year of happy moments with my family and another year of sharing my story with you. It means that I have successfully battled through another year of obstacles and proven the “experts” wrong by kicking SMA’s ass for another 365 days. It denotes one more year of memories with my parents and siblings that they will have to remember me even long after I am gone. If all of these incredible things are not reason to put on a festive hat, take the evening off, and have fun with friends, I do not know what is, which is why I still celebrate my special day to the best of my ability. I am not merely celebrating the fact that the Earth has orbited the Sun one more time (although I was not sure it would make it this year), I am celebrating all of the incredible experiences that filled this time. I am celebrating life. Plus, if nothing else, it is an excuse to eat cake, and everyone likes cake.

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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Surprises

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Having lived with a disease like spinal muscular atrophy (SMA) for almost 30 years, I have gotten pretty good at dealing with whatever crazy situations life can throw at me. I have had to figure out how to suction my lungs with a “dead” suction machine, do a two-person lift with one person, and find a unisex, wheelchair accessible bathroom at an outdoor music festival. If I can get through all of that, I can get through anything. That being said, I go about my life quite confident that there is nothing that can pop up to surprise me and throw me off of my game. I am as cool as polar bear toe jam. It takes quite a sticky situation to get my blood going and my heart pounding like a conga drum in Jamaica. At least, that is what I thought until about a week ago. Last week I encountered a set of circumstances that I would have never expected in a million years, and it not only surprised me, it completely threw my mind off kilter. By rattling me like this, I was forced to experience what it is like to feel out of control and navigate an unexpected situation, which reminded me about an important aspect of life.

Scott Drotar Surprises
If I can find a wheelchair accessible bathroom at events like this, I can get through any surprises that life can throw at me.

In order for me to get into and out of my wheelchair, there has to be two other people around to transfer me. It is not that I am heavy (in fact I am sure that all of my nurses could easily lift me without much effort), but since my body has to remain in a certain position during the transfer to avoid injury, it is extremely difficult for one person to do on their own. Since it is just my nurse and I here most of the time, and it takes two, able-bodied people to lift me, I schedule nurses and nursing assistants to come out to my apartment a couple of times a day to assist my on-duty nurse with doing a transfer. The lifting itself is extremely easy and is something that anyone with even an average amount of coordination can learn to do in a matter of minutes, so these individuals just have to come by, help with the lift, and leave (they are only in my home about five minutes). Due to the fact that this is a simple, quick task that nearly any warm-bodied person can do, my nursing agency can send pretty much any of their caregivers to come assist with it. While I do have a few “regulars” that do the majority of my transfers, every month there are a few lifts that none of my usual people can fit into their schedules, so I have gotten pretty used to having new individuals come by to give us a hand. Since it is such a fast, easy gig and having new people assist with lifts has become a normal part of my weekly routine, I was caught even more off guard when a completely unexpected situation occurred during one of my transfers several days ago.

Most days, I have a pair of transfers scheduled for late afternoon and early evening so that I can get out of my wheelchair and let my body rest for a few hours, and then get back up to have dinner and get work done. Roughly a week ago, I got up knowing that I had a new person coming by to help get me out of my wheelchair in the afternoon. If I am being honest, I will admit that training new caregivers to assist with a lift is not my favorite thing in the world. This has nothing to do with the people or even the actual process of explaining how to safely transfer me, but more with the “unknown” aspect of the whole event. It is a little stressful to meet some stranger, in five minutes verbally describe how you want them to literally hold your life in their hands, and then count “1, 2, 3, go,” hoping they understood your directions. They are nervous, you are nervous, and while everything pretty much always goes well, the entire event is riddled with stress and anxiety. Despite my jitters from knowing that I was going to have a new lifter that day, I was still in a good mood and having a decently productive day as it got to be about the time for my scheduled transfer. About that time, as my on-duty nurse and I expected from past experience, we got a phone call from my nursing agency saying that the scheduled lifter was having trouble finding my apartment (my apartment complex is a bit tricky to track down with GPS for some reason). The agency gave us his phone number, and my nurse called him to give him directions. It was at this point that I started sensing that something was not right.

I do not know how, but as soon as my nurse called and started giving this guy directions, I started to get this really bad feeling. The hair on my neck was tingling, my heart rate went up, and my stomach was going like an Amish butter churn after milking time. Call it ESP, divine intervention, or whatever else you want, but somehow my body knew that something was off, and that I needed to be careful. After a few minutes of listening to my nurse saying things like, “turn right at the next light….no, right….at the light…yes, the stoplight…,” the new lifter finally got to my apartment complex and was only a few moments from being in my home. During this little three minute window as he was getting from his car to my front door, I explained to my nurse how I was stressing out, that I had a really bad feeling about this transfer, and how I was thinking about not letting him do the lift. She heard me out and politely comforted me by reminding me that it was probably just nerves from having a new person doing the transfer and the frustration from trying to get him here over the phone, and she also added that I had not even seen him yet, so how could I know that it was a bad idea to have him lift. Despite the fact that everything she said was reasonable and true, her words did little to alleviate my fear, and my feelings of anxiety continued to grow. I just kept saying to myself, “I have a really bad feeling about this.” Then, as she was waiting by the window so she could see him coming up the sidewalk, I heard my nurse say, “No…Way…,” as her jaw dropped open in shock. It was as I looked over in her direction to decipher what her words meant, that I saw my new lifter, and finally knew what my body was trying to tell me.

Scott Drotar Cerebral Palsy
Individuals with cerebral palsy often suffer from various physical impairments, including contracures in their hands.

When I looked through that window, I saw something that I would have been so sure would never happen, that I would have bet my life savings on it. As my nurse just stared at me with this “How the hell did you know?” look on her face, I saw my new lifter slowly walking up the sidewalk. He was a white guy of about 50 with an average build and nice clothes, and he would have been exactly like a lot of my other nurses, except for one little detail. He was physically disabled. Yes. You read that right. My new caregiver, whose sole purpose for visiting me was to lift me in the air and hold my life in the balance, was physically disabled. I cannot be certain, but it looked like he had some form of cerebral palsy or other similar disorder. It mostly seemed to effect only the right side of his body, but his hand looked to have a severe contracture, his right foot was turned inwards, and he walked with a jerky, uneven limp (think of “Kaiser Soze” from the movie, “The Usual Suspects”). As big of an advocate as I am for the physically disabled community, and as much as I believe in not placing limits on other’s abilities, there was no way that I was going to let someone in his condition attempt to transfer me. It just would not have been a safe situation for anyone involved. Since I am extremely sensitive to the feelings of inadequacy that can arise when your disability makes you unable to do your job, this left me in the unexpected, and incredibly awkward, situation of having to come up with a way to account for why I would not need assistance with a transfer without embarrassing him or making him feel bad. And, as if that was not enough to deal with, I only had about 15 seconds before he would be at my door to do so.

My heart was going a hundred miles a minute and my mind was racing as I attempted to digest what I was seeing, while also trying to come up with a polite and tactful way out of this impossible situation. My brain had been hijacked by my emotions, and I was in full on “fight or flight” mode. I do not know where it came from, because when he knocked on my door and hobbled into my apartment I had no idea what I was going to say, but when I opened my mouth words started coming out (and believe it or not they actually made sense). I made up a story about how one of my clients had made a last minute request on their project, and I needed to stay up in my wheelchair to work on it and make the deadline, so I would not be needing a lift. I also explained that since it was not his fault that I no longer needed his assistance, and he had driven all the way out to my home, that he would still be paid for his trouble (my nursing agency sorts this out when these types of things occur for “real”). He seemed to buy my little ruse, as he said he understood that things come up sometimes that we cannot control (so fitting for the situation I was in), after which he promptly limped away from my door and back to his car. Once he was a safe distance away, my nurse turned at me with a look of both shock and utter disbelief, as if to say “Did that just happen?” and “How did you know?” at the same time. Without her having to say a word, I replied, “Yes, and I have no idea.”

Before I continue and discuss what I learned from this unlikeliest of scenarios, I thought that I would briefly explain how this whole debacle occurred. I am sure you are thinking, “How could a home nursing agency send a physically disabled caregiver to do a transfer?” (much like my nurse and I were after it happened). I want to first make it clear that even though this man was obviously disabled, it was not so severe that he would be unable to do most tasks that are required of nursing assistants. Just from meeting him I could tell that he was a kind, caring person, and I am sure he would be great in a lot of home care settings, but he just was not physically equipped to safely transfer me (my “disabled employment” soapbox speech is over now). My nursing agency was aware of his disability, and he was scheduled to do my lift by mistake. Since anyone, or as we now know almost anyone, on their payroll would be able to assist with my transfers, when they get a shift that my “regulars” cannot do, they just call any of their employees who are available to see if they can come fill in. Even though they were aware of this man’s disability and had marked it on his file, they never put it together that he would be unable to transfer me, because it is a very simple job that “anyone” can do. It was just a matter of human oversight, or as I like to call it, “the downside of running on autopilot,” that led to this unexpected set of events. And despite how much stress it caused and the awkward moments it produced, everything turned out alright, and it reminded me about an important aspect of life.

Scott Drotar Calendar App
We use everything we can think of, like the calendar app on our phones, to try to avoid unexpected situations.

If nothing else, this entertaining anecdote from my life is a wonderful example of how you can never know what life is going to bring. No matter how long you live or how many things you experience, there will always be scenarios that come out of nowhere and surprise you. While we all try to avoid these types of situations like the plague by having calendars on our phones, automating repeated activities, and keeping the same routine every, single day, this does not mean that there is nothing to be valued and appreciated in these stressful moments. These unexpected, awkward events have the ability to give you a new perspective from which to look at your life. They give your mind the shock it needs to come out of “autopilot,” so you can really think about what you are doing. This mental “wake-up call” allows you to examine your day-to-day life and routine from a more objective place, which helps you improve your life. These unlikely situations give you perspective on your world in another, more important, way as well. It is in circumstances like this that you get to see who you truly are deep down inside. When you are caught off-guard and placed in a difficult and unfamiliar situation, you get to test yourself and see what you are made of. Have you developed the mental tools to assess, adapt, and overcome this unforeseen, trying turn of events, or will you let your emotions overwhelm you and fall apart? While obviously we all hope we have the ability to adjust and persevere through anything, regardless of whether you successfully navigate through situations like this or not, you still gain valuable insight into your life. These moments act as a barometer to show us who we are and tell us what skills we need to work on to live happier, more fulfilling lives.

As they say, life is full of surprises, and I would not have it any other way. While a lot of these surprises in life, like my adventure with a physically disabled lifter, are so awkward and stressful that we try to avoid these situations at all costs, that does not mean we should not appreciate them. These scenarios, where the rubber meets the road, are the moments that test your mettle and show you what you are made of. By forcing you to look at yourself with open eyes, you gain valuable information that you can use to better yourself and improve your life. While I will always try to be prepared and religiously stick to my daily routine, my recent unexpected experience has reminded me that you need to appreciate these shocking situations when they occur and use the information they give you. They will help you become a better person and enjoy a more fulfilling life. So the next time you get caught in a surprising situation, before you dismiss this stressful event as pure annoyance and go right back on “autopilot,” take the time to appreciate this part of life. Look at the world, both around and inside you, and examine what you see. You will be amazed at what you find out, and this information will give you the priceless power to bring happiness to your world.

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 Step Forward

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Scott Drotar Zoom Soldier 8 Flyease
This Summer, Nike released the first, major label, athletic shoe designed for people with physical disabilities.

Although it may not have made the primetime news hour or appeared on your Facebook feed, the disabled community celebrated a monumental moment last month. On July 16th, Nike released the first, major label, athletic shoes designed specifically to help physically disabled people. The shoes are fitted with a hidden zipper that allows individuals with limited motor function and sensitive feet to easily get the shoes on and off, while still maintaining the look and function of a typical Nike. For the initial release, this adaptive shoe design, named “Flyease,” was fitted to the Zoom Soldier 8 athletic shoe, which is endorsed and designed by LeBron James. This huge step forward in fashion for the disabled community, which was a more than three year effort between Nike, LeBron James, and the disabled young man that got the whole project started, is much more than just a piece of stylish footwear though. It provides yet another way to give those with physical disabilities the ability to live the independent, “normal” lives that we are working to achieve. This breakthrough has already had a large impact on my life, not only because I am a big “sneakerhead,” but because it gave me back a piece of my world, and reminded me of an important lesson along the way.

Several years ago, a young man with cerebral palsy (and a diehard Nike fan, like myself), Matthew Walzer, wrote a letter to Nike CEO, Mark Parker, that took the internet by storm. Walzer was going to be heading off to college soon, and despite his disability he was able to do most everything necessary to live on his own in a college setting, except putting on and tying his shoes. This meant that either he would have to wear ugly, adaptive, orthopedic shoes (something no self-respecting shoe enthusiast would ever do) or have an attendant help him put his shoes on every morning (something no disabled person, especially a teenager, wants). Thanks to social media this letter eventually made it to the desk of Parker, who not only took it to heart, but decided to put one of his top designers, Tobie Hatfield, in charge of the project. From that point on for the next three years, Hatfield, Walzer, and numerous other individuals, worked diligently to turn Walzer’s dream into a reality. The short video below gives more of the details behind how a young man with cerebral palsy, an NBA superstar, and the world’s biggest shoe company, helped the entire disabled community take a huge step forward, and I encourage you to watch it, as it does a much better job of telling this story than I ever could.

While I do my best to look good (and I think I do a damn good job), I will be the first to admit that I am not what you would call “fashionable.” I can put together an outfit and make sure my shirt and pants match and such, but beyond that I am pretty clueless in terms of style, with one exception. I have this enormous infatuation with shoes, and specifically athletic shoes. There are few things better than getting a new pair of Jordan’s, lacing them up, and rocking them all day. When I go out with friends or on a date, I usually pick out the shoes I want to wear first, and then find an outfit that will match (instead of the other way around). In satisfying my desire for great shoes, I have accumulated quite the collection of footwear over the years, and while I do not know the exact number of pairs I own, I do know that I have to use three different closets to store them all. As strange as it may be for someone who has never taken a step in his entire life, I just love shoes. It is this great appreciation for fly, fabulous footwear that has made the last couple years somewhat difficult for me, as I have no longer been able to wear any of my beautiful shoes.

Scott Drotar Matthew Walzer
Matthew Walzer and Tobie Hatfield, the main duo behind the “Flyease,” have brought major progress to the disabled community.

About two years ago, I had a three month stretch filled with health issues. I was in and out of the hospital, had to have three weeks of IV antibiotics at home, and even had my mom come out for about two weeks to help my nurses with all of the additional care I needed. In short, it was a scary, hellacious time, but thankfully I had the strength and determination to get through it. As happens whenever I get sick and spend an extended length of time in the hospital though, my body got weaker during this period as a result of not being active and doing the things I usually do. One of the ramifications of my body’s deterioration from this less-active lifestyle was that my feet and ankles were no longer strong enough to easily put on shoes. Since I was always either in the hospital or at home recuperating during this time, I went quite a while without wearing shoes of any kind, so the muscles around my ankles got weaker. Just like so many things in life, when it comes to bodies suffering from SMA, “If you don’t use it, you lose it.” I could still get certain pairs of sneakers on with enough effort, but it was a difficult, painful process, and I was risking a broken bone in my ankles every time I forced them on. As much as I love my kicks, I simply could not justify risking bodily injury in the name of shoes, so I have not worn them much at all since this time.

No longer being able to wear any of my shoes was tough for me. Of course, there were the natural feelings of loss from having something I really enjoy taken away from me, but as hard as it was to watch my magnificent collection of footwear collect dust for two years, another less obvious aspect of losing this part of my life was much more difficult to deal with. Losing this piece of my world had an enormous impact on my self-image. Especially early on after not being able to wear any footwear, I felt almost naked when I would go out in public without shoes on. It felt so weird to be dressed nicely with a button down shirt, nice pants, some pricey cologne, and…socks. It just did not feel right. It was one more thing about me that was different from the norm, one more thing that accentuated my disability. Even though I was well aware that missing shoes are pretty minor compared to being in a power wheelchair and having a plastic tube sticking out of my throat, this subtle change in my appearance was still a big deal to me. I was sure that people would see me as “more disabled” and judge me differently as a result of not wearing shoes and looking less like everyone else. I thought that people would look at me and think, “Oh, look at that poor, crippled boy. He can’t even wear shoes, but he tries so hard to look handsome.” These types of judgments are the exact opposite of everything I stand for as a disabled person, so they made a huge impact on me. For quite some time, I would only go out if I had to (like for a doctor’s appointment or a Roll Models talk), or I would put myself through the painful, risky process of putting on a pair of shoes before leaving my apartment. It took the better part of a year before I started to feel at all comfortable going out in public without shoes, and even today I am not completely at ease with it. After a lot of time spent examining these feelings of insecurity though, I eventually remembered a memory of my father, and this moment of clarity helped me put things in perspective and get over most of my self-image issues.

Scott Drotar A Step Forward
LeBron James was eager to put the adaptive “Flyease” technology in one of the shoes in his Nike line.

When I was a teenager, my dad, who was a teacher at my high school, conducted a social experiment. He felt that people, especially the adolescents that filled his classroom everyday, were far too concerned with their clothes and how they looked. He was not saying that you should dress like a slob, and anyone that knows my father will tell you that he is always “put together,” but just that you should not be spending hundreds of dollars on outfits and getting your hair done every week. He was convinced that as long as you look at least close to “normal,” that others will not even pay attention to what you wear or how you do your hair. To test his theory, he decided to wear the exact same outfit, black shoes, blue pants, black belt, and a white shirt, to school every day until someone noticed (even my siblings and I did not notice until he told us). I do not remember the final count, but I know that he made it well over 50 days without anyone saying anything. That is nearly an entire school semester of wearing the same outfit (he had several sets) without a single staff member or student taking notice. This outcome, in addition to proving my dad’s point, taught me an important lesson. It showed me how your appearance matters a lot more to you, than it does to anyone else. This means that as long as you feel comfortable with how you look, then what everyone else sees does not really matter, because they are not paying that much attention anyway. This subtle change in how you think about your appearance may not seem like much, and it really did not resonate strongly with me either for several years, but it turns out that this shift in your perspective can have a large impact on your life.

When I first lost my ability to wear shoes, it was a little surprising to me that something as trivial and vane as wearing shoes could have such a huge influence on your confidence, but whether you like it or not, how you look and what you wear does play a large role in how you see yourself. After I first recognized this fact, I was a little disgusted with myself for being so vane and letting something like shoes have so much control over my life, and then I remembered this story about my father’s fashion experiment. Once I took the time to really examine my feelings, I realized that we all want to feel good about the way we look, and this is ok, as long as you feel this way for the right reasons. If you are trying to look a certain way to feel comfortable and confident in your own skin or make a point, that is a good thing since it will bring you happiness, make you feel more confident, and help you achieve your goals. It is when you start trying to look a certain way for others, that these thoughts become a problem. These types of feelings will only ever bring you unhappiness, because you can never be the perfect image of someone, so you will always be trying to look “better.” Furthermore, when it comes down to it, the only person’s opinion of your appearance that matters is your own (and maybe your mother’s, because your mother’s opinion always matters).

Scott Drotar My Flyease
I could barely contain myself when my “Flyease” came in the mail. I finally have shoes again!

As I said before, this may seem like mere semantics, and it is a very fine line between confidence and vanity, but this minor shift in your frame of reference makes a major impact on your life and happiness. It was only after I fully came to understand this idea that I was able to overcome my own feelings of insecurity about not wearing shoes. I stopped worrying about what other people would see when they looked at me, and started focusing on what I saw when I looked at myself. With or without shoes, when I saw myself in the mirror, I saw the same smart, charming, sexy guy that wants nothing more than to share his story and make people happy. I finally realized that other people would not notice or even remember whether I had shoes on 15 minutes after meeting me. Once I accepted these notions the majority of my feelings of self-doubt about my appearance disappeared. I still feel some sense of awkwardness when I go out without shoes on, but these feelings are no longer a result of how I think others will see me, but how I see myself, since I do still love shoes. Strapping on a pair of “Air Force Ones” and building a killer outfit around them makes me feel good, which is something I will always miss (maybe not thanks to Nike), and that is ok. Because while I may never feel completely at ease without my footwear, at least I know that I am trying to look good for the right reasons, for me.

The release of the Nike “Flyease” is a big moment for the disabled community. It is going to give individuals, like Matthew Walzer and myself, the opportunity to continue to enjoy and express our love for stylish footwear despite our physical limitations. While this alone is a huge achievement worthy of praise, what Nike has done with this shoe is much bigger than fashion and footwear. These shoes are going to help thousands of people with disabilities regain their confidence and sense of self, or perhaps give it to them for the first time. In a similar way that “Locks of Love” provides wigs to sick children so that they can go out in the world feeling good about the way they look, Nike is giving countless individuals another way to combat the mental and emotional aspects of having a disability. I cannot tell you how great it felt when I put on my “Zoom Soldier 8 Flyease.” It was a feeling I will never forget, and I could literally feel the stress that comes over me from not wearing shoes just evaporate the first time I put them on without pain. It is this emotional impact that is so monumental and will change people’s lives. I am so thankful that Nike was willing to take a chance and create a shoe for those who are “different,” and I am excited to see how this adaptive fashion grows now that the ice has been broken. Whatever comes next, I can guarantee, being the diehard “sneakerhead” that I am, that I will be first in line to buy it.

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: The Blissful Bite

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Scott Drotar Plate Of Food
I get a lot of enjoyment out of creating a delicious plate of food, and this happiness comes in many forms.

As you have learned over the last year or so, I love to cook. Chances are, if I am home and am not working, I am either preparing food, reading a cookbook or food blog, or watching the “Food Network” (or all three). I get so much happiness out of putting a recipe together and preparing a tasty, new meal, and this happiness comes in many forms. Of course, I get enjoyment out of feasting on all of the tasty food that I make, as I love to eat, but the pleasure I get from cooking goes far beyond that. The mental process of learning how to create and manipulate flavors fascinates me, and this mental “feasting” brings me a whole other type of bliss. I also get a sense of delight from creating a dish and bringing something to life in the kitchen. This act of turning a set of seemingly random ingredients into a delicious meal gives me yet another type of happiness. There is also one other source of joy that my culinary adventures bring me, and this type of happiness is greater than all of the others combined. This form of happiness is what makes me truly love cooking, and it is what will keep me experimenting in the kitchen and playing with flavors for the rest of my life.

Most of the time when I am cooking, I am only making food for myself (and possibly my nurse). While I have a blast doing this, and I get a lot of joy out of my time in the kitchen, cooking for myself is not nearly as fun as preparing a meal for my friends or family. Having others eat and relish in the flavors I put together is the best part of cooking, and it is what brings the most happiness into my life. There are few things I like more than watching someone gleefully savor each and every bite of a meal I created. Watching someone close their eyes as they blissfully take in the tastes and textures dancing on their tastebuds in total contentment (something I like to call “the blissful bite”) brings me more happiness than almost anything else in the world. You would not think that something so external to me, like who is enjoying my food, would play such a large role in determining my level of happiness, but surprisingly it does. Being the introspective person I am, I have spent a fair amount of time thinking about this phenomenon and examining these different types of happiness, and these hours of self-reflection have helped me to better understand what happiness is and how it functions in your life.

As much as I would like to take credit for being the first person to realize that the happiness in your life comes in many shapes and sizes, it turns out that this concept has been around for thousands of years. Aristotle is often cited as the first person to present this concept, and numerous other philosophers and theologians have also discussed this idea over the last several centuries. In Aristotle’s depiction of happiness, he identifies four

Scott Drotar The Blissful Bite
The best part of cooking is watching others enjoy my food, especially when they take “the blissful bite.”

“levels of happiness,” and as you move up through the levels (i.e. from “level 1” to “level 2”) the intensity, or magnitude, of your happiness increases. The first level is the type of enjoyment you get from material objects and such. In my cooking, this is the type of happiness I get from eating the food I make. The second “level of happiness” comes from the feelings of achievement and accomplishment you get from completing a task or project. For me, this is the joy I feel from creating a great meal and applying my knowledge of flavors. The third “level of happiness” is derived from doing things for others or bettering the world around you. When I cook, this is the amazing feeling of euphoria that I get from watching my friends and family enjoy my food (and take “the blissful bite”). The fourth, and final, type of happiness comes from feeling connected to the universe/a higher power, and it is seen as the ultimate “level of happiness” and is what we should all strive for throughout our lives (Unfortunately, I have not quite gotten to the point where my culinary skills are on a “God-like level” yet, so I do not have a cooking example for you, but I will keep working on it.).

Even though it may have been discovered thousands of years ago, as you can see from my examples above, this notion of happiness coming in multiple forms is just as applicable today as it was then. Not only has this concept stood the test of time, but it can also be applied to nearly every person’s life. Think about your feelings during the Holidays. You get less enjoyment out of receiving a gift (“level 1” happiness) than putting up and fully decorating a gorgeous Christmas tree (“level 2” happiness), and then you get even more happiness than that from giving someone else a gift they really wanted (“level 3” happiness). Depending on your personal beliefs, you could even make the case that you get an even greater level of elation from attending “Midnight Mass” or another seasonal, religious service, which would be the highest “level of happiness” there is. We have all experienced these types of feelings, and you cannot deny that the warm, fuzzy, full-bodied bliss you get from giving the perfect present is much more fulfilling than the enjoyment you get from receiving a gift. As the old saying goes, “It is better to give than to receive.” And thanks to Aristotle, now we know why.

Scott Drotar Levels Of Happiness
The different feelings of joy you experience doing various Christmastime activities are a perfect example of the different “levels of happiness.”

If two, drastically different events, like my feelings during cooking and the joys of Christmastime activities, can be explained by this concept, that is good enough to make me a believer. I am certain that as you think about the things that you enjoy doing, that you will find that these “levels of happiness” are present in your life as well. The activities that bring you the most fulfilling feelings of happiness are the the ones where you get to do something for someone else. Whether it is watching them take “the blissful bite,” seeing them open the perfect, Christmas gift, or some other altruistic activity, the things that bring the most joy to your life are those that allow you to bring happiness to others. As you recognize this mind-blowing fact, you realize that helping others is not only the “right” thing to do because it makes their life better, but also because it creates the greatest type of happiness in yours. Once you fully understand and accept this important lesson, not only will you feel a larger sense of enjoyment in your life, but the world as a whole will be 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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SMA Conference 2015: Understanding

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Over the weekend, I got to attend the annual Spinal Muscular Atrophy (SMA) Conference. This was my first time being able to go (because it was held at the Westin Hotel in Kansas City about 20 minutes from my apartment), and while I feared that I was overly excited and had created far too lofty expectations, it turns out that I had no reason to worry. The conference, which was the second most attended conference ever for “Cure SMA,” not only met my high expectations, but surpassed them in every way. I had a phenomenal time, met some amazing people, and learned a lot about how to live with this horrible disease. In addition, I got the opportunity to share some of my own experiences about creating a successful life with SMA, as a member of a panel discussion that was held on the final day of the conference. After spending the first few days of the conference getting to meet and talk with some of the inspiring individuals trying to figure out how to give their disabled children and families a fulfilling life (much like my parents did many years ago), I felt extremely honored to get to pass on what I have learned from battling this disease for almost 30 years. This event touched me and impacted my life in so many ways that there is no way that I could fit everything I want to share with you in one post. So, in order to make sure that I adequately discuss all of the important things I learned, I will be writing several articles about the conference over the next week or two. Today you get the first of these posts, which discusses the first lesson that was passed on to me, and it was given to me before I had even made it into the hotel.

Scott Drotar Cure SMA Staff
The Cure SMA staff made this conference an amazing experience for everyone attending.

Before I get into the first part of my experience at the conference and the lessons I learned, I have to first tell you a bit about how well-run and efficient this event was. I cannot say enough about how great of a job “Cure SMA” did in making this weekend a success. If you have ever organized, worked at, or even just attended a large, multi-day conference, you know that events like this are incredibly difficult to run and often seem a little chaotic. There are just a lot of moving parts to keep track of both before and during an event of this magnitude, and no matter how much you plan and prepare for potential obstacles, there are always going to be unexpected issues that come up along the way. While I am sure that the SMA conference was no different, and it certainly had its own share of problems that popped up, from the outside as an attendee you would never have known. Everything, from the parking accommodations to the audio/video equipment to the scheduling of the various workshops, was carried out masterfully. The “Cure SMA” employees and the volunteers at the conference did an amazing job of keeping things running smoothly (and even more impressively, on time), and I believe I speak for everyone who attended when I say “thank you” to these awesome individuals. It is only through their abilities to prepare for everything they could and overcome the unexpected obstacles that arose (two skills that all of us with SMA have had to master and appreciate), that this year was such a success.

All of the time and energy that the “Cure SMA” staff put into organizing the conference is what made this event such an incredible experience. Like I said, while I have been to academic conferences and such over the years, this was my first SMA Conference. In fact, this was my first conference of any kind that focused on disabilities, so I was not sure what to expect before I arrived. It had been several years since I had been around lots of other people in wheelchairs, and I had never been around this many other physically disabled individuals, so I knew that this would be different from any event I had ever been to. During the days leading up to the conference I kept wondering what it would be like at the hotel. I kept thinking about silly, little things like how long the wait for an elevator would be at a hotel completely booked by people in wheelchairs. Or how loud a room filled with hundreds of ventilators and suction machines would be. These are obviously trivial things that would have no impact on how good the conference was, but for whatever reason these are the things I thought about (the elevator line was long, but no one was in a hurry). Thinking about these logistical challenges and such only fueled my intrigue and anticipation for the conference, and even though I had no idea what to expect, I was excited and ready for this adventure, which I knew would be full of surprises and new experiences.

Scott Drotar SMA Community
This year the SMA community came out in droves, making this conference the second most attended conference ever.

The first sign that this was going to be different from anything I had ever experienced occurred before I had even entered the hotel. As we drove up to the Westin and turned into the circle drive by the front entrance to unload me and valet my car, all you could see was this caravan of conversion vans with wheelchair lifts. They were lined up on either side of the driveway in two long lines about 10 cars deep, and everywhere you looked you saw families packing up medical equipment, suitcases, and wheelchairs into their vehicles. You would think that this sort of controlled chaos and slow-moving progress, especially when you are trying to get on the road, would have made everyone involved irritated and grumpy, but despite the mayhem everyone I saw had a smile on their face. No one was blaring their car horn because they could not get out, complaining to the parking attendants about the accommodations, or arguing with other drivers for being slow. In fact, it was quite the opposite. Everyone was smiling, patiently waiting their turn, and even helping other families pack up their belongings. This was an unexpected, but heartwarming, sight to behold, and it illustrated one of the many important things I took away from the conference.

It took me a while to fully appreciate what this scene had to teach me, but after giving it some thought, I realized the powerful lesson that was being presented to me that day in the circle drive. On any other day, at any other event, a parent holding up a whole line of traffic to take care of their disabled child, who needs you to drop everything to give them a suction, would be met with car horns, foul language, and any number of colorful hand gestures. On this day, at this event though, this same action was met with nothing but patience, smiles, and understanding. No one was upset, and the reason for this is understanding. They were not upset, because two weeks, two months, or a year ago they were in the same situation. They know the frustration and embarrassment that comes with inconveniencing a whole group of people, because this awful disease has erupted yet again to make your life difficult. They know what it is like to have to burden others close to you, or even strangers, to make sure your disabled child has the best life possible. They know the struggle that comes with having a family that is affected by SMA. They understood.

This knowing that everyone around you understands what you have to go through can be a very powerful thing. In addition to witnessing this idea outside of the hotel, I also got to feel its effects first-hand throughout the conference. It was so refreshing to be able to introduce myself to someone and not have to explain who my nurse was, why I carry around a suction machine, or anything else about my disability, because they already understood. Inside that hotel, for the first time ever in my life, I was “normal.” It is difficult to put into words, and I do not know if this will make sense, but experiencing what it feels like to be the “normal” one was an extremely refreshing and empowering thing. While I did not feel abnormal or misunderstood in general, nor did I think about how nice it would be to be “normal” very often, getting to know what it is like to just be Scott had a major impact on me. I was the exact same person at the conference that I was the weekend before, but the way I felt about who I was completely changed as a result of being in this environment of understanding. It helped me to better recognize and appreciate the fact that even though my SMA is a part of my identity, it does not define me any more than my gender, ethnicity, or religion do. It is only the way that others (as well as myself) view and understand my disability that it impacts my life. Getting to experience what “normal” feels like and gaining this insight into who I am is something that I will always remember, and I am certain that I will lead a happier life because of it.

Witnessing the controlled chaos outside the hotel and experiencing what it is like to be “normal” for a brief time illustrated the powerful effects that understanding can have on our lives. Watching an entire driveway full of vehicles patiently wait for someone to move without any signs of anger or frustration shows you how much your own understanding of what others are going through can influence your thoughts and actions. Not only that, but having a strong sense that others understand you, and the obstacles you face, can also have an enormous impact on your life. The common experience of battling a disease like SMA changed a situation that would typically be filled with misunderstanding, awkwardness, and frustration into one filled with nothing but empathy and compassion. You will be surprised at how often this phenomenon occurs throughout your life, if you really think about it. Keep this story in mind the next time you angrily flip someone “the bird” for holding up traffic or get upset when someone inconveniences you. Remember that you cannot always see or understand the struggle that others go through, and that the lens through which you view a situation makes a big impact on your feelings. Try to be more understanding of those around you, and you will eventually find that you have a better understanding of yourself as well. If we can all just be a little more understanding of one another, just imagine how much happier the world could be.

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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SMA Conference 2015

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Scott Drotar SMA Conference
Every year, “Cure SMA” holds a national conference devoted to curing and living with spinal muscular atrophy.

As you may remember, over a year ago I wrote an article that was featured in the newsletter for the organization, “Cure SMA.” This non-profit is devoted entirely to creating a world that is free of spinal muscular atrophy (SMA). They do this through funding research to find a cure for this disease, as well as by providing support and education for families that are effected by it. Every year, they hold a multi-day, national conference where individuals with SMA, their families, and researchers studying the disease can come together to discuss all of the latest medical breakthroughs, technology, and other news pertaining to the disease. In addition to getting to hear all of the latest information on SMA, this conference also provides a venue for individuals who have the disease to come together and share their stories about overcoming the obstacles that SMA presents. By providing both the latest medical breakthroughs and a platform to share ideas about living with the disease, this conference is without a doubt one of the best ways for individuals with SMA to gather information to combat the disease and live happy lives. The conference is held in a different city every year, and this year it is being held right here in Kansas City from June 18th to June 21st. This means that for the very first time, I am excited to announce that I will be in attendance. Not only will I be able to go, but I have been asked to participate as a member of a panel that will be discussing how to build and enjoy a successful, fulfilling life with SMA.

I am extremely excited to be going this year, which is a little surprising because I had not planned on attending until a few weeks ago. It was not that I did not want to go prior to that, but I just did not think that logistically it would work out. In order to attend the conference, you have to register and pay a registration fee. This fee is well worth it if you are able to make it to even 75% of the events, but with my body and life obligations, I knew that I would only be able to attend half of the conference, at most (my body could not handle four, 10-hour days in a row). I could not see paying the full registration fee to only get half of the information and enjoyment out of it. There are scholarships to help lessen the financial strain of attending the conference, but I felt guilty trying to get a scholarship that someone else (who could make it to all of the events and get a lot out of it) could use. Due to all of this, I had basically decided not to attend the conference, but after reading all of the comments on Facebook and Twitter from other people with SMA about how excited they were for the conference, I changed my mind. I decided that this was a “once in a lifetime” opportunity for me to meet hundreds of other people with SMA, hear about the latest drug trials, and learn more about my disability, so I needed to take advantage of it.

To try to register to attend so close to the date of the conference, as well as work out some of the logistical challenges discussed above, I decided to contact “Cure SMA.” After I explained my situation and discussed things with them, I was delighted to find that they were more than happy to work with me so that I could attend the portion of the conference that my body allows at a reduced rate. This was more than enough to make me happy, but I got even more exciting news from them a couple days later. I was given the honor of being invited to participate in a panel discussion the last day of the conference, which I gratefully accepted. To close out the conference on an uplifting and positive note, they are having a panel discussion called, “It’s A Wonderful Life,” as the final event. This panel will be composed of several individuals with SMA who have created successful, happy lives despite their disability, and the audience will be able to ask questions about how we achieved our goals and found success. It will be an opportunity for parents with disabled children and younger individuals with SMA to see that you can be happy and successful with this disease, as well as get answers to questions they have about living with SMA from people who have experienced the same problems first-hand. I cannot wait to participate, share my story, and here how others have built fulfilling lives with my diagnosis.

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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Metamorphosis

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Scott Drotar Hair Cut
Here is the “before” picture, before my metamorphosis.

The last month was a very difficult and trying time for me. For starters, the weather wreaked havoc on my body for a few weeks. The temperature would bounce from a low of 40° F one night to a high of 80° F the next afternoon with rain and pressure changes every couple days. Not only did this make it impossible to plan for the weather, but it also caused my chronic pain to be worse than usual most of the month. On top of that, I got a letter from the Indiana Department of Revenue stating that I was being investigated for not filing my 2012 state taxes. Even though I did not live or work in Indiana that year, received a refund for the state that I did file in (so having me refile would only cost them money anyway), and knew that it was a clerical error of some kind, any time you get a letter from the government about your taxes it puts you a little on edge. A couple days after I received that wonderful news, just to put the icing on my cake of misfortune, a prescription for one of my pain medications went missing. Due to the fact that the prescription was for a “schedule 2” controlled substance, along with the nationwide issue of people abusing prescription narcotics, getting my missing script rewritten so that I could get my medication was extremely difficult (a story that you will be hearing soon). Dealing with all of these obstacles, in addition to all of the typical stresses of daily life, made the last four weeks quite an arduous and troubling time.

As the great philosopher, Friedrich Nietzsche, wrote, “That which does not kill us makes us stronger.” I completely agree with this concept, as throughout my life I have seen countless times just how true this statement is, and I know that without having to overcome the obstacles I have faced during my life that I would not be the strong, confident person I am today. Knowing that getting through this challenging period would eventually make me a better man however, while comforting after the fact, did not make going through this troubling time any less stressful. There were definitely a couple days that I let my problems get the best of me, and all I wanted to do was find a hole to crawl into, hide until everything was taken care of, and let someone else deal with all of the problems plaguing my life. Thankfully, through the enormous amount of support from those close to me and the power of meditation, I was able to eventually find the courage and strength to fight through all of this adversity and put an end to these issues. Despite successfully resolving my troubles and becoming a stronger individual though, the anxiety and frustration I felt during this period still weighed on me even after I had gotten my life back in order. All of the emotional strain and stress that these obstacles had caused was so great that I needed a way to cleanse my mind and spirit of all of this worrying and get my mind “back to neutral.” I needed a way to close this horrible chapter of my life, turn the page, and start anew with a fresh beginning.

As you have seen in the pictures I have posted, I am blessed with amazing hair. I do not know if this was the trade off for having SMA or what, but I have a gorgeous head of hair. My lovely locks have natural wave, lots of volume, and grow in layers that many people pay money to get. Being a huge geek that was more interested in having a hairdo that was easy to maintain than being stylish, I kept my hair extremely short for the first 25 years of my life. A few years ago though, I decided to let it grow for a while. Given the fact that nearly every male in my family tree had minimal hair by 40, I figured that if I was ever going to take advantage of my magnificent mane, that I better do it soon. So I let it grow for a few months until it was about chin length, and I got so many compliments on my new “do” that vanity kicked in, and I decided that I was going to just let it keep growing. After a couple more months, as it was growing passed my shoulders, I made the decision to let it grow until it was long enough to donate to “Locks of Love.” For those that do not know, “Locks of Love” is a non-profit organization that provides wigs for children with life-threatening illnesses who are suffering from hair loss. Having grown up with a severe disability, I know how much of a difference looking “normal” and healthy can be when you are fighting an illness every day. I figured that if I could put forth no effort, and my beautiful hair could make some sick child’s life just a little bit better, that I had to do it. In order to donate your hair you have to have a braid that measures at least 10 inches, so I knew that I would have to spend another few months growing it out, but this took minimal work so I let it grow. Even though I started this endeavor purely trying to do a good deed, little did I know that pursuing this goal would end up being as big of a benefit to my life, as it was to the child that gets my hair.

As I let my hair grow for several months to reach the minimum length requirement, I ended up getting kind of attached to my marvelous mane. My long, lovely hair became a part of my identity. When people would meet me they would not immediately focus on my wheelchair, but instead they would comment on my hair. It was really nice to have people comment on something good about my appearance, and not the fact that I was disabled. I got so used to this praise that even after I had 10 inches to donate, I did not cut it. After more than 18 months of growing it out, whenever my friends or family would ask me when I was going to cut and donate my hair, I would say that “I was too busy this week,” “that I was going to make an appointment tomorrow,” or any number of other lame excuses that I could come up with to put it off longer. This procrastination probably would have gone on forever too, if not for the hellacious month that I just endured, and my need to cleanse myself of the stress and anxiety I had overcome.

Scott Drotar Locks Of Love
My donation to “Locks of Love.”

Despite the fact that I had gotten my world back in order after such a trying month, as I mentioned before, I was still suffering from some of the effects of all of the mental and emotional strain I had endured. I needed some way to rid my life of these negative emotions, and I also needed to replace them with more invigorating and refreshing feelings. I was thinking about how to best go about this one afternoon as my nurse was going through the arduous task of washing my now 20 inches of hair, when it came to me like a flash of lightning. It was time to cut it. Getting rid of my precious, flowing locks was the perfect way for me to cleanse my mind, refill my spirit, and symbolically turn the page on this chapter of my life, which would give me the opportunity to start again, fresh and rejuvenated. This act would do something good for someone else by giving them my hair, which would fill my heart and spirit with positive energy. Just as importantly though, it would also be a representation of how I am putting an end to this difficult period, separating myself from all of the struggle and anxiety I was feeling, and moving forward with a clean slate and full heart. It would be a metamorphosis on multiple levels, and it would give me everything that I needed to move on with my happy, fulfilling life.

Going through this major makeover in my appearance was the catalyst I needed to move beyond the difficult month I had and start anew. It changed me in multiple ways, and the combined effects gave me everything that I needed to move forward successfully. First, the warm, fuzzy feelings I felt from doing this good deed and donating my hair washed away the stress and anxiety I was still suffering as result of my horrible month of obstacles. Second, these good emotions filled me with a positive energy that will fuel me as I start fresh. Lastly, the change in my appearance will act as a reminder of everything I was able to overcome, and how I was able to turn the negative effects lingering in my mind into something beautiful (plus, I think I look damn good this way). With my rejuvenated mind, full heart, and new look, I have everything I need to kick off a new chapter in my life filled with happiness and success.

Scott Drotar Metamorphosis
My “after” picture with my new look after my metamorphosis.

No matter who you are or how great your life is, you are going to go through periods of time when your problems will get the best of you. When you feel like you cannot escape the negative feelings that are plaguing you, sometimes it is necessary to shake things up. Whether it is a change in your appearance, your career, or your social circle, making a major change in one area of your life can act as a catalyst for change in other areas. By undergoing this type of metamorphosis, you can create a domino effect of positive change that can greatly improve your life. If you are lucky, as I was, in doing this you may even be able to make a major impact on someone else’s life as well. Think about your world and your happiness and take the time to look at any negative feelings you may have. Ask yourself if there is some way for you to shake things up and rid yourself of these emotions. Change may be hard, but if you go through this metamorphosis correctly, with a little luck you can grow from a lowly caterpillar into a beautiful butterfly.

If you are ever in the mood to make a change in your “do” and hack off a large amount of hair, be sure to check out “Locks of Love.” This really is a great organization that brings a lot of happiness to sick kids who really need it, and it requires next to no effort to donate. If you are going to cut your hair anyway, why would not you take the opportunity to change someone’s life. All you have to do is put your braided donation in a Ziploc bag, print and fill out a very brief form available on their website, and stick it all in an envelope with a few stamps. It literally takes about five minutes of your time and less than $2.50 in postage, and you can give something to a child that they will cherish forever. Even if going through the process of mailing it is too much work for you, many salons will donate it for you if you ask, which even gets rid of this minimal amount of effort. By donating, when you get your stylish, new hair you will feel as good on the inside as you look on the outside.

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 Positive Force

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Scott Drotar David Letterman
David Letterman hosted his final episode of “The Late Show” last month.

As you are probably aware already, last month after more than 6,000 airings David Letterman hosted his final episode of “The Late Show with David Letterman.” No matter where you stand on the Letterman-Leno continuum, you cannot deny the fact that Letterman had an incredible career and made an enormous impact on the lives of millions. Even though at first glance you may not think of this goofy, self-deprecating comedian as someone who influenced several generations of Americans, when you really think about it, you realize that this amazing entertainer spent 22 years trying to bring happiness to others. Whether he was feuding with Oprah, running through the nightly “Late Show Top Ten List,” or throwing things off of the roof of the Ed Sullivan Theater, he was always doing his best to make us smile. Every night we could turn on CBS, take a 60 minute break from our lives and problems, and just sit back and enjoy whatever hijinks Dave was up to. While he may have touched the lives of countless people throughout his career, the impact he had on my life in particular runs deeper than laughing mindlessly watching “Stupid Human Tricks.” For me, Letterman was much more than a brief escape from reality. He was a nightly reminder of the happy, fulfilling life I wanted to achieve, during a time when I felt that I had very little to fight for.

Right after I survived my brush with death and got my trache when I was 15 years old, I entered a very dark period in my life. I was never “officially” diagnosed with depression, but anyone who knew me during this time would certainly tell you that I was not the optimistic, positive thinking person you know and love. You would think that the mere fact that I was alive, home, and well would have been enough to put me in a permanent state of bliss after nearly losing my life to pneumonia, but this was not the case. For about six months or so after being discharged from the hospital, I had a really hard time finding reasons to be happy and keep fighting to create a fulfilling life for myself. Looking back, it makes perfect sense that I had such a difficult time, since my whole world was changing, and I definitely had a lot to get used to. Physically, I was trying to recover from pneumonia, getting used to having a trache, and learning to live with a whole new level of chronic pain. At the same time, I was mentally coping with my near death experience, working through the reality that I would never get my old life back (the life I had pre-trache), and trying to put together a new life that would make me happy. And on top of all of that, I was also your typical, hormone-filled teenager, who are borderline depressed to begin with, so it is no great surprise that I felt so down.

Scott Drotar Going Through The Motions
While I went through the difficult process of getting used to life with a trache, I was really just “going through the motions” of living my life.

Justified or not, this was an extremely difficult period for me. I rarely smiled, and I had a hard time finding any reasons to be happy. I felt like every part of life that I enjoyed had been taken away from me. My body hurt more and was weaker than before, which meant I could no longer do many things like I used to, if I could still do them at all. My freedom and independence were greatly reduced, since I now needed either a nurse or parent constantly by my side in case I needed to be suctioned (and what teenager wants to have adults hovering all the time). Even eating, one of the most basic parts of life (and one that I have always thoroughly enjoyed), was unpleasant at this time, because my throat was sore from my trache surgery, which made swallowing painful. I felt like I had beaten death just so I could experience a life filled with pain and suffering instead. Even though I still got out of bed every day, went to school, and did the things I needed to do, I was mostly just “going through the motions” so that my parents would not worry. Inside I was a broken man, and I really did not see a reason to keep fighting so hard to try to create a great life for myself, because in the end my failing body was going to take it from me anyway.

Despite my complete apathy towards life during this difficult time, there was still one thing every day that I looked forward to. Every night, while my nurse and I went through my nightly care, we would turn on the television and watch “The Late Show.” My nurse and I would flip on the little 12-inch television in my room and laugh at Rupert Jee, discuss the current events that came up, and watch Dave bumble through his interview questions, as I got ready for bed. I do not know if it is the fact that both David and I are Indiana boys, our similar-style of self-deprecating humor (except he is funny), or just random happenstance, but for whatever reason watching Letterman was the one thing that could still make me smile. This was the one part of my day that always made me happy, which is something I desperately needed at this point. By having things like “The Late Show” to keep me smiling and giving me a reason to keep fighting, I was eventually able to work through my issues and adjust to my new world and limitations. As strange as it may be, it was the goofy antics of a weatherman turned talk show host that helped me to get through this troubling time, and move on to create a happy, fulfilling life for myself.

Of course, at the time I did not see how influential watching “The Late Show” was on my life. Even years after I had gotten through this difficult period, as I looked back and reflected upon how I was able to work through my depression and adjust to my new life, I still failed to see just how important Letterman had been to my personal growth. It was not until just recently, after receiving a text from my sister about his final episode (she knows I am a Letterman fan), that I was able to recognize how influential he had been. As I thought about the thousands of hours I had spent laughing at Dave, and the fact that I would no longer be able to turn on my television late at night and see him, I finally realized how much watching Letterman had meant to me. His late night shenanigans had been a beacon of light at a very dark time in my life. It gave me a reason to smile and be happy during a period when few things could. Even more than bringing some joy into my life though, watching that hour of mindless humor every night was a constant in my life. At a time when everything in my world was changing, and I felt like I had no control over anything, Letterman was always there. I knew that each night, I could escape from my troubles, watch his show, and relax. It was something I could count on, something I could control. For those 60 minutes every weeknight I knew what I would be doing. Having this hour every day to get away from everything I was going through is what gave me the mental space to eventually work through my feelings and get on with my life.

Scott Drotar The Late Show
Watching “The Late Show with David Letterman” was one of the few things that could make me smile after I got my trache.

David Letterman will always be remembered, along with Johnny Carson and Jay Leno, as one of the “Kings of Late Night.” He will be remembered as a great entertainer and comedian, who gave millions of viewers an hour of humor every night for over two decades. You will remember his “Top Ten Lists,” his banter with Paul Shaffer, and the time he put up a billboard on the New York-New Jersey border that said, “Attention Motorists: Jersey Is Closed.” To me however, Letterman’s time hosting “The Late Show” will always mean something more. I will remember him as another small town, Hoosier boy that was not afraid to dream big. I will remember the way he used his gift of being able to make people laugh to bring happiness to others. Most importantly though, I will remember him as an unwavering, positive force in my life at a time when I truly needed something to grasp on to. I will be forever grateful for how he impacted my life, and I will miss having him there every night to make me smile, but I hope that he enjoys his retirement. Perhaps now that he has called it quits and I have told my story, he will finally be recognized for everything he has accomplished and achieve his lifelong dream of having I-465 named “David Letterman Expressway” (I can dream right?).

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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Mother’s Day 2015

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Scott Drotar Mother's Day 2015
My mom has always been my biggest supporter and advocate, and she gave me the skills to live with my disability.

Over the weekend we celebrated one of the most under appreciated holidays of the year, Mother’s Day. Like most people, I went out of my way yesterday to make sure that I told my mom how much I love her and that I appreciate everything she has done for me. As a proud “momma’s boy,” I think it is great that all of the hardworking mothers out there get recognized for all of the things they do for their children, and I always try to do my best to make my mom’s day extra special. This is the woman who has sacrificed so much to give me the best opportunity to create and enjoy an independent, fulfilling life, and I could never repay everything she has done for me. She took care of me, taught me how to live a happy life in spite of my disability, and is still the person I want nearby when I am sick, injured, or scared. She has done so much for me and my siblings, and like all good mothers, she did this without expecting anything in return besides our happiness. It was in thinking about all of this and preparing for this year’s Mother’s Day that I realized something fairly unsettling about how we view the moms in our lives and decided that I was going to do something to change it.

As I was thinking about what to do for my mom this year to show her how much she means to me, I had a small, and slightly upsetting, revelation. I was online looking at various options for flowers, fruit baskets, and other typical Mother’s Day gifts, when I realized that in celebrating this holiday, and picking this one day as the day to recognize the most important women in our lives, we are doing exactly the opposite of what we should be doing. These ladies give up their lives and sacrifice everything and anything they can to make their children’s lives better, and we say “thank you” by sending them some flowers the second Sunday in May, and then go back about our lives. Should not the women that are responsible for turning us into the happy, successful sons and daughters that we are get at least a long weekend (if not the whole year)? In thinking about this travesty we are committing against these wonderful women, I decided that, while I was still going to call my mother and wish her a happy Mother’s Day, I was not going to send my mom any flowers or other festive gifts this year. Instead of choosing an arbitrary day to give her some commercialized token of gratitude that will end up thrown away or collecting dust in a few weeks, I was going to do something a little different and much more meaningful.

Scott Drotar Motherly Love
I am going to do my absolute best to make sure that my mom knows how much she means to me the whole year, not just the second Sunday in May.

This year, and for every year in the foreseeable future, I am going to try to make sure my mom knows how much she means to me more than just once a year. I am not going to pick an arbitrary day in May that amounts to less than 0.3% of the year to honor the woman that is the most responsible for turning me into the man I have become. I am going to make it a point to at least once a week do something to show my mom that I love her and appreciate everything she does for me (I have even put a weekly reminder on my calendar). This showing of my gratitude does not have to be anything big or extravagant or even tangible. All it has to be is a little way of letting the most important woman in my world know that all of her hard work and sacrifices over the years have not gone unnoticed. A short email saying “thank you” for something she always does without me even asking, calling her to ask about her day, or a quick text telling her that I cooked something that she always made for me because I was missing home, all will mean far more to her over the long run than any cleverly designed fruit bouquet ever could. By taking the time to stop and devote a few minutes to my magnificent mom, not only will she better understand how incredibly important she is to me, but I will better understand it too. In a day and society where so many of the important people in our lives get overlooked all too often, having this constant reminder will ensure that I never forget the most influential woman in my world, and how amazing my mother really is.

To kick off this new campaign of gratitude and appreciation, I would like to end this post with a little note to my mom. And even though Mother’s Day is officially over, I would like to thank all mothers out there for everything they do, and I hope that they realize how much their acts of love and devotion to their children really are.

“Mom,

I hope you had a great weekend and enjoyed your special day. Even though I was unable to be with you in person, I assure you that I was with you in spirit and thought of you often. I know how lucky I am to have such a selfless, strong, and caring woman in my life, and without your help and guidance there is no way that I would be where I am today. You gave me the tools to lead a happy, successful life on my own, and even though it scared you to death, you had the courage to let me leave the nest and chase my dream of living independently. I work hard every day hoping that I can make you proud to call me your son, because I am definitely proud to have you as my mom. You gave me all of the best parts of yourself and so much more, and you will always be the most important woman in my life. I love you.”

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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“Beyond Bedside Manner” Talk For Symposium

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Several weeks ago, I was contacted by the National Parkinson Foundation (NPF) and asked to speak at their “Caring for the Long-term Caregiver Symposium.” This all-day event was sponsored by the NPF, St. Luke’s Hospital, and Johnson County Community College, and it was designed to address and discuss the difficulties and obstacles presented by long-term disabilities, not only for the patient, but for their caregivers as well. This is a topic that I have a bit of experience with and is near and dear to my heart, so I was honored and excited that they wanted me to speak for their audience. And not only did they want me to speak, but they wanted me to close the event as their final speaker of the day. Other than the keynote speaker, the final speaker is the most important part of any event, since it is what the audience will have fresh in their minds as they are leaving and is what they will remember most vividly afterwards. After speaking with the event coordinator and getting a good idea of what they were looking for, I was extremely excited to prepare a new Roll Models talk to close their symposium. After a few weeks of careful brainstorming, writing, and revising of my material, I eventually put together a brand new Roll Models talk called, “Beyond Bedside Manner: The Complex Relationships of Long-Term Care.”

Scott Drotar Beyond Bedside Manner
Last weekend I delivered my newest Roll Models talk, “Beyond Bedside Manner,” at the “Caring For The Long-Term Caregiver” symposium.

“Beyond Bedside Manner” is my newest Roll Models talk, and it is probably my most well-written piece to date. The main message that I am trying to get across to my audience in this talk is that physical disabilities impact more people than just the person being diagnosed with the disease. While the patient definitely has their life effected in nearly every way imaginable, and I do not want to at all minimize that fact, the loved ones who serve as the primary caregivers for the patient have their lives forever changed as well. As the patient is trying to learn to live with a physical disability and having every aspect of their life altered by the disease, their caregivers/family members are going through their own process of having their lives changed too. With building healthy relationships between family members being extremely complicated to begin with, you can imagine how throwing everyone’s life into a state of flux, like what happens after being diagnosed with a severe disability, could make maintaining strong family relationships quite difficult. Throughout “Beyond Bedside Manner,” I discuss how this happens using some examples from my own life, and I also try to give some tools for getting over these obstacles and forging even stronger familial bonds. I believe that this is an often overlooked aspect of living with a long-term disability, and I hope that this talk can do some good and bring this important issue more into view.

The talk itself went extremely well, and the symposium was without a doubt one of the best run and most well organized events that I have ever been a part of. The event coordinator was really on top of things, all of the event staff were happy and helpful, and everyone in the audience was kind and gracious. They even managed to stay on schedule the entire day while running presentations back-to-back without any dead time, and if you have ever worked at any type of event with this many people, you know that that is nearly impossible. I felt like it took me a few minutes to get into rhythm with my talk, but once I found my groove my delivery felt very natural and smooth. They were a great audience too. They actively listened and gave me some silent feedback as we went, which means that we truly connected and makes my job so much easier. I even got to meet a few members of my audience afterwards, and the individuals I spoke with were all caring and interesting people. To sum things up, this was a great event to be a part of, and I only hope that my audience enjoyed themselves and got as much out of it as I did.

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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