Category Archives: Announcements

Famous….Almost

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Scott Drotar MDA
MDA’s quarterly publication, “Quest,” is a great source of information and support for families living with neuromuscular diseases.

A couple of months ago I was contacted by the Muscular Dystrophy Association (MDA) to do an interview for their quarterly magazine, “Quest.” I was happy to answer a few questions and share my story with them, as that is what I do through “Roll Models” anyway. It was a fairly short interview over the phone, and once it was done I pretty much forgot all about it. I figured at most they would mention me in some minor capacity within one of their articles, but when I looked at the most recent “Quest” publication, I was pleasantly surprised that this was not the case. They had used the information that they had gathered from my interview (as well as interviews of several other physically disabled, successful adults) in a fairly lengthy piece on building a career with a disability. I was even quoted a few times. I thought you might enjoy seeing what someone else has to say about me for a change, and it is a well-written, informative read, so I thought that today’s post will come courtesy of “Quest.”

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A Special Delivery

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Scott Drotar New Wheelchair
It may not look like much quite yet, but this chair is amazing. I am excited to have the “Rolls-Royce” of power wheelchairs.

It is here! As I have mentioned in previous posts, for the last six months I have been working on getting a new, power wheelchair. Since I ordered all of the parts and submitted bills to insurance in early October, and having gone through this process several times during my life, I figured it would be at least Thanksgiving before I would see my new ride (if insurance denied certain parts even longer). Much to my surprise though, not only did my insurance approve everything I asked for, but all of the parts have already been delivered to my home. Now, I still have to program the electronics and get the seating set up and such, but it is here. It is pretty exciting to know that within a couple of weeks that I will be in a brand new wheelchair that I can drive on my own. I cannot wait to get my freedom back. I will be sure to keep you posted as I get it up and running over the next few weeks.

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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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“Waterscapes” Announcement

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Scott Drotar Waterscapes
Joan taught me to paint, plus so much more, during our time together.

Today I have an exciting announcement. Many years ago when I was a teenager, thanks to a local newspaper article about my experiences as a disabled person, I got the incredible privilege of having an amazing individual enter my life. This generous, patient, and extremely talented woman, Joan Darflinger, after reading about me in the paper, got in touch with me and offered to give me private, art lessons in my home for free. While I did not at all consider myself “artistic” at that point in my life and was not sure I would enjoy painting, I decided that it could not hurt to give it a try, so I accepted her offer. Over the next year or so, not only did Joan teach me to paint and discover my creative potential, but she also showed me a lot about how to live life the “right” way too. I will always be grateful for the kindness she showed (a complete stranger) and the lessons she taught me, and I am so happy now to be able to return some of her goodwill through Roll Models.

Scott Drotar Joan's Blog
I have been given the honor of contributing to Joan’s blog.

Joan has been asked to write a Walter Foster art book, which is a really big deal for those of you unfamiliar with the “art world.” The book is going to be called “Waterscapes,” and it will be by Joan Darflinger. It is going to be released this Fall, so be sure to be on the lookout for it, as you will be amazed at Joan’s talent. To help build up anticipation for the release of “Waterscapes,” the publisher of the book has asked that Joan start a blog. In order to get her blog going, she gave me the honor of contributing a Roll Models article that I had written about our time together to her website. I am extremely flattered that she would want my words on her blog, where all of her fans will see. Please take the time to visit her site, and perhaps order her book, so that I can begin to repay some of the kindness she showed me.

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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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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Honorary Roll Model Danielle Sheypuk’s TEDx talk: “Every Body: Glamour, Dateability, Sexuality & Disability”

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A Wheelchair Breakthrough!

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Yesterday I had another meeting with the wheelchair technician building my new chair, as well as a representative from a wheelchair vendor, to try out another possible hand control for my new power wheelchair. This control is made by Permobil, and it is called the VIC proportional finger drive control. It uses infrared technology to track finger movements, which allows individuals with minimal muscle tone, like me, to operate their wheelchair without applying any amount of pressure. After getting to try it out this afternoon, I am happy to report that it was a perfect fit for my needs. I could easily manipulate my finger in the device, and I had no problems using the various functions it comes with. It will be a great fit for me, and I am so excited to have finally found a hand control that I can use completely on my own. While it will still be a few months before I even get a glimpse of my new wheelchair, it feels really good to have solved this part of the puzzle, as now we can start submitting paperwork to insurance and ordering parts. This was a huge step forward in this process, and it feels nice to make some major progress. To share this exciting experience with you, I even have a short video that the wheelchair representative took of me using the VIC control. I know that the quality is not great, but you can still see me operating the wheelchair with no effort at all.

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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