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.”
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.
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.
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.
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.
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.
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.
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.
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.
This Summer my grandfather celebrated his 90th birthday. Not only has he lived more than nine decades, something that we all hope we can do, but he has accomplished this feat in incredible fashion. While he does reside in a nursing home now, he still walks unassisted, gets himself together in the morning, and takes care of himself for the most part. In fact, other than the Alzheimer’s disease that is slowly ravaging his memory, my grandpa is in better shape at 90 years old than most people are in their 70s. I am a firm believer that one of the best ways to better yourself is to find someone with positive qualities that you want to develop, and then try to model some of your own behaviors and habits after this person. Since living a long, full, healthy life is something that we all want, I have been thinking a lot about my grandfather’s life and trying to figure out how he has achieved such a long, fulfilling existence.
On paper, my grandfather’s life probably would not jump out and impress the casual observer. Anyone who knows him though, would tell you that he has experienced and achieved more in his lifetime than most men could in five (not that I am a biased grandson or anything). He did not graduate from high school, because he enlisted in the Navy to serve his country before finishing, yet he is an extremely intelligent man. While he could not tell you much about trigonometry or calculus, he could still do all of the necessary calculations to design and build a safe, solid, wheelchair accessible deck on my parent’s home (a structure that still stands to this day). He was married to my grandmother for more than half a century, and they loved each other just as much after 50 years of marriage as they did the day they said “I do.” He has fathered three children that all graduated from college and grew into successful, happy adults. My grandpa has never smoked, chewed tobacco, or used any drugs a day in his life, and even though he does like his beer (who doesn’t?), I have only seen him intoxicated at most a dozen times in my entire life. He has always taken care of his body and been in great shape physically, but he has never set foot in a gym. His workout regimen has always been a good, full, honest day’s work using the body that god gave him. Even though he has been “retired” for my whole life, until he reached his mid-70s I cannot think of a day that my grandfather was not out in his rusty, blue truck driving around town doing odd jobs for anyone who needed him.
After reading about just the handful of achievements that I have discussed here, most anyone would agree that my grandfather’s life has been a huge success. I agree that he has lived an amazing life, and done so in the “right” way, but in thinking about all of these things I realized something. As impressive as his lifetime of accomplishments are, these feats are not what has allowed my grandpa to lead such a long, full life. These achievements are not the cause of his ability to defy “Father Time,” but yet more effects of whatever quality has made his life so great and allowed him to live the way he has for so long. The secret to his lifetime of success is something much more abstract and ingrained deep within him. It is something much bigger than education or exercise, and it is something so integrated into who my grandfather is, that it is difficult to separate it from all of his other wonderful qualities. Being the curious grandson that I am though, I was determined to figure out his secret to seemingly eternal youth.
Since I had realized that my grandfather’s secret to a living a long, fulfilling life was going to be something deep within his heart and soul, I started thinking about what quality best describes him. It did not take me long to zero in on one particular personality trait, because it so nicely defines who he is. My grandpa is one of the happiest, warm, positive people you will ever meet. Whether he is meeting you for the first time or has known you for 50 years, he is going to greet you with a big smile, a lively handshake, and a sincere “How’s life?” He is always the first person to offer help to anyone, whether that be some kindness and a few laughs over a beer or 12 hours of labor fixing your heater in the dead of winter. No matter what you need, my grandpa is going to be first in line to offer a helping hand (or a cold beer…or two). After really thinking about this integral part of who my grandfather is, what I discovered is that this kind, selfless nature that defines who he is almost perfectly is his secret to eternal youth. His endless supply of smiles, never-ending positivity, and kind, generous heart are the things that have kept him young beyond his years and filled his long, awesome existence with so many amazing experiences.
This may not seem like a great revelation, as we all have heard countless times about how more positive and more giving people tend to live longer, but there is more to this discovery than that. It is not your actions that make the difference, but your state of mind. Even more than that, it is something that you have to fully accept and invest yourself in if you want to experience its full effects. You can volunteer every weekend, donate millions of dollars to charities, and smile at everyone you meet, but if you do not completely believe in what you are doing, you will never enjoy the same age-defying effects as my grandfather. You have to do these selfless, charitable acts, because you truly want to make others’ lives better, not because you feel you have to or “should.” You have to believe in this type of living with your whole being and let it become a part of your very core, in order to experience its life-improving gifts. It is only when you learn to live this way without even thinking because it is who you are, like my grandfather has, that you can tap into this “Fountain of Youth.”
Of the numerous lessons that my grandfather has taught me, this is definitely one of the most important. By modeling this incredible quality his entire life, he has taught me how to be a “good man” and live a full, happy, lengthy life. Without even trying, he has not only bettered the lives of all who know him, but he has also shown the rest of us how to experience the same wonderful life that he has. While I have not yet mastered this quality, I am definitely working on it, and I hope that you will too. Just imagine how great the world would be if we all lived the way my grandfather has. Plus, I want you to be around to read my Roll Models posts in the year 2076, when I am still blogging away at 90 years old.
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.
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.
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.
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.
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.
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).
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.
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
“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.
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.
The Fourth of July is a pretty big deal across the rural Midwest. While I know that places, like New York City, Boston, and Washington D.C., may put on some impressive shows and get all of the press, but if you really want to celebrate the Fourth, you need to come to the Midwest. The Fourth of July is sort of a perfect storm of holiday festivities in this area. You get to have a cookout during the day, relax with family all evening (typically over several adult beverages), and then watch fireworks in your backyard that night. While these are activities that most everyone likes no matter where they live, in small towns across the Midwest it is on another level. This immense enjoyment stems from the fact that this holiday is right in our regional wheelhouse. Because if there are three things we do well in “Small Town, USA,” they are backyard barbecues, family gatherings, and blowing stuff up. Combining these three components into one holiday, and then adding in the fervor and zeal that comes with celebrating your patriotism, creates a trident of unstoppable holiday spirit that develops into an insanely good time. As you can imagine, many of my favorite Summertime memories occurred during these epic celebrations of American spirit, especially the years when my parents would host a Fourth get together. One of these patriotic parties in particular holds a special place in my heart, not only because of the fun and fireworks and such, but also because of an important lesson that it taught me.
When I was growing up, almost every year my family would host a Fourth of July get together at our home. Other than the fact that the Drotars know how to party, my family would host the gathering because our backyard had a perfect view of the town fireworks display. This was critical for a great Fourth barbecue, as it meant that you could continue to enjoy your adult beverage (the fireworks area is alcohol free) and the explosive show without battling through a crowd of people searching for the “perfect seat.” I do not remember exactly what year it was, but when I was around 10 or 11 years old my folks hosted one of these Fourth of July barbecues. Relatives, family friends, and neighbors came over (comfy, lawn chair in hand), and we ate burgers, played horseshoes, and lit fireworks all day. When it finally got dark enough that night, everyone picked out a spot in the yard, leaned back, and watched the colorful explosions lighting up the sky. I spent the day enjoying the festivities with my childhood best friend (his whole family was there), downing Mountain Dew, lighting firecrackers, and having a great time. As he and I were taking in the fireworks that night, and being every bit the tenacious, pre-adolescent boys that we were, I experienced a fairly trivial event that, has not only stuck with me my entire life, but has ended up having a huge impact on me.
As the town’s fireworks display was about to get going that night, my friend and I picked out a great spot in my yard to watch the show. My younger brother and one of his friends had set up a few feet away from us to get a good view of the colorful combustions to come, and a few adults were nearby too. As the light show in the sky started, my cohort in crime and I overheard my brother and his friend talking about each round of blasts and rating each one on a 10-point scale (1 being a lame, kiddo sparkler and a 10 being air raids over Baghdad explosive power). Being the jerky, adolescents we were, my friend and I decided to poke fun at my younger sibling for getting so much enjoyment out of some town fireworks (because obviously we were way too cool and grown up to like something like that at all of 11 years old). After a few minutes of doing our best to humiliate my little brother, one of the nearby adults stepped in and told us crossly to “leave him alone.” Not being one who misbehaved often (or at least I did not get caught often), getting this gentle scolding made quite the impression on me. In addition to making me straighten up and stop my juvenile behavior, it also impacted me in a much more profound way.
This moment has stuck with me for years. For me, it is one of those memories that you remember in vivid detail, no matter how much time goes by. I think the reason that this fairly uneventful moment from my life has remained such a clear memory is that it reminds me of an important lesson. That night, my friend and I wanted to assert our status as “big, bad teenagers” by making fun of my younger brother for getting so engaged and having so much “childish fun” watching the fireworks display. We wanted so badly to be grown up and treated like adults, that we were not only trying to act like we were not excited about the explosive show in the sky (which we both knew was a lie), but we were also teasing others for enjoying it. As I have thought about this night over the years, I have realized how truly backwards my thinking was at that age. I should not have been trying to solidify myself as an adult, but instead doing everything I could to remain a child for as long as possible. Because while we all have to grow up in terms of our lives and place in society, we do not have to completely let go of the childlike wonder and exuberance that we have when we are young. This moment always helps me remember how important it is to “be a kid” sometimes.
When you are young, you have the ability to get enjoyment out of almost anything. Give a kid a pile of fallen leaves, a big, cardboard box, or even just a pit filled with sand, and they will be entertained for hours in complete bliss. As you grow up though, and this is happening sooner and sooner in our society it seems, you start to lose this youthful creativity and happiness. As we mature, and become jaded by life’s obstacles and burdened with the responsibilities of being a grown up, our capacity to enjoy the simplest parts of life slowly slips away. This would not be so bad, but unfortunately once you lose this childhood gift, it is very difficult to get it back. In most cases, by the time you realize how precious this ability is, it is gone forever. That is why it is so important to recognize how priceless these feelings are, cling to them as much as you can, and appreciate their impact on your life, as you carry them with you into adulthood. I am so thankful that I had this moment to show me the importance of “being a kid,” as well as the maturity to recognize its value at a young age. This has allowed me to maintain some of my youthful exuberance, even though I have had to grow up faster than most, and I am certain that this has made an enormous impact on my overall happiness as an adult.
While I needed a specific moment from my life show me the importance of maintaining some of your childhood innocence and excitement, you can see the powerful effects of these emotions all around you. Think about the happiest people you know, or better yet the people who make you the happiest when you are with them, and then try to describe their personality. More often than not, the happiest people in your life are the ones who exhibit the most childlike wonder and fun. This does not mean that they are any less mature or successful as adults, but more so that they had the vision and mental perspective to recognize the importance of these feelings and maintain them into adulthood. No matter how busy your life is or how much stress and anxiety you have as a grown up, you have to remember that it is ok to “be a kid” sometimes. In fact, it is not only alright, it is recommended. Take the time, at least every few days, to let yourself enjoy the simplest things that make you happy, the way you did as a child. Splash in a mud puddle, go play with puppies at a pet store, or go to the park and sit on a swing. You will be amazed at how great this will make you feel, and if you let your “inner child” out to play often enough, you will find that your adult world is a much happier place.
Recently, 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 second of these posts (here is the first), which focuses on a very important life lesson that was brought to my attention after the conference, as I was looking back at the amazing experience I had.
As I mentioned above, on the final day of the conference I was given the honor of participating as a member of a panel discussion. The panel consisted of about a dozen adults with SMA, all of whom had managed to overcome their physical limitations to lead successful lives. During the session, which was entitled “It’s A Wonderful Life,” the audience was given the opportunity to ask anything they liked about how we were able to rise above the obstacles presented by our disability. They could inquire about anything from moving away from home, to how to arrange around the clock home nursing care, to how to travel internationally with a power wheelchair (yes, there are individuals much braver than me who do this). Not only could the audience ask anything they wanted, but they could receive honest answers straight from people who have actually experienced these parts of life with SMA. In addition to being a way to pass on some of the experiences we have had and the things we have learned to the next generation of individuals with SMA, this question and answer session was also designed to show the parents of young, disabled children that you can still lead a happy, successful, fulfilling life despite the obstacles presented by this disease. This was the first year that they had concluded the conference this way, and not only was it a huge success, but it was also the most attended session of the entire weekend. It was a great source of valuable information for others facing this disease, and by sharing all of our success stories and giving young families effected by SMA some hope for the future, this panel discussion ended the conference on an uplifting, positive note.
Participating in this panel made me really reflect upon my life. Listening to others with SMA tell their success stories, as well as sharing a few of my own adventures with overcoming this disease, caused me to look back over the last 28 years and think about everything I have experienced. More importantly though, it helped me remember some of the most influential people in my life, who helped me create this wonderful life I lead. As I thought about all of the young parents in the audience that were doing everything they could to help give their disabled child a full, happy life, I was reminded of my own mom and dad. I realized how fortunate I am to have two amazing parents, who have worked so hard and sacrificed so much to give me every opportunity at a “normal” life, the life I have always dreamed of having. As I watched all of the able-bodied siblings of people with SMA work as volunteers throughout the conference, I was reminded of my brother and sister. Despite the fact that they missed out on certain activities growing up due to my physical limitations and had to mature at a young age to help take care of me, they never made me feel “different,” and I know that they would give anything for me to be healthy. As I saw all of the relatives, friends, and caregivers, who gave up almost a week to allow their disabled loved ones to attend the conference, I was reminded of all of the people close to me that have shaped my life. These incredible individuals have willingly and openly given their time, their energy, and their love, just so that I can chase my dreams and be happy. Each and every one of these people, my parents, siblings, friends, played a major role in my life, and their selfless, generous acts of kindness have allowed me to be as successful as I am.
In thinking about all of the influential individuals who have given me the ability to achieve so many of my goals, I gained a new perspective on some things. Seeing all of the other families at the conference and thinking about how my family was in that exact same situation 25 years ago helped me to see my life in a different way. It helped me to realize just how lucky I am. My parents were told that I would not make it to my third birthday, and for many of the young families at the conference, this is the unfortunate reality that they will face. For whatever reason though, I have beaten the odds and overcome my physical limitations to lead a long, fulfilling life (as did everyone else on the panel). I am almost 29 years old, living on my own, paying my own bills, and enjoying a successful, happy life. And while I certainly worked hard to get where I am, and I also know that there was some luck involved, the most important factor in my success was the people around me. My phenomenal family, my amazing friends, and everyone else who has touched my life over the years are the ones who deserve credit for my success. Without these incredible individuals and everything they did for me, I would not have been on that stage the last day of the conference, and in all likelihood I would not be around at all. These are the people who should be looked up to and applauded for their achievements, as they are the real inspiration.
The title of the panel discussion, “It’s A Wonderful Life,” was chosen to illustrate how you can still lead a happy life with SMA, and every member of the panel definitely embodied that in numerous ways, but it goes even deeper than that. Even for those of us that have managed to beat this disease and be successful, it is important to remember how “wonderful” life is and just how fortunate you are. While we may be disabled and have to deal with more than most, when you consider the fact that most of the children born with SMA never make it to adulthood, let alone lead independent, fulfilling lives, you see how lucky you have been. Gaining this perspective makes you truly appreciate your life, and it makes you think about all of the people who gave you the ability to beat this horrible disease, because without even one of these individuals, you may not have accomplished everything you have. In some cases, you may not have made it at all. It is so crucial to keep this idea in focus and appreciate the influential people in your life, not only because they are the ones who paved the way for your success, but also because they are the people who can show you how to live the “right” way and make the world a better place. These are the people who know how to make life “wonderful.”
While the real goal of the “It’s A Wonderful Life” panel discussion was to inspire young families with SMA and pass on real-world experiences of what life is like with this disease, it accomplished so much more than that. It helped me (and I am guessing everyone on that panel) to realize how fortunate we are, and how fortunate we have been to have so many awesome individuals in our lives. This is something that we all need to reflect upon, because we all have had people touch our lives in incredible ways. These amazing people are the ones who gave you the ability to find success and happiness, and while they may not have wings or a halo (just like Clarence when he helped George Bailey in the movie), that does not make them any less miraculous. Be sure to remember the “angels” in your life and take the time to really appreciate the incredible impact that they have had on you. Keep in mind that while you are the one who built your life and achieved your goals, these are the people that gave you the tools and skills to do so. And most of all, if you want to be happy never forget that even when you are down on your luck and everything seems to be going wrong, that “It’s A Wonderful Life.”