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.”
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.
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.
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Over the weekend, I got to attend the annual Spinal Muscular Atrophy (SMA) Conference. This was my first time being able to go (because it was held at the Westin Hotel in Kansas City about 20 minutes from my apartment), and while I feared that I was overly excited and had created far too lofty expectations, it turns out that I had no reason to worry. The conference, which was the second most attended conference ever for “Cure SMA,” not only met my high expectations, but surpassed them in every way. I had a phenomenal time, met some amazing people, and learned a lot about how to live with this horrible disease. In addition, I got the opportunity to share some of my own experiences about creating a successful life with SMA, as a member of a panel discussion that was held on the final day of the conference. After spending the first few days of the conference getting to meet and talk with some of the inspiring individuals trying to figure out how to give their disabled children and families a fulfilling life (much like my parents did many years ago), I felt extremely honored to get to pass on what I have learned from battling this disease for almost 30 years. This event touched me and impacted my life in so many ways that there is no way that I could fit everything I want to share with you in one post. So, in order to make sure that I adequately discuss all of the important things I learned, I will be writing several articles about the conference over the next week or two. Today you get the first of these posts, which discusses the first lesson that was passed on to me, and it was given to me before I had even made it into the hotel.
Before I get into the first part of my experience at the conference and the lessons I learned, I have to first tell you a bit about how well-run and efficient this event was. I cannot say enough about how great of a job “Cure SMA” did in making this weekend a success. If you have ever organized, worked at, or even just attended a large, multi-day conference, you know that events like this are incredibly difficult to run and often seem a little chaotic. There are just a lot of moving parts to keep track of both before and during an event of this magnitude, and no matter how much you plan and prepare for potential obstacles, there are always going to be unexpected issues that come up along the way. While I am sure that the SMA conference was no different, and it certainly had its own share of problems that popped up, from the outside as an attendee you would never have known. Everything, from the parking accommodations to the audio/video equipment to the scheduling of the various workshops, was carried out masterfully. The “Cure SMA” employees and the volunteers at the conference did an amazing job of keeping things running smoothly (and even more impressively, on time), and I believe I speak for everyone who attended when I say “thank you” to these awesome individuals. It is only through their abilities to prepare for everything they could and overcome the unexpected obstacles that arose (two skills that all of us with SMA have had to master and appreciate), that this year was such a success.
All of the time and energy that the “Cure SMA” staff put into organizing the conference is what made this event such an incredible experience. Like I said, while I have been to academic conferences and such over the years, this was my first SMA Conference. In fact, this was my first conference of any kind that focused on disabilities, so I was not sure what to expect before I arrived. It had been several years since I had been around lots of other people in wheelchairs, and I had never been around this many other physically disabled individuals, so I knew that this would be different from any event I had ever been to. During the days leading up to the conference I kept wondering what it would be like at the hotel. I kept thinking about silly, little things like how long the wait for an elevator would be at a hotel completely booked by people in wheelchairs. Or how loud a room filled with hundreds of ventilators and suction machines would be. These are obviously trivial things that would have no impact on how good the conference was, but for whatever reason these are the things I thought about (the elevator line was long, but no one was in a hurry). Thinking about these logistical challenges and such only fueled my intrigue and anticipation for the conference, and even though I had no idea what to expect, I was excited and ready for this adventure, which I knew would be full of surprises and new experiences.
The first sign that this was going to be different from anything I had ever experienced occurred before I had even entered the hotel. As we drove up to the Westin and turned into the circle drive by the front entrance to unload me and valet my car, all you could see was this caravan of conversion vans with wheelchair lifts. They were lined up on either side of the driveway in two long lines about 10 cars deep, and everywhere you looked you saw families packing up medical equipment, suitcases, and wheelchairs into their vehicles. You would think that this sort of controlled chaos and slow-moving progress, especially when you are trying to get on the road, would have made everyone involved irritated and grumpy, but despite the mayhem everyone I saw had a smile on their face. No one was blaring their car horn because they could not get out, complaining to the parking attendants about the accommodations, or arguing with other drivers for being slow. In fact, it was quite the opposite. Everyone was smiling, patiently waiting their turn, and even helping other families pack up their belongings. This was an unexpected, but heartwarming, sight to behold, and it illustrated one of the many important things I took away from the conference.
It took me a while to fully appreciate what this scene had to teach me, but after giving it some thought, I realized the powerful lesson that was being presented to me that day in the circle drive. On any other day, at any other event, a parent holding up a whole line of traffic to take care of their disabled child, who needs you to drop everything to give them a suction, would be met with car horns, foul language, and any number of colorful hand gestures. On this day, at this event though, this same action was met with nothing but patience, smiles, and understanding. No one was upset, and the reason for this is understanding. They were not upset, because two weeks, two months, or a year ago they were in the same situation. They know the frustration and embarrassment that comes with inconveniencing a whole group of people, because this awful disease has erupted yet again to make your life difficult. They know what it is like to have to burden others close to you, or even strangers, to make sure your disabled child has the best life possible. They know the struggle that comes with having a family that is affected by SMA. They understood.
This knowing that everyone around you understands what you have to go through can be a very powerful thing. In addition to witnessing this idea outside of the hotel, I also got to feel its effects first-hand throughout the conference. It was so refreshing to be able to introduce myself to someone and not have to explain who my nurse was, why I carry around a suction machine, or anything else about my disability, because they already understood. Inside that hotel, for the first time ever in my life, I was “normal.” It is difficult to put into words, and I do not know if this will make sense, but experiencing what it feels like to be the “normal” one was an extremely refreshing and empowering thing. While I did not feel abnormal or misunderstood in general, nor did I think about how nice it would be to be “normal” very often, getting to know what it is like to just be Scott had a major impact on me. I was the exact same person at the conference that I was the weekend before, but the way I felt about who I was completely changed as a result of being in this environment of understanding. It helped me to better recognize and appreciate the fact that even though my SMA is a part of my identity, it does not define me any more than my gender, ethnicity, or religion do. It is only the way that others (as well as myself) view and understand my disability that it impacts my life. Getting to experience what “normal” feels like and gaining this insight into who I am is something that I will always remember, and I am certain that I will lead a happier life because of it.
Witnessing the controlled chaos outside the hotel and experiencing what it is like to be “normal” for a brief time illustrated the powerful effects that understanding can have on our lives. Watching an entire driveway full of vehicles patiently wait for someone to move without any signs of anger or frustration shows you how much your own understanding of what others are going through can influence your thoughts and actions. Not only that, but having a strong sense that others understand you, and the obstacles you face, can also have an enormous impact on your life. The common experience of battling a disease like SMA changed a situation that would typically be filled with misunderstanding, awkwardness, and frustration into one filled with nothing but empathy and compassion. You will be surprised at how often this phenomenon occurs throughout your life, if you really think about it. Keep this story in mind the next time you angrily flip someone “the bird” for holding up traffic or get upset when someone inconveniences you. Remember that you cannot always see or understand the struggle that others go through, and that the lens through which you view a situation makes a big impact on your feelings. Try to be more understanding of those around you, and you will eventually find that you have a better understanding of yourself as well. If we can all just be a little more understanding of one another, just imagine how much happier the world could be.
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.
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.
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.
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.
This is the first entry in my new series of posts, “Roll Models Mail Call.” These blog posts will be a little bit different from my typical articles, because the topics being discussed will be determined by the types of questions that you send my way. The questions will come from a variety of sources (i.e. emails from readers, questions submitted on www.scottdrotar.com, questions from audience members from my Roll Models talks, etc.), but no matter where they come from, I will do my best to answer anything you ask as best I can. My hope is that this will help me to better understand the types of things you want to know about, and that it will give you a better idea as to what my life is like. I am excited to see what interesting and insightful questions you have for me, and I cannot wait to answer them.
The first two questions in this series both come from people who attended my Roll Models talk, “Beyond Bedside Manner,” and they both are centered around the concept of how I try to lead a “normal” life while coping with having a physical disability.
Hello Scott, I truly enjoyed “Beyond Bedside Manner” and find you an incredibly compassionate young man. My family struggled throughout my childhood with my mother suffering severe MS, so I can certainly relate to the difficulties of the caregiver. However, I am interested in how you managed to cope with your situation upon receiving your diagnoses. The 17 year old son of a close friend of ours has recently been paralyzed from the neck down in a terrible accident. As he may still regain some function, they are trying to prepare him emotionally for the possibility that he may never regain mobility beyond where it is now. Any advice is greatly appreciated.
–CA Wilkins; Massachusetts
This is a question that probably makes a lot of sense to any able-bodied person, but it may surprise you that for me, and I am guessing most people with lifelong disabilities, this question is extremely difficult to answer. What makes coping with any diagnosis so hard is that you are losing a huge part of your life and who you are. You are going from living as a healthy, able-bodied individual to living as someone with a physical disability. This is a huge transition, and it makes complete sense that so many people struggle with coming to terms with this sort of news. That being said though, since I never knew life as an able-bodied person, I have nothing to compare my life to, which makes dealing with my diagnosis much easier. In a sense, I do not really know what I am missing in a lot of ways. Just because I think it makes living a happy life with a disability easier however, does not mean that I believe it is better to have grown up this way. As I discussed in my article, “Loved and Lost,” the fact that I never had to go through the loss and grief of being diagnosed may be easier to cope with, but that does not mean that I would not trade the years of experiencing this emotional pain for even one day of life as an able-bodied person.
I would trade any amount of suffering for a chance to experience things like running, jumping, and chasing butterflies, because I know that the happiness these experiences would bring me as memories for the rest of my life would greatly overshadow any amount of emotional pain I could feel. When you live with a severe, physical disability that not only impedes, but will also shorten, your life, looking back and enjoying all of the happy, wonderful times in your life is what keeps you fighting. I live my life every single day, fighting this disease that is slowly and methodically destroying my body, trying to experience everything I can before my disability takes away yet another piece of me. I fight this way, because in the end, these memories I make while I still can will be all I have to draw happiness from, and I want a lot of happiness to choose from.
Why are you in KC when your family is in Indiana?
I received this question in an email from an audience member who saw my Roll Models talk, “Beyond Bedside Manner.” Given my physical limitations this is a fair question to ask, and I was surprised when I realized that I had never explicitly discussed this on my blog. Here is the response I sent:
“I live in Kansas City mostly because I went to graduate school at the University of Kansas. When I was trying to decide where to study after getting my bachelor’s degree, KU was the best fit for me (and they made a nice financial offer to entice me out here to teach and do research). It was not an easy transition by any means, and my mother was less than pleased with my choice to move so far away, but it is my life and was my decision to make. Somehow, I was able to make it work and build a happy, successful life for myself, despite having to “start from scratch” in terms of setting up caregivers and taking care of my medical needs. After finishing graduate school a couple years ago, I decided that moving just 25 miles to Kansas City, and not going through the whole process of setting up new caregivers and everything again back in Indiana, made the most sense. Living on my own has always been a dream of mine, and while I do miss my parents and siblings, I am so happy that I am getting to live my dream.”
Taking my response to a deeper level, I want to add that throughout my entire life I have never been willing to let my disability dictate my choices. While I may have to account for all of the ways that my disability will complicate the decisions I make, that does not mean that I have to make choices based around it. This may seem like a small distinction, and it is something that even my family has a hard time understanding, but the philosophical differences between “living life with a disability” and “living a disabled life” are huge. By choosing to “live my life with a disability,” as opposed to “living a disabled life,” I maintain control over my life and the path I take. My physical limitations already have robbed me of countless experiences, and by living this way, and refusing to allow my body to dictate my future, I prevent this disease from taking even more from my life. Retaining this control over the directions my life takes helps me live and make decisions just like everyone else, which brings a whole new level of happiness to my life.
The American Recall Center, in celebration of “Patient Safety Awareness Week,” is holding a “Medicine Cabinet Clean-Out Challenge.” For this event, they have asked a few “influential bloggers” (their words, not mine) to write an article about responsibly using your medications and sharing some personal experiences. They asked yours truly to participate, and I was more than happy to oblige. I know it is coming a couple days late, but today’s article is the piece I wrote for their “challenge.” I hope you enjoy it, and that it makes you think about your own pharmaceutical use.
Few areas of research have made as much progress or shown more growth in recent history than the field of medicine. Just in my brief lifetime there have been numerous, major medical advancements that have resulted in longer lifespans, as well as a better quality of life, for people with all sorts of diseases and disorders. One of the areas of medicine that has developed and changed the most over this time is the pharmaceutical industry. We now have instant, unlimited access to hundreds of over the counter medications, and there are thousands more available by prescription, that would have been considered witchcraft just a decade ago. While these powerful drugs now at our disposal can be extremely helpful and alleviate a lot of pain and suffering, they can also be quite dangerous. If not used correctly, these capsules and tablets can quickly go from life saving medications to life threatening poisons. It is now our responsibility, as individuals with infinite access to these drugs, to make sure that we are taking the proper care when dealing with pharmaceuticals. As Franklin D. Roosevelt said, “Great power involves great responsibility.” In celebration of “Patient Safety Awareness Week,” I am going to share with you my own methods for making sure I am a responsible consumer in regards to my medications.
Since I was born with the genetic, neuromuscular disease, spinal muscular atrophy (SMA), I have been in and out of hospitals, seen more doctors, and dealt with the medical field more, than most people twice my age. I have never walked, require nursing care 24 hours a day, and have the lung volume of a toddler. Although there is no cure or treatment for SMA, there are lots of drugs that can treat the symptoms that my disability causes and improve my life dramatically. Thanks to modern pharmaceuticals, I am able to open up my bronchial tubes when my breathing gets weak and manage pain that on a good day is almost bearable. There is not a doubt in my mind that without the various drugs I take on a daily basis, I would not be able to lead the happy, fulfilling life that I do. Part of using these medications to better my life though, is making sure that I am handling them in the proper way, both to ensure my safety and the safety of others. Even though I have a team of nurses who oversee my medical care, which includes my medications, I still believe it is my responsibility to make sure I am using my meds correctly. When I think about how I go about this process of being a responsible medication consumer, three things come to mind. These three areas that come up are storing my drugs properly, taking them correctly, and disposing of them in a safe way.
Storing Your Medications
The first step to proper pharmaceutical consumption is making sure you are storing your medicine in the proper manner. For most drugs in most homes, this means putting them in your “medicine cabinet,” which should be a cool, dark place out of the reach of children. While this is fine for the vast majority of over the counter medications, and even most prescription drugs, there are plenty of situations where there is a lot more to it. In my case for example, I have to store my assortment of medications in three separate areas, based on their type and strength. First, I have my typical “medicine cabinet” that houses my over the counter medications, breathing treatments, and other drugs that are not narcotics or controlled substances. Second, I have some meds that have to be refrigerated, so obviously these go in my fridge. In order to keep them safely separate from food, I put them behind the butter tray in the door of my refrigerator. Third, I have a combination safe hidden in my home that holds the majority of my narcotics and other controlled substances, and I only take out enough of each medication for a few days. The few pills I take out are kept out where I can see them in clearly marked bottles. I keep a watchful eye on this at all times, and only my nursing staff and I know the combination to my safe. With my narcotics, I also keep a running count of any drugs I take or get from the pharmacy, so that I can always go count my meds in the event that I thought some were missing.
In addition to selecting the best location for housing your medications, experience has taught me a couple of other best practices for storing your meds. One is to always, and I mean always, store your drugs in the container they come in. Whether they are over the counter or prescription, all medicine should be stored in the labeled container you got it in. I know it may be convenient to put a bunch of different meds you commonly take in an unmarked bottle (Altoids tin, old contacts case, empty lip balm container,…) and throw it in your purse or backpack, but it can also be quite dangerous. What if you mix up the diphenhydramine and the ibuprofen, take a couple of sleeping pills instead of some painkillers, and get behind the wheel of your car? At best it is dangerous and a potential DUI, and at worst it is a potentially fatal mistake. Additionally, carrying certain prescription drugs, like narcotics and other drugs used recreationally, in any container other than the bottle you got from the pharmacy is illegal in most states. By simply keeping your drugs in the correct, labeled bottle, you can eliminate issues like this from ever happening.
Another important aspect of proper medication storage that can eliminate life-threatening errors, involves not the drugs themselves, but the paperwork that comes with them. Every time you get a prescription, you get the medication your doctor ordered and a small amount of paperwork. These pamphlets that most people quickly discard without even a glance, can contain vital information for the proper handling of the medication. Information like what foods limit the drug’s effectiveness and what other medications can have dangerous interactions with it, may be fresh in your mind today, but three months from now it will not be. Without the accompanying paperwork, you will have no way of knowing all of this important information, which could result in dire consequences. For this reason, it is always a good idea to keep the paperwork that comes with your medications in the same place as the drugs themselves, or at the very least in a single, well-designated place, so that you will always have easy access to it when necessary.
Taking Your Medications
Having access to the documentation that comes with every medicine you pick up is a critical part of safely and effectively taking your meds, which is the second important aspect of being a responsible pharmaceutical consumer. Due to the powerful effects that medications can have on your body, it is vital that you are taking your drugs as they were designed. Even everyday substances, like Ibuprofen and acetaminophen, can do major physical harm if taken incorrectly, which is why properly taking your drugs is so critical. While safe drug use may start with your prescribing physician and the pharmacist, they are just the first line of defense. The person most responsible for ensuring that you take your medicines correctly is you. Since it is your life and well-being that is on the line, it is up to you to be a smart consumer when it comes to your medications. I go through a three step process to educate myself and make certain that I am taking my drugs in the right way, and if you follow this method you will know that you are safely taking your medications. First, have your doctors explain the drugs they prescribe to you and how you should take them. Do not be afraid to ask questions either, because that is the reason they are there. Next, ask your pharmacist about any pertinent information or dangers associated with your medications. Last, read the literature that comes with any new drugs you begin taking. If you do all three of these steps, and they all give you the same information, you will know you are doing things correctly. More importantly, if they do not agree, you will know that something is off, and you will be able to take action to avoid any possible problems.
While I now know to double and triple check the information on my prescriptions before taking them, I did not come by this knowledge by chance. I had to experience the negative, and potentially life-threatening, effects of improperly taking your medications before obtaining this insight. My first experience with improper drug use occurred when I was in graduate school. I had just been prescribed a very potent painkiller by my doctor, and this drug was taken by placing an adhesive patch on your skin (like a nicotine patch). Both my doctor and pharmacist said to simply place a patch on my abdomen, make sure it was securely adhered to my skin, and replace it every two days, and I followed these instructions to the letter. I knew it would take a while for this drug to build up in my system, but with how strong this medication was, I should have felt at least some relief from my chronic pain within a day or two. Even after a week of using it however, I was still in just as much discomfort as I was without the patch. My physician upped my dosage, but still, I felt no relief. As I was tired of being in constant agony from feeling no effect from this potent drug, I decided to do some research on this medication. After doing some Google searches and reading about this drug and how it works, I was able to figure out why this medicine was having no impact on my pain. This particular patch gets into your bloodstream by being absorbed by fats under your skin. I only weigh 60 pounds, and pretty much all of that weight is organs, bones, and skin. Since I did not have enough fat, I could not absorb the drug, and that is why it was so ineffective in controlling my pain. As soon as I talked to my doctor and switched to an oral version of this medication, I finally got the relief I was hoping for from the beginning. It turns out, that if I had just opened up the literature that came with every box of patches and read it, I would have known this information from the start and avoided weeks of suffering.
This story illustrates the importance of being well-informed about your medications. While doctors and pharmacists are extremely knowledgeable and helpful in giving you information about your drugs, they are human, and they do make mistakes. Even though my story may have had a happy ending, this med error could have just as easily done major, and possibly life-threatening, harm to my body. This life and death nature of using medications properly is something that I have experienced first hand. I will share this story with you, and hopefully show you how critical correctly taking your medications can be, in the second part of this article.