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.
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.