Over the years I have experienced more than my share of scary situations. I have been suspended upside down for 20 hours while my back was cut open so they could fuse a rod to my spine. I have had a hole cut in my throat so they could insert a plastic tube because I had stopped breathing. I have even been pulled over on the side of a toll road in the dead of night unable to catch my breath, just hoping that the ambulance would arrive in time to give me oxygen. I have endured all of these horrible scenarios, and even though every one of them was terrifying and took all of my courage and fortitude to survive, there is something else in my life that is much more frightening. This is something I have to face every day, and despite the frequency with which I have to deal with this scary situation, it never gets any easier to overcome. This idea that torments me is the fact that I have no clue as to what will happen to my body next as my disease progresses. It is the fear of the unknown that scares me the most.
Spinal Muscular Atrophy (SMA) is a progressive, degenerative disease. This means that with every passing day, my disability wreaks more and more havoc on my body. While it is a given that I will gradually get weaker and more physically fragile, how and when my disease will ravage me next is a complete mystery. On any given day I could wake up in the night drowning in my own secretions struggling to breathe. I could wake up in the morning and pull a muscle getting dressed, putting me on bed rest for a week. And I know one day I will wake up and not be able to swallow safely as my muscles weaken, forcing me to endure another surgery to insert a feeding tube to sustain me. I wake up every day not knowing whether this will be the day that my disease takes away another piece of my life, and even though losing the ability to do things is hard to manage, it is the not knowing that I find to be the most difficult aspect to deal with. It is like I am playing a game of “Hot Potato” by myself. Sometimes I feel like I can almost hear a timer counting down the time to the next attack on my body, and all I can do is wait, go about my life, and hope that when the timer reaches all zeroes that I will be strong and prepared enough to overcome this new obstacle.
I could give you any number of examples of times when I had to face the unknown in order to successfully make it through challenging events in my life. However, I think that the following situation involving my mom will most clearly illustrate how difficult dealing with the uncertainties of my disease can be, not only for me, but for my family as well. For as long as I can remember, I knew that I wanted to go off to college (specifically, the University of Notre Dame) after high school and live independently of my family. That was my life plan, my dream. My family was completely supportive of my goals, and they helped me do everything I could to make my dream a reality. I got perfect grades in school, effectively branding myself as a geek and killing my popularity. I did tons of extracurricular activities like band, drama, chess, and academic competitions, just in case being a nerd during school wasn’t geeky enough. I also studied my ass off for both the SAT and ACT, and I scored high on both tests. Finally, the time came to send in my application to Notre Dame and wait to see if my family’s support and encouragement and my years of effort would pay off.
Four long months later, there was a large, thick envelope in our mailbox from the University of Notre Dame to Mr. Scott Drotar. Both my parents and I knew before even opening it, that I had achieved my dream and been accepted. While this life altering moment was filled with smiles, happiness, and tears of joy, this was also the moment that my relationship with my parents, mainly my mother, changed dramatically. It was at this point that my mom realized that my life plan of moving out on my own, which she had always vehemently supported when it was just some far off pipedream, was actually starting to take shape. It was no longer the hypothetical “someday, if I go off to college,” but the more concrete “next Fall when I go to Notre Dame.” The thought that I was going to move away from home, where she would have no idea who was taking care of me, if I was safe, or what I was doing, terrified her. Even though there were specific issues that she was worried about, the primary source of her fear was the not knowing, the “what if…?” For the first time in her life (and mine), she would not know if I was safe.
From about a week after I got my acceptance in April up until I left for the dorms in August, my mother and I had at best a strained relationship. This was tough to manage on several levels, but most notably this was the first time in my life that I did not have the unconditional support of my parents (my father silently supported me but had to keep the peace). While getting accepted had provided me the opportunity to pursue my quest for an independent existence, there were still lots of logistical issues to work through before I could actually make my dream a reality. Major hurdles, like how to get nursing paid for, training enough nurses, and finding a suitable dorm room, were all things that had to be addressed before I could safely live on campus. Up to this point, any time I needed help figuring out how to overcome the obstacles presented by my physical limitations to live a “normal” life, my mother had always been my biggest supporter and advocate, but when it came time to make arrangements to get me on campus, I was on my own. While she did not actively undermine my efforts to solve these logistical issues, she definitely didn’t help either. Any time I would start talking about an aspect of campus life or the dorms, she would quickly bring up some highly unlikely, off-the-wall scenario that could happen to harm me. Things like “what if your nurse abandons you, in the snow, no one walks by for hours, and a gnome comes and steals your phone?” Ok. Maybe she was not that irrational, but you get my point.
I had a really hard time understanding why she felt the way she did while this was happening, but looking back now I know that she was reacting out of fear. Her fear of not knowing whether I would be safe. I know this because I remember how incredibly terrified I was of the exact same thing. I was almost petrified by fear at the thought of leaving the only life I had ever known for something completely unknown to me. I had no idea whether I would be able to keep myself safe and healthy on campus, and I was afraid of all of the “what if…?” type situations that would occur. I had it easier than my mom for two reasons though. First, in exchange for facing my fears of the unknown, I was getting to go on this great, new adventure and fulfill my dreams. This made the risk I was taking much easier to justify. Second, even though I was entering into a totally unknown situation to me, and I had no idea what would become of me, I was in the driver’s seat and had at least some control over my circumstances. My mother in addition to having to face her fear of the unknown, also had to come to terms with the fact that she would have no control over my life any longer. This is a double-whammy of feeling out of control and helpless, so I can understand why she reacted the way she did.
Not knowing what is going to happen or when is so frightening to my mother and I because in order to keep me alive and healthy for my entire life, we had to be able to plan for and anticipate every potential danger. By carefully mapping out how to handle possible problems that could arise, we were able to avoid putting me in harmful situations. Moving off to college, to live in an entirely new environment, with an entirely new set of people was such a big undertaking however, that no matter how hard we could try, there is no way we could anticipate many potential problems. I fully believe that if we had been given a list of all of the possible issues, even if it was 500 items long, that this transition would have gone much more smoothly. It was the not knowing and the inability to plan and feel in control that was so terrifying and debilitating. It was the “x” in the equation that scared us most. It was the fear of “what if…?”, the fear of the unknown.
Despite having to make the bulk of the arrangements on my own and having to learn to do things for myself all at once, I was able to accomplish my goals and fulfill my dreams of attending the University of Notre Dame and living independently. In order to do this, I had to develop the skills to go about my life knowing that I have no idea as to when or how my disability will challenge me next. I don’t have all of the answers to coping with my fear of the unknown, and I still have to work at it to this day, but there are a few ideas that help me manage my feelings. It helps me to think of everything that I have accomplished despite my disability, especially those things that experts said I would never do. This helps me remember that I have, and I can, overcome a lot, which means that I will probably survive the next hurdle life puts in my path, even if I don’t know when it’s coming. I also try to remember that by living my life in spite of this fear and inspiring others, that I can help people, give my life meaning, and leave a legacy that my family and loved ones can be proud of. Most importantly though, I keep in mind that the whole reason I fear the unknowns of my disability is because I don’t know when they will occur. This means that they could happen 20 years from now, and that is a long time to worry about something. So, since I cannot stop it from happening and cannot control when, I may as well just live my life as if it is 20 years away. This prevents me from worrying about these unknowns that are out of my control, and it helps me focus my time and energy on living a happy, successful life. By thinking about things this way and through the support of my family, I can find the courage every day to get up and go about my day, and if it happens to be a day that I have to fight this disease, then I will gather my strength and fight like a champ.
We all have to go through situations where we have to move forward without knowing what is going to happen at some point in our lives. We like to know what lies ahead of us so that we can plan for our safety and success, and as a result when you cannot do this you feel fear and apprehension. You have to learn to manage your fear of the unknown, so that you can avoid having these feelings limit your life experiences and happiness. Recall all of the things you have accomplished, and trust that you have the tools to overcome a lot of adversity. Be an inspiration for others by living a fulfilling life in spite of your fear. Remember that you don’t know when anything bad will happen, which is why you are afraid, so it could happen decades from now, and you don’t want to waste that much time worrying about anything. By developing these mental tools and coming up with some of your own, you will find it much easier to cope with the unknown. With this fear out of the way, you will be able to enjoy and experience so much more in life.