Growing up with a physical disability has forced me to develop the tools to cope with the mental and emotional aspects of being injured or ill. Things like keeping my cool even when my life is in danger, putting on a brave face so my family doesn’t worry, and having the inner strength to keep fighting are almost second nature to me now. Every now and then though, I am reminded that, while having to overcome all of the obstacles my disease throws at me is extremely difficult, what my loved ones have to go through in watching me fight for my life and well-being is much harder. It is much easier to be the one that is injured in the hospital bed, than to be the one sleeping sitting up in a chair for days watching your loved one suffer. In fact, knowing that my family has to watch helplessly as I battle and struggle to get through whatever physical hardship I am facing is the most difficult part of dealing with my disability. The incredible amount of strength and compassion that my family has shown by being there for me as I have spent a lifetime going in and out of the hospital is simply mind blowing, and it is something that I will be forever grateful for.
I first learned how much more difficult it is to watch someone be sick than to be the one actually ill, when I was 13 years old. I was sitting in my 8th grade social studies class listening to Mrs. Chamberlain talk about the American Revolution, when one of the secretaries from the school office knocked on the door and pulled me out of class. Now, I knew I hadn’t done anything to get me in trouble, at least not that they knew about, so I had no idea why they wanted to see me. When I got out in the hallway, I saw the school nurse standing there with a very solemn, worried expression on her face. She leaned down and quietly said, “Scott, your parents wanted you to know that your brother has been admitted to the hospital with a severe respiratory infection. He is stable, but very sick.” Ryan had been feeling under the weather and been home from school for a few days with a wet, barking cough, but he hadn’t seemed that sick, so I was caught a little off guard by this news. It probably didn’t help either that this was all the information I got before they sent me back to class. I was so preoccupied and concerned that I don’t think I heard a single word any of my teachers said the rest of that afternoon. All I could focus on was finding out what was wrong with my brother and getting to see him.
As soon as my mom picked me up after school, I learned that Ryan had been diagnosed with a drug resistant form of bronchitis, and they were keeping him in the hospital to monitor him and give him IV antibiotics. After picking up my sister, we all drove up to the hospital to see him. I remember feeling like the drive took forever, as all I could think about was my brother in that hospital bed sick and scared. We eventually navigated our way through the maze of hallways and elevators and finally arrived at his room. I saw him sitting in his bed and smiled at him as I started to enter the doorway, when my mother stopped me. She said, “Scott you can’t go inside. He is really sick and contagious, and we cannot risk you catching what he has.” This crushed me. All I wanted to do was provide some comfort to my brother, and I couldn’t even get in the room. As I watched him from the doorway, and I saw him looking exhausted and empty, I felt completely and utterly helpless. Ryan and I have always had this tight, unbreakable bond of brotherhood, and there was nothing I could do to help him or make him feel better, like he had done for me so many times over the years. This was when I realized that I would much rather be in the hospital bed, than sitting beside it.
I don’t know if this is a feeling that everyone has, or if it is a result of living with my disability and spending a lot of time in hospitals, but any time someone in my family is sick or injured, I would gladly trade places with them. This is partly because I hate to see them in pain and suffering, and I know that I have the strength and fortitude to shoulder any malady. Mostly though, it is because I hate the complete feeling of helplessness that comes with trying to comfort them. When I am the one sick, I have some influence over the situation. It is me battling and fighting the disease with the tenacity of a honey badger, and I know how strong and determined I am to get better. When I am watching from the bedside however, I have absolutely no control over what happens. All of my inner strength, will to fight, and conviction to beat my disability are useless, as I sit there watching them suffering. All I can do is hold their hand, try to distract them from the situation, and provide moral support, while I sit and wait to see if and when they will get better. I guess as much as I love watching a good suspenseful thriller now and then, when it comes to my family, I would rather be directing the action.
As hard as it is for me to sit by, feeling useless when my family is ill, I am happy to do it because I know that, while I may feel like I’m not doing anything useful, just my being there is enough to make them feel better. I know this, because every time I end up in the hospital, I always feel better when my mom and dad are there. I am sure they feel just as out of control as I do in their position, but there mere presence is a huge source of support and energy. Their being there is what gives me the strength to fight as hard as I do, which makes them anything but useless. I would like to take this opportunity to thank my family for always being there to comfort me, for always driving 600 miles overnight to be with me, and for always helping me find the strength to keep fighting. You are the fuel that keeps me going no matter what, and I am so grateful for that. I hope you know, that while I hope it never happens, you can call me any time you are sick and scared, and I will be on my way.