Over the Summer, the effects of old age finally caught up with my grandfather. As his Alzheimer’s progressed and his physical abilities declined, it was necessary to move him into a nursing home where he would be safe and receive quality care. While my grandpa is doing very well adapting to his new environment, the task facing my mother and her siblings is much more daunting. Now that my grandfather is no longer living in his home, it is time to start going through his things, cleaning the house, and the like to get his affairs in order. This would not be so bad, but my grandfather was a borderline hoarder. Growing up during the Great Depression, he developed the mentality that you can find a use for anything, which meant he kept everything. As you can imagine, 80 years of saving every coffee can, peanut butter jar, and piece of paper leads to quite the collection of, for the most part, junk. The old saying, “one man’s junk is another man’s treasure,” must be true though, because the other day as my mom was going through some old papers, she ran across a diamond in the rough.
Stuck amongst a stack of random bills and old mail was a copy of a poem that my sister had written when she was 18 years old and a senior at John Glenn High School. It was a piece entitled “About My Brother,” and she had written it for the school’s literary magazine, “The Aerial.” We have no idea how, but neither my mom or I have any recollection of this poem ever existing, and even my sister, who is the author, only vaguely remembers it. Even though it has been over a decade since Stephanie wrote it, her heartfelt words touched me very deeply and brought forth a plethora of powerful emotions. Her loving, moving poem is below.
About My Brother
By Stephanie Drotar
The one who is responsible
for most of the comedy that takes place at home,
Who keeps his sideburns long, but his hair short
so it fits under his ridiculously fuzzy Eskimo hat,
Who freely interjects the words “plethora,” “chicken,”
and “bulbous” into daily conversations
With a voice that makes him at least sound
normal when you’re in another room,
Who can’t yell, or really even laugh out loud,
but has no problem clicking and tapping to no end,
Whose wardrobe consists of t-shiris with professional sports team’s logos
so competing vicariously is more fun,
Who uses technology as an escape and exercises
his mental limbs by playing video games and chess,
Who aspires to be on The Late Show with Dave
because he can whistle and hum simultaneously,
Who says he hates the cat,
Who makes you forget the wheelchair, the disease, and the weakness
that could so easily define him.
Reading Stephanie’s poem flooded me with emotion not only because her kind words show everyone how deeply she cares about me, but also because it reminds me of a very important point that I often lose sight of. Being born with spinal muscular atrophy (SMA) has meant that I have needed help doing pretty much everything for my entire life. Up until I got my trache when I was 15 years old and started requiring nurses, this meant that my family had to help me with all of my needs. In doing this my parents and siblings devoted an enormous amount of time and energy and made countless sacrifices so that I could live a happy, fulfilling life. Now we are a close, loving family, and they were happy to help me, but that does not change the fact that they had to give up a lot in exchange for having me in their lives. Even though my siblings don’t see it this way, and they have never said anything remotely like this to me, I have always felt like I am in their debt from everything they have done for me. This feeling of guilt and indebtedness towards my brother and sister would probably be overwhelming if not for them expressing their feelings through things like this poem. Getting to see how I have helped them and understand how they see me, gives me a better perspective on our complex relationship and my place in our family.
I have never known life without SMA, so even though I can objectively understand that my life is much more difficult than any able-bodied person’s, to me it is just normal. I have always thought that this probably makes it easier to live with my disability since I don’t really know what I am missing, but it also means that I forget about how much I overcome every day just to go about my life. I forget that through the eyes of my loved ones, like my sister, how hard I fight and the pain I endure to lead a happy life is quite an inspirational achievement. Through their eyes, the fact that I still smile and make people laugh even though life has given me little to smile about is just short of a miracle. Through their eyes, the way that I can make people forget about my wheelchair within minutes of meeting me is an amazing accomplishment. All of these things that I do as just a normal part of my life, through their eyes, are something great, and my spirit gives them inspiration and makes them proud that I am a part of their lives. Merely through going about my day with a smile and confidence despite the obstacles I face is how I give back to my loved ones for everything they have sacrificed to help me. By being reminded of how I am helping my family and loved ones bring happiness to their lives, my feelings of indebtedness are easier to deal with.
I am almost happy that my grandfather stowed this poetic treasure away with the rest of his hoard, because finding it, and getting to read about how my sister at only 18 years old felt about me, has been a real treat. Knowing how much of an impact I had had on her, even though I was a mere 15, has made me feel so loved and connected to her, and it has also helped me regain my perspective of what I bring to her life through our relationship. I do not have the words to express how incredibly lucky I feel to have had a sister like Stephanie in my life. Her ability to make me feel like any other brother, while simultaneously taking care of me in an effective and loving way, is something that I will be ever grateful for. But while I could never repay her for everything she has done and sacrificed for me, I am glad that I can bring something positive to her life by living mine. Her words made me remember that the best way to repay her sacrifice is to honor it by dreaming big and living the happiest, most amazing life as possible, and that is exactly what I plan to do.