My Guiding Light ~ by Emily P.
I told myself I was dreaming. I told myself to wake up to escape the dream. I squeezed my eyes shut and tried to wake myself. But the problem was that I was already awake. Reality surrounded me everywhere, I was not safe within my mind as I had thought. I opened my eyes, the shrieks echoing in my ears. I got out of bed mechanically, without any sort of feeling or emotion. My mind seemed to be running on some form of autopilot, and my body was following suit. I stood at the top of the staircase, listening to commotion going on just below me. My heart was pounding out of control, I could hear it thrumming in my ears. My mouth was completely dry and I tried to form some sort of thought in my mind, but nothing was registering. Well, one thing was, one single thought that kept repeating itself over and over again: he can’t be dead.
That was the morning of March 21, 2009. Nearly two years ago now, but if I try, I can recall the memory as if it happened hours ago. The smells, sounds, and sights are as clear as day, and probably will be forever. That was the day my brother, Bryant, passed away. He was 20 years old, and to me, immortal. If a passer by were to hear me say that and then see a picture of Bryant they’d probably think I was crazy or in denial. This would be because he was physically disabled. He got around using a power wheel chair, breathed through trache in his neck, ate through a G-tube inserted in his stomach, and spoke using a device called a Dynavox. He looked fragile, he appeared helpless and ill. And maybe he was ill. He was in fact medically fragile, everybody who knew Bryant knew and accepted this fact, well, to an extent.
Bryant was born with a chromosomal disorder that led to physical anomalies and some physical limitations. From birth his life was seen as a struggle, a fight to survive. Doctors told my parents he wouldn’t live 24 hours, but when he did they changed that to a week, then to a month, then to a year. But as time passed and Bryant continued proving them wrong, people began to see there was something beyond the “disabilities,” there was a real, living, breathing, functioning, and happy person under the supposed “limitations.”
My mother has said that the human spirit is one of the most powerful things, and I believe that. Bryant lived everyday to the fullest, never letting petty, silly things bring him down. I can admit that I still allow small things to this day get me down, but not for long. Growing up with an amazing person like Bryant has taught me a lot, and changed be for the best. I don’t want to say he inspired me because he was so “pathetic” and “sad,” because that would mean it wasn’t Bryant who inspired me. Bryant was neither of those things. What I mean is that he rose above the challenges and accomplished more than a lot of people are able to in their lifetimes. The reason he inspired me is because he was able to get past his own personal daily battles and smile, laugh, and share his happiness with others. He was a joy to be around and was always able to lift my sprits.
Unfortunately, life isn’t fair. As the saying goes I suppose. Life throws a lot of unexpected and oftentimes unwelcome hurdles for us to jump over. Sometimes we stumble and fall and it takes awhile to pick ourselves up and keep moving forward, but with help from loved ones and inner strength and perseverance, we find a way to get back up, dust ourselves off, and keep going. It may have taken myself and my family awhile to find a new kind of “normal” without Bryant in our lives, and we may still be working on that, but the point is we are. We’re picking up the pieces and supporting each other as life inevitably moves forward.
That morning was unexpected, and highly unwelcome. I remember my siblings coming out of their rooms at the early time in the morning, wondering what the commotion was about. I managed to keep my shaking hands and racing heart from alerting them to what was happening. Instead I assured them it was okay and to just stay upstairs for the time being. Inside though I wanted to cry, I wanted to scream, and more than anything I just wanted everything to stop, to rewind and start over. This wasn’t supposed to happen. Bryant wasn’t supposed to leave me; leave us.
My mother came up the stairs, she wasn’t crying or screaming, she actually appeared calm. She briefly explained they were bringing him to the hospital, but it didn’t look good. Again the tears tried to break free but I held it in. It’s like we were both trying to keep ourselves in control, because letting go of that control symbolized no hope. Maybe if I didn’t cry it meant he would be fine. We would all be fine. And I’d finally be able to wake up from the nightmare.
I watched out the window from upstairs as the ambulance pulled out of the driveway. My sister and brother were in their rooms, clueless as to what was going on. I wished I could be like them. I wished in that moment I could just shut my mind down and pretend that nothing was real. If he was going to leave us, maybe this whole life was a dream, because I couldn’t imagine a life without him in it.
About fifteen minutes later there was a call from the chief of the New Boston Fire Department, who was actually quite close with our family since both my parents had been EMTs. He explained he was going to be coming over to pick some stuff up, and I felt my heart drop and rise at the same time. He wanted to come get Bryant’s Bert doll, the character from Sesame Street. It was a doll that Bryant had had for years and years, a doll that had pretty much become apart of the family. I was still numb at this point, still functioning mechanically, so I just said yes and awaited his arrival.
When he got to the house he had kindness in his eyes and that scared me. I remember feeling angry at him, for no reason at all. I know now, in retrospect, that I was just angry at the whole situation, and he just happened to be involved in it. He told me that things weren’t looking good but anything was possible. That made me even more mad. Because even though I was numb and fighting with my thoughts, I knew Bryant wasn’t coming home. I knew that it was bad, and I knew it was really bad. So, I felt almost insulted he would lie to my face. I just held in the tears and nodded, handing him Bert, trying to keep my thoughts to myself.
I finally walked down the stairs after he left, and it was eerily quiet. There was some mud on the floor from the shoes of the EMTs, and some melted snow. I walked into his room and saw miscellaneous things knocked to the floor and things thrown about in disarray. I sat down on Bryant’s bed and let out a sigh. My entire body felt numb and I could feel my heart beating slowly and rhythmically in my chest. Reality was sinking in, I had left the sanctuary of the upstairs where I could at least try and pretend all of this wasn’t real. Down here reality came crashing down like thunder and lightning, and a steady rain began to fall around me as I sat in the silence.
It wasn’t until about an hour later that it was confirmed that he had passed. It was almost immediate that the tears finally took over. I had held them in in front of my siblings, the chief, and my mother. I closed the bathroom door behind me and fell apart, letting the emotions completely overwhelm me. At this point it was just a seemingly never ending flow of pain and sorrow. He was really gone. Life had officially fallen apart, and would never be the same again.
Relatives began calling and I’d have to fight through the pain in order to speak and tell them the awful, heart breaking, agonizing truth. The rest of the day went by like a blur. Not necessarily fast, not slow, more like it was draped with a foggy haze. My memories from that point on are blurred, I don’t remember if I took a shower, took a nap, cried some more, or just sat with a blank stare on my face and in my mind. I do remember my brother’s nurse of ten years coming over to help out. My mother was upstairs in bed, in what I remember as a coma like state. My father was walking around like a zombie, responding if spoken to, but silent otherwise. My two younger siblings were quiet, but otherwise not as affected as the rest of us. Again, I envied them, I wished my mind could wander to other things besides the past and the painful, aching present.
I spent a lot of time after that day reliving it. To this day, as I said, I can recall being awakened by the screams from my parents, hearing them run down the stairs, seeing the shock and confusion in my siblings’ faces as I felt my entire world fall apart. I remember feeling like I was in a nightmare, and how much I wanted it to end. I wanted to be able to wake up and think to myself, thank God that wasn’t real. That feeling went on for weeks, and would make occasional appearances months after.
It’s been almost two years since then, and I still have days where I stop myself and just think about Bryant. Small things. I think about watching movies with him, I think about helping him reposition himself in bed, I think about walking by his room and hearing him turn the volume up high on his TV, I think about rushing into the room at 7 to put on Wheel of Fortune for him, and more than anything I think about how all of that was taken from my within the blink of an eye.
I don’t dwell on the day it happened as much anymore, more than anything I now try and model myself after my brother. Like I said, not because he was disabled, but because of the internal light that constantly shone from within him. He was a ray of sunshine on a cloudy day, a refreshing breeze on a scorching summer day, and he was that first snowfall in December. I miss him with all of my heart, but can now move forward and not dwell on the painful gap left in my heart when he left. Because now I realize he never really did leave, maybe physically, but he’s around me everyday. He’s in my mother, my father, my sister and my brother. He’s in all of the people whose lives he touched, and more than anything he’s in me. He keeps me going and will forever be my guiding light.
