It’s a world just a handful of us exist in, and few outsiders understand. A world so miniscule even grandparents or uncles do not fully grasp what goes on under our roof. A world so complicated that I will never entirely understand what my parents go through or what they feel, and they will never entirely understand what I go through or what I feel. I’m just here to share my perspective of the world I live in.
Despite the 6-year age gap between my older sister and I, I have embodied the “big sister” persona in our family. I don’t recall exactly when I really made the transformation from “little sis” to “big sis” but it was probably sometime in my elementary school days, when my academics, my emotions, and even my ability to do the tasks that have become second nature to us all (such tying shoes) greatly surpassed those of my sister. As each year passed by, and more and more milestones were piling up for my sister to complete, I began to recognize that this life, this family, this situation meant our lives would be shifted, and focused in on my sister.
Alternating Hemiplegia of Childhood, or AHC for short is a rare neurological disorder that causes my sister to have episodes (which we call “spells”) of paralysis. There is no warning, no flashing red light of danger, and no siren to give us clue as to when this unwelcomed disorder creeps up and traps her inside her own body. There is no timer, no countdown, and no hourglass to inform us when it will end, when we can hit the “play” button on our lives again. There are triggers, and sparks that expedite her spells. The beach is a trigger. Water is a trigger. Excitement is a trigger. Loud noise is a trigger.
Until I left for college, our family operated as one whole unit, with my sister’s disability as the controller. It controls my mom, who sacrificed her passion and her work to care for my sister 24/7. It controls my dad, who works hours longer than anyone ever should to provide for us all. And it controls me, in ways I didn’t even realize until recently, but mainly it controls me emotionally. When you’re 6 years younger than your sibling, and suddenly the older sibling role is thrown at you, you have no choice but to face it. No choice but to mature at a faster pace than your peers around you are. I was exposed to different hospitals, doctors, neurologists, specialists, prescriptions, and ambulances from the time I was 4. I could describe my sister’s medical condition in detail by the age of 10, and better than the majority of neurologists could, considering almost all of the neurologists my sister has been to, have never even heard of AHC. We jumped from hospitals to doctor’s offices to specialists with a typed letter in hand- informing them of what they were supposed to help fix.
Not only mentally did I grow up faster in this situation, but emotionally as well. Emotions I didn’t know how to process when I was so young, emotions that I thought weren’t okay for me to feel. How could I think such negative things of my own sister, when my life is breeze compared to hers? If my sister would sing in public (her biggest passion) I would feel a twinge of embarrassment begin in the pit of my stomach, and snap at her to shut up. Thoughts of “Did I really just say that?” “She can’t help herself Ashley.” “How could you do that to her?” rushed into my head, and my face grew hot and deep red. Then I’d apologize immediately and tell her to belt her heart out. If she would go into a spell in public, neck locked up, head shaking, moaning in pain, I’d be torn. My emotions tended to always split halfway here. There were times when I would act as if I didn’t know my family, and not help my sister in her time of need. It was too embarrassing, too stressful, too much attention and I just wanted us to blend in. Then, I’d do a complete 180, and I’d be overly helpful, and maybe too aggressive towards strangers. I’d glare at them. I’d make snide remarks under my breath about how adults should teach their kids not to stare. I’ve even asked people if they wouldn’t mind me staring at them with a disgusted smirk and gaping mouth. You can imagine their reactions to my comments were less than enthusiastic, yet they seemed perfectly fine doing all of that to my sister.
Over the past 5 years, I’ve been working on not letting this control my emotions so intensely. There are times when yes, I’m still embarrassed by my sister. There are times when I get angry and frustrated with her. But don’t we all go through ups and downs with our siblings, regardless of their physical and mental state? Don’t all sisters fight? Don’t all sisters want the attention to be on them and NOT their sister? (We are girls, after all). It’s been a lengthy and tough road to get where I am today. Where I realize it’s more than okay for me to feel everything I’m feeling. But as the “other sibling” in these special types of families, people who don’t understand, people who are outsiders will tell you that your feelings don’t matter, only your siblings do. And that it’s wrong for you to think or feel anything but positive things about your sibling and your situation. They will tell you that the focus isn’t on you. They will tell you that your sibling is more important. Trust me when I say we (the ones with disabled siblings) fully understand that there are certain medical, whether it be mental or physical, needs that our siblings have, and we do not. But needs don’t value our importance as humans, as daughters, as siblings.
And to my loving sister, thank you for constantly being the biggest supporter in my life. You have never once stopped encouraging me to follow my dreams of pursuing theatre and writing. You’ve been cheering me on since day one, and I wouldn’t want anyone else by my side in this crazy journey we call life. Keep singing, Britt. Sing so the whole world can hear your voice.