Terminally Ill

I knew I was going to lose her. I wasn’t ready. Far from it. Addie’s diagnosis broke me in ways I knew nobody would understand. The genetic disorder she’d been diagnosed with is one that Medical Professionals only see in their textbooks. Something they never see in their career. A genetic disease affecting the entire body in some way making it hard to diagnose. With no cure. Much like other rare genetic diseases. MELAS took our mother fifteen years ago. It took Addie getting sick to connect the dots back to mom. She had a Brain Stem Stroke. Brain dead at 43. I was barely 13. Addie was barely 8. I’ve struggled with life since then. I’ve been struggling more since her diagnosis. Addie wasn’t eligible for Disability or Medicaid for some reason. She wasn’t sick enough apparently. Despite the Terminally Ill diagnosis. It didn’t make sense. It was the government not seeing what the Doctors, myself and dad saw though. They’re all about denying people that need it while those that don’t get it with no problem. 

Ten months had passed since her symptoms started. A mere five months since her diagnosis. I’d been the one that found her. She’d been gone a while by that point. I was bringing some mail she had to her. She’d been bed bound for the last month. A trip to the bathroom being one of the few times she got up. I’d been the person primarily taking care of her. Our dad wasn’t doing much to actually care for her. He’d rather scroll through Social Media. 

He’d been the one taking her to get her hair cut or to the few appointments she had. The Disability Lawyer she’d seen didn’t comprehend that she likely didn’t have two years to wait around for a decision from Disability. She didn’t seem too willing to fight for Addie to get it sooner. He’d seen her rapid decline much like I had. Not like I had. I sobbed next to her lifeless body while he called 911. The EMT’s came what seemed like hours later. It’d only been a few minutes. 

They let me say my goodbyes before leaving the room. I’d called the few people I needed to. Calling out of work for the day being the first call I’d made. I’d not been a Dishwasher for the last two months. I’d kept my distance from everyone. I wasn’t interested in making friends. I’d been betrayed far too much. Jude was the only person I’d become friends with. He’d been the one that’d trained me. We’d gotten close over our very similar backgrounds. We’d been through similar experiences. I’d let them know everything when I started. Part of life being their response. They’d seen how hard it’d been on me. They’d seen me be a little too deep in my thoughts at times. I had seen her having a bad day before leaving for work. I was worried about getting the call while at work. 

I’d planned her funeral. She’d given me some ideas prior to her death. The funeral was something she’d planned it herself. I knew her all too well though. I wanted it to be something special. For her. I knew I needed to get tested. I didn’t know how I was going to do that. I just knew I’d be getting tested. The rest of my relatives in the area didn’t seem to be too interested in that happening. They’d rather sweep it under the rug than deal with it. I needed to be tested. For obvious reasons. I’d found a way and got tested. Her death broke me in ways I knew nobody would understand. I didn’t bother talking about anything after a while. People didn’t understand my level of grieving. That I was grieving differently because of the circumstances of her death. I knew nobody would. Comments made by others surprised me. Their lack of understanding told me everything. I’d felt alone in my grief far more than before as a result. Addie, as usual, had planned ahead. She’d made sure I didn’t feel so alone while grieving her death. She’d, in her own way, helped me grieve her death.