The days I hate the most are when I hear my sister, Joan, cry from her room. Depending on how urgently she needs something, or how much pain she is in, her cries range from whimpers to loud groans. It's the only way she can communicate, having lost her speech to encephalitis (so I've been told) back when she was about nine or ten years old.
What bothers me about those days is the feeling of helplessness. It's been a long and frustrating path of deterioration for her: she lost her ability to walk about seven years back, and her ability to swallow food two years back (this event, in particular, I can write volumes on... when I'm ready). I spent most of my adolescence caring for her. Both of my parents worked at the time. When I came home from school, I waited for her bus; led her to the bathroom, back when she could walk; fed her, back when she could eat; and sat with her in front of the TV. Then I stopped, either because I was too busy or I was tired of the responsibility. Between then and now, I've forgotten how to care for her. It wouldn't matter anyway; given her current state, I wouldn't know what to do for her.
Guilt sets in too. I made the decision to stop, or so I remember. If I was busy, then I stopped because I preferred my own activities over my sister. If I was sick of caring for her, then I placed my need to stop over her needs. Either way, the guilt is persistent and hard to shake off. And it gets worse as she regresses.
What used to keep me sane when I heard or saw Joan was a sense of entitlement. I traded in most of my teen years, so I saw it fair to break away from my responsibilities to her. I earned my right to be guilt-free, I thought. I learned since that this freedom isn't attained that easily or, more likely, at all. I've been sad since she became ill, and will probably be sad even after she's gone. So I live, knowing that I don't have a choice. To move forward knowing that I have little control is the closest I can ever get to freedom, or sanity.
I hope Joan knows this too. There are only a few things she concerns herself with: she's in pain and she groans to let us know; though her strength has faded a bit, she still likes to smile and laugh (especially when she watches "I Love Lucy"); and she continues to see each day, as long as she's here. At least, I hope so. If she worries about her condition, I don't know if I can deal with it.
[Update]
Now with audio!
