Perhaps ye dinna ken what it is like to live in a prison of your own making. Where the walls are built of love, and sickness and the threat of death. I do. Although I may not look it, I am an escaped prisoner, with only these brief weeks as my respite. I am a prisoner in my own home and in my own life. I do not flee from an abusive husband or addiction or anything so horribly trite. This doesn’t mean that the prison isn’t as real, or as heartbreaking.
Three years ago I stopped looking toward the future. All hopes and dreams for what lay down the road were simply packed in crates and put in the furthest corner of my mind. They simply sit there gathering dust, untouched, as I am too afraid to even glance in their direction, for fear of losing my nerve for that which must be done. Instead, in those three years I have kept my glance on my feet, watching only that small portion of landscape. Watching as I put one foot in front of the other until it is time to sleep.
I was called home three years ago to care for my family. My mother had been getting increasingly sicker and she hadn’t been approved for disability, so I was needed at home to contribute my paycheck and care for her. I don’t know if I knew what I was giving up when I came. Perhaps it is better I did not; perhaps the choice would have been impossible- between my life, or my mother’s.
Every day of those three years has been worse than the one before it. Every day, the strong woman I knew as the single mother that raised me has slowly slipped away from me, and I have no way to get her back. I think this is the hardest part. Harder than the pain she is in, or the tremors that shake her, or not knowing how long she has. I have had to watch my mother disappear before my very eyes. And I can’t mourn her. I must stay strong for her and Dad. Sometimes, I wonder if this will make it easier when she goes. If her dying will be easier on me because I have mourned her loss every day since I came home. I do not think so, and this makes the pain that much worse.
Actually, what makes it worse are those rare moments of clarity when my mother peeps through the veil of whatever keeps her from us. When she remembers me and is the mother I remember. However, it never lasts. Sometimes it’s a whole afternoon, sometimes only a few minutes and she is back to her word salad where she struggles with simple words and thoughts such as movies, or where she babbles nonsense, or when she accuses me of making things up to make her feel crazy, or when she doesn’t remember something from five minutes ago, or yesterday, or last week.
There is nothing I can do for her except to be there. I suppose it is a penance of sorts, but I cannot think of what I have done. Perhaps it is more like a vigil, simply keeping watch and being there for her if she needs it. This gives me comfort. My sister, who lived much closer than I three years ago refused to give up her life to come care for mom, and I don’t suppose I’ll ever forgive her for that for many reasons.
Because of my mother, I am imprisoned. Imprisoned in a world where every ambulance makes me wonder if something happened while I was at work. Every fire truck makes me fear she finally didn’t wake up when she fell asleep with that lit cigarette. I lean over her in the mornings and wait until I see her chest rise and fall to make sure she’s still alive. I go to work, and I come home. I do not go out because she, unwittingly I’m sure, makes me feel guilty for participating in a world that has left her behind, housebound as she is. I don’t go out because I can’t bear the thought of something happening and me not being there. My world is her, and that is all. There is room for nothing else.
These six weeks are my only refuge. It is when I store up the energy to face the rest of the year. I soak in the quiet, the sense that all the time is my own. I can read with no one to interrupt or question me or need me. It is the only time I am alone, and I am grateful for it. So, if I’m antisocial, don’t take it personally. But with my happiness, there is also fear. Dad doesn’t do well with caring for Mom. In fact, he still mostly denies she’s sick. Every day during the year he comes home from work, goes upstairs and plays Playstation. We do not see him. He doesn’t care for her. Oh, he loves her, but he cannot deal with any of it. I go with her to the doctor and keep track of everything. She says I am her memory. It is almost as if, in the years before I came, he felt as though he had done enough. But he is not my worry. My worry is that the phone will ring, and she will be dead, and I will not have been there.
So my prison is built of love for my mother, hatred of her sickness and fear of her death. The plethora of doctors cannot tell us what exactly she has, so they cannot tell us how much longer all of this will go on. It could be weeks, or months or years. So perhaps it is not so much a prison as it is purgatory. You see, while she lives, she is my life, and there is room for nothing else. This could be my life, for the next ten years, or fifteen, or twenty.
My mother once asked me why I didn’t go out, try to meet someone. I murmured something to placate her. But the real answer is, why bother? This is my life. I am not my sister, I will not leave Mom and Dad to be homeless, which they would be without my paycheck. I will not leave Mom to Dad’s unsteady hands as she slides down the rabbit hole of her sickness.
I seem to vaguely remember dreams I had. Of getting my PhD, of moving to places I had never been, of getting married. Now though, these things exist only as labels to the crates in the corner of my mind. They don’t occupy my thoughts often, there is no time. When I have time, I think of how much I love my mother, and how much I miss her, even though she is not truly gone. And I think of what I will do without her. How will I guide my life if she is not there?
Considering how much I gain with every day I have her, I do not think hopes of the future are a small price to pay. I would continue to pay it forever if it meant I could keep her with me. But I know I can’t. So I will reinforce my prison, with love, and friendship, and time spent together, in the hopes that along with keeping me in, it can perhaps keep death out.