No one would choose a life like this.
The words echo in my head. I repeat them to my husband. I feel defeated, sad, hopeless, misunderstood and lost after yet another denial of my disability by people who have never met me. I feel devalued, like I am being called a liar. In this moment, it doesn’t matter that my double and triple board certified doctors support me- I feel small and vulnerable.
No one would choose a life like this.
Giving up an extremely satisfying career of helping others, making actual money, giving back, playing with kids for a living, deeply connecting with people daily, variety, taking my therapy dogs to work. No one would give that up for days spent alone, watching television, days spent not speaking to anyone, sleeping 12 hours a day, days spent in unrelenting pain- stuck between fatigue from pain and fatigue from drugs and not being sure which is which.
No one would choose a life like this. But why am I so sad?
At 2am the penny drops.
the hospital. always always the hospital. cancer. cancer treatment. 9 years old. hearing a child screaming at night. nurses talk outside my room. Years before parents are allowed to stay overnight with their kids. R was dying. At 14 she was vomiting feces, she was menstruating. The nurses murmuring about cleaning her up. About how the doctors have let her go too far. I ask about her. They realize I am awake. They try to explain the doctors mean well but that the chemo is making R sick and the doctors are trying so hard, but R is dying.
R is dying a horrible, painful, screaming, animal death that I want no part of. But my 9 year old brain goes click click click. If this happens to R, and no parents are allowed, this could happen to me. And all of a sudden my greatest childhood fear- air in my IV line because -as a nurse told me- an inch could stop your heart, starts to look like my last hope. I know there are syringes in the drawer next to my bed. But I cannot reach them, the bars on the bed are up and there is an IV in my foot that is painful. I will myself to die- that night and many nights after. But I keep waking up the next morning.
I didn’t ask for a life like that. As an adult I have a life I did not ask for and have not always wanted. It is a curious thing to put a life together, knowing that ones life matters to others more than it matters to oneself. I was nearly 40 before my life mattered to me. And then I became disabled. Do we call this irony?
What is the blessing in this? How can I be grateful for even this? I will say the last time that memory got triggered I found myself suicidal and googling how to use a handgun (low point) and after the last therapy round, I feel like I have been given the keys to a mental Ferrari. No suicidal. No weird google searches. Just a night of sadness. I can do this. My life does not have to be important to anyone else, it is important to me. I trust my heart and will, and the people that really know me do also.
L
Lisa Riggs