My name is Tamara, and I have a blood cancer, Polycythemia Vera, which means in my bone marrow, the essence of my being, I have a mutation. Like the X-Men, only I have yet to discover my super power.
You see it is freaking rush hour up in here. Too many red blood cells and platelets and not enough neurotransmitters or oxygen, and what this means is I feel like the life and the person I want to be have been hijacked.
It means there will be times when my synapses stare blankly and awkwardly at each other and don’t know what to say. It means that though I may want to be at your party, instead I may be in bed asleep. It means that though I want to work more, I may work less. It means that instead of being proud of my accomplishments, I will be proud to get out of bed and do anything.
No more box jumps or sprints or heavy weights. More walking slowly, napping and staring off into space. It means accepting all that is dying so that my spirit can live.
So if I let you down today, I am sorry. I let myself down too. I will do my best but it may not even be close to enough.
I will tantrum, and I will accept. I will cry and be depressed. I will be happy and joyful.
There may be weeks of more energy and you will think, “she does not seem sick and all.” The thing is we must not be tricked by these times. For just as better is coming, worse will be coming too. This is the way of it.
I wish I could find some beautiful shiny metaphor for this. The truth though is this really does suck. The name of my mutation is Janus Kinase 2. After Janus, the Roman god of beginnings and endings. Who looks both to the past and future. He is the god of doors, passages, transitions.
My name is Tamara, and I am searching for my super power.