I really wanted steak and eggs, but I just couldn't see paying $22 for breakfast, even if I had had that much cash on me. So got a burger to try to boost my red blood cells and help my marrow recover in time for another round of chemo. I did the math recently, and I have, on a day-to-day basis, when I am doing well and don't need any transfusions, about half the blood of the average person riding the train next to me. Two-thirds as much if they are on the low-side of normal and I am on the higher side of anemic. Maybe only a quarter as much if the person beside me happens to be a pregnant woman.
So if I choose to take the elevator up from the subway platform rather than jog up three flights of stairs when I get home from at the end of a long day, don't assume that I am being lazy. And when I ask to slow down from my usual New York trot, it's not because I don't want to exercise--it is more likely because my heart is pounding after half a block, working triple time to circulate my diminished reserves of hemoglobin to my tired muscles. And that hesitation before I agree to check out a new restaurant in the next neighborhood over, it's not that I have a craving for the cuisine around the corner, it's just that I am calculating whether or not I can walk that far without getting nauseous. And if I accidentally glare at you on the train, or refuse to give up my seat just behind the bus driver when some senior citizen gets on, it's not that I'm cranky or insensitive; it's just that I am disabled, and this city is exhausting enough for the able-bodied.
But I won't tell you any of this unless I have to. Unless you notice that I am out of breath when I walk into the office, and you happen to comment on it. But even then I won't really explain. I won't give you the science lesson behind why my youthfully robust facade is not as strong as it may appear. Not as strong as it ought to be. And I certainly won't open up about how draining it is to really need to sit on the subway, but be too embarrassed to ask, and unreasonably angry when no one assumes that the patchy hair on my near-bald head is not the latest counter-culture trend but the results of chemotherapy, the give-away that ought to at least earn me a seat on the train. I won't tell you any of that because I don't want to admit that I am disabled, weak. I don't want to believe that at all, but it keeps presenting itself as a reality. And I do resent it when you don't recognize it, even though I don't want to be seen as a sick person and I will resent it even more if it is pointed out without amount of grace and understanding. I'd prefer it was treated as one more practical consideration when making plans, rather than an obstacle for me or anyone else.
It is so hard to be physically weak when my will is so strong. So I remind myself that I am lucky--that I am so much stronger than I was three months ago, and that I am still, in spite of everything, living the life that I want to be living, maybe not in all the details, but on the whole. The bigger picture is painted in the colors of my choosing. But then again, to butcher another cliche, isn't the details where the devil lives?
On Friday I had lunch with my boss, who asking about my health. I appreciated the gesture, even after he admitted that he had an ulterior motive: he needs more organizers and he wants to know if I can take on an organizing assignment. My heart jumped and I said yes, but then my brain won back control of my tongue and told him I'd have to think about it. So I ate a burger for brunch and bought beets for dinner, trying to eat my way to more blood and better energy. I would like so much to be organizing again. But he is also asking me when I feel like I just started liking my current assignment in the office--we just met a deadline that no one, including me, thought we could meet with as much success as we did, which gives me great hope for the possibility of really improving the functionality of our office. But it won't be possible if I don't keep putting an intense amount of energy and focus into it, and I don't think I can do that and add organizing to my schedule. I already spend at least 6 hours out of my work week at the hospital, or traveling to and from it. I cannot reliably predict when I will need a transfusion, which means the whole day is gone and I am passed out asleep from the benedryl, so I am no good for even checking in on the phone, which is a level of unreliability that is acceptable for over-seeing clerical staff, but not for organizing. And sitting behind a computer is tiring enough! Could I really handle running around the city visiting workers at home, or walking through hot commercial kitchens and trying not to slip on the wet scraps of food by the dish machine?
I don't know. But I would like to.