The Life I Have

The doctor looked at my blood counts, looked at me and said: They're all pathological, but you're not in danger. For you, they're not so bad.

For me they're not so bad.

I thought about that on the way from the hospital back to work. I was feeling pretty good, actually. For me, that is. Lots of energy. For me, that is. A lot better than last week, that's for sure. Truth be told, it was really a great day -- for me, that is.

What made it a great day? Well, just that fact that I was up and about was great. Able to go to work. Able to drive to the hospital. Able to feel some life surging through my body. Just to be on my feet and moving, my mind clear, my thoughts positive.

I'd say that's a great day. For me, that is. Even with pathological blood counts.

Then I began to think about that word: pathological. And I felt that thing in my spine happen when I start to get all rebellious, sort of proud and crusty.

Hey, who is he to call my blood pathological?, I thought. That's my blood he's talking about!

And then a certain quiet settled on me. That is my blood he's talking about. It may be pathological to him, but to me, it's the only blood I've got. And I'm pretty happy to have it.

So I decided that words like "pathological" or even "diseased" are just relative. Worse, they are judgmental. And if I take them in, they are even divisive -- they put me at odds with myself. Hey blood, why are you so pathological? If you were better, I'd be better.

But what is my blood, if not me? In fact some might say that my blood is sort of the physical essence of me. So, I'm not turning against my blood. No sir, not me.

Like I said, it's the only blood I've got.

Then I began to think about my disease. About my lumps and bumps. These, too, are me. At least now. I may have had another body sometime in the past, but this is my body now. The only one I've got. The body who is me, now. The one I live in -- lumps, bumps and all -- now.

And, again, I thought about all the labels being attached to my body. The diagnoses. The prognoses. Words like sick and diseased. And, of course, the word some people won't even say. And then there are the great efforts and urgency to change my body, to cure it or improve it.

And while I understood all this from one perspective, from another I began to see that they, too, are all judgments. Comparisons. Rejections of the body that is me, now. Rejections of the only body I have, no matter what kind of body others may have, no matter what kind of body I may have once had.

Now came my life. The life lived in this lumpy body with its pathological blood. No one, I realized, envied my life or considered it normal. No one, that is, but me. Because, you see, it's my life. The only one I have. Now. Normal, for me, that is.

Sure there are lots of down days. Days when I can't get out of bed. Fever, sometimes. Pain. And they come when I least expect them, so I really can't count on anything at all. Days at the doctor's. Days in the hospital. Days of fear and depression. That constant nagging worry that someone with my lumpy body and low blood counts is bound to have.

And then there are lots of good days -- well, good for me, that is. Days when I have energy to get through the daylight hours. When I can get out of bed. Walk. Drive. Relate. Kiss my children. Talk to my wife. Work. Write. Think. Even days when I don't even have to take a nap when I get home from work.

Compared to someone else, I may not have a lot of energy. But for me, it's the only energy I have. And for me, it's not so bad. In fact, for me, these days are great.

And when I mix all these days together -- the good ones and the not so good ones -- they constitute my life. The only life I have, no matter what my life was before or might have been.

So, I reject any judgments about my life. Any pity. Because just as each man has his life, I have my life, and this is it. The one I live. As fully as I can.

But that's where the real challenge comes in. Living it fully. Living my life, just as it is, as fully as I can, now. Not judging my life, trying to make it different. Not spending my time wishing I had different blood, a different body, a different life. Not even spending much time trying to cure and change my blood, my lumps, my cycle of days. Rather, living my life now - not someone else's life or some ideal life - but my life, now, as fully as I can.

And that's not so easy, you see. Staying right here, right now in this body, in this life, is hard. Because when I start to think of my blood as pathological, then I begin to wish it was different -- that I was different. And this wishing becomes a substitute for my living. And when I begin to wish my days were different, that I wasn't in pain or scared or lonely or that I could be the active, dependable, energetic, get-it-done guy I once was, I'm not living my life now, in the moment, in the body I am now. I'm wishing again. I'm living a life that once was or imaging a life that might have been. But, I'm not living. Instead, I'm judging. I'm comparing. I'm imagining. Trying to escape. Pretending there is another life that is mine.

Where have I come to, then? How does one live fully lying flat on his back with not enough blood to keep him going through this day? Never knowing what the next day might bring?

Does the answer lie in resignation? Acceptance? Striving for cure or improvement? Denial? Pressing ever onward with gritted teeth?

Is feeling fear or depression or loneliness then the mark of failure at living fully the life that is now mine? If I succeed in living fully, would I be happy and joyous in spite of everything? Would people marvel at my optimism and courage, despite what they consider to be the tragedy of the state of my life and health?

Would I forgo the desire for cure? Reject all health care in full acceptance of my condition as it is now?

But, you see, these are all beside the point. There is no success or failure. No way to be. Nothing to be different.

There is just my life to live in this body with this blood that is now me. It is living the weakness, the pain, the loneliness, the fear. It is praying with all my might for a cure one day, searching the internet for the latest developments the next, lying in resignation or acceptance or fear or depression or hopelessness on another. It's reveling in the good days, clinging to them when I know I shouldn't, hoping they will last for ever.

It's delighting in my children one day and grieving all that I'm not able to do with them the next, often embarrassed at how much time they see me lying in bed, imagining the dad I'd be if only .

It's sharing as much of myself with my wife as I can, feeling the separation because of what I can't, opening to her and then shutting down, listening to her and then becoming distracted by fear or pain or self involvement. Those cherished moments of feeling understood and being understanding.

It's thinking of life and of death. Having endless hours alone, sometimes in loneliness, sometimes filled with delightful memories or lofty contemplations, sometimes with dread and nightmares, sometimes with revelation and delight.

It's awakening from moments of denial and wishful thinking, of judgment and self condemnation, of hating my lumps and my blood and damning them for the life they cause me. It's awakening from these very thoughts and feelings that I know have taken me from who I am, to who I wish I was, and then once again returning to the who I am now. It's the compassion to allow myself these flights of denial and escape and even self pity and accept that these, too, are part of the life that is now mine.

You see my life is everything that my life is -- this life that is the only one I have -- lived fully, in this and every moment, sometimes without judgment and with compassion and sometimes in full judgment and condemnation, sometimes with joy and happiness and hope, and sometimes in hopelessness and despair.

It is the life I have that when compared to a past life or a life that might have been could be called -- like my blood -- pathological, but for me is the life I wish to embrace and thank G-d for everyday, even on the days I wish it would all simply end.