It has been months since I've been motivated and/or had the extra energy to post another blog. Lots of great intentions and early morning thoughts but little actually ability to sit down & type.
Until yesterday.
Yesterday, my Doctor casually threw out the phrase I knew I wanted to hear but thought would be a long way off: "Your Wegener's is clinically in remission." He seemed so blase about it that I thought perhaps my desire to jump up, screaming "Woo hoo!" and high-fiving everyone in the waiting room might be an over-reaction. So, I just answered "Well, OK then" as he continued "Now, about your bone marrow . . . "
As I noted on Twitter: the Doctor giveth and the Doctor taketh away.
Friday, June 3, 2011
Thursday, March 10, 2011
Life before and after
My many pre-sunrise ponderings have led me to begin this blog, which I concede may be more for me than for anyone who reads it -- although I hope that as I become more skilled at this, even that direction will change. The title is my attempt at a play on the musical term that is my name as well as a direction for these posts. That being said . . .
I have come to the observation that life is a series of "before and after" events and that we are shaped by each of these as we pass through it to a new reality. For example, life before and after graduation, before and after marriage, children, the death of a family member, a crisis in faith, a world-changing moment. Each of these changes us and moves us from where we had been to a new place mentally, a different place where we we are called upon to use whatever skills we have developed in life so far in order to be successful or cope or just move forward to the next "before and after" event. Each of these moments adds to our ability to address the next one: the cumulative effect of our experiences gives us increasingly complex tools with which to deal with the next "before and after" that comes our way. A sort of "Tried that before, it didn't work so well. Maybe choose this response instead this time" mental discussion. Sometimes, we consciously perform this mental decision making, especially if one is introspective in general. Often, however, I believe it comes under the "What's my gut instinct?" category. Intuition may be nothing more than responding to one's experiences of "before and after. " In my life, I generally have been comfortable with these moments, recognizing that I thrive on change and even chaos and (sometimes unwisely) rushing forward to meet it or even create it.
But not this time. This "before and after" medical diagnosis moment has me by the throat like a pissed-off pit bull and is shaking the bejeezus out of me in a very big way. I keep thinking I should be able to fall back on the strategies and responses that have brought me to this point in my life but each time I try that, it's a fairly decent bet that I'm gonna end up flat on my ass, literally exhausted and wondering "Who the hell IS this person?" I'm told that the person I was before Thanksgiving Eve and the Doctor's pronouncement no longer exists, that she is now part of who I was and not so much part of who I am now. There's also the implication that perhaps I should accept this new version of me and get on with things.
But I'm not a fan of this person and I'm battling her daily. It's not as if I willingly changed who I am in order to be her; it's not as if I had a say in the matter. In point of fact. I intensely dislike her and want her to go sit in the corner of the room and leave me the hell alone. But each day, she gains a bit more control over my life, sapping my energy, pushing me into moments of despair and frustration, commandeering my calendar with blood work and CT scans and doctor offices, moments of weeping and vulnerability that previously had no place in my life. She is relentless in her reminders that "You're not who you were anymore, sweetie" and exaults in her position of primacy over me. She is at once stronger than I am -- and weaker.
And, as I say, I intensely dislike her. (A sidebar here: we taught our daughters that "hate" is a very strong word and shouldn't be used lightly, if at all. We suggested the phrase "intensely dislike" as an acceptable alternative. But I concede I am beginning to hate her -- with a passion.)
My competitive nature still firmly intact, I daily challenge this new person who co-habits my life. On my good days, she retreats and I can remember what my life was life before, if only for the day. On good days, I can function physically, feel upbeat emotionally and literally thank my God for an amazing day! On the not-so-good days, she brings all her forces to play and I can't even recall what it was like to not have this constant sound ringing in my damaged ears or hear my own breaths, wheezing in my embattled lung. I resent each glass of water that I have to drink in order to keep my kidneys at their 30% level of functioning. My desire to participate in the world is reduced to a small window of going to work and then collapsing at home, letting Drew handle my world, our world, until the next morning. The sofa and quilt become my default moment.
And yet. . . and yet. Perhaps it is the person I have been to this point who keeps me moving forward and not conceding every day to this new reality. Perhaps the person who got me this far can see me through the next several months of this toxic treatment into a new reality, one that will be my world for the next several years. Perhaps I have merely had to go into my own form of remission so that my body can be brought back into synch, my systems re-set and my disease brought into whatever control will be possible for the rest of my life.
Perhaps I am stronger than I ever thought possible and it is this very strength that keeps me battling to re-gain control of my life, to seize it from the medical condition I have become and once again return to being the person who firmly believes that red is as much a state of mind as a hair color. Perhaps my life experiences, my own "before and after" moments have all led to this moment, have all given me the ability to fall down now and again but refuse to stay down.
I can't allow this new person to become the new me because I don't like her one bit. But the old me will have to be wiser about how and when to battle so that I can get my life back.
I have come to the observation that life is a series of "before and after" events and that we are shaped by each of these as we pass through it to a new reality. For example, life before and after graduation, before and after marriage, children, the death of a family member, a crisis in faith, a world-changing moment. Each of these changes us and moves us from where we had been to a new place mentally, a different place where we we are called upon to use whatever skills we have developed in life so far in order to be successful or cope or just move forward to the next "before and after" event. Each of these moments adds to our ability to address the next one: the cumulative effect of our experiences gives us increasingly complex tools with which to deal with the next "before and after" that comes our way. A sort of "Tried that before, it didn't work so well. Maybe choose this response instead this time" mental discussion. Sometimes, we consciously perform this mental decision making, especially if one is introspective in general. Often, however, I believe it comes under the "What's my gut instinct?" category. Intuition may be nothing more than responding to one's experiences of "before and after. " In my life, I generally have been comfortable with these moments, recognizing that I thrive on change and even chaos and (sometimes unwisely) rushing forward to meet it or even create it.
But not this time. This "before and after" medical diagnosis moment has me by the throat like a pissed-off pit bull and is shaking the bejeezus out of me in a very big way. I keep thinking I should be able to fall back on the strategies and responses that have brought me to this point in my life but each time I try that, it's a fairly decent bet that I'm gonna end up flat on my ass, literally exhausted and wondering "Who the hell IS this person?" I'm told that the person I was before Thanksgiving Eve and the Doctor's pronouncement no longer exists, that she is now part of who I was and not so much part of who I am now. There's also the implication that perhaps I should accept this new version of me and get on with things.
But I'm not a fan of this person and I'm battling her daily. It's not as if I willingly changed who I am in order to be her; it's not as if I had a say in the matter. In point of fact. I intensely dislike her and want her to go sit in the corner of the room and leave me the hell alone. But each day, she gains a bit more control over my life, sapping my energy, pushing me into moments of despair and frustration, commandeering my calendar with blood work and CT scans and doctor offices, moments of weeping and vulnerability that previously had no place in my life. She is relentless in her reminders that "You're not who you were anymore, sweetie" and exaults in her position of primacy over me. She is at once stronger than I am -- and weaker.
And, as I say, I intensely dislike her. (A sidebar here: we taught our daughters that "hate" is a very strong word and shouldn't be used lightly, if at all. We suggested the phrase "intensely dislike" as an acceptable alternative. But I concede I am beginning to hate her -- with a passion.)
My competitive nature still firmly intact, I daily challenge this new person who co-habits my life. On my good days, she retreats and I can remember what my life was life before, if only for the day. On good days, I can function physically, feel upbeat emotionally and literally thank my God for an amazing day! On the not-so-good days, she brings all her forces to play and I can't even recall what it was like to not have this constant sound ringing in my damaged ears or hear my own breaths, wheezing in my embattled lung. I resent each glass of water that I have to drink in order to keep my kidneys at their 30% level of functioning. My desire to participate in the world is reduced to a small window of going to work and then collapsing at home, letting Drew handle my world, our world, until the next morning. The sofa and quilt become my default moment.
And yet. . . and yet. Perhaps it is the person I have been to this point who keeps me moving forward and not conceding every day to this new reality. Perhaps the person who got me this far can see me through the next several months of this toxic treatment into a new reality, one that will be my world for the next several years. Perhaps I have merely had to go into my own form of remission so that my body can be brought back into synch, my systems re-set and my disease brought into whatever control will be possible for the rest of my life.
Perhaps I am stronger than I ever thought possible and it is this very strength that keeps me battling to re-gain control of my life, to seize it from the medical condition I have become and once again return to being the person who firmly believes that red is as much a state of mind as a hair color. Perhaps my life experiences, my own "before and after" moments have all led to this moment, have all given me the ability to fall down now and again but refuse to stay down.
I can't allow this new person to become the new me because I don't like her one bit. But the old me will have to be wiser about how and when to battle so that I can get my life back.
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