|Alanis as God in Dogma|
As I look back at the events and emotional roller coaster of the last few months (complete with Lenten raw cleanse), now that I have the advantage of a few months of distance and perspective, I see that, while I learned –and am still learning— a lot of valuable, practical lessons about dealing with medical billing offices, medical office staff, doctors, nurses, and the Epic Fallibility of Western medicine, mostly the lessons were about myself.
I learned that as I learn to be a Grown Up, finally comfortable with the title and the complete responsibility it demands, and become more independent, strong, articulate and courageous in voicing my opinions, needs, concerns, and, especially, disagreements, I still can be reduced to a frightened heap of questions by the mere mention of the word leukemia. Leukemia became an overwhelmingly real foe when it claimed the life of my friend, colleague and hero, Raquel Ramirez (Google and YouTube her, she’s worth the time), and it is not a presence I want anywhere near my reality again, let alone my children.
I had been handling L2’s recurring high fevers and “tummy aches” with as much grace, courage, patience, and humor as I could muster. Loren and I had learned, 14 years ago when he had CMV (cytomegalovirus), that Western medicine can work very well if you are lucky enough to come down with something predictable, but if your case is rare and you let your doctors have all the control, you will simply be putting your fate in the hands of a bunch of well-meaning, over-prepared yet under-qualified, puzzled people, who will poke and prod you out of concern, helplessness, curiosity, and perhaps even a bit of embarrassment. We have also watched the ups and downs in Loren’s parents’ health and the devastating results of many of the well intentioned treatments to which they were subjected for years. Going into this I knew that we should not “give up our power” to the doctors; I was willing to educate myself, be proactive, and use their expert opinions as another source of information with which to make decisions.
But when I was hit on the face with the snow balls of “leukemia” and “lymphoma”, I was all too willing to give up the responsibility for my daughter’s health and well being because the alternative was too foreign, too unknown. I was also afraid of what the public opinion would be if we did not rush to the ER to start an expensive battery of tests. Would people see us as irresponsible? Would they be right?
While I stayed mostly, calm, cool and collected on the outside, and I tried to appear (mostly to myself) like I was weighing out the options and not rushing into anything, the truth is that I don’t think I would have had the courage or the presence of mind to take another route. If I had been the one facing a serious, life-threatening illness I would have been adamant about exploring all the “alternative” treatments before relinquishing my health to Western medicine, but this was my child, my baby, and her fever was rising, and no amount of Disney movies was distracting her from her pain, and nothing was bringing the color back to her cheeks.
As we learn to go into battle on our own, as adults, away from parental figures and domineering or sheltering partners, we build up an arsenal of coping skills, emotional strength, philosophies, faith, information, spiritual practices and physical disciplines with which to protect ourselves from life’s attacks. But when the enemy took my child hostage, I surrendered my weapons one by one until I found myself 50 feet from my bunker, naked, waving a white flag.
What I have learned is that I still have a long way to go before I can be fully responsible for my children’s well being, and before I can draw in ink the line between taking full responsibility and asking for help. I also learned that, if there is a next time, I will be much more ready to be held accountable –and to hold others accountable for their end of the deal— if I have been doing everything in my power to prevent a next time, either in their bodies or my own.
The last thing I am learning is that I am supposed to be aware, awake, paying attention (!) because there is a bigger picture here that I have not fully grasped and that is changing me, and possibly my path, forever.