Tuesday
El Milagro: It’s the 6th anniversary of 9/11 and I’m here in my chair, hooked up, and listening to NPR All Things Considered in my earphones. Gladys hooked me up and took about 6 test tubes of blood for my various blood work tests. There are a number of stories about 9/11 and they conclude with “In all, 2,974 victims were killed by the Sept. 11 attacks: 2,750 connected to the World Trade Center, 40 in Pennsylvania and 184 at the Pentagon.” 9/11 is one of those dates that will live on in infamy, like Pearl Harbor. We find ourselves saying things like, “I remember what I was doing when I heard the reports” or, “I was watching ___ when they broke into my TV show.” On that day I was waiting for Kim to pick me up and take us to Lake Travis to facilitate an all-day teambuilding retreat for the staff of LifeWorks. We went out and pulled the group together and shared with them what we knew about the attacks (since they were without media at the lake) and then cancelled the rest of the day, joining with their bosses to say, “Go home and be with your families”. Seems like a long time ago now.
Sherri the Social Worker pops in and out of my 9/11 musings to get information on my DC trip so she can arrange for my dialysis up there. Setting up out-of-town dialysis is reminiscent of being in the military and transferring to a new base (I hallucinate). Around here they call today Patriot Day and they have a big American flag hanging from the ceiling and little American flags taped to many of the dialysis machines. Ron the Nurse cheerily comes around passing out sandwich bags of popcorn and strawberry or grape juice boxes. As I watch him I notice that most patients are delighted to get these little “perks” and that revs up Ron’s animation.
During the past week I’ve been out in cyber-space exploring other PKD people’s blogs, since we are all listed on the PKD website. As I surf around checking out people’s blogs, I notice that some of them report the pain and suffering related to our condition: how PKD leaps into our lives unexpectedly and then totally overwhelms us and scares us. My own surprise at finding myself with PKD is ancient history now, it seems; and I can hardly remember the shock Lizzie and I had when Dr. Moritz was explaining, “You got a tiger by the tail, boy!”. So, tonight I’m considering the more ominous aspects related to having a chronic condition like PKD. My worry, when I allow it to surface in my brain, is that we never really know what is happening. In a world where knowledge is power, we can never have enough knowledge to set aside our worries about our condition. Since finding out I have PKD ten years ago, there have been numerous times that I have had aches, pains, symptoms, and manifestations that I have to connect to the condition, but who knows if they really are. As with any kidney condition the connection to blood pressure, thyroid, digestion, and basically all other mechanisms of the human body necessitate concern whenever anything feels funny or seems to be going wrong.
And boy, I can create maladies to worry about! In the area of hallucinating that a twitch or ache in my body is a sign of impending doom, I am very creative. The problem is that there isn’t enough knowledge to allay my worries: there is only enough knowledge to amplify my doomsday despair.
Notice: Gross Bodily Function Descriptions Ahead ~ For example, a few nights ago I awoke at 1:30 am with a need to poop. Alright; that happens when one is on binders. As you might suspect them binders bind with phosphorous and usher it right down through the system and out the pooper (and we take them binders at EVERY meal). So, I poop a very loose, runny poop and then start worrying about that. Then I notice I have an uneasy stomach. I immediately put myself to the task of figuring out what is the matter, interrogating myself with my harsh parent voice a “Did I ingest too much potassium or phosphorous? Why is my poop so runny? Were my binders sitting next to my stomach wall? Did I take the binders too late after eating? Am I becoming too anxious? Ugh, I feel sick. I should go back to bed and lie real still and put this crap outa my mind…”
So, I lie back down and doze for about an hour according to the luminous clock radio. Then I wake up and have a need to rush back into the bathroom to poop some more. Same story; same ruminations and my stomach feels even worse. I go downstairs and throw up in the downstairs toilet (so Liz doesn’t hear me heaving). It is horrible and tastes like metallic sour bile. "Yuk!" And my self talk continues: “What is going on? Is this
because of those two chiles I put on my chicken last night? Do I have a bug? Am I worrying myself sick? Is this some sort of sign the dialysis isn’t working right?" I heave a few more times until I can tell there is nothing else down there to come up. And I wash my mouth out in the kitchen sink and drink a few gulps of lemon lime soda to further wash away the taste. I sit on the sofa for a few minutes, looking around the quiet light of the night time in my living room. The moonlight comes in through the back windows and everything seems still and comfy and I begin to breathe more peacefully. Back to bed again. I wake up again and hit the toilet a few more times that night; at 4:30 and about 6. And then I wake up finally at 7:15 and actually feel okay and ready for a new day.So, the point of this self diatribe is that when we worry about our disease and the various concomitant physical afflictions, we can slip into despair or we can see our worry as keeping close watch on the challenge. Don Juan used to say, "only as a spiritual warrior can one withstand the path of knowledge. A warrior cannot complain or regret anything." When situations like the above happen, we are many times are afraid to ask the doctor about them or embarrassed. And usually, in my case, I think it is something I did wrong or it’s my fault I feel such-and-such. So I am hesitant to talk to anyone about it, since I am sure they’ll take pity on me or say they don’t know what it means (have no answers doctor), or worse yet, try to further constrict my life or give me more drugs. So, even though there are these physical things going on once in awhile, we must take them as our challenge to survive and learn from; and we can hope to move on to a more comfortable place real soon.
My recommendation for my brothers and sisters who are in the PKD boat or the dialysis boat is “...live your life fully! Accept the pain and fear and worry because it too is part of living. Without feeli
ng the pain you cannot really appreciate the joy of living.” Remember what Jack Kornfield says, "The great forces of ...fear and ignorance that we encounter can be met by the equally great courage of our heart. Such strength of heart comes from knowing that the pain that we each must bear is part of the greater pain shared by all that lives. It is not just 'our' pain but the pain, and realizing this awakens our universal compassion."*Nam-Myoho-Renge-Kyo
Notes: In at 76.9 and out at 72.5 kgs.
* Kornfield, J. (1993) A path with heart: A guide through the perils and promises of spiritual life. New York: Bantam Books, p. 74
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