The narration of disabily: when the story goes on without us

Sometimes the story carries on without us. That’s what happened to me for much of the day. After waking and spending an hour reading the Blue Cross BC 2007 annual report; finding the name and direct number of the senior vice president of Human Resources at Blue Cross, and calling her to discuss possible training issues in the call center. I later received a call from a manager of claims and service, Melanie, who was the opposite of everything I expected; she did not say, “company policy” or “not possible” a dozen times but rather thinks like, “We have failed in our service of your needs and need to expedite this claim.” Wha? Oh darn, now my righteous anger has nowhere to go.

I explained my emotional situation and some of the wording of the forms and discussed the medical needs behind the claim as well as emphasized that prior to this our dealing with Blue Cross had been positive. Melanie (who DOES have a last name and gave it to me), said she is going to deal with my supplier and call me on a daily basis to let me know the progress. Huzzah!

I also asked her to not be punitive to the people from the call center who had obviously little options and who suffered what I phrased a “lapse in adequate training.” And she agreed it was a good opportunity as an example for training. I don’t know if you have every seen me on a roll as a “bullshit detector” but when Linda came out telling me about the two hours conversation with Blue Cross I went on full mode, and to be honest, you really don’t want to be on the end of that. I apologized to both Melanie AND to the vice president for the concentration camp comment but pointed out that probably the response that Pacific Blue Cross DID NOT want coming from customer service reps was, “Yup, I’m just like that, I’m following orders!”

I actually had to end the call early with Melanie because I was unable to breathe and looked down and saw that not my finger nails but parts of my fingers were blue. I tried to make it to the door and the oxygen but only got about four feet. After several minutes I was able to reach the dropped portable phone and call Linda. She could understand me enough to leave work and come home. She found me and put on the oxygen, then my home care came. After about an hour I was strong enough to be moved to The Chair. Linda left and my caregiver stayed. Thirty minutes later I had some sort of seizure which paralyzed my right side and turned it kind of purple. Here is a picture of my hand. It also made it impossible to speak and for a while my face writhed on the right side before it ended up in dropsy.

My caregiver stayed with me an hour, giving me liquids by straw and interpreting my small left hand signals. And then she left and I was stuck there in the chair until Linda came home. I know that for many people this is how things go, but it was a first for me, to have almost no use of the left arm and none of the right. I just had my body and head supported by the chair as I stared at what I was pointed toward, a one foot by two foot patch of sky. It was raining.

I think this is where I am suppose to have all these profound thoughts while in a body that is unresponsive; do chess games or think about cooking recipes. Sorry, not that kind of person: mostly my thought was, “wow, this REALLY sucks” and “I hope a bird accidentally flies into my window so I have something new to stare at.” The left hand came back as well as part of my neck which meant I could sent some emails letter by letter and watch some Law and Order. Also, since I left the camera near the computer I used to take a picture of my face, which has a wee bit of dropsy. PLEASE, don’t use THIS pic of me as your screen saver. I took a picture of my right arm since it was a couple hours and the words, “Blood sausage” kept coming to mind when I looked at it.
And that was about it. Linda came home and manipulated me into a wheelchair and into bed and I slept and now though I don’t smile EXACTLY even, I have more use of both hands. So, for another day, I escape (meaning that could be how I am...from now on, but it isn't). I thought it important to write about this because this is my life: 10K on Sunday, housebound in pain on Monday/Tuesday, off to fight the establishment and bricklayers on Thursday and spend an hour staring at our thread count and then another hour or two at what was a pretty unremarkable piece of sky. And yeah, tomorrow, if I can hold a racket, I will probably be off to play badminton. So if you think I am wheeling from one adventure to another, you would be right, it is just some of the adventure is of the mundane variety (breathing is always high up there).

Between the pain of last night, when my blood pressure was 167/149, and today when the caregiver held my head and torso until the synthetic opium kicked in as I struggled to suck in each breath, yeah, I thought, “Is this what I am hanging on for?” Not that moment of extreme pain and darkness I get where I think, “well, maybe this is it.” But that other thought over dozens of minutes, when the question of “Why??” seems high.

Three days ago, full of fire, finished a 10K, people giving me congrats, I was feeling like, “Why shouldn’t I live at least two more years. I don't see why not?”

This afternoon, after only 18 hours of pain exquisite, after waking up at 6:30 so hot that it took four ice packs to stop the moaning pain another view pops up. A doctors appointment with more parts of me “officially” failing and no offered solution and I wonder HOW, if this is what a few degrees warmer does to me how I will survive summer. I don’t have perspective, I am exhausted, burnt out and in pain. My caregiver found me on the floor and kept saying, “What is it you want honey?” Linda told her, “She’s saying, she “won” not “want”.” (I had beaten Blue Cross, but at what cost?) Of course the calls kept coming; at 4:30 Linda picked up the phone and said, “Well, I COULD put her (me) on the phone with you but you won’t be able to understand anything she tries to say.”

Anyway, I am sure that great things happened, and people went into gardens and into town and lived full lives. Today, that story passed me by. It was just heartbeats, breathing and getting from floor to chair to bed and back to chair. Surely that is some sort of narration of disability.