17 April 2011

April 14, 2011

Disney has been busy and my first night's internet connection was impossible. So, I have been typing offline and taking pictures.

Time to play catchup!


On the flight to Disney and my conference. We will arrive in the early afternoon and Cheshire will get there tonight. Can’t wait to see her.

Disney travel feeds into my planning compulsion. I’ve always micro-planned vacations, David would have said I over-plan and it was always a bone of contention between us. Still, I claim that we saw more, did more and knew about more when we travelled. Don’t know who was right.

Disney encourages compulsion! On site guests can make meals reservations 180 days before they arrive. Even I am not that compulsive, but . . . given the opportunity, who knows. I did get at least a meal a day reserved almost a month ago. Of course, that means that I had to commit to a park within which we’ll eat. So, I did ask Cheshire about a month ago which park she would want to take Julia to on Friday -- the day that I will be in conference.

And deals expire on certain pre-travel dates and so encourage planning. Having the conference at Disney entitles us to a slight discount on entry tickets -- a deal that expires the day before travel. When I bought ticket, I had to designate where I would pick them up and when. Again, more of a plan put in place.

Hopefully, we get a pass to avoid some of the long lines. It is offered to parties that include a disabled person. I have a note from our doc, and Julia should qualify. I really don’t know how much time this will save, but more important, we can usually wait on one long line a day. So, either we will zip from ride to show to ride without lines, or we will choose a very few long line rides or shows and do that for a day and spend the rest of the time at the pools or walking around.

When David and I went to Disney before Cheshire was born -- as part of a vacation to visit Dad and Claire in Deerfield Beach -- we reserved a hotel and check out park tickets, and we may have arrived early at one or more of the parks, but that was the only planning we did. We wandered around rather aimlessly, skipping long lines and going back to some of those ride or shows later. And I think, we saw most of the attractions. “They” say that doesn’t happen anymore.

This time, I have refrained from making and ordering the customized attraction maps of the parks that are available online at Disney.com. Too much feeding of my compulsion; too much enabling.

Julia and I had a hard morning on Tuesday. It was foolish and unnecessary and this time I was the one who dug in my heels. I wound up yelling at her. All over the way she flushes the toilet. Granted, she tends to flood or not completely flush. And her jiggling of the lever drives me nuts. Still, doing an ABA-style discrete training during which I made her repeat a feasible way to flush - something she was almost unable to do, especially with my yelling in frustration - was awful. Julia almost missed the morning bus, and only made it running out the door and calling for it to wait. I threatened that I would let her miss it if necessary. Foolish, foolish. And I did not like myself afterwards.

However, the spirit of this child rises and roars. When she got off the bus in the afternoon, her first words to me were, “Are you ready to apologize to me?” And I did. That was a phrase right out of my childhood, and I never use it with Julia. Where did she hear it? Is she channeling my mother? Now there is a scary thought.

Later on that day, I had a phone session with Ellen, my energy healer, and we talk about the twin towers of guiding principles that have long plagued me. I believe in both structure/tradition/establishment and free thought/creativity. On one hand I would have loved to spend my whole like in my village of birth -- okay, my suburban Jersey town of birth. I would have loved to follow the rules, and live according to the customs of church, family, and the middle class. But I never could. As much as I longed for it, the basic decisions that I instinctively made tore me away from that life. On the other hand, I wanted to be wild and crazy -- live the extravagant, self-indulgent artist’s life in NYC. But again, I was pulled from that by the gut feelings that bound me to my internal suburbia.

The relationship between these two ideals was all out and total war. If one was right the other was wrong. And that was the only way it could be. I come by this idea of the black and white of right and wrong honestly. It sounds so much like my mother. It is my mother.

What Ellen talked about was a middle way, and more importantly, an end to the fighting. Ending this war holds the promise of eradicating the feelings of frustration, the feeling that I never get anything done. I was reluctant to fully engage with Ellen this time. It was harder work than what we have done before. It felt closer to some core-principles.

I cried long and hard after I hung up, not even sure why but feeling the raging battle of structure versus creativity welled up and overflowed. Then, thoughts of David came up and I realized that David lived with much the same dilemma and walked the line between the two much more gracefully than I do. Not perfectly, by any means. And not without plenty of time and energy pumped into the battle. However, before the end of his life, he had managed to find some middle ground, some mutual solution, using both sides without compromising some essential part of himself. I am seeing it as I spend days and weeks going through his papers. I did not know and could not describe what I was looking at but I see now. I also saw it in the last theater piece he wrote -- written between the transplant and his death and performed in February.

And so, plenty of tears as well for missing him -- my partner, my teacher. We would have talked about this. I know that like Dorothy in Oz, that I had to discover the idea of mutual solutions myself, and I know that I am learning this lesson when it was time to learn it. But this learning is really moving on from David. This is discovering something new that I did not know before. And I miss not telling him. Not as my physical, right here, partner and friend.

It took an entire day to release some of that hard work and bad feelings. Still, yesterday (Wednesday) I was caught in my own trauma, dealing with the UW clinic that prescribes Julia’s ADHD meds. I needed a few extra of her Adderall to get me through next week. After two days of getting in touch over and over, and being assured each time that it would be taken care of and that I would be called back, I was told at 5:30 p.m. that there was nothing they could do because state law would not allowed the pharmacy to release these meds more than 7 days ahead of time. And yesterday, was 7 days ahead. Of course, that was the last of several stories I had heard during that day, and the problem really began because my doc did not get back to me or respond to my message at all. Some serious flaws in this system, and it is about as user unfriendly as it gets. Frustration does not describe the process.

I did lose my cool. I was the ugly patient, or ugly mother of a patient. But even in the cool light of the next day, when controls and rationality have been firmly re-established, I cannot see any way that I could have improve the process and see all too many ways that the clinic was inefficient, ineffective, and just plain wrong. I don’t think that Julia’s state health insurance will allow me to change providers which I would like to do. This was not the first frustrating, inefficient encounter I’ve had with this clinic, but this was the first time I had to travel without the medication that I needed.

The clinic office manager who stayed 30 minutes after the clinic closed to try to sort out the inefficiencies and mistakes pointed out how much she had tried to help me. She apologized. But still did not get me the meds I needed. It wasn’t her fault -- it was the doctors’ faults, the receptionists fault, the pharmacy’s fault, and the new state law.

Yes, by the end of the day, I was a bitch. Thank goodness, I was not a bitch with a weapon. Sometimes the good judgment of believing strongly in a gun- free citizenry really pays off.

Julia and I spent the evening packing and getting ready to leave before 6 this morning. While I was packing, I gave Julia the job of making my bed. She had to figure out how to put the sheets and quilt on the big king bed and put on all of the pillow protectors and covers. It took her a long time -- 45 minutes or so -- but she did it. And she was tired enough afterwards to want to get into that bed and go to sleep.

Another interesting Julia thing, she is insisting on taking a book to bed with her every night. Right now, it is “The Merry Postman” She is so much a part of this family! How amazing that she has absorbed this -- yes, here is something that she has learned without our, now my, direct teaching.

I have been and will be spending time working on my trauma presentation which is due in class in two weeks. I only have 10 minutes to present and I’ve been trimming it down over and over. My rough draft probably represented a 45 minute presentation, and there is so much that I would like to share. But the focus is good for me. Maybe an all-important part of this leadership project.

1 comment:

Sharyn said...

"What Ellen talked about was a middle way, and more importantly, an end to the fighting. Ending this war holds the promise of eradicating the feelings of frustration, the feeling that I never get anything done. I was reluctant to fully engage with Ellen this time. It was harder work than what we have done before. It felt closer to some core-principles."

Just finished watching "The Buddha" for the third time(!) -- excellent suggestions for finding that elusive third way -- breathtaking animation sequences. Available on Netflix.