Driving Miss Crazy

Warning, this is long. It's probably something I should wait to post because I'm frustrated and angry, but I want it all written down and documented while it's fresh in my mind.

I drove the car yesterday for the first time since my surgery a week ago. I did not have any actual restriction on driving but I felt so distracted I thought it best to wait. Driving was fine. I just should have avoided Destination: Crazytown.


Maggie needed to get blood work. This is part of the outpatient testing we are doing in an attempt to avoid a lengthy hospitalization. As soon as she arrived home from school, her nurse Josephine and I loaded her into the van and headed up to UCSF. I quickly discovered the movement required to lock the wheelchair into place is quite painful to my newly repaired shoulder. Filed that information and kept going. Onward!

We arrived at UCSF at 3:01PM. I stopped in front of the medical building. The BEST thing going at UCSF now is the valet parking for the medical building. Parking is such a nightmare up there, especially for wheelchair space. I want to kiss the valets every time I see them. I stopped and unloaded Maggie expecting the guy to come running up. I saw one of them moving a stool at the entry. I waited a few moments and then went in to ask. Valet stops at 3:00. Unnngh. Ok. No problem. Josephine could stay with Maggie while I drove into the 9 story parking structure to find a space. Onward! I did find a wheelchair space fairly quickly. Of course there was a giant truck in the space next to it so there was no way I could get the ramp down, but Maggie was already out so I grabbed it. Maybe he would be gone when I got back.

Getting an elevator that is not crammed full of people is the next order of business. Maggie’s chair is BIG and the three of us and her chair take up ¾ of an elevator. We managed to get her up to the second floor to the pediatric lab. This lab has served Maggie her entire life. It is a very small room behind a larger anteroom off the main waiting room of the pediatric clinic. It has been a while since we’ve been in there and in our absence, it has apparently become the capital of Crazytown.

In January of 2009 – 14 months ago – I snapped a photo of a sign hanging in this lab saying that strollers and wheelchairs were not allowed. I was dumbfounded at the sign, no strollers in a pediatric area. I’m sorry, WHAT? And no wheelchairs in a medical setting? How could this possibly be? At that time, Maggie was not denied the care she needed. The tech never said a word about it and took Maggie blood in the doorway of the lab as that is as far as the chair would reach. He accommodated her and her chair. That is all I would ever expect and that is fine with me.

Still, I posted about the sign and brought it to the attention of the “higher ups” at UCSF. They were aghast. Things were going to change immediately. Thank you thank you thank you for bringing this to our attention. There is no excuse for this, etc etc etc. I pointed out that the access issues could be remedied easily and inexpensively by rearranging the space. No construction necessary.

I felt good. I had effected change for overwrought parents of sick children.

Only no I did not. I fixed the SIGN, but not the problem with the sign. Apparently, the 14 months, meetings, and hand wringing had effected only two changes. The first change: the sign was now typed, grammatically correct and a bit more polite, indicating there was an accessible lab on another floor. Note: the accessible lab is not pediatric.

Here are the two signs from January 2009 and March 2010. Progress!

I waited. I did not want to wait for another empty elevator if I did not have to. I expected the same thing to happen. Maggie would be poked in the doorway of the lab room. I expected far too much. This is when I discovered the second change I had effected. The tech was empowered by the sign.

The woman came out, looked at the chair, and said (nastily) “if she can’t fit, you can’t come in here.” Josephine and I just looked at each other in wonder. I said cheerily,” oh we can make it work; we’ve done it many times before.” The woman turned on her heel and went back into her cave. I moved a couple of chairs to fit the wheelchair. I did not realize one chair was holding the lab door open. When I moved it, the door closed and locked. The woman was inside. I waited for her to reopen it, but she did not. I knocked. She opened it and said, “You can’t move the chairs.” I (fake) smiled and said, “We’ll put them back.” I asked her to move the tray of papers out of the way and she said, “if she’s can’t come all the way back here you will have to go downstairs.” “No,” I responded.” You can just bring the tubes etc over here. Maggie is now in your lab and ready for action.” (We are talking about four feet.) She said no. She was dug in. I told her Maggie is served in this lab all the time, wheelchair and all. She called her supervisor and instructed me to wait to speak to the supervisor.

I have now waited for a valet who did not come (my fault), an empty elevator (sad reality), and waited for our turn to be called. I wainted long enough. I said I WILL be talking to you supervisor, but right now I need to get this child served. I gave up and we went to the other lab. The techs there were professional, friendly and kind and had the job done in less time than the conversation upstairs took.

We went back to the parking lot and, of course, the truck was still there so I could not get Maggie back in the van. My day would not have been complete if it wasn’t.

It is really nice to be driving again, but I’m never leaving the house.