Saturday, October 31, 2009

The trip went well, but then disaster struck

After all the worries about all the things that could go wrong, things went about as well as they could on Wednesday. Ann came first thing in the morning to help with last minute packing and organizing, and Tim arrived on schedule to load everything up, including the scooter. As we started driving to the airport and he was asking what route to use, I suddenly remembered what the cab drivers call "the back way," which keeps you off the highways which can get jammed, and I was able to remember all the twists and turns. When we pulled up at the United terminal we easily found a porter for all our stuff, while Marty set up the scooter and we rolled up to the counter. It's been so long since I've been on a plane that I'd forgotten all about reserving seats, so we ended up pretty far back, but when we got to the gate the agent there was able to move us a few rows further up. As promised, I was able to drive the scooter right to the airplane door, and it was then hand lifted down to baggage, while I was put into an aisle chair and rolled to my seat.

The woman sitting in the window seat was also going to Nebraska (to Lincoln), and when I asked Marty if we could tell from the airport diagram where the commuter flights left from, she said they were usually in another terminal that looked to be a very long way from where we were coming in, so I worried about that for awhile. But once we were off the plane (again, the routine with the aisle chair, and, as promised, my scooter waiting for me just outside the airplane door), the agent told us that our flight was just at the other end of the terminal we were in. I was worried about Marty having to walk that far, but there was one of those carts that transport people with disabilities right there, so Marty got on that and I rode my scooter to the gate. It turned out that our flight was going to be late, because the crew was coming in on another flight, so there was time for a bathroom break. We should have gotten something to eat, but for some reason didn't, and eventually the crew arrived and we were able to board. The flight attendant asked to see the doctor's letter for my oxygen, which we hadn't needed until then. By that time, we were on the auxiliary battery pack, as this portable concentrator just does not have the battery life we were told it would.

Our arrival went smoothly once again, with my scooter ready for me, and our baggage already on the carousel by the time we got to baggage claim. The hotel van was waiting, and although it was quite full they were able to find room for us and all our stuff, with me in the scooter using the lift. At the hotel, a bellman took all our stuff from the van to our room. By this time we were both exhausted, and quite hungry, although I knew that I was only going to be able to pick at my food, because I was so tired. I also called our contact person at the Omaha hospice, because the large concentrator had not been delivered, so they put in a call to the oxygen company, and the technician arrived with the machine at just about the same time as Scott, the hospice nurse, who checked me out. I was amazed that I was feeling as good as I did, just very tired, and once we had eaten we went to sleep fairly quickly.

Unfortunately, I woke up on Thursday morning feeling awful, sick to my stomach, and with a stuffy nose that made it hard to breathe through my nose (and when I breathe through my mouth I'm not getting oxygen through the nasal cannula). I was feeling worse and worse. Marty urged me to take my pills but I said I was just going to throw them up. He tried the haldol cream, but it had no effect, and I was getting somewhat hysterical (and I'm sure very difficult). Marty called hospice, and a wonderful nurse, Amy, came. She called the hospice doctor, who prescribed some meds, so she went out to get them, and when she came back she gave me a couple of injections. Pinkypine so rarely has to do his job of getting held and squeezed whenever I get a needle, since I get one so rarely these days, but good bear that he is, he did quite well.

It took awhile, but eventually the meds kicked in. I was a bit alarmed that one of them was haldol, but I imagine it's a much lower dose than when it's used as a psych drug. Amy also put some sort of port into my arm so that Marty could give me additional drugs, which he did even though the thought of it makes him feel queasy. It didn't involve a needle, but a plastic connector that went into the port, but he still didn't like it, although he certainly rose to the occasion. Amy had said the meds would make me sleepy, and even though I'd slept a good part of the day, I woke up Friday morning feeling much better, and once again able to breathe through my nose. I was also hungry, so Marty went downstairs to the buffet breakfast and got there just as they were closing up. He brought some fruit and danish (and some bacon that my stomach didn't feel ready for), and I ate and drank and took all my pills, and eventually got dressed and we went to lunch.

I had missed the Thursday evening event where I was given the first annual Judi Chamberlin Joy of Advocacy Award, but saw Joseph Rogers at lunch, where he told me he had the actual award, which was a huge jar filled with chocolate! He said he would get it for me, but I told him we had so much stuff to transport that I would much prefer that he ship it to me. I was able to eat a reasonable amount of lunch, and was feeling pretty good. On Thursday, in my semi-delirium, I kept saying what a mistake the trip had been, and wondering how we were going to get home, but now I feel much more positive. I called hospice to report that I was feeling better, and got another very nice nurse who was familiar with my case and was glad to hear the good news.

It's now Saturday and we actually made it down to breakfast, and we're now resting until lunch where I'm being honored. It is so good to be here and to be seeing so many people that I thought I might never see again, as well as meeting people who are telling me how much my work has meant to them. This morning's speaker was Andy Imparato of the American Association of People with disabilities (, who talked about the importance of cross-disability work and pointing to a lot of recent successes in Washington, which was good to hear. He and I got a brief chance to talk afterwards, and we're going to talk more in the next few weeks.

Through all of this, Marty has been an absolute rock, calm and steady when I needed him, and doing a lot of unpleasant tasks without complaint. Having him in my life continues to be wonderful.


  1. Wow, Judi! It's so hard to get through even the most mundane logistics nightmares for us "able bodied" people, but you and Marty seemed to have handled it all with confidence. It's great that you have been able to get out and do something exciting, and experience an important moment in your life. I hope your return trip goes smoothly, without any hitches this time! Be blessed! ---Kristen

  2. Hi Judi,

    Thinking about you, glad things are working out, enjoy it all.
    Came by to say hello and wish you a good Halloween weekend.

  3. hello Judy.

    writing from berlin, germany, I am relieved to read that cross-disablity work is appreciated in the U.S. being both mentally and physically disabled, I am VERY unhappy about the way physically handicapped people act towards me just like "normal" people when mentioning the schizo, which I think we are at a stage historically that it need be mentioned!!