From the diary of Julie Falco
Thursday, January 14, 2010:
Wake up call at 6:45, yawn! Slowly I got dressed and ready for our morning appointment. MPP had arranged a meeting with Senator Durbin while we were in DC, and Thursday’s are when Durbin’s office holds a constituent coffee for Illinoisans visiting DC. I figured while we were in town and available the day for Illinois constituents, why not utilize another opportunity to further our reach.
In the photo Julie speaks at MPP Gala podium accompanied by Dan.
So the floor I just slept on was in a handicapped room ironically. I typically like to walk and move around, and I sometimes get a regular room to be able to have handholds that are closer together. These spacious rooms though, force me to use the weechair because there are fewer things to grab onto in all that space. So, instead of walking into the bathroom like yesterday, I wheeled in this morning, giving my legs a chance to wake up. I had difficulty maneuvering the wheelchair around the bathroom door to gain access to the sink. You see, the door swung inwards blocking the sink to my right. I had to roll back and forth a bunch of times to pull the door toward me to be able to finally clear the wheels so I could close the door and wheel up to the sink. Whew! Then to my surprise I could not see myself in the mirror at all. AND there were no other mirrors in the room!
Fortunately, I was able to stand up and lean against the sink to access the mirror. As I leaned and washed my face, I thought about others that do not have that option, and I knew I had to say something. I thought about how the door could be switched to one of those pocket doors that slides open to the left and right. (I left feedback for the Hyatt on this oversight, and they have since called me when I got back home. They informed me that they are addressing the matter and are in the process of correcting the situation.) I was exhausted before we left the room and I took a moment to eat an energizing CLIF bar I bought at the airport. This has been a full service advocacy tour!
Luckily, Dan was in the adjoining room and he had an enormous, beautiful wall mirror that I reflected upon. We then were ready to roll. We took a cab to the Dirksen Bldg. on Constitution Avenue, which ended up being less than five minutes from the hotel. After navigating our way to Sen. Durbin’s office we found it darkened and silent. No one was there yet at 8:30am. Next door was Sen. Byrd’s office and there were staffers actively readying for the day. Dan asked them if they knew where the constituent coffee was located, and they directed us to a 9th floor conference room. As we exited the elevator, the room opened up hugely with a wall of windows to gaze at the dome of the Capitol and the Washington monument in the distance. It was a grand site; however the room was completely empty.
We head back to Durbin’s office to find that office staff had arrived. They had no record of a scheduled meeting. Someone dropped the ball on setting this up and we felt foolish as they told us that if the legislature is not in session, then the constituent coffee doesn't happen. We left some flyers and head back to the hotel. Very disappointing.
When we got outside the building, Dan felt that since we were so close to the hotel, he could get us back faster if he just pushed the wheelchair instead of transferring in and out of a cab. I agreed, and he put his long, wool coat over me like one of those Snuggie blankets. This one was already warm and cozy against the early morning chill.
We hurriedly packed, and while Dan went downstairs to check out, I finished changing into plane clothes. When Dan returned he told me how he ran into Cheech & Chong checking out too. He told them how I didn’t get a chance to meet them and hoped we might have an opportunity when they are in Rockford in May for their Get it Legal tour. They were in morning incognito sunglasses wear, and I believe Dan got a nod from them.
We got in a cab pretty much at the time we should have been at the airport. I asked the cab driver if it was possible to take a scenic route on the way to the airport so we could see a bit of the architecture and landmarks. He was a skillful driver as he drove us by the front of the Capitol building, swinging around to head west on Pennsylvania Avenue, to drive by the Old Post office on our left, and the FBI building on our right. While we were sitting at a red light we heard sirens blaring and a police car coming toward us on the other side of the street. The cab driver said, “It’s the Presidential motorcade! Get a picture!” I was able to click two photos as three, dark SUV’s and a trailing police car sped past us. Then he said deflatedly, “Oh, it’s a decoy, it’s not him.” I said enthusiastically, “It will be when I tell everyone at home! Ha ha ha. The President was on the move, on some other street somewhere, and that’s good enough for me!” Fun!
We then stopped on Constitution Ave., overlooking The Ellipse Park on our right, that then extended to the front lawn of the White House. To our left was the symbolic Washington monument. We then turned left on 17th street, passing the World War II memorial, and in the far distance the Lincoln memorial. We then looped around the Jefferson memorial before getting on the expressway to lastly catch a glimpse of the Pentagon. Weeeee! That was a fun ride! It made up for the Dan-dubbed hicuppy day that we experienced all the way home.
Within 15 minutes we were at the airport. We were held up in security as they wheeled me to the glass quarantined box and used the opportunity to train a new person on how to properly feel up a person in a wheelchair. I’m all for helping out when I can, though this was definitely not the time. I expressed our need to get to our plane, and the supervisor took over. We arrived at the gate with just enough time to buy some food to take onboard. Then I had to be strapped into a transport chair so they could board me first, and haul me to the very back of the plane.
It was a packed flight from riders of a canceled flight transferred to ours, so there was no chance to get our seats changed this time. The transport chair is basically a dolly with a small seat. I transferred from my wheelchair into this dolly seat at the door of the aircraft. A seatbelt goes around my thighs to prevent my knees from knocking against the seats. Then they strap a seatbelt over each shoulder. I felt like Hannibal Lecter in the movie Silence of the Lambs, where they strapped him into a similar device to transfer him to a different jail.
When I transferred into the airplane seat, there was only about a 1/2" of clearance from knees to back of chair. It was quite tight and uncomfortable as my legs spasmed and jumped. The flight was uneventful until I had to go to the restroom. I delegated all flight attendants to be used as handholds. It was almost impossible to stand up from this seat without yanking on all the other seats around me as handholds, and my legs were stiff from sitting in such tight quarters. After laboriously getting to and from the restroom, I was completely tuckered out.
We were the very last ones to get off the plane. The cleanup crew was anxiously waiting for me to get re-strapped in the transport chair. I was never asked if I had control of my arms and legs, and as we went down the aisle one knee was brushing against the seats. They didn’t tighten the leg straps very well and like Houdini, I was able to escape from the shoulder straps, reaching my arms through to hold my own legs away from the seats. All I could think about was how the airline industry can improve these flights. They could make a dedicated seat or seats for challenged riders in the first class section. Like how buses have dedicated spaces and adjustable seats to make room for chairs that can be locked down or something. So it can still be used for first class rides, and also for folks that find it impossible to fly under these degrading conditions. Well, that’s a job for another day.
We made it home safely with just a few more “hiccups.” It made sense that I slept for three days after all that excitement. I was having difficulty moving my legs and my body. It was like I packed them in a suitcase that went on to another city. I was completely wiped out, with no energy.
Despite the hiccups, the Gala event was a truly memorable experience. I am grateful and honored to have received the Outstanding Patient Advocate Award. I dedicate this award to all those fellow patients and doctors, supporters, advocates and educators that I have met since starting on this journey. We will have a legal, safe option soon for the people of Illinois. My wish is for the Compassionate Use of Medical Cannabis to be passed this year. We'll know soon enough. Keep the faith!
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