By the time Casper and I became an "us" and had a chance to travel, her symptoms had already started. She was already beginning to have trouble with directions, navigation, and memory. There was no chance to figure out who had what strength to bring to the table (or plane) - by that time Casper was already getting lost in airports and forgetting flight information. Added to that was Casper is not a good flyer, and my flight karma is usually challenged. We make a great pair in the air!Where we were going mattered far less than that she could see me and knew what gate we were supposed to board through.
This week's trip to Sacramento became a necessity to take Casper because I was going to be gone for five days, and being gone for five consecutive hours can sometimes mean five calls asking where I am and when I will be home. Don't get me wrong- I wanted her here with me. But it was also necessary. I hoped she would come and listen to our presentation too. It's always nice to have a cheering squad, and we were missing Tracy who could not make this trip.
I requested priority boarding for Casper online, and indicated there was a neurological issue. One would think that would make its way through cyberspace to the airport ticket counter. One would be wrong to hold one's breath. Travel day is somewhat like this: pace around the house until Jill gets home; rush the luggage downstairs so we won't be late to meet Sherry and Tracy, forgetting three important meds in the process; pace while waiting for them to arrive (on time and with several texts to assure us they were en route); worry we will be late all the way to the airport; try to manage the airport check in and security; forget to take off the belt, worry about me not being behind in the strip-you-naked-via-xray line; worry that we lost Sherry in the strip-you-naked line; tremor while trying to get shoes back on because stress makes Parkinson's worse.
Finally, we get to the gate, and get a strawberry shake so Casper can have lunch. Strawberry shakes and sweet potato fries make a totally balanced diet any day- and meet the PD taste bud specialties of sweet and salty perfectly.
Once we were at the gate I needed to get her blue card for handicapped passengers. I have to commend Southwest- unlike United and Continental, they do not require an interview with the passenger at the very public and usually crowded public counter about their medical condition. This time the staff asked about her condition, and said they needed Casper. I told them she was embarrassed, and pulled out our 2 gallon ziplock bag of medications. The clerk told me he was sorry, but some people lie. I offered to take every bottle out, and he said he would be happy to offer a blue card and early boarding. Whew!
When we made it on board and got settled in Casper started looking for Sherry. And looking. And worrying. I texted. Casper looked. I knew Sherry was number 56 in line, but Casper was certain Sherry might have gotten into the wrong line. Sherry, who flies at least monthly. Who has been my travel companion multiple times, and set this trip up so we can do a professional presentation to market our practice. Who can manage an airport in her sleep (and I suspect she sometimes does). But Casper has no reason to know that. Our history does not reach that far back. She wasn't part of all the trips to Northern California for the Heart Gallery, to see kids in adoptive homes, and long, long ago to go wine tasting in Napa or to get married in San Francisco. This is all new to her, and that makes it nerve wracking and makes the tremors worse. I can see them, but she's pushing on her legs to make them stop jumping and has her hands in her pockets to make them stay still. Finally Sherry arrives at door of the plane, and we have an hour and ten minutes of relaxation.
That's about the time I realize that our lack of travel rhythm has caused me not to take one last look around our bedroom before we left, and that three meds are still sitting on a shelf at home. Not a great realization at 30,000 feet, let me assure you. I am full aware that Casper will not sleep tonight and that I will be tired tomorrow, as we are doing our much awaited and planned presentation. Lots of thoughts, and words, run through my mind. None should appear here.
We land. I grab my phone. By the time we are in baggage claim the problem has been resolved except for details. My mom has agreed to rescue us, and the kids are lined up to help Grammy. The rhythm may not be lost- it's morphing into a new normal, with new strengths. Kids who are young adults and who are willing to help; a Grammy who now needs help to help; a mom who is traveling without kids for a new adjunct to her career and hoping it will eventually mean enough retirement to take care of everyone depending on her. And a best friend and colleague who is having to adapt to a new normal in my travel routine. This really is "caregiving and change" in action.
We get to the hotel, and my stress level is back up. Of course my knee is stressed too- we were squashed in a cab from the airport and my knee was having an intimate moment with the inside of the car in a most uncomfortable way. I love dents in my knee. I can see Casper trying to remember what city we are in. I know she's not sure what day it is. I know she's not really sure why we are here. A conference? We need CEU's? The details are not there. We get to our room and I make sure she unlocks the door so she will know she can. I can see she's exhausted and needs to lay down. I unpack, she checks the room, we get her down for a late nap. I check to make sure she knows to use the area code and leave her to rest while Sherry and I go to check out what we have gotten ourselves into. We are planners and need our lay of the land. In the back of my mind, always, is "What happens if Casper needs me?" I discover how blessed I am- Casper is okay, and sends us out for dinner and drinks so Sherry and I can talk with only a request for something brought back for her.
The next day I have had zero sleep. Casper shook all night. Tremors kept both of us awake. I find Sherry, and we find coffee and breakfast. The new normal. I pray Casper will sleep with the meds she's taken to stop the tremors, and that she won't wake up and need to reach me when we are in the middle of our presentation. We get through our precheck- props, computer, mic, seating. We are so set we have time for a picture with our sign. Our presentation is going well, and Sherry and I are back in our rhythm. I look up- and try not to stumble. There, in the back of the room, is Casper. What? We are in the middle of a big conference. We are in a side room on the second floor. How did she find us? And how proud am I that she showed up to hear us do our thing? I look up five minutes later and she's gone. Now am worried- where did she go? Back on point, back to work, and a quick prayer that she'll be okay and we'll find her afterward.
This afternoon we are a day after our program. I steal Casper away for a trip to the capitol building. But where yesterday she was interested and involved, today nothing is of interest. Casper can't make her feet walk normally, and she has almost fallen four times just this morning. She isn't tracking well, and what would have been interesting before doesn't hold any interest suddenly. She's sweating profusely and her affect is flat. We barely make it across the street next to the Capitol because she is so stiff her legs won't work. An afternoon outing is cut to an hour because she just can't manage any more. I realize as we are walking that we are on day two of a medication increase, and its already past golf time for our doctors. I google the dangerous side effects. Check, check, check. Damn damn damn. Casper was just beginning to feel better and less sad with the impact of the PD meds, and now this? While we are away from home? On Friday afternoon? I use my best coping techniques and pray for the best.
Casper has been waiting since yesterday to cruise the conference exhibitor hall for free goodies. She's asked to go five or six times. I grab her arm and away we go. She loves the pens, the notepads, even the cheesy coffee mugs. We now have enough shopping bags to last five years. The exhibitors watch us quizzically. I have a badge on, Casper is grabbing goodies. Several times after she steps away I mouth a silent "thank you" after we clean someone out of chocolates. They can see something isn't quite right. I can't say anything. Finally we get to a vendor who sells guided imagery. I know it's got to be good since it put Sherry to sleep already! Casper listens to what it is. It's all new to her. I watch her listening. Some is making sense, some isn't. Finally, she tells them she's got PD and chronic pain. She asks what they can do. I am amazed. Relieved. And glad that we are making our new normal something we can share, and talk about, and maybe even manage a little bit.
Tonight dinner did not taste great. We tried a southern restaurant that wasn't really southern. But they did have cobbler, and dessert was all we needed. Because we have a new normal, and it's a sweet one.
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