Katie
How [have] your support networks have changed, when it comes to support physically and medically and [for] mobility? We weren't ready for [COVID], nor was there a plan in place, nor has there ever been a plan in place for anyone.

Becky
No. No. So that's a very real reality for me, that's a really great question. I have always been fortunate enough to have what I jokingly say 4.5 aides. So, the .5 aide was a very, very, part time person, but was actually extremely important because she would also act as a very reliable backup. She lives locally, she would do anything for me, but with the exception of that .5 woman, I physically have four aides that rotate through my week and my weekend. So, we kept my usual schedule through the middle of March and at - in a very quick turn of events it became clear that that really was not going to work for anybody. So, one of my stalwart aides who I have known for three and a half years, she absolutely stepped up to the plate and she knew that she was the only one who would be able to take on this really unrealistic expectation of being my sole aide. We knew it would be more than several weeks. We couldn't even say the words 'twelve months' because that just was not feasible. It was barely feasible to think about three months let alone the raw reality of being here. Again, my cognizance of the way the majority of the disabled world lives - you know, mine was, I mean we can't compare, I know, but I'm very aware of the extreme difficulty to aides and worry that so many people that need care have right now. There is no right answer, really no 'aha' moment.

Katie
The more information we get [is shifting]; 'don't wear a mask' and 'now you need to wear a mask' and "it's okay to go out in public but make sure you wear a mask but we're not going to make it a law" or "things are open but stay at home." I think that's been the most challenging. I know you like being amongst lots of people watching live theatre, in a tight, enclosed space.

Becky
Suddenly is a vital piece of my life and my world [where] I somehow created my own space in that arena [is gone] and, you know, it is really mind boggling and heart breaking. You know, I miss the theater very much. I don't know what has happened to me, you know, I think I'm just psyching myself out, maybe, to never go to another [play]. I mean I'm protecting myself from the reality of that world never looking the same again, maybe. But I feel more feelings for the artists and the actors and everybody I that realm who were just stopped in mid whatever — mid-show, mid...but I'm also very fortunate to have kept the connection with a few of my favorites. Theatre Horizon has been one of the leading theatres to pivot to the 'at home' platform, so I'm not necessarily cut off from them.

The other thing I'm finally letting myself do is find webinars. For the longest time I thought webinars were reserved for the hoity-toity people, but this stuff is so easy now. I just was on one today. The availability and the accessibility to be stimulated and to be engaged is really there, and I know that this way of being together is really offensive to many, but I don't have any of those feelings. I mean, yeah, do I want to be in the same space with you or whoever — yes! But we can't. So, thank goodness it's not 1918.

Something new that has become clear is that I have to respect my aides' thoughts and feelings around this thing, too.

Katie
Does it come a point with our situations where we have to start going back to what we know for our own sanity? Like [balancing] the percentage of risk versus reward.

Becky
So a few things. So, we have broken the bubble very intentionally and, you know, I'm very fortunate that Kaye [aide] comes from a medical family. So, this [work] is just in her DNA. But even with that said, nobody is going to get it right. The real fact is that no one is going to get it right all the time, you know. Kaye doesn't worry about packages that get delivered to the door, but Rachel [aide] does. Something new that has become clear is that I have to respect my aides' thoughts and feelings around this thing, too. If Rachel doesn't want to open a box for three days, I have to let that be ok. Kaye goes grocery shopping and at the very beginning we cleaned all the groceries. That one quickly went by the wayside. But we clean the [kitchen] island after. We clean the fruit but we're not going to clean bags.

So, you know, the bubble has definitely been broken. People have been here. I've had service people here. Now for me going out, we've done a lot of drives since March. I have not been in a store, but we do some take-out, you know, that's what that is. The biggest thing that we've done — two things. Three weeks ago, we went to Merion [Cricket Club] for dinner which was a very big deal. But I am having a lot of feelings. I never used to be political but, in my old age and with the way the world is, I am so proud to be more political, politically aware them I have ever been before.

So, my three priorities have now become getting blood work, getting my hair done, and going to the dentist. And last week we did my blood work and that was a startling 'first thing' that I actually did - that was going into another building but leave it to me to go to a hospital first. We went to Paoli and we did the screening and my temperature always runs low but of course that day it was high because I was stressed and nervous. But the woman was so nice, she's like "oh, it's hot outside', so yes, I have very specific things to do, but I am in no way remotely excited to go to the mall, or even to go to an outside restaurant. Maybe if someone that I really, really, really wanted to go with and they made it clear that wherever we were going would be safe, I might go.

Part 2

Katie
We're following up with our conversation which started in June of 2020 in the midst of a pandemic.

Becky
Yes

Katie
In looking back, what will you remember most about this time?

Becky
I have been thinking about this a lot lately. I definitely will remember this time for the amount of time I've spent in my beautiful home at my computer doing, discovering, another level of independence through technology and how settled I am with these life circumstances right now because of this weird level of freedom and liberation through technology. So, there's that. But I will also remember this time as being one where I was approached by a local theater company to share pieces of my life story through the theater platform. In other words, this local theater company, Theatre Horizon, is providing me with my performance debut. The artistic director, Nell Bang Jensen had the idea during this pandemic to bring theater to the local community rather than the other way around. To really share unique stories of diverse people in our local region. So, I was approached to be a part of this project. And because of technology, this is very much able to be accomplished. So that will be another piece that I will remember.

Katie
Do you think that, if it wasn't for the pandemic, you would just be going about your day to day and this idea of settling into both this project and technology would have happened otherwise? Do you think this level of engagement would have come your way or do you think there was a moment that, whether it was Theatre Horizon or other organizations recognized how isolated people were and felt that there was an important time to reach out?

Becky
I really think that, unfortunately, the pandemic needed to happen to really wake up some or many sectors of life. I have no doubt that I would not be participating at this level in the theatrical performance. I have no — beyond- no desire to be anything but an audience member. But they reeled me in and I am actually their pilot performance so we are all learning together and it's been quite a ride. But I very much believe that there would not have been a moment where theater or any other business or entity would have thought about this level of technology and being such a positive part of the disabled community.

I have really started to pay very close attention to the world and how I relate to it and where I fit in it. I guess there's been a lot of time to soul search...

Katie
My last question really addresses this idea of what you, as a person with a disability have really learned about yourself during the pandemic, both positives and negatives and things that have surprised you about your own habits or relationships with others.

Becky
I will say that ten months into this, almost, and having it be basically the depth of winter, not quite yet but soon, I am beginning to feel maybe a wee bit less resilient and clear headed and optimistic about the whole situation. I definitely am trying, I'm putting on good faces every day, but there is a pandemic brain phenomenon that is real. I think it's happening to me because now it's winter or a least much colder, my options for distraction is significantly decreased so I'm not able to go outside. We could bundle me up, but I have no desire to be in the cold. So, there's that. But my interest and my deep awareness of the political world has really expanded and exploded through this time. Really, along with my awareness of the country and the world and all of the topics that are here right now... I have really started to pay very close attention to the world and how I relate to it and where I fit in it. So, I guess there's been a lot of time to soul search and learn and take online classes which I never would have done before but that's absolutely one thing that has been a no brainer. So good old Main Line School at Night has afforded me seven or eight classes which is just been amazing. I don't need anyone to drive me and get me there and its really just right there in front of you, so the options for stimulation have been completely blown out of the water. Many, many options to keep us stimulated have all of a sudden been given to those of us who want to take part.

Katie
Thank you so much for sharing your thoughts about this time. I wish you and your caregivers and your family a happy Thanksgiving and hope that we get through this pandemic and better for it in some ways, as you said resilient in others, but I appreciate your time

Becky
Thank, you Katie.