Let's Not Go Back to Normal
Quarantine. Everyone’s pretty sick of it about now, aren’t they? People are protesting en masse, a spate of lawsuits has been unleashed, and certain state governors have promised to open their states in a matter of days despite public health experts’ disagreement. I’m pretty sure I’m alone in saying that quarantine has been a good thing for me and, in large part, I’m sorry to see it nearing its end.
How can this be? There are some things you need to know about me in order to understand. I’m forty years old and I’ve been living with stage four (metastatic) breast cancer for almost five years. At age 31, I went through treatment for early-stage breast cancer. I lost my fertility to the chemo treatment and my ovaries to a subsequent cancer scare (I’m BRCA2+, which means I’m high risk for ovarian cancer in addition to breast cancer). My husband and I were never able to have children.
Up until my metastatic diagnosis, I worked as a healthcare analyst, a job I loved. Even after my terminal diagnosis, I tried to continue working. When the fatigue and brain fog (also known as chemo brain) got to be too much, I cut back on my hours. Eventually, though, I had to leave my job and go out on full-time disability.
I have no job and I have no children. Can you imagine how isolating that is? Try making small talk when you can’t answer, “Where do you work?” or “Do you have any kids?” Sometimes I just tell people I’m a trophy wife, but if I answer honestly and admit that I don’t work and don’t have kids either, their response is invariably, “Oh wow, you’re so lucky!” It’s hard to hear that your life with a terminal illness is lucky, but if I want to correct their assumption, I also have to confess that in actuality I have incurable cancer and am not lucky at all. Surprisingly, that’s a real conversation killer.
Small talk is hard. But what about interactions with people I already know? It’s not much better. You don’t get to hang out with your mom friends; they don’t think to include you in the playdate invites because you don’t have any kids. (You know it’s not just the kids who get to “play” on those dates, right?) And your working friends forget to include you in work lunches or happy hours because they no longer see you at the office. Occasionally, you might be asked to join the “ladies who lunch” set, but some people think a girl with a terminal illness might not be a lot of fun.
Even without those things, you might think I have a pretty sweet life. I can go shopping whenever I want, take every class the gym offers, or travel to exotic places. In reality, just getting out of the house is an effort and by the time I arrive somewhere, I might be ready for a rest again. I have a compression fracture in my spine due to the cancer, which makes standing or walking for periods of time exhausting and painful. I can’t go to the grocery store without a list that ensures I can get in and get out before the pain becomes unbearable. I don’t go to the gym, because the effort it takes to get up, get dressed, and get there wears me out before the workout even begins. And travel? It’s great when I arrive, but the drive or flight is hard and I can only do little spurts of activity before I need to recover. I would love to tour Europe, but any tour I’ve found is along the lines of “Six countries in six days!” My mind and soul would love that, but my body wouldn’t.
So my days involve a lot of time at home alone. Mostly, I’ve come to accept this. I’m pretty content with my life and extremely grateful that I’ve outlived the average life expectancy for stage four breast cancer. I’m only telling you all this to say that my normal life looks a lot like your life under quarantine. I’ve just been living in it a lot longer.
Which is what has made the coronavirus quarantine so wonderful for me - everyone around the world has joined me at home! Suddenly, the only way to connect to people is a way that is ideal for me. That life I’ve lived that no one can relate to? Everyone can relate to it now and knows exactly how it has felt to be me. It’s validating. Not to mention that it’s opened up a whole world for me to explore. Everything has gone virtual, which means stage four cancer patients stuck at home can participate right along with everyone else. Attend London theater from the comfort of my couch? Can do! Visit museums I never would have had the energy to explore? Yes, please! Yoga, pilates, Nia, and other fitness classes on my living room rug? Check, check, check! Even virtual happy hours! I’ve taken free classes online and learned something new every day. I even participated in the Getty Museum art re-creation challenge. I’ve been having so much fun!
But I do understand that it hasn’t been as much fun for you. I’ve had three years to get used to this life, while you’ve only had six weeks. I also know it’s not a good thing that we’re all at home, people are dying, and so many are unemployed. But I’m not going to lie - what’s been so hard for you has been a lifesaver for me. For the past six weeks, all of my friends have joined me in my limited life, and the entire world has creatively come up with things for me to be a part of, where I've been able to participate as fully as anyone else. I don't feel so alone. I don't feel so different. I’m just another girl, stuck at home like the rest of you.
And I don’t want that to end. They say our world will never be the same post-COVID-19. In the best sense, I hope that’s true. I hope Zoom happy hours continue and I can still do live yoga classes from my living room. I hope the world continues to innovate and come up with new ways for people to engage with the world and experience all it has to offer, despite their physical limitations. I hope people remember that the virtual settings we’ve been forced into have actually enabled fuller participation because they include those who might be marginalized otherwise. I hope we have more compassion for each other, especially those whose normal lives look a lot like quarantine.
Because if these things happen, I believe good will have come from this awful pandemic.
Up until my metastatic diagnosis, I worked as a healthcare analyst, a job I loved. Even after my terminal diagnosis, I tried to continue working. When the fatigue and brain fog (also known as chemo brain) got to be too much, I cut back on my hours. Eventually, though, I had to leave my job and go out on full-time disability.
I have no job and I have no children. Can you imagine how isolating that is? Try making small talk when you can’t answer, “Where do you work?” or “Do you have any kids?” Sometimes I just tell people I’m a trophy wife, but if I answer honestly and admit that I don’t work and don’t have kids either, their response is invariably, “Oh wow, you’re so lucky!” It’s hard to hear that your life with a terminal illness is lucky, but if I want to correct their assumption, I also have to confess that in actuality I have incurable cancer and am not lucky at all. Surprisingly, that’s a real conversation killer.
Small talk is hard. But what about interactions with people I already know? It’s not much better. You don’t get to hang out with your mom friends; they don’t think to include you in the playdate invites because you don’t have any kids. (You know it’s not just the kids who get to “play” on those dates, right?) And your working friends forget to include you in work lunches or happy hours because they no longer see you at the office. Occasionally, you might be asked to join the “ladies who lunch” set, but some people think a girl with a terminal illness might not be a lot of fun.
Even without those things, you might think I have a pretty sweet life. I can go shopping whenever I want, take every class the gym offers, or travel to exotic places. In reality, just getting out of the house is an effort and by the time I arrive somewhere, I might be ready for a rest again. I have a compression fracture in my spine due to the cancer, which makes standing or walking for periods of time exhausting and painful. I can’t go to the grocery store without a list that ensures I can get in and get out before the pain becomes unbearable. I don’t go to the gym, because the effort it takes to get up, get dressed, and get there wears me out before the workout even begins. And travel? It’s great when I arrive, but the drive or flight is hard and I can only do little spurts of activity before I need to recover. I would love to tour Europe, but any tour I’ve found is along the lines of “Six countries in six days!” My mind and soul would love that, but my body wouldn’t.
So my days involve a lot of time at home alone. Mostly, I’ve come to accept this. I’m pretty content with my life and extremely grateful that I’ve outlived the average life expectancy for stage four breast cancer. I’m only telling you all this to say that my normal life looks a lot like your life under quarantine. I’ve just been living in it a lot longer.
Which is what has made the coronavirus quarantine so wonderful for me - everyone around the world has joined me at home! Suddenly, the only way to connect to people is a way that is ideal for me. That life I’ve lived that no one can relate to? Everyone can relate to it now and knows exactly how it has felt to be me. It’s validating. Not to mention that it’s opened up a whole world for me to explore. Everything has gone virtual, which means stage four cancer patients stuck at home can participate right along with everyone else. Attend London theater from the comfort of my couch? Can do! Visit museums I never would have had the energy to explore? Yes, please! Yoga, pilates, Nia, and other fitness classes on my living room rug? Check, check, check! Even virtual happy hours! I’ve taken free classes online and learned something new every day. I even participated in the Getty Museum art re-creation challenge. I’ve been having so much fun!
But I do understand that it hasn’t been as much fun for you. I’ve had three years to get used to this life, while you’ve only had six weeks. I also know it’s not a good thing that we’re all at home, people are dying, and so many are unemployed. But I’m not going to lie - what’s been so hard for you has been a lifesaver for me. For the past six weeks, all of my friends have joined me in my limited life, and the entire world has creatively come up with things for me to be a part of, where I've been able to participate as fully as anyone else. I don't feel so alone. I don't feel so different. I’m just another girl, stuck at home like the rest of you.
And I don’t want that to end. They say our world will never be the same post-COVID-19. In the best sense, I hope that’s true. I hope Zoom happy hours continue and I can still do live yoga classes from my living room. I hope the world continues to innovate and come up with new ways for people to engage with the world and experience all it has to offer, despite their physical limitations. I hope people remember that the virtual settings we’ve been forced into have actually enabled fuller participation because they include those who might be marginalized otherwise. I hope we have more compassion for each other, especially those whose normal lives look a lot like quarantine.
Because if these things happen, I believe good will have come from this awful pandemic.
Holy cow, yes, yes, and yes! Also, yes!
ReplyDeleteMy situation is NOT the same as yours, but. . .
(1) I also have found this to be a good time for me. My work schedule is so greatly reduced that I think I can hear myself for the first time in years. Let's not change that. I desperately need to be able to hear myself think.
And (2) my work is as a Physical Therapist, so I get to see first hand a lot of different things (not just terminal cancer, although I have been doing telerehab with one of patients in just that situation) that leave them unable to participate in "normal societal activities." From people born with developmental abnormalities to chronic pain conditions to devastating deconditioning from a multitude of health problems -- you are most definitely not alone in either being (unintentionally) excluded, or in need of being creatively met in the middle of how to make this life thing work. There hasn't been a lot of "think outside the box" mindset for that, and I hope that a big shift in that will be one of the good things to come out of all of this.
I'm so very glad you said this out loud. People need to hear it.
Thank you so much for reading and for your response, Talitha! I'm glad quarantine is giving you unexpected blessings and increased margin in your days. In every cloud there is a silver lining. And I love hearing your perspective from working with patients who could also benefit from different ways of inclusion. We never know what needs exist until we are in that circumstance ourselves or know someone who is. Your patients are fortunate to have you on their side!
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