Sunday, March 22, 2020


I haven't written here in more than a year. There are a lot of reasons for that. Maybe as I resurrect this blog to write about this pandemic we are hopefully living through, I will begin to tell you why. But in the meantime, I am no longer numbering the days of my post titles, and I am no longer writing about cancer, to the extent that I was ever writing about cancer. Suffice it to say I am over six years out from my second cancer diagnosis. It is almost ten years now since I was first diagnosed. I have lived a lot longer than some, and have a more diminished life expectancy than many.

So it goes.

I am resurrecting this blog in order to document some of what life is like under this worldwide pandemic of COVID-19. I live in a suburb of Chicago. My town was the first in Illinois to declare a shelter in place order, effective two days ago. The entire state of Illinois followed suit the next day. A week prior to the order, our kids' school district shut down, and my husband was ordered to work from home indefinitely. As for me? Well, my timing has never been great. I quit my job right before all of this happened, and I did that without lining up another. It is a long story that I won't tell here, but I was extremely happy with my decision. However, my last day was two weeks before our shelter in place order. The world looks as if it is going to spiral into a great depression, and quitting a job now seems like...well, I was going to say like a terrible mistake, but I don't mean that. It was the right decision at the time. I live in America, in Trump's America, and none of us knew, because our government refused to tell us, exactly how bad this would be. I believed this pandemic would reach us back when I heard about it, in January, but I did not know, nor could I know, that our federal government would do nothing at all to contain it.

And so here we are, seemingly on the precipice of this great change, this time that demarcates "before" and "after." And this feels like these massive changes feel, every single time, as I have been saying they feel.

It is terrifying. It is boring. It is absurd. It is mundane. It is life-altering. It is Sunday. It's just life, a new version.

If life were different, my family would be in Mexico right now, enjoying spring break. If life were different, my two kids would be able to enjoy everything that graduating from their respective schools would entail: my daughter's first dance; her likely success in finally making state in track (she made state all three years in cross country in middle school); going to Six Flags with her class; wearing a cap and gown and walking across the stage at the high school. She would be finally learning how to talk to boys, planning her first high school class this summer, running with her team every day. And my son, who would be graduating from grade school, would be able to play Young Simbaa in the Lion King, the White Rabbit in Alice in Wonderland, Jack in his school musical's version of nursery rhymes; perform with the Chicago Symphony Orchestra with his choir, continue with travel basketball and soccer, hone in on his switch hitting skills in baseball, go on a school field trip to an overnight camp, and take a cruise on the Chicago river with his class after graduation. They would both be able to look forward to their favorite week of the year, Camp Kesem, the camp for kids with a parent who has had cancer.

But none of this is going to happen. And that is what is hitting me hardest about how this has affected my family. I also mourn what I would be doing right now, in my precious time off, that I have never had in 23 years of working, through cancer and all the rest of it: I would be attending all of their events, games, meets, performances, with no work schedule in my way. I would be getting, after all of these years...a break. But it wasn't meant to be. I am sad for them and the normal childhood things that they will miss, because I know that the little things are the things that matter and make up our lives.

I am not anxious, or scared, or worried, really at all. That is not because I do not believe this pandemic will be catastrophic, both in terms of lives lost and in economic terms. It is not because I believe that I will not catch the virus, or that I will definitely survive it if I do. It is not because I do not believe my family and friends will get sick. I am living in a firm version of reality, but I know this--there is little to nothing I can do about any of it. Yes, I can follow the rules. I can stay away from people and keep my family away from people. But in no universe do I believe that means we will be immune to this. As I said for years, for my whole life really, you can do everything right, and end up in the crap end of the statistics anyway. I did with cancer. There was an absolutely tiny chance of me getting TNBC at my age, with my total lack of risk factors. But I did. And then I did--again. My chance of recurrence was about 3-5% after my first cancer, and I was in the 3-5 three years later. After my second, it went up to 15-20%, and here I am six years later, somehow doing just fine. If 40-80% of us are getting this, I said, here we are.

I am good in a crisis, comfortable in a situation when the world spins upside down. I know how to be a stabilizing force in a sea of confusion. I find myself curious about how everyone is so upset and anxious. I lived my entire life in a constant state of hypervigilance, and felt most myself when I had something massive to fight or at least focus on. Two and a half years of trauma-based therapy and anti-depressants have enabled me to see how normal people live--how people actually just sit on a couch, without getting ready to flee, how people don't feel rage all the exhausting time, how people can live without constantly trying to distract themselves from the reality of their lives. And yet...I have not LOST those tools. I can still use them all, I just don't HAVE to use them to get through a normal Tuesday. I have them all now. I know how to do this--except for one thing.

I am used to "this" being me, not everyone around me. I am not used to all of society having to learn how to cope.

I know how to be isolated, in my mind, for sure, but also in reality. I spent three months at 9 years old confined to one room of my house, unable to walk, needing help to move so I wouldn't get bedsores, being carried onto the portable commode in our living room so I could use the bathroom. I missed half of fourth grade because no law guaranteed me an education in 1984. I didn't see friends, and there was no technology to keep me connected to anyone. I was on bedrest for the last month of my first pregnancy, living alone, with a husband who worked hours away and a directive not to drive. I became heavily socially isolated by cancer, lost a lot of friends who had trouble dealing with it, especially the second time around (I also became less tolerant of people's discomfort, and isolated myself at times).

I am an introvert who has become an absolute master of introversion in the last several years. I am a person who has managed to have high-profile, remote jobs that enabled me to work from home full time or nearly full time, for the last seven years. No amount of being alone in my home could faze me (though everyone else being here too? That's different). A childhood and adolescence filled with various and complex traumas--acute and ongoing--taught me to live a different life in my head than I lived out in society. I learned how to live with the possibility and reality of worst-case scenarios. I learned not to worry.-, not exactly. I became like the Russian spy in that movie with Tom Hanks, Bridge of Spies. When he is asked if he is afraid to die, if he is afraid of prison, if he is worried, he responds each time:

Would it help?

No, it wouldn't. And so here we are. Life will likely never be the same. I don't know what it will be like; no one does. But there was a before, and now there is an after. Will my kids ever go to school, play sports, attend dances, go to the movies with friends? I have no idea. Will any of us office workers ever actually work in an office again? Will public transit continue to exist? Will we go from being upper middle class to being poor? Who knows. We have, Gabe and I, been there before and we could do it again, but our kids have not, and I hope that doesn't happen. Will any of us die? I hate saying this, I do, I do, but I do not know. I know this.

We cannot control that outcome.

I mourn the little things, and the big ones, the known and the unknown. But only briefly. I am busy. My kids are very resilient and understanding. This notion that young people do not understand the gravity of our situation or feel immortal simply doesn't apply to my kids. They did not question the decision weeks ago to cancel our trip to Cancun. They have learned to zoom and skype and facetime with friends. They have learned to play poker, and to bet, because that is what we came up with as far as useful things to teach them during shelter at home. They like each other, they even seem to like us. We have a brand new puppy, something I never thought would happen (a story for another post), and he is keeping us entertained.

I don't know what the point of this meandering post is, except to say that I am documenting being at the beginning of a massive shift in the world, and I feel fine. I am not in denial, my family is not in denial. I cannot speak for how they feel, I have never attempted to speak for anyone but myself. But I feel calm, and ready. Prepared? No. There is no way to adequately prepare for something that has never happened, so I do not dwell on trying.

We are living through a pandemic--hopefully. It's officially spring but it's snowing. My daughter turned 14--14! two weeks ago. I have a dog. My son sang a solo in a commercial that aired in times square on New Year's Eve. I am writing this while my family plays Yahtzee downstairs. It's Sunday but the days all run together. It's 9 pm, but that doesn't mean much anymore. I am 44 years old and a stay at home mom for the first time in my life. I hope that changes soon. I hope a lot of things change soon. But who knows?

Who knows?

I have time on my hands, so I will come here and talk it out. I hope you do the same--document this moment in time. In the best case scenario, all of this will seem dramatic and unnecessary. And in the worst case?

I didn't spend a lifetime curating a personal library of human disaster for nothing. Someone has to tell the story.