The Privilege of Disease

The cliché: You only live once. We hear it all the time. Mindlessly in one ear, out the other. Maybe you are thinking about whether or not to splurge on a piece of furniture. Perhaps contemplating taking a hooky day from work. But what if you really stopped to think about this concept? Stop. Think.

My version of this cliché is more of the feline nature. 9 lives. If not for divine luck, I should be dead. Twice. 2 down, 7 to go. My first cancer was detected on a fluke. 5 years before baseline testing, and far before a lump could be felt.

My second cancer grew on top of a mastectomy. A wildly rare situation. It was caught because I am a hypochondriac (valid) and insisted I see my oncologist every 3-4 months, instead of every year as it was recommended after the 5 year mark.

But here I am. I’ve flown way too close to the sun more than once and, if we are being literal, I am about 36,000 feet closer to it right now on a transatlantic flight.

I write to you from somewhere between Ireland and Iceland, on my way home from Italy where I spent the last 13 days with my family and some dear friends.

If you have been reading my words, whether here in blog form or on TikTok, you know my plight. 2 cancers before my 43rd birthday. The death of my vibrant father to esophageal cancer, within 7 months of diagnosis at the age of 65. Mom with early onset Alzheimer’s. A veritable who’s who of tragedy.

On this flight I just watched a documentary by Mark Manson entitled, The Subtle Art of Not Giving a Fuck. I love documentaries (and the word fuck) so I figured it would be a winner. Before watching the film I already knew I would be writing on the flight because I have something clear I want to say, but the movie gave me a direct springboard to get to the point.

Manson says, ‘After every bad thing that happens in our lives, we have a choice to make. How are you going to react to it? How can I make this meaningful? What can I do about it, and how can I move forward?’

These are some giant questions and I have some immediate answers that I won’t dwell on because I have written about them ad nauseam. I have chosen to react to my bad things by writing about them. This exorcises them from my sole custody and, I’ve found, allows others to find a resting place for their own similar feelings.

How can I make my feelings meaningful? Well, I hope by being so candid with my traumas and how they affect me and my family, it shines light on others’ feelings and validates them. I also feel deeply drawn to a life of service to the cancer community.

And about moving forward- well there a about a million answers to that. Allow me to list some:

  • I quite literally wake up and put one foot in front of the other
  • I simply allow time to pass when things start to feel too hard
  • I focus my time on connections that mean something to me
  • I listen to my gut more and stand by those feelings, whereas in the past I might easily back down
  • I recognize death as an absolute reality. I think about the finiteness of it and know that what I do today matters deeply. That doesn’t mean that a day in bed binge-watching Netflix is a waste. It means it is a choice that I am allowed to make, based on what feels right.

One thing that answers all three of Manson’s questions is the vacation I am returning from right now dubbed: The Trip That Cancer Built.

You know what is a lot easier to do after you have used up 2 of your 9 lives? Spend money on things that matter to you. This will be different for everyone, but for me, it means travel. Not only selfishly for me (though that does weigh heavily-I was the cancery one, goddamn it), but for my children. I’ll be damned if all they know is the American way of life.

The Trip That Cancer Built cost a lot of money. Like a whoopsies! amount of money. Did it fall within the limits of our yearly income after necessary expenses? Maaaayybbeee, if we only ate canned beans the rest of the year. But the point I’m getting at is that IT DOESN’T MATTER.

My lifespan is statistically more precarious than most people’s and, let’s be real, we could all be swallowed up by a volcano tomorrow (Mt. Etna is no joke- that chick be spewing…). Simple fact is that death and I see each other, and if I want to go to Italy, I’m going to Italy. I mean, how likely is it that all three of our kids will go to college anyway, right?

Also of note: I used this trip to scatter some of my dad’s ashes (not much, a few fingers worth at most, too scared to travel with more) in the place he loved most, Italy. He taught himself the language as an adult, as his love for the country was so deep. He is the reason I became an Italian major in college. Didn’t know that about me? I had the two least useful majors in all of human history, modern dance and Italian translation. I had cool parents, what can I say?

I scattered some of him in Assisi, his favorite Italian town. He and I have been there together twice. The rest were left on Isola Bella in Taormina. I figure those few fingers worth of him will love the view of the Italian cliffs, seas and German tourists that he loved to impersonate.

Dad is scattered on that island on the right
Dad is also scattered here in Assisi

Now I realize this vacation is reeking of privilege. I was raised by people with money and I was left a little cash when my dad died (not a recommended way to make money). I can scrape pennies together to make a trip like this happen, and I am aware that this is not the case for many. I see it. I get it. Had to acknowledge it.

But for me, the privilege isn’t the money or resources. It is the disease itself. Cancer allowed me to take this trip. Cancer grabbed me by the collar, roughed me up in a back alley, kicked me while I was down, but ultimately handed me a beautifully wrapped gift.

That gift is knowing there is never going to be enough money. Or enough time. But there is joy to be found if you can forget the camps, the carpools, the enrichment programs, hell, even your job for a while and prioritize feeding your desires (& in our case our bodies, I have to be up a solid 5-10 lbs, thank you, pasta).

On this trip we stayed in a tower built in 917 overlooking the Umbrian countryside. We learned to slow cook Italian food from a ‘mamma’ on a sustainable farm. We biked around sunflower fields, we walked amongst ancient Roman ruins, we swam in the Mediterranean Sea.

We also screamed at each other while stuck on tiny Italian streets after an extremely problematic wrong turn. We got in fights about how early we needed to wake up to make a flight. We tired of one another’s company only to be genuinely delighted to wake up and be together again the next day. What a privilege to be able to argue and make up among the olive trees.

Manson says, ‘It (in my case, cancer) is not my fault, but it is my responsibility’. ‘It is our responsibility to interpret our pain.’ I feel a great deal of responsibility to interpret my pain. Into my writing, public service and most importantly, self service. I have three young kids to raise. I cannot allow myself to interpret my pain in a way that further traumatizes them. Instead, I choose to see my disease as a privilege that is allowing me to not only be alive, but truly live.

Don’t wait for your brush with death to start living. Take the trip you can’t quite afford now. You are alive today.

Tante belle cose.

11 Comments Add yours

  1. Jenny Paul's avatar Jenny Paul says:

    Grace this was a beautiful post. 🩷

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  2. Betsy Moran's avatar Betsy Moran says:

    I’m so happy that you went to Italy. I’ll bet you dad was hovering over your head the whole time. I’m very glad that you scattered some of his ashes there in his favorite place on earth.

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  3. Unknown's avatar Anonymous says:

    Carpe diem – always try to remind myself of that. And you are a constant reminder of the importance of living, every single day. So very happy you had an amazing trip. Look forward to reading about many more!

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  4. Kate's avatar Kate says:

    I am going to save this. Print it. Have it tattooed on my a….okay no tattoo. But I will read this everytime I am tempted to put off something I really want to do. Cancer X2 for me as well. Brilliant writing, so glad to hear from you again.

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  5. SALLY ABRAMS's avatar SALLY ABRAMS says:

    Grace, you are gorgeous. Your family is beautiful. I still can see you in First Grade. What a moving post and what a wonderful trip. Keep on living the life. Sally Abrams (83)

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    1. Howard Schultz's avatar Howard Schultz says:

      Thank you Grace. So meaningful, heartfelt and beautifully written.

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  6. Janine Farmer's avatar Janine Farmer says:

    How perfectly wonderful

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  7. Melinda deuster's avatar Melinda deuster says:

    You have a way with words that speaks deeply of your self that rings true for many. Thankyou for sharing yourself this way. I’m going to find that documentary. I too have had several traumas that I’m living thru and am finding meaning in the survival , in the living. Love to you grace. You are an inspiration by being you. ❤️

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  8. It’s joyous and so gorgeously written…and should be essential reading.

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  9. Claire Nass's avatar Claire Nass says:

    Just landed in Greece with all my kids – taking the vacation I can’t afford because I’ve seen similar things to what you have experienced…..your post is so beautifully written as always ❤️

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  10. Claire Nass's avatar Claire Nass says:

    Just landed in Greece with all my kids – taking the vacation I can’t afford because I’ve seen similar things to what you have experienced…..your post is so beautifully written as always ❤️

    Like

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