Just now, I decided to lean into the blog aspect of this blog by writing about my day today. I don’t want to always share personal essay type things that could have been written at any time. Otherwise what’s the point of having something you can update in real time? (“But Sarah, why didn’t you think of that before starting a blog to share essay type writing?” OK, imaginary critical voice in my head, you win this round!)

ANYWAY, I want to share with anyone reading how normal life can be five years after illness (to the extent that anyone’s life is normal in this profoundly not-normal world we live in).

So here goes:

I woke up and it was a chilly April day on the verge of being nice. It has been almost spring for so long that I have forgotten what winter is and what spring is and have only been existing in this liminal space between seasons that is absolutely impossible to dress for.

It was kind of sunny but crisp and I jogged for a few minutes in the arboretum before realizing that I was going to be late for a conference call if I continued much longer.

So I got ready and took the call and then embarked on the 15-minute walk to the orange line. Part of me wishes I lived closer to the train, but I also love walking through my neighborhood every day, seeing the same pickleball games and stately houses and impeccably groomed dogs.

Every morning, it’s an exciting gamble as to whether or not a beautiful, brand new state of the art orange line train will arrive or a slightly run-down train car with the seats covered in bristly carpeting and somehow, mysteriously, not arrayed in a straight line, but instead jutting in and out like crooked teeth. Today it was an old orange line train.

I arrived at Boston City Hall, a brutalist behemoth structure that the Mayor famously adores. I have to admit that since starting working there in November, it’s grown on me, with all the hidden corners and nooks and art exhibits and poems adorning the wall.

After years of doing high-pressure, high-stress communications work in government where you are always on, always ready to answer an inquiry at 11 o’clock at night or first thing in the morning, never not checking google alerts, I now have a job where I can make a big impact on an incredibly important area of Boston’s civic life (our streets!) and don’t have to feel like a steady stream of cortisol is being pumped into my veins on a minute-by-minute basis. It is the best.

I met my friend Daniel for lunch at the brand new restaurant, Zaz, on the 8th floor of City Hall, and we ate outside in the rectangular roof courtyard in the sunshine, and it was delicious.

Later, on the way home, I listened to the song Too much by Carly Rae Jepsen, on repeat, and stopped at a local market to very responsibly pick up a green vegetable. (Is it unseemly to pat yourself on the back for eating vegetables in your thirties? If it’s wrong I don’t want to be right.) Then I made dinner and caught up with an old friend on the phone and now here I am.

And in fact, I thought about Aplastic Anemia exactly twice: First, somehow, randomly on my way to the train home I thought about the two shiny, miniscule button scars on my chest from where the ports went in (no idea why) and then now, sitting down to write this post.

2 thoughts on “Today

  1. I just hit my 1 year post bmt today, and I still have phantom pains (?) from the hickman catheter in my chest. I had it removed 5 months ago or so. I don’t know what to call it other than “phantom pains” that make me want to rub that spot every so often . Not sure if that’s why you thought of yours but i can’t wait for the phantom pains to go away.

    1. Hi Alyssa! Thanks so much for sharing that – it sounds very frustrating! I can’t quite recall but I think I may have had that for a little while — it might even be lingering tenderness & not just phantom pains? Mine do not hurt at all anymore after 5+ years, but I still find it strangely cathartic or satisfying to touch the scar every so often. No idea why! Hope you are doing well now.

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