It’s never a good sign when I’m reading while walking down the stairs. This happens in degrees: First I’m reading a really good book that I can’t put down. Later I’m just reading the news, which progresses into scrolling social media, all while willing myself not to trip. But how many times have I asked my children not to read while walking down the stairs, and why am I doing that very thing?! Why am I not noticing the small moments, the cat toys left on the stairs, the feel of my feet on the bare wood, the smells from the oven wafting into the stairwell?
I think about it. And I realize it’s been a hard several months. There have been so many big moments that the small ones have been hidden, hard to recognize. This is what it felt like:
It started in May:
My fastest Mother’s Day half marathon!
The next day: a scratchy throat. I hydrate more. I get a Covid PCR test at work. My rapid test at home is negative.
The second day after: PCR comes back positive
I am pretty sure I got it at work. Employee health tells me I have to take 20 days off because I am immunocompromised. I get workers comp.
Miserable few days, but Paxlovid fixes that quickly.
My test is negative at 11 days, still have 9 more days to go before I can go back to work. I wheedle the infectious disease docs, my colleagues, but they won’t change the policy for me
Shortly after I meet a doctor in New York City—because actually the series of events started in February when I was hospitalized for an intestinal blockage. The blockages used to happen every few months but mostly I took care of them at home and got a stricture, or narrowing, opened up three or four times a year. This one time last February though, I couldn’t treat myself through it so I decided it was time to see a specialist.
The doctor in New York is an expert in j-pouches. The World Expert. He’s written almost all of the articles.
He schedules me for a scope.
I go back to the city a few weeks later. I have an amazing Indian food dinner on the upper west side with my cousin and aunt, some of the best food I’ve had.
The next day I go for the scope. What I have isn’t actually a stricture. Instead my intestine, the J-pouch, is twisted on itself and that’s what’s been causing the narrowing, the blockages. The World Expert slices open the twist. I head back home the same day.
That twist is a rare thing. The only information I find about J-pouch twists is one sentence in an article he wrote. There’s nothing more.
The next day over zoom the doctor tells me I can try stopping my immunosuppressant medication. See what happens. Maybe the twist was causing the inflammation.
I go on two vacations first, including my first airplane flight since December 31, 2019.
After the vacations I stop my medication.
I feel so good. Normal. No longer immunocompromised during this forgotten pandemic. What freedom!
Then, two months later as the last vestiges of the medicine exit my system, my inflammatory bowel symptoms are back. I eat noodles and pepto bismol and not much else.
My home GI doctor scopes me and she confirms that I’m inflamed. I agonize over what to do. My old medication has a risk of lymphoma with long term use. I opt to start a different one because one cancer is enough in a lifetime, The new medication is an IV infusion, not a daily pill. Not so convenient.
But it does work. In the meantime a loved one is diagnosed with pancreatic cancer, upending our lives. Then my mom has knee surgery and there is no way to see her afterwards due to the snowstorm of a century in her hometown. The airport and the roads leading to her house are closed. For days.
A week later, though, it is 2023. There’s hope.
Hope that I will see the small moments, feel the stairs beneath my feet, feel the joy from having good health and loved ones at my side.
Now it is just over a year since I was hospitalized. I ran nine miles today. For me the only way to get through that distance and time is to focus on each individual moment: the rhythm of my feet, a phrase of music, the patterns of sun and shadow on the pavement.
You are an amazing woman❤️
div dir=”ltr”>So honored to have known you those brief years
Thank you Diane!
Wow! Sending hugs! I
That is a tough year. I am glad things are looking better and that you are feeling better!
Thank you Karen!