Category: family

mass online

I had hoped to attend vigil mass yesterday afternoon but the level of dysautonomia, pain, and fatigue I was having made it inadvisable. It was cold and I didn’t think that I could handle the amount of walking and being upright involved, even if I went to a nearby church rather than my own church which is a further drive.

Instead, I participated in an online mass through Heart of the Nation. While a local station televises the mass on Sunday, I was able to access it online on Saturday. One of my favorite homilists was presiding and viewing online gives a bit more time so I got to hear more music than in the televised version.

Back during my mother’s illness, she used to watch mass on television when she could no longer attend in person and visitors from the church would bring her communion from time to time. Eventually, I was given a pyx so that I could bring the Eucharist to her myself. It is mentioned in this poem, first published by Wilderness House Literary Review:

In my purse

cheap pens I won’t miss if they’re lost
my wallet, heavy with too many coins
ibuprofen for headaches
a pack of tissues
hair ties for windy days
a dog-eared calendar
my license to drive
a crumpled shopping list
emergency cough drops
a pyx
my favorite mechanical pencil, extra lead
credit cards – insurance cards – loyalty cards
a laminated prayer card from my mother’s funeral

One of the blessings of the pandemic shutdowns for me was the re-discovery of online or televised mass when I couldn’t attend in person. It’s comforting to have that alternative on weekends like this one.

I may need to take it more often in the future if we can’t get better control of my symptoms.
*****
Join us for Linda’s Just Jot It January! Find out more here: https://lindaghill.com/2026/01/25/daily-prompt-jusjojan-the-25th-2026/

SoCS: Top of JC’s Mind

I started Top of JC’s Mind in September, 2013, and, sometimes, I like to take another look at some of my older posts.

It’s an eclectic blog with lots of topics and you could rummage around in old posts, too, if you like.

Sometimes, I am looking back for specific topics or events. There are also threads that weave in and out over time.

For example, I wrote a lot of comments on the eventually successful campaign to keep shale gas fracking out of New York – which had a brief, ugly reprise in the more recent effort to add CO2 fracking to our state ban. There are also renewable energy posts, including posts on heat pumps, solar panels, and EVs. We are proud to be an electrified household powered by the sun!

There are poetry posts, including posts from my residencies with the Boiler House Poets Collective at the Studios at MASS MoCA which began in fall 2015.

I’ve written quite a lot of COVID/pandemic posts. I’m humbled that one of the local historical societies has been printing those posts to place in their archives for possible research in the future.

The most poignant posts for me are the ones that involve my family. I wrote about my parents in their final years. Those posts were helpful to me at the time as a way to process what was going on but are also good to look back on from time to time.

While I’m admittedly not a great photographer, I’ve tried to include some photos. It’s handy that, during the years of Top of JC’s Mind, we have had family living in Hawai’i, and later, London. Even an amateur can take decent photos in those settings. I also like to take photos in the western Massachusetts/Southern Vermont area where I lived as a child and teen.

So, I invite you to take another look at Top of JC’s Mind.

Or a first look, if that is more applicable…
*****
Linda’s prompt for Stream of Concsiousness Saturday this week is “take another look.” Find more information on joining us for SoCS and/or Just Jot It January here: https://lindaghill.com/2026/01/23/the-friday-reminder-for-socs-jusjojan-2026-daily-prompt-for-jan-24th/

a diagnosis (finally)

While I would usually be posting on the Stream of Consciousness Saturday prompt today, I’m opting instead for doing an edited Just Jot It January post.

Okay, this is going to be more than a “jot” but will be something that I feel compelled to give an update to the usual crowd of SoCS participants.

Since March, 2024, I’ve been having a growing array of odd symptoms – I won’t bore you with the whole list – that have been interfering with my ability to function. The brain fog and fatigue have been especially problematic.

I’ve posted variously about these symptoms and their impact on my life. Along the way, I’ve been diagnosed with a number of conditions that affect a certain body part or system but have always felt that these different symptoms were related.

This week, I finally have an answer. I’ve been diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS). hEDS is an inherited connective tissue disorder. Because we have connective tissues throughout our bodies, it impacts many different parts and systems of the body. Each individual with hEDS has their own unique combination of symptoms which may change over time. While hEDS follows an autosomal dominant inheritance pattern, the specific genes underlying it have not yet been identified. Because there is currently no test that detects hEDS, it tends to be missed, especially because there is no medical specialty dedicated to connective tissues.

Just in case you were wondering how a 65-year-old gets an initial diagnois of a genetic disorder. My (embarrassingly large) number of medical practitioners have spent the last almost two years ruling out various diagnoses or diagnosing component parties of hEDS without putting all the pieces together. I’ve learned from patient advocacy groups that there are other people who were not diagnosed until their fifties, sixties, or even older.

I actually was pretty sure I had either hEDS or the related condition, hypermobility spectrum disorder (HSD), 19 months ago. A close family member was facing an unusual medical condition that required surgery and her doctor realized that her connective tissues were not responding in a typical way. She suggested that there might be a connective tissue disorder present and advised seeing a geneticist physician. In assembling a full family history and researching hEDS/HSD with my family member, I felt that my body made sense for the first time.

I was excited and told my primary care doctor, but she felt we had to rule out every other possible cause of my symptoms first. Even when my family member was diagnosed with hEDS last June and the genetic connection was clear, my medical team was still not making the diagnosis.

That changed when I was finally able to see a nurse-practitioner who specializes in integrative/supportive medicine. With my records, family history, symptoms, and physical exam, she was able to diagnose me with hEDS and, importantly, to order additional tests to help pinpoint the cause of my current symptoms. She also knows where to send me for treatment, which will be especially important if I need to have surgery.

hEDS affects more women than men, so, no surprise, the symptoms tend to be written off as stress- or hormone-induced. I particularly remember having to explain to a doctor that I could tell the difference between brain fog and writer’s block. I also faced skepticism that I could be this old without any medical professionals realizing I have a genetic disorder, but, as others have pointed out, that should be a reflection on them, not me. Education about inherited connective tissue disorders has been lacking in medical education but I am hopeful that new research will break through and raise awareness so that it’s easier for people with hEDS/HSD to be diagnosed and treated appropriately much earlier in their lives.

I am trying to do my part by sharing my story and accurate information. As my treatment plan develops, I’ll post about it.

I must say, though, that the people who have been most helpful to me have been my physical therapists. Although my lead therapist realized that I have a connective tissue disorder and has been helping me to strengthen muscles and improve my posture, along with heat, massage, and stretching, she isn’t allowed to make medical diagnoses. She is also happy that I finally have an official hEDS diagnosis. The hope is that the additional tests I will now have will give us more data on how best to address my symptoms.

Obviously, a genetic disorder like this can’t be cured, but we should be able to improve at least some of my symptoms. For now, it feels good to have validation that there are reasons why my body reacts as it does. No more doctors implying that it’s all in my head or that I just need to reduce stress. Maybe some of them will even be moved to learn more about inherited connective tissue disorders.

They may even find that there are a lot more of us than they realized…
*****
For more information on joining in with Stream of Consciousness Saturday and/or Just Jot It January, please visit Linda’s blog here: https://lindaghill.com/2026/01/16/the-friday-reminder-for-socs-jusjojan-2026-daily-prompt-for-jan-17th/

Epiphany

[Note: I wish I were writing a post addressing the murder of Renée Good and the horrible actions of the Trump administration both in the United States and throughout the world but I don’t have enough brainpower to do so between the brain fog and jet lag, so something lighter today. I drafted this and had intended to post it for January 6th – itself a fraught date for those of us in the US – but our travel complications derailed my intent to do so.]

On January 6th, Catholics in the UK celebrate Epiphany, observing the visit of the Magi to the infant Jesus. This ends the twelve days of Christmas, although the Christmas season continues liturgically through the celebration of Jesus’s baptism in the Jordan River by John.

Interestingly, in the United States, the observance of Epiphany is moved to Sunday rather than celebrated on January 6.

One of the most meaningful parts of our trip to London has been attending Mass with daughter E, son-in-law L, and granddaughters ABC and JG. I especially have enjoyed the Saturday vigil Masses because L has served as organist with E as songleader.

I’ve always loved listening to E sing. She was very musical from the time she was young and always sang in choirs at church and school. She majored in music in college and studied voice there. Because we live so far away from each other, I don’t get to hear her sing often, so it was a treat to hear her – and sing along – at Masses during our trip.

This post is part of Linda’s Just Jot It January. Join us! Find out more here: https://lindaghill.com/2026/01/09/daily-prompt-jusjojan-the-9th-2026/

explaining the travel Jot

On Tuesday, I jotted that it was a long travel day.

Except with a lot more Os in “long.”

We were heading back from London to Newark and hit a few snags.

First, the simple route from our hotel to Heathrow on the Elizabeth line was shut down and the diversion took way longer than we expected. Still, we arrived at Heathrow in plenty of time. Unfortunately, the wheelchair assistance that had worked so well on our flight out was not very efficient with our departure. T and I were literally the last people onto the plane before they closed the doors. Then, our departure was delayed because there was a rare snow shower and the plane needed de-icing.

Still, we made up time, albeit with some turbulance, and arrived just about on time in Newark. The wheelchair assistance there was very good but we ran into trouble getting the van to take us back to where our car was parked, which meant that we started to head for home in the dark during rush hour. While we had hoped to make the 180 mile (290 kilometers) trip home that night, we were too tired and jetlagged to do it, so we crashed at a hotel along the interstate and finally made it home around noon on Wednesday.

Now, we are all trying to get back to Eastern Time. I’m notoriously bad at adjusting to time changes, so it will probably take a while.

This (longer) jot is part of Linda’s Just Jot It January. Join us! Find out more here: https://lindaghill.com/2026/01/08/daily-prompt-jusjojan-the-8th-2026/

SoCS: slowing down

I used to walk fast, partially due to having much shorter legs than spouse B so that even when he would slow down to walk with me, I’d still need to speed up.

Now, I am having a number of issues with my balance and need to slow down so I can concentrate on staying upright and walking relatively straight. Sometimes, I need B’s – or someone else’s – arm to help me stabilize. This is especially likely later in the day as fatigue also becomes a factor.

So, I’m slower these days but grateful to be able to be up and about, at least, on most days.

Linda’s prompt for Stream of Consciousness Saturday this week is “fast/slow.” For more information on how to join SoCS and/or Just Jot It January, please visit here: https://lindaghill.com/2026/01/02/the-friday-reminder-for-socs-jusjojan-2026-daily-prompt-for-jan-3rd/

Welcome, 2026!

After a rough 2025 for many of us, I hope that the new year will bring an increase in peace, security, freedom, and safety for each person.

We began our new year’s celebration yesterday with a midday dinner with son-in-law L’s parents. So much delicious food!

We opted to return to our hotel early in the evening before things got rowdy. We figured we could watch the festivities in Central London on the television if we managed to stay awake. I’m sure at E and L’s new home in East London there will be a lot of banging on pots and pans at midnight, along with personal fireworks. Granddaughters ABC and JG napped in the afternoon so they could be awake for the arrival of 2026.

They followed the Filipino tradition of having a bowl of 12 different, round fruits to welcome the new year.


This marks the first post for Just Jot It January 2026, an initiative organized by Linda Hill of the “Life in progress” blog. You are welcome to join in the fun at any point and can find details on her blog. I’ll write a bit more about it as the month goes on.

Happy New Year, Everyone!

One-Liner Wednesday: dragon?

While the zebra left the creche, a Lego dragon has joined the scene, along with a mushroom at the baby Jesus’s feet and a mysterious magnifying glass.

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2025/12/31/one-liner-wednesday-happy-2026/

Christmas Eve/Day

Spouse B, daughter T, and I are spending the holidays in London with daughter E, her spouse L, and granddaughters, 8-year-old ABC and 5-year-old JG. The photo above is of ABC and JG’s bedroom window decoration at dusk on Christmas Eve. Dusk comes early in London this time of year!

This is an exciting Christmas for our London contingent because they just moved into their first house of their own a couple of months ago.


Christmas Eve day was largely dedicated to finishing up gift preparation and baking cookies. B and E made lasagna for dinner, a nod to the Italian side of our family and the many years we made lasagna for Christmas dinner to accommodate E and T singing in the choir on Christmas morning because the lasagna could be assembled the day before and baked after church. For dessert, we had cookies and pandoro, an Italian sweet bread which is covered in powdered sugar and baked in a mold so that it can be cut in slices and arranged to look like a Christmas tree. This was not part of the Italian Christmas tradition that made it across the ocean to the US but it was so delicious that we will try to order it next year.

When E and T were young, every Christmas, my parents would give them Fonatanini creche figures. E’s figures were being stored in our basement but, now that she and L have their own home, we took the opportunity to bring them out to them. Here they are on the mantel, with a zebra addition courtesy of ABC and JG!


My parents, known here as Nana and Paco, have both passed away. They both got to know ABC, their first great-grandchild when she lived in the US for her first couple of years before moving permanently to London. Paco got to meet JG just once, when they were able to make the trip over from London a few weeks before he died. I love, though, that the creche figures they gave to E are part of their first Christmas in their new home. It feels as though they are blessing the house and their dear family.

I’m writing this early Christmas morning. Our plans include 8:30 Christmas mass, followed by gift exchange and an afternoon dinner at L’s parents with 20-some family gathering.

Merry Christmas to all who celebrate and wishes for peace and joy to all!