Tim – Page 36 – In the Woods

an explanation for all the confusion and difficulties in your life

How do you explain to the people around you that what you need now is to just crash and do nothing for a while until your head feels normal again, when you don’t even know what’s wrong with yourself? … I think it’s important to keep in mind that when we define the severity of a person’s Autism, it’s only a measure of outward behavior and doesn’t really reflect how much one is affected by the condition internally. Those of us who appear to have low severity may actually need more than is apparent to the eye. … Sometimes I think of myself as part of a lost generation (or generations), the ones who had to go through life with Asperger’s unknowingly. And I’m hoping that in the future, with better education and understanding, the Aspie youth of the future will have a completely different experience. … It’s a nice feeling — a relief — to finally find an explanation for all the confusion and difficulties in your life, but it would have been even nicer to have known it all along.
~ Michelle Vines
(Asperger’s on the Inside)

Yesterday I spent the day reading and then shredding all the journals I wrote when I was in my late 20s and early 30s. (I’m in my early 60s now.) Something I’ve been meaning to do for a few years because there was a lot of very personal stuff in there.

What was strikingly revealed to me as I read is the painful struggle I was having with autism for years, trying desperately to figure out what was “wrong” with me. The evidence of impaired executive functioning jumped out at me on almost every page, so obvious from what I know now, so baffling back then. I wanted so badly to live like a “normal” (neurotypical) person, to figure out how to get along in this world.

As I read I kept saying under my breath, “no wonder you were so damn tired all the time.” It’s exhausting trying to make your brain work with a different operating system. I can’t help wondering what my life might have been like had I and my parents and my husband known about autism and if I had had some meaningful support. But it IS a huge relief to have it all make sense now.

tip of the iceberg

“A Late Riser’s Miserable Breakfast” by Carl Larsson

This is one of my favorite Carl Larsson paintings. I think it’s a combination of the appealing colors and the gentle reminder that some days just seem to start off on the wrong foot. For kids and adults!

There are 68 detected cases of COVID-19 in Connecticut now, all of them west of the Connecticut River in the western four counties, bordering New York. So far the eastern four counties, including our New London County, have no detected cases. But our state epidemiologist estimates there are 100 undetected cases for every detected case, so we are seeing just the tip of the iceberg. The suspense is getting to me. How bad will it get?

It was different in the last pandemic. The 1918 Influenza Pandemic entered Connecticut through New London.

In Connecticut, the state’s busy ports, and particularly New London’s Navy base, provided an easy point of entry for the disease. The state’s first recorded case of influenza appeared among Navy personnel in New London on September 11, 1918. By October 25, the State Public Health Service reported 180,000 cases. It appears the outbreak, after originating in New London County, moved to Windham and Tolland Counties and then continued on south and west to New Haven, Hartford, Fairfield, and Litchfield Counties. Hartford, New Haven, Bridgeport, and Waterbury recorded the most flu fatalities in the state, but smaller towns like Derby and Windham were also hard hit by the disease, with even higher death rates per thousand than in the larger cities. The war ended in November 1918, but the flu epidemic raged on.

By February 1919, the flu had finally subsided, leaving 8,500 dead in Connecticut.

~ Tasha Caswell
(Eighty-Five Hundred Souls: the 1918-1919 Flu Epidemic in Connecticut ~ ConnecticutHistory.org)

Reading used to be my favorite occupation but in recent years I haven’t been able to do much of it because it would put me to sleep, even in the daytime. It’s been very puzzling to me why this would be so. But I think I might have finally figured it out. I keep losing my place when I finish one line of text and try to move down to the next. It was exhausting trying to focus and find the next line. Yesterday I tried holding a bookmark under the line I was reading and then moving it down to the next one. It worked! I read a whole chapter with ease! Looks like I can add reading back to my list of self-quarantine activities.

So now I am reading These Fevered Days: Ten Pivotal Moments in the Making of Emily Dickinson by Martha Ackmann. It’s nice to escape from today’s reality, even if for a few hours at a time.

self-quarantine

There are 12 detected cases of COVID-19 in Connecticut now, and no doubt there are plenty more undetected cases. Our self-quarantine continues. A few days ago we drove down to the beach and encountered this solitary gull withstanding the wind. It was good to get some fresh air.

The days are passing slowly, hours filled with jigsaw puzzles, yoga, chores, cooking, watching movies, video-chatting with family. Anxiety comes and goes. Hoping we are doing our share of “flattening the curve.”

Flattening A Pandemic’s Curve: Why Staying Home Now Can Save Lives

sitting ducks

Prepare, don’t panic. Difficult to do when one feels there is no available protection against the spreading new coronavirus. But we are obediently following the directions given by authorities. Doing something feels better than doing nothing. Two weeks of food and supplies — check. Now what?

So far there are no detected cases of COVID-19 in Connecticut, although surrounding Rhode Island, Massachusetts and New York have some. Apparently there is no evidence of widespread transmission — yet. It’s a creepy feeling, waiting and wondering…

An email came from my insurance company yesterday, outlining preventative measures and assuring me that should I get sick I would be covered — shouldn’t that go without saying? — and that the test would be covered, too.

I am, reasonably, I think, concerned because we seem to be in the population group most at risk for dying of this, over 60 and with underlying health conditions. On the other hand, our grandchildren will likely be fine even if they do come down with it. Uncertainty reigns, as always.

So I wonder this, as life billows smoke inside my head
This little game where nothing is sure
Why would you play by the rules?
Who did? You did. You…
~ Dave Matthews
♫ (Dodo) ♫

diagnosis: radiation proctitis

Radiation proctitis (and the related radiation colitis) is inflammation and damage to the lower parts of the colon after exposure to x-rays or other ionizing radiation as a part of radiation therapy.

In January and February of 2018 I had three radiation treatments for endometrial cancer, following a hysterectomy. In July 2018 I began having distressing gastrointestinal symptoms which kept getting worse for the next 18 months. Now that I finally have a diagnosis I decided to create this narrative to keep track of how it all unfolded.

At first I made no connection between my symptoms and the treatment, assuming that the irritable bowel syndrome that seems to run in my family was progressing. Dietary changes brought some relief at first but things kept getting worse.

In June of 2019 I described all my symptoms to the radiologist who had treated me but she dismissed my concerns, she said it sounded like irritable bowel syndrome that was made worse by the emotional stress of having cancer. Not anything related to the radiation therapy. I’m still angry about this.

In August of 2019 I saw my oncologist who agreed with the radiologist. Meanwhile I kept eliminating foods from my diet and looked into stress management. No signs of cancer returning but could worrying about the possibility really be causing all this? If I was worried it was definitely subconscious.

Early in November 2019 granddaughter Katherine came to visit us for three wonderful days. We had so much fun with her! But on the last day our visit was cut short when I had a very painful attack of ischemic colitis which landed me in the emergency department, getting all kinds of tests and a shot of morphine. It took me two weeks to recover, although the remaining gastrointestinal symptoms were worse than ever.

Tim spent some time searching for a new gastroenterologist and found an all-female practice. I took a chance and am so pleased with my new doctor and her APRN. They listened to my concerns!

A colonoscopy was scheduled for December 18 and we made it to the clinic driving through an ice storm. When I woke up afterwards the doctor told me my intestines were definitely damaged from the radiation. Physical evidence. Tears of relief ran down my cheeks, not for the news, but for feeling validated. It wasn’t psychosomatic.

On January 3, 2020, on my follow-up appointment with the APRN, I received the official diagnosis, radiation proctitis. I also have radiation colitis on the other side of my pelvis, where the small intestine joins the large intestine. It’s permanent. It’s a relief to know I’m not crazy and my focus is shifting from trying to “cure” my symptoms but now to finding ways to manage and live with them. I’ve started one med which has helped me enough to make a trip to the grocery store possible. (I hadn’t been out of the house, except for medical appointments, for two months!)

Another med the insurance company won’t cover. Still waiting to see what, if any, substitute can be made. The strategy is to reduce the inflammation as much as possible.

My goal is to take a walk in the woods one of these days. And to have supper at the beach with my gull friend this summer.

ethnicity estimates

Barbara’s latest ethnicity estimate from Ancestry DNA

Eastern Europe & Russia 43%
England, Wales & Northwestern Europe 28%
Germanic Europe 20%
Ireland & Scotland 3%
Baltics 3%
Norway 2%
Italy 1%

We recently added more ethnicity populations and communities. Based on this update, you might see changes to your results.
~ Ancestry.com

Tim’s latest ethnicity estimate from Ancestry DNA

England, Wales & Northwestern Europe 71%
Ireland & Scotland 21%
Germanic Europe 6%
Norway 2%

The last time we examined our DNA results was in 2014, about 5 years ago. (penetrating the past) We both have some interesting changes in our results!

For me, the Italian connection all but disappeared, which seems about right because I could never find one on the paper trail. Norway shows up solidly in about the right amount for my 3rd-great-grandfather, and Ireland as well, for his wife, my 3rd-great-grandmother. My father’s Slavic (Ukrainian) origins gained a larger percentage in my DNA. I’m intrigued with a new category, 3% Baltics (Estonia, Latvia, and Lithuania).

Interestingly, Tim also seems to be 2% Norway. But he’s a whopping 92% England, Wales, Scotland, Ireland and Northwestern Europe. And this analysis turns up absolutley no European Jewish ancestry, in spite of having a Jewish maternal grandfather. ~~Still a mystery~~.

So, on Christmas Eve, we were sitting around our table working on a jigsaw puzzle and listening to holiday music with my sister and brother-in-law. I had made the shuffling playlist for my iPod years ago and had included tunes from many traditions. When the Dreidel Song came on my sister asked Tim if his family had celebrated Hanukkah when he was a child. The answer was no, although his stepgrandmother often brought Jewish foods to the house during the holidays. And then, much to my astonishment, he mentioned that his maternal grandfather had converted to Judaism. What!?!

This definitely would explain the lack of European Jewish ancestry for Tim!

It never ceases to amaze me how memories are stirred up in the oddest ways. And how a non-genealogical question lead to a spontaneous answer containing an important clue, which led to the solving of a genetic conundrum.

It will be fun to see any future changes in our DNA analyses as the scientists fine-tune the estimates as their population samples continue to grow.

autumn in the quiet corner

Every autumn we take a leaf-peeping drive up Rte. 169 in the “Quiet Corner” of Connecticut. The state highway winds slowly through scenic countryside but it’s almost impossible to stop and photograph anything because there are no breakdown lanes on the side of the road. We stopped at a cemetery, however, and found two beautiful trees, one in full fall color and one with about half of its leaves already down on the ground.

We were headed for the Vanilla Bean Café in Woodstock where we enjoyed a lunch made from local farm-to-table ingredients. We missed coming last year because we were in North Carolina welcoming Finn into the family. (The little explorer has started walking! He’s been raring to go since before he was born, so it’s not too surprising. He’ll be a year old on November 1st.)

After lunch I was disappointed to find the Christmas Barn was closed for the Columbus Day holiday. And then Tim was very disappointed to find that Mrs. Bridge’s Pantry had gone out of business. A lot can change in two years. But we found a new antique place, the Rusty Relic, which we both enjoyed exploring before we set out on the return trip home.

Recently I have discovered cassava flour. And the discovery has come at a most opportune time because my gut problems have been getting worse over the past year. Bad enough to send me to a gastroenterologist. In addition to sticking to the paleo diet, I am now incorporating a low-FODMAP diet into the plan.

10.14.19 ~ along Rte. 169, a new antique store, one of three buildings

I’ve always been sensitive to wheat and milk and because of this have not had pancakes in many years. For a while I could eat some gluten-free pancakes, but they were often made with almond flour and I’ve developed a sensitivity to nuts. But cassava flour is made from a root vegetable (thank goodness I can still eat those!) and I found a paleo recipe for cassava pancakes made with coconut milk. (grain-free, gluten-free, dairy-free, nut-free) We tried them and couldn’t believe how good they tasted!!! Tim even said he didn’t think he could tell the difference between them and wheat pancakes.

So now we’re enjoying a new (revived) tradition, Sunday morning pancakes. And that is part of what was very nice about our autumn drive this year. We had cassava pancakes at home before we left and felt like real New Englanders for the rest of the day, taking in all the sights and sounds and tastes of a crisp fall day.

feathered stomachs borne on mighty legs

Emus are little more than feathered stomachs borne on mighty legs and ruled by a tiny brain. If an emu wants one of your sandwiches, he will get it, and then run away. He cannot help you with your sudoku.
~ Richard Fortey
(Horseshoe Crabs & Velvet Worms: The Story of the Animals & Plants That Time Has Left Behind)

Last weekend we stopped by Creamery Brook Bison looking for local bison meat. Nobody was home, except this curious creature, who came over to its enclosure fence to check us out.

The more I talked to it, the higher it lifted its head. Wonder what was going on in that little bird brain. Thinking about me as a potential source of food, no doubt. I don’t think it gets its picture taken very often.

portrait setting

Last night we went down for our last supper from the concession stand at the beach. (Tonight will be the last night it is open but it is supposed to rain today so we won’t likely be going down there.) As we were waiting for our order my gull friend flew to the post nearest Tyler House to greet us. I took a few pictures and then was suddenly inspired to try out the portrait setting on my camera. The gull was happy to keep posing.

9.1.19 ~ this is where he was standing for his portraits

When some people approached by land and a noisy little motorboat came close to shore, he took off and didn’t come back while we were eating on our bench. But I was grateful for the short visit we had.

9.1.19 ~ a young ring-billed gull who watched us eat our supper

I expect we will bring our own food down to the beach on warm autumn days, but I have to say, this was the first summer I’ve actually enjoyed in a very long time.