Nellie, Author at Art & Words

Piece published

Since this is a writing and art portfolio site, I thought it was relevant to start sharing my publications as they happen. I’m happy to post that today I had my poem “Still I Don’t Know You” published in the witch lit mag, Toil & Trouble. This is their fourth issue, and the theme is Memory.

Toil & Trouble is a young witch-run literary magazine. The magazine was formed in October 2022, and has published steadily, with regular issues.

Published poetry

Poetry is not usually where I focus my work; I rarely even submit poems. My poem “Something Sinister” was in HUES Magazine, a feminist magazine that was active in the 1990s. Besides that, I don’t recall the last time I did anything with poetry, so this is very cool. I am in very good company in Toil & Trouble, among some great poets.

Support your writers

Please do check out Toil & Trouble for some great writing, find some new writers to follow, and continue to support young or independent creative outlets! 🙂

As always, please don’t hesitate to get in touch with comments, questions, or just to say hi. I love hearing from visitors.

~ Nellie

A Happy Halloween

Holiday

A Happy Halloween to all! This is Henry II, so named because when I was little I had a plastic skull model I named Henry. That first Henry was glow-in-the-dark. He didn’t have glowing eyes or attached candles, but he did have individual teeth I had to glue in one at a time (they glowed too). After putting the model together, I was so pleased with him, he was given top shelf status in my bedroom. My dad, who himself had a taste for the macabre, didn’t protest. Friends of the family who visited however, did have questions. Ah well… girls were so not expected to be weird or different.

Halloween was a big deal in my house. My father insisted on handmade costumes and handmade decorations. He was an artist and set designer, and had also worked as a display artist for major department stores. He knew his stuff.

I love that during Halloween the uninhibited is welcome, encouraged. The strange, the macabre, the garish, even the tacky.

But Henry isn’t tacky, is he? Nah… And he is ever-present by my desk. A good companion with glowing eyes.

For more of my photos that suit the Halloween season, check out my Memento Mori series.

Have a happy Halloween!

~ Nellie

Photo © Nellie Levine

The Ghost House – beloved family home

Personal

This is just a little something for Halloween, about a beloved family home… and ghost house…

In the remote hills of Vermont

H.P. Lovecraft found inspiration in the remote hills of Vermont, in the same area where my great-grandparents bought over 100 acres of land and an old farmhouse in the 1950s. The farmhouse had been built in the 1800s, and at one time it had been a stage stop. It was a family house – many aunts, uncles, and cousins visited often, over many decades. I grew up knowing this farmhouse as my home away from home. I loved roaming the woods, dipping into the nearby rivers, and staring in wonder at the vast number of stars visible in the country sky. And the house itself, I loved deeply. I had great affection for its rustic qualities. This was despite its lack of hot running water.

Secret compartments and a spooky cellar

There were some spooky things about this beloved house. The stove was an old potbelly that had to be disassembled each time a visit ended. We hid the parts away in secret compartments in the stairs to the attic. This was because at one point, someone had broken in and stolen the previous stove. They removed it piece by piece, through a window. The idea of attic stairs that lifted up to reveal secret compartments seems pretty neat now, even practical. But back then it simply added an old-fashioned mystery to the house.

The cellar was short-ceilinged, with a dirt floor and giant stones for a foundation. Upon arriving for a visit, the electricity had to be turned on by going into that cellar and fiddling with antique glass fuses. It meant walking through the dark, shuttered, creaky house, finding one’s way down the old stairs, straight into the middle of the cellar. The tall house sat alone, looming over the dirt road that was not much older than the house itself.

A family get-together

Though I loved the house dearly, it did at times feel creepy. When several families of us cousins would visit together, filling the house, the energy was alive and cheerful. But when only a handful of people came to stay, it seemed pensive, at best. On one occasion, I and my boyfriend (who is now my husband), arrived at the house in the middle of winter. We had planned a visit with my brother and his girlfriend. They were to join us later. We cleared snow from the doorway, turned the electricity on, and got a good fire going in the woodstove. We settled our things and lay down for a quick rest.

Out like a light

The fire in the stove warmed the place nicely. We both fell asleep in cots set up in the living room, unexpectedly drowsy from the heat. We woke suddenly to the distinct and familiar sound of the key in the front door. Jumping up to greet my brother and his girlfriend, we were surprised when the door did not open, and around us was as silent as snow. My boyfriend reached for his glasses, which he had placed on the floor by his cot when he lay down, and could not find them. I joined him in the search, and finally found them clear across the room, past my cot. On the floor, but certainly out of anyone’s reach.

We both went to check the door. It was still locked, and it was clear there had been no one there. At that point we were getting a little spooked. The sound we had both heard was the exact, familiar – and distinct – sound of the key in the door. The glasses were inexplicably found fully across the room. The gentle silence of winter surrounding us was little comfort.

More unexplained noises

Shaking the feeling, we decided to start dinner and wait for their arrival. As my boyfriend stood at the stove, stirring, I sat by the still-shuttered window. We were just talking together easily, when we suddenly heard a loud, deep scraping sound. I jumped up, heart racing, he stopped stirring, and we looked at each other, trying to figure out what had caused the sound. Our first thought – trying to be rational, was that an animal had pulled on the outside shutter. Seemed unlikely, but a possible rational explanation. The shutters were closed whenever anyone left after a visit, and they were held tightly in place by strong hooks. My boyfriend went outside in the deep snow to take a look… no tracks, no sign of an animal anywhere around the side of the house.

Get out…?

Our second thought was perhaps a boulder had slipped loose in the cellar; it certainly would have made a loud scraping noise. It also seemed unlikely though. We both went to look and found nothing out of place there either. When we came back to the kitchen, we both felt our nerves growing on edge, and when we tried to get back to what we had been doing, we simply looked at each other and knew… I don’t remember which of us said it first, but we had both strongly felt the message, “Get out.” It was as if each event had been trying to tell us what suddenly formed as a message in both of our minds.

We started hurrying to clean up the uneaten dinner. As we did so, the feeling intensified and it wasn’t until we had driven away that we started to feel better. It was many years before the time of cell phones, and the town we were in had no pay phones, so we weren’t able to call my brother and his girlfriend until we checked into a motel many miles away. They had not been able to travel north, as something had come up, and of course, had no way of reaching us.

Unexplained activity

We’ll never know what had created those noises. It wasn’t the first time I’d heard noises in that house that were not easy to explain, and it wasn’t the first time I’d felt a little spooked there, but it was the first time the noises had been so precise, an object had been found somewhere it hadn’t been left, and such a negative energy had risen up. It was also the first time that more than one person had experienced the same things together. When describing it to my brother and his girlfriend, they both admitted having felt such unease there before, only when they were there alone as a couple, and had actually been unsure about making this visit.

Continued family visits, continued love

After that time, we had a few family visits there and all was fine (the house has since been sold and renovated). We never went back alone, and as far as I know, few people did. At one point we buried my father’s dog on the land there. My dad of course had a close kinship to the area, and his dog loved the woods there. In dreams, this house has appeared to me as “the ghost house,” where I have visited and conversed with family members who have passed away. I don’t know what the real nature of the house is… whether there really is something “other” about the place. But I am pretty sure it would have made a great setting in a Lovecraft story!

As an addendum – a cousin eventually purchased the house for his own immediate family and did some renovations. My husband and I visited a few years ago and spoke to him and his wife… He insisted, and this is an otherwise rational seeming guy, the house was haunted, and often spooked him.

More spooks…

If you enjoy spiritualism or all things haunted or ghostly, check out my post about Conjuring the Spirit World, a fantastic exhibition at the PEM in Salem, MA. And if you’re interested in the Lovecraft story set in the remote hills of Vermont, check out The Complete Fiction of H.P. Lovecraft at Amazon, which includes the tale, The Whisperer in Darkness.

~ Nellie

p.s. that is the beloved old house in the image above, dressed up a little for Halloween with some blurred edges 😉. It has since been renovated nicely and is quite beautiful. And I still have immense love for this place – if I could afford it, I would buy it myself 🙂

50th Anniversary Dungeons & Dragons Stamps

Personal

A few weeks ago my brother texted me to share something his wife had picked up for him when she was out running errands: 50^th Anniversary Dungeons & Dragons stam ps! I found this ultra-cool, and I was inordinately excited.

A long personal history

When I was around eight my older brother started playing D&D at a local bookstore. He and his friends had discovered it, and played every week. To me, who had already begun reading Tolkien, it sounded amazing, and I was itching to play. Contrary to stereotypes of boys, my brother wanted me – his little sister – to be able to enjoy the game. He began to seek out ways I could play. When the DM at the bookstore told him I was too young to join, he and our cousin formed a group that I could join. We played often, and I eventually joined campaigns that my brother and his friends ran as well, long after the bookstore games had ended. One stereotype was true: we played D&D for hours on end, easily losing track of time, stopping only to devour whatever snack our dad or stepmom delivered to us.

D&D for the generations

I continued to play as a teen, and then with my boyfriend (now husband). We then raised our daughter with a love of Dungeons & Dragons. She grew up gaming – we as a family played; D&D as well as Pathfinder and other TTRPGs (table-top RPGs), as well as board games. My family still plays together whenever we can. Sometimes I DM, sometimes my daughter does. When my brother is with us, we tend to revert to those early eighties styles of play. There are lots of jokes and laughter, often loud expressive play, many (many!) tangents, and a good dose of healthy competitiveness. Our Christmas table is often transformed into a Forgotten Realms setting these days, with graph paper, pencils, dice, stacks of rulebooks, minis, and of course, snacks.

Dungeons & Dragons Stamps

*Dungeons & Dragons boxed notecard set, from the USPS*

When I saw there were Dungeons & Dragons stamps, I expected my tiny local post office wouldn’t have them, so I rushed to the USPS website and pored over the offerings. Not only is there a sheet of twenty stamps, there are also several solid collectors’ items. The USPS offers a gift set with notecards and a sheet of eight stamps, contained in a box that can double as a dice tray. There are enamel pins, a t-shirt, a first day cover, and a commemorative panel, among other items.

*Dungeons & Dragons enamel pins, from the USPS*

I ordered stamps and a few of the collectors’ items, and will be sending some of these to my daughter and her partner (who also plays).

An integral part of my life

D&D has become so popular, which always seems surprising to me and to many other long-time players. Those of us who started playing in the seventies or eighties grew up quite used to being considered very weird. We were also sometimes assumed to be Satan worshippers. Many of us got out of D&D something that we weren’t getting from anywhere else. My brother and I had lost our mom just a few years before we started playing. I have often thought that D&D helped us both find a way to express ourselves. It brought us close-knit friendships that might otherwise have been difficult at the time. It was also incredibly fulfilling as a hobby or pastime.

As surprised as I sometimes am by the rise in popularity, I am glad to see this thing that was such an integral part of my life and emotional health growing up, has continued to be meaningful to others as well. It is now unmistakably important to many, even with the youngest generations of kids while continuing to be played by fifty-somethings like myself. And now in addition to all the other ways it has been noticed, it has its own collection of US postal stamps, recognized for its place in American culture.

Fifty years

I can and I can’t believe it has been fifty years. I can, because I know how long I have been playing, and it’s a long time; I can’t, because as kids back in 1980, I don’t think any of us would have expected to see it continue to grow as it has and still be going strong so many years on.

If you are interested in the D&D stamps, head over to the USPS Store. There are more collectibles than what I purchased, so make sure to have a look around.

As always, please don’t hesitate to get in touch with comments or questions, or just to say hello.

~ Nellie

The Spirit World

Travel

Well, that’s a loaded title, isn’t it? Last weekend my husband Gary and I took a trip to Salem, Massachusetts to see a new exhibition at PEM (Peabody Essex Museum). It’s called Conjuring the Spirit World: Art, Magic, and Mediums, and it runs until February 2, 2025. We’ve visited Salem many times and have been to PEM four or five; it’s always greatly enjoyable. When I had read about this new exhibition, I just had to go.

The spirit world

I’ve always been intrigued by mediumship – or claims of mediumship. After my dad passed away in 2022 I read several books on the subject. I’m also very intrigued by spiritualism, haunted houses, ghost hunting, seances, even the tradition of Ouija and other spirit boards… basically discussions of “the spirit world” in general. I am not a complete true believer, but believer I am. I have had too many of my own experiences to simply dismiss. But I do not immediately believe, and I do not believe without considering more concrete or reasonable explanations.

The exhibition

We arrived in Salem just after PEM opened. The museum already had a good number of visitors, and the exhibition was popular and busy. It’s actually pretty cool that there were so many people there. I think that despite our inclination to doubt before we believe, there is still at least the desire for something to believe in. We aren’t all just automatic skeptics.

The exhibition was great. We were impressed by the extent and variety of the pieces on display, and by how well each piece was presented and described. The posters and newspaper advertisements for different mediums or magicians were thought-provoking. Supposed “spirit photography” was so interesting to see, considering that people at one time truly believed it to be authentic. A photo of a child who had passed was protected by a heavy curtain, so visitors could decide whether or not to look at this object (I actually declined to look). The death mask of a very old woman was probably the most poignant item for me personally.

The curators did an excellent job selecting these pieces, as well as recreating devices that in the nineteenth and early twentieth centuries were claimed to bring forth spirits and other entities. This wasn’t quite a hands-on experience, and certainly it was experienced through a contemporary filter, but it did very much demonstrate what people would have seen.

Some major figures were represented as well. Sir Arthur Conan Doyle was apparently very much a believer. Not only that, he was a defender of mediumship as well as fairy photography. Harry Houdini was honored with quite a bit of exhibit space, and a number of famous (or infamous) mediums were of course also represented.

Memorabilia and souvenirs

I was not able to take photos during the exhibition, but I did purchase the accompanying exhibition book. Also for sale were a selection of prints of posters from the exhibition, as well as a good number of titles on ghost hunting, mediumship, and even a Salem Ouija Board (that I was so tempted to buy!). I had been hoping for a t-shirt – I have a t-shirt from an earlier PEM exhibition (It’s Alive! Classic Horror and Sci-Fi Art from the Kirk Hammett Collection) that I love – but I admit I do not need any more graphic tees!

Salem Witch Trials 1692 Exhibition

After enjoying Conjuring the Spirit World, we grabbed a late lunch around the corner, then returned to PEM to see the Salem Witch Trials 1692 exhibition.

In all the times we have been to the museum, we had not checked this one out. A smaller, ongoing exhibition, it was effective in portraying the time, and just how brutal the accused’s fates were. Much respect was shown to the accused men and women, and there was appropriate messaging regarding intolerance and injustice. The exhibition featured historic court documents, as well as recorded testimonies of the accused. There were a number of pieces preserved from victims and their families: a walking stick, a cane, a cabinet; leaded glass windows, a (beautiful) wooden door, and heavy wooden pieces of a wall from a jail cell. This last was quite moving to see; it was immense and foreboding, when considering it had held an innocent person in their final days.

I would suggest that despite its smaller size, this exhibition is a must-see for anyone interested in the witch trials. And of course, I highly recommend seeing Conjuring the Spirit World. If you can get there in October, even better for enjoying the city. Salem – the Witch City – in October is a very fun experience, and can’t be missed for a great Halloween season. I already look forward to my next trip to Salem, and to PEM.

We wrapped up our afternoon in Salem, having spent all of our time at the museum. Then we headed north to the shore. I do love Salem, and love walking around and shopping in the Witch City… but the beach was calling…

~ Nellie

A Doll Collector

Personal

I am not a doll collector. My grandmother Josephine collected dolls. She bought dolls when she traveled to other countries, she sewed soft dolls and painted their molded faces with curling smiles and mischievous eyes, she repeatedly promised me she had an ever-growing doll collection for me that I would receive when I was “old enough.” I never was old enough, but after she passed away I did find a number of dolls in her attic. I wondered if they were the collection she had always promised me. Unfortunately, many were in bad shape from being poorly stored, and could not be salvaged, but I was able to hold onto a couple peg dolls she had bought in Poland.

My mother’s doll Tina

When I was very little my mother let me play with her childhood doll Tina. This was an intimidating doll, with moving parts. I was forever traumatizing myself with it because it seemed to break so easily. One time I ended up hiding in the closet, thinking I had broken Tina for good and fearing my mother would be furious. My dad found me, and after a quick laugh and a hug, reassured me I had not broken my mother’s doll. He showed me how her eyes were simply askew, and he fixed it right away. And my mother was not furious. Still, after that I pretty much avoided playing with her.

I have had Tina since my mother passed away though. Past her prime for playing, she’s a delicate seeming doll, so she has mostly been kept in storage. Recently I have been going through a lot of old family items. I took Tina out of her box and became inspired to clean her up, possibly try my hand at simple repairs or refurbishment, and honestly, it set me on a completely unexpected course (since I am not a doll collector).

A walking doll from the 1950s

Tina is apparently (and please excuse my newbishness here, for anyone reading who might actually have experience with old or vintage dolls), a Tina toddler walking doll, by IMPCO. Her hard plastic body is jointed, she has a sound box (though I don’t recall her ever “talking”), her mouth shows teeth and a tongue, and her eyes move. There are issues that clearly need repair of some sort. Her head is very loose (having lost some kind of internal S hook along the way), her eyes close if she is tilted just slightly, and her limbs are almost dangly.

Preliminary doll clean-up

*After a short, gentle clean-up, but before doing the hair. The plastic bag was to protect the body from water while cleaning the hair (I hadn’t planned on blogging about the process!*)

Following some online advice, I cleaned her gently and tried to wash and brush her hair. The hair seemed way too brittle, even using a small metal pet comb. After an initial dipping of the hair in warm water I just let it dry and I re-braided it. I hand washed her clothes, but had to throw out her shorts and socks. After getting her all dressed again, I sat her in the living room, temporarily. When my husband noticed her he said she looked really good and I had done a great job. She no longer looked matted and dusty, or afflicted by cataracts. I can’t believe I am going to say this, but she looked pretty and happy – which is probably exactly how she was supposed to look, to the little girls who had such dolls, like my mom.

Obviously, there is much more to be done; this was just preliminary. What I would really like to do is clean her more thoroughly and repair her. I need to repair her limbs so they do not seem like they are going to just flop around or fall off. I’d like to replace the S hook inside her head so it doesn’t continually tilt alarmingly – causing her eyes to close. I would also like to figure out if I can do something to clean her hair. Her clothing could use some repairing as well. Those sleeves need stitching to give them some gathers, and I should probably iron the dress as well.

What makes a doll collector?

After I set Tina aside and gathered the little dolls from Poland, I looked around and realized there are other dolls in my house, placed here and there.

I have small hand-carved kachinas from Arizona that although they are not playthings, might technically be considered dolls. They were given to me by a family friend who collects larger kachinas, when I was quite young. I also have two Strange Dolls, handmade by a local artisan, that I have displayed over my desk. They are my only modern dolls, which I actually bought for myself. There are also a couple Annalee dolls – both gifts, one from when I was a kid.

There is a ceramic figurine my grandmother Jo had made back in the 1950s that she and my aunts called a “doll.” She had loved doing ceramics using Holland Molds, and this figure was particularly unique. Not only did she cast it, paint it, and glaze it, she created a dress for it out of lace. That is another that will require careful handling and delicate repair. I currently have no idea how to clean it.

This quick, quiet perusal made me wonder just how many dolls one must own in order for it to be a collection… Or perhaps I should put it this way: how many dolls can one own before it is considered a collection? Because it is possible that I am a doll collector after all.

As always, please don’t hesitate to get in touch or leave a comment. I’d love to hear of any great resources for refurbishing dolls like Tina, so please feel free to suggest some. Thanks!

~ Nellie

Mushrooms at Niquette Bay

Hiking

Just how many pictures do I take of mushrooms? Last month my husband and I went hiking at Niquette Bay State Park, in Colchester, VT. Niquette Bay hiking trails are full of mushrooms, mushrooms, and more mushrooms! Our hike would likely have been about an hour shorter if I hadn’t continually stopped and stooped to take mushroom photos.

*Pretty, frilly mushrooms on a log at Niquette Bay*

I admit I am not familiar with the names of the mushrooms I encounter on my hikes. At first glance, these are very pretty, frilly mushrooms. They stood out for their delicate frilliness.

Mushrooms along trail at Niquette Bay State Park — *Very cute, bloopy mushrooms along trail*

These mushrooms immediately caught our attention. As is obvious in the photo, some of the trail can get quite wet – almost boggy – hence the raised boardwalk.

*A close up of the above “bloopy” mushrooms*

I’m not sure I had ever seen mushrooms like these before!

This guy was towards the end of our hike, and by then I started to feel like I was really holding us up (no worries – there were no complaints). But, I couldn’t resist pausing for it… It’s such a striking mushroom.

Niquette Bay also has views…

Lest you think Niquette Bay is only for mushroom lovers, there are great little spots to stop on the trail, sit on a nicely placed bench, and enjoy sweet views like this. The trails there are pretty short and relatively easy – they are not tricky, they are well-groomed, and there is not much elevation gain to speak of. The trails also lead to the bay, which includes a swimming cove just for dogs (which is pretty cool, seriously).

After an incredibly difficult summer, a few hours spent hiking (and enjoying the cuteness of mushrooms) at Niquette Bay made for a really lovely time.

If you still haven’t seen enough mushrooms, you can click over to these Orange Mushrooms from Niquette Bay, taken last year.

Thanks for reading,

~ Nellie

Picking Up Where I Left Off?

Hiking, Personal

No, there is really no picking up where I left off… it would be a reasonable assumption, but in this case, too much has happened. Life changes so quickly – we all know this of course – but sometimes that change and the rapidity with which it occurs, is shocking.

Time off for a real vacation

In May my husband and I went on a much-needed vacation. We had decided to use some serious vacation time, which we rarely do, and decided to make it a road trip. It was fantastic, truly, entailing some stunning hiking in Shenandoah National Park where we stayed up in the mountains in a fabulous lodge; a few nights at Virginia Beach, enjoying time on the shore and the ease and relaxation that beach visits tend to bring; and seeing our daughter and her partner, which of course is always a highlight. At the end of our trip we stopped to see my mother-in-law for a few days.

Unexpected tragedy

I’m not going to go into details of what happened, other than to say that while we were there we needed to take my mother-in-law to the ED, where she received a terrible diagnosis, and after only a mere few weeks, passed away from her illness. Since then we have of course had a funeral, and have dealt with the responsibilities of clearing out her apartment, settling her affairs, etc.

It has been an unexpectedly very difficult summer. And of course, more grieving. The grieving process has really only just begun because the past two months have been overwhelming with busyness – too many things to take care of, too many people’s feelings to assuage, as well as family tensions, and many trips out of state to take care of things.

Home again (and not exactly picking up where I left off!)

I am home now, and rather than picking up where I left off, I am looking at the future with yet again new eyes. And yet again a sense of bewilderment and uncertainty. It seems the older I get, the less certain things become, rather than the more certain.

As always, thank you for visiting, and please don’t hesitate to reach out with questions or comments, or just to say hello.

~ Nellie

p.s. the hike in the photo above was just an easy but beautiful trail right off Skyline Drive, called Stony Man Trail. If you ever are fortunate to visit Skyline, I would highly recommend it!

A Year Full of Challenges

Personal

Well it has certainly been a while since I last posted. 2023 was a year full of challenges, one after another it seemed, and all of them came while going through the first year of grieving my dad.

Early in the year I got food poisoning while visiting the shore. That lasted longer than I’ve ever had food poisoning for, was quite awful, and has had continued, residual effects. It was followed soon after by a diagnosis of Hashimoto’s Disease. I had heard of Hashimoto’s but had never considered I might develop it myself. After that I was diagnosed with Celiac disease. Those weren’t enough apparently, and I developed frozen shoulder (fun!). And then after all of that I was sent for a bone density test, and learned I have osteopenia. I began hearing such reassuring admonitions as, “don’t have any falls, your bones might fracture more easily now!” It all quite impacted my day-to-day life, my mood, and my outlook. It also impacted my expectations for the future.

At best and at worst

My doctors recommended learning as much as I could about living with autoimmune disease. However, as wonderful as they have been, it seems doctors fail to provide that education themselves. The simple reason for that appears to be that few doctors (relatively speaking) understand autoimmune terribly well. The guidance regarding Celiac is rather straightforward. It’s something I’m already familiar with since I have a family member with it. But the guidance for Hashimoto’s sometimes seems to contradict itself, often seems to not be based on very strong evidence, and also seems to be quite individual. So that has been hard to figure out. It has all created a whirlwind at best, and an uncomfortable, sometimes unpleasant, scary, and painful roller coaster at worst.

Learning and rethinking things

I guess that’s the gist of it though, isn’t it? The worst, so far, seems to be this roller coaster of symptoms and uncertainty. I’ve had to revisit previous beliefs I had about food (like, whether veganism is good for me – apparently it isn’t, not for me), spend way more time thinking about what and when I eat or how I will afford eating a super healthy diet, address episodes of frustration and anxiety related to these new health issues, and crucially, make sure I do actually take better care of myself.

One thing I have learned is that some of these conditions can have “flares.” The term is rather new to me, hence the quotation marks. These flares can be really difficult to deal with, and sometimes cause very real stress. I’m currently mostly over the frozen shoulder, am on – I think – a steady course of healing, but am experiencing a “flare” right now. Still, I am mostly optimistic. I’ve been able to follow most of the guidance (as far as I understand it). And I’ve also been able to do things that for months last year I was unable to do.

But I used to be so healthy!

When I was eight or so I had Mono. For weeks I missed school and was basically confined to staying in bed and taking ice cold baths. I also spent a lot of that time reading and playing with my dad (not having any idea of how serious Mono could apparently be at that age), so I actually have fond memories of that time! Other than the Mono I was a healthy, very active kid, and I continued to be in a state of good health most of my life. This is all really new to me, having actual chronic conditions; it’s a lot to get my head around.

New hopes and visions

In January of last year I did not foresee the challenges that were to come, beyond grieving. I have had to rebuild somewhat tenuous new hopes and visions for this year. They are different hopes and visions than what I had last year; they center my own health and well-being, they are more open and flexible, and in a way they may be more authentic.

A year full of joys

Highway 83 South into Baltimore — *The highway into Baltimore, MD – first time visiting this great city!*

At the same time, I know that last year was also a year full of joys: I was able to see my daughter and her partner numerous times through the year; my husband and I traveled to places we love and to places we’d never been; I had many opportunities to enjoy the beauty of nature; I attended cultural and arts events; and my holidays were celebrated with love and family.

The health issues, the many challenges I was suddenly faced with, didn’t ultimately define the year. Even the grieving process I knew I would journey through, didn’t define the year. I can reflect on last year and look ahead knowing that this year might also be a year full of challenges, but also a year full of joys.

So that’s some of where I’ve been! 🙂 Still here, just going through some new stuff. If any of this is true for your own story, please feel free to reach out and say hey. I’m always happy to hear from others!

~ Nellie

p.s. the feature image is of Mount Mansfield, in Cambridge, VT. I chose this photo because it kind of sums up how life felt last year – very big, sometimes overwhelming, mysterious, and always still profound and beautiful.

Dad

Personal

We had another few months with my dad. We hurried down to Connecticut and were able to spend solid weeks at a time – only returning home for a few days or a week in between – and I was able to spend hours every day by his side. What they had called about in September turned around (sort of)… We had been told he likely only had days or possibly a week or two, that his body wasn’t responding to treatment, and we needed to start hospice.

Hospice came in, and they were pretty wonderful. The on-site care team was already great, but the hospice team provided more one-on-one care and focused comfort measures, as well as significant comfort to us.

Honestly, between September and December, it was amazing. He regained a clarity that no one could explain. He of course still had dementia, and so there were definite moments of confusion as there had increasingly been for several years, but at times he acted as if he was coming out of a coma or something – suddenly newly aware of his surroundings, as well as a distinct familiarity with all of his own things. Requests for certain items of his, inquiries about people he’d previously forgotten, a clarity of thought and speech; he even looked more like himself than he had for a year.

This of course, ultimately made losing him all the more difficult. We had a gift, beyond the few days they had told us to prepare for, we had months, and those months were rich. I feel blessed to have had that time with him. Those months also gave false hope, as several nurses told us he might actually “graduate” from hospice, because he was doing so well. I had just started to think, “maybe he will make it to his next birthday…”

My husband and I came home for just over a week to get our bivalent shots, which we had thought (correctly) would be better to be at home for. When we returned to CT to see my dad, he had just taken ill again, though with something different. Over the course of just a few days, things, well, things became terrible.

He passed away on Sunday the 18th of December. There are a lot of things you tell yourself (that you know you are supposed to tell yourself), that you hear others tell you to remember: at least we had those last few months, at least we were back in CT with him, at least I got to tell him everything, not only once but over and over to make sure he knew. Grief doesn’t reason.

… I am heartbroken.

Today was the first day, honestly, that I have been able to focus on work other than the most mundane. I had another sleepless night, after more dreams about funeral preparations (the funeral is now thirteen days behind us, but each night something new presents itself that I must attend to), gave up and got up at 4:00, and made a list of things I had to get to. The pain is there, the tears are there, but I got on with the day anyway.

There is a pain that must be unique to caring for someone over the course of many months or even years, to witnessing their suffering and the deterioration of their health, that brings its own trauma, on top of the loss itself. I always knew that when I lost my dad it would hit me hard… at times I wondered if I’d even be able to cope. I am coping, functioning fine – I mean, I’ve had everything under control, nothing is going undone – but yeah, it has been a shock and a trauma, and I don’t think I will “get through the grief,” so much as I will now get through life with the grief.

Well, that’s the first I’ve really written about it publicly. I have no idea what I will share here, regarding this loss.

If you have experienced a similar loss recently and feel like you want to reach out, please don’t hesitate. I personally have found comfort in sharing with others.

His obit (at my little genealogy blog): Larry J. Brill, my dad

Thanks for reading,

~ Nellie

Photo: just a happy memory, one of the very fun times we had just the two of us, we had an invite out to Martha’s Vineyard to stay with a theatre friend of his for a week in 1982.