The Autoimmune Illness Journey Part 2

March 12, 2026 / Nicole Monaghan / 2 Comments

Nine weeks ago I shared what I had been experiencing for the eight weeks leading up to that day–unexplained severe hip, lower back, shoulder and neck pain accompanied by significant stiffness after short periods at rest. You can read that here:

https://writenic.wordpress.com/

Because I have a history of juvenile and adult arthritis I knew to see my rheumatologist for help. What I imagined might be a straight path to a diagnosis and treatment plan turned out, as most things do, to not be a linear journey but rather a zig zag path of imaging, repeated blood work, multiple appointments, messaging in the portal, a lot of pain, and ultimately a months long run of steroids.

After my last post many people reached out to me to see how I was feeling, whether I’d gotten a diagnosis, and to find out if there were updates. Here are those (tentative) answers:

My doc is still hesitant to give me a diagnosis. This, I’ve learned, is par for the course with autoimmune disease. Many of the illnesses overlap and look like each other making any one of them a difficult thing to pin down. That said, at my last appointment on Feb. 16th, my doc seemed pretty comfy referring to mine, although hypothetically, as PMR–Polymyalgia Rheumatica, the thing I thought it was from day 1. His main reservation about calling it that has always been my age. It’s a disease most commonly found in people ages 70 to 75.

In my fifty-one years I’ve never been an I-told–you-so type of person. However, when it comes to my body and health, I don’t feel the slightest bit guilty having a touch of that attitude. While it still might not actually be PMR, the doc seems to have landed more closely on that than on what he had suspected–ankylosing spondylitis, which in a lot of ways is worse as it’s a lifelong illness whereas PMR generally lasts one to three years before “working itself out.” The one worse thing about PMR is the elevated risk of accompanying Giant Cell Arteritis (GCA) the most terrifying part of which is the possibility of vision loss.

So, how have I felt? Well, having begun prednisone Dec. 26th and built up to 15 mgs, I was essentially pain free January and most of February. And thank God for that since I was working a full time long term teaching substitute job for over two months, a thing I could not have done with the pain that the prednisone alleviated. However, after my mid February follow up appointment the doc was anxious to begin tapering me off of the steroid. Long term use has many risks. It was always meant to be temporary.

So then began the taper and the return of the pain.

For the last few weeks my stiffness after sitting, hip pain, then my low back pain, and most recently my shoulder and neck pain has returned. This is not a huge surprise. My inflammation was being controlled by a steroid, and now it isn’t.

The taper is slow. I’m down to 9mgs from 15mgs and will drop 1mg every two weeks until I’m off of it. This will obviously take months.

At the appointment the doc gave me several options. First, he told me about two types of medication that could be added as we tapered the steroid. One is methotrexate, a Disease Modifying Antirheumatic Drug or DMAD (brand name Rheumatrex) which is used broadly for Rheumatoid Arthritis, PMR, and a handful of other rheumatologic illnesses. The other option is an IL-6 receptor inhibitor called Tocilizumab (brand name Actemra). This is more of a targeted approach although it’s an injectable, but I don’t have a problem with that. Side note–isn’t it funny how everyone’s neurotic fears are different? Some people could never inject themselves or fret over needles and blood draws whereas I have no issue with those things, but I probably lost a year of my life stressing over my (open) MRI (it was still closed on three sides and six inches above my face!) because of severe claustrophobia. Suffice it to say if I ever needed a closed MRI, I would have to be sedated. Stick me all you want, but please don’t trap me.

I decided not to add a second medication right away for two reasons–I wanted to see how badly I’d feel as I tapered off of the steroid (I wondered if the pain wouldn’t return at all), and I wanted a bit more time to think about and research which of the two options to go with if the pain returned.

Now that my pain has returned to about 60% of what it was before going on meds, I’ve decided that once I get to 80% of pain I had before I will go on Actemra, the biologic injectable.

Because the medication is an immunosuppressant I wanted to be conservative. However, I cannot live or work with this level of pain. While there is a risk of infection, I have to incur it to function. As with all things, there is a trade off.

Thank you to everyone who reached out with concern, a kind word or information. I appreciate it. The journey continues.

The Autoimmune Illness Journey

January 3, 2026January 5, 2026 / Nicole Monaghan / 4 Comments

I’ve never written about personal health journeys before, but that is no reason not to start now.

Weirdly, truly discovering Tik Tok in 2025 has made me realize how many corners of the internet exist that directly address very specific experiences. You’ve discovered a new hobby? There’s a side of Tik Tok about that. You are switching careers mid life? You’ll find that there. You have a pet raccoon–you get the idea.

Because I’m a lot more comfortable writing than creating video content, I thought I’d document some of my latest experience relating to health issues. I absolutely know with certainty there will be others who can relate and might benefit from reading about it.

First, a little background. Going back to my childhood and teenage years, I sporadically experienced wrist pain. My mom would buy me Aspercreme, a topical lotion. I’d take hot showers and baths. Joint pain. It wasn’t severe or disabling. It was a nuisance. It seemed to coincide with damp and/or rainy weather. The pediatrician called it childhood arthritis.

Fast forward to my early forties. Phasic joint pain would become an issue. Not just wrists but ankles too. Always symmetrical. Both ankles and both wrists would hurt simultaneously and similarly. I mention the symmetry because to a large extent, that eliminates the possibility of osteoarthritis which is a wearing down of cartilage and tends to be less symmetrical. Ibuprofen and really hot baths were my solutions.

For a long time I didn’t address it. It was tolerable. Then in 2021 during a “flare” (pain lasting weeks) I scheduled an appointment with a rheumatologist. Of course being a new patient, I had to wait weeks to see her. By the time my appointment rolled around, I did not have the pain any longer. Not surprisingly, the bloodwork didn’t show anything. In the meantime I had done some reading and learned that rheumatological diseases are long known to take years to identify, sometimes decades. Autoimmune conditions such as lupus, rheumatoid arthritis, and the like can be particularly difficult to diagnose. There is so much overlap in symptoms with multiple other illnesses, and bloodwork does not always reveal the information needed for doctors to determine cause.

That 2021 appointment and the bloodwork yielded essentially nothing. In the absence of any diagnosis, the doc said I could have fibromyalgia, a condition where the brain receptors interpret pain throughout the body. It did not feel like the right call. I had specific achiness in my wrists and ankles during multiple phases of my life. I did not have the intense fatigue that generally comes with fibromyalgia. Sure I was tired, but wasn’t everybody? But alas, she was the rheumatologist, and I was just a reasonably intelligent person looking things up. Still, I knew in my gut I did not have fibromyalgia.

A little about genetics. Both of my parents are without any rheumatological conditions, thank God. That seems important to note. My mom in her late 70’s and my dad in his early 80s, to this day, have experienced no arthritis. Remarkable. My aunt does have more than her fair share of these types of illnesses. Of course, we would have a lot of conversations and texts back and forth over the years. There is a lot of overlap, although her overall journey is very different, and she is twenty years older than me.

Now fast forward to 2023. My hips for the first time become a source of pain. It had only ever been ankles and wrists. At this point I decide to see a different rheumatologist. Immediately I feel more confident in him. He’s very young, but he spends a lot of time asking questions and listening, things I think good doctors do.

More bloodwork, no answers. But again, by the time I see him, my flare has passed. I don’t have pain, but I detail what I had experienced. He tells me to call the next time I have pain and let the staff know he needs to see me within two or three weeks so we can address it while I’m in a flare. That makes so much sense. I already like him better than the first rheumatologist.

I give him my entire history, of course. The childhood wrist complaints. The teenage bouts of wrists and ankle soreness. The adulthood flares. The lack of answers. The new hip involvement.

Months go by. I enter a flare. I get an appointment to see him within a couple weeks.

When I show him where it hurts he explains that my pain is actually not deep enough to be my hip joints. Those are deeper than where my pain lives. As it turns out the hip joints are practically in the pubic area. I feel a little dumb. I am a grown woman who birthed three children and apparently didn’t know exactly where my hips were. LOL. I am showing him my exterior “hips.” This is apparently where bursae are located, sacs that can become inflamed and very painful. That explains why I cannot sleep on my sides anymore. He says physical therapy will help. UGH. I hate that answer. But ultimately it’s good news. It’s not my joints.

Rather than actually get myself to a PT place, I look up videos on YouTube for exercises that target inflamed hip bursae. I do them for weeks, and they help! I get myself feeling better.

During this bout of “hip” pain I also experience pretty marked stiffness. I’m working as a Tech Teacher, and every time I stand up from my desk to head to another class I feel like I’m in slow motion. This feels odd as a 51 year old. I feel like I’m in my late 70s the way my body reacts to shifting from a sitting to standing position. Apparently this is still in keeping with bursitis.

Over the weeks, I feel better and better.

Then comes the first week of November, 2025. One morning shortly after having tailgated with my husband and son at Penn State I wake up feeling like I had been in a car accident. It is difficult to get out of bed. I am so stiff I have to will my body to reposition in order to get up and out of the bed. My neck, shoulders, lower back and hip area are in significant pain, a level of pain far more severe than any of my previous flares throughout my life.

I assume I overdid it tailgating. We did a lot of walking. And a generous amount of drinking. I’m not as young as I used to be. I must just be paying the price.

But all of these symptoms persist. And what’s worse, my sleep is profoundly effected. If you’re stiff, you are sort of stuck in one position all night. If you have to get up to use the bathroom, which I do every night, you experience a whole ordeal to accomplish that. Your body is just SO. STIFF. Also, getting in and out of the car is a shit-show. You almost feel frozen. Taking ibuprofen gives significant relief, but you don’t want to take it daily for weeks. You’re not looking for stomach or liver issues. But you do need to function.

Time to see the doctor again.

When I see the rheumatologist it’s been four weeks of these constant and persistent symptoms. And I still have them, so he gets to examine me and also talk to me while I’m in pain.

He is considering the possibility of spondyloarthritis (SpA), an umbrella term for different types of rheumatologic illness and specifically he is thinking about ankylosing spondylitis (AS). It is an autoimmune condition that usually begins a bit earlier in life, but can start after 50 also. It is characterized by all of my symptoms, so clinically it is a potential fit. He orders X-rays, ultimately an MRI, and of course more bloodwork. He asks how I feel about injectable biologics should that be where we land diagnostically. I am ok with that. I watched my mom inject herself with Imitrex for migraines as a kid. I’ll gladly inject myself not to feel like I am in my 80’s at 51 years old.

I ask him about Polymyalgia Rheumatica (PMR). It is an inflammatory disease with all of my symptoms. He thinks it is unlikely but cannot rule it out. He says I’m really young for that. Generally the average age of onset is 70. If it is that, it is somewhat better than having AS. Unlike AS, it is self limiting, meaning it is not lifelong the way AS is. It usually lasts one to three years and then the immune system works it out. Treatment is corticosteroids, not biologics. The one scary part of PMR is that it puts you at risk of Giant Cell Arteritis (GCA), a condition that has to be treated as an emergency because of risk of blindness. I try not to dive too deeply into that; the doc seems to lean toward AS, even though I’m still privately leaning toward PMR.

It is now mid December, almost six weeks into my persistent symptoms. My two inflammatory markers, the SED rate and the C reactive protein come back through the roof. On the one hand, I am for the first time in my life, validated as it relates to joint pain. It was always invisible, but it was always real. On the other hand, it’s a bit scary to know that kind of inflammation is wreaking havoc in my body, and bloodwork will not identify why or from what source. Of course I know where I feel it, but what is the cause? Why is my immune system misfiring somehow? And the holy grail–do I have a diagnosis?

The X- rays of my sacroiliac joints are, not surprisingly, normal. Even if I had rheumatoid arthritis there would likely not be visible joint damage this early on in the disease. But the doc hadn’t really suspected RA anyway. My joints are not swollen which is one of the hallmarks of RA.

My MRI is normal. Great news. Also doesn’t tell us a lot. But makes him *somewhat* less suspicious of AS. So what is on the table now? Still AS and PMR.

He does not take AS off the table and does not diagnose me with PMR. But literally my entire clinical picture fits PMR:

pain across shoulders, neck, hips, and low back for weeks, unending

sudden onset

high inflammatory markers in bloodwork

normal X-rays and normal MRI

repeat bloodwork, SED rate came down a bit but still high inflammatory markers, in particular that C reactive protein

some relief with ibuprofen

In the meantime there are dozens of messages between me and the doc via the portal. He orders blood cultures to eliminate possibility of infection or malignancy. He is not concerned about either of these possibilities as I’ve had no symptoms of systemic illness. There was one night of night sweats, but that was likely unrelated. Still waiting on those results, but we both expect them all to be normal.

It is now Christmas week and eight consecutive weeks of constant pain and stiffness. Oddly, I’ve cried several times over missing my Dad, his old self before vascular dementia. He would have been my rock throughout this ordeal. Everyone else in my tiny circle, of course, is supportive, my husband, my mom, and my adult kids. But my Dad–he was my medical consultant. He was the researcher extraordinaire. He was unemotional as it related to medical issues. He took the facts, read the medical journals (he had written articles for them, so he was not intimidated by them), and he’d discuss with me all the right aspects of what I was experiencing. To say having his support throughout all of this would have been comforting is a gross understatement.

On a particularly tough day a couple days before Christmas Eve I tell my twenty year old son how I’m feeling about missing my Dad throughout this ordeal, how he’s the only person I want to talk to about it. How I’m doing my best to research, stay unemotional, do all of my due diligence with the doc, but how his Poppy was that person for me.

My son, a guy of not too many words, says something profound that I needed to hear: “You are that person for yourself now, Mom.”

He’s right. And I’m more than capable of being that. Pity party over.

So what does the doc do next? He starts me on prednisone, a corticosteroid used both for pain management and also diagnostically. What he doesn’t know is that I know rheumatologists very often do that with the intention of diagnosing PMR if there is significant relief.

He puts me on 15 mgs daily. I start the day after Christmas. Within a couple days I have about 80% relief. This is generally enough for rheumatologists to diagnose with PMR. He still hesitates. He wants to see how I am after ten days of the steroids.

While the pain is significantly reduced, there is still stiffness, although less pronounced.

This brings me to current. Weirdly, in the last couple days, some of my hip pain has broken through a bit. I did not expect that. How will he factor this in?

I will make another post after connecting with the doc this week. Will I get a diagnosis? How long will it take him to taper my prednisone (tapering was always the plan)?

I hope anyone who took the time to read this learns something about autoimmune illness and if you’ve been on the autoimmune journey, I hope you find value and comfort in knowing you’re not alone.

A Review of Steve Hartman’s Netflix Documentary: All the Empty Rooms (and my personal thoughts on school shootings)

December 5, 2025December 5, 2025 / Nicole Monaghan / 2 Comments

Steve Hartman, longtime CBS News journalist who’d been typecast for his feel good there’s-got-to-be-a-positive-spin essays had reached a breaking point. He decided that while reporting on the tragedies of school shootings, he would not attempt to restore people’s faith in humanity, he would not remind viewers about the helpers, he would not point out any aspect of these atrocities in an effort to provide any comfort at all. Instead, he would show you the bedrooms of the children whose lives were snuffed out in a place where safety should never have been a luxury—their classrooms.

In this very short (just over a half hour) piece, we follow Steve and his photographer friend into the most private spaces left behind of multiple child school shooting victims. The bereaved parents talk about their need to be in the intimate space their children once slept and played. One father expresses his ache to smell the child that was violently taken from him, and how her bedroom holds, however tenuously, some of that precious smell.

In poignant close up photos of beaded name bracelets, photo-booth pictures, stuffed animals, and youth sports medals–the minutiae of childhood turned memorial–we see the profundity of loss, the unkept promise of a future, the tearful older brothers mourning their little sister, the senseless gaping holes in families.

I deeply respect Hartman for this approach. My style of both essay writing and fiction writing has always strived to not tie bows around anything. Looking for hope or goodness is understandable, but when dealing in certain subjects, it is not the journalist’s or writer’s or film maker’s, or photographer’s job to make people feel better about a horrible reality. To the contrary, in my opinion, their jobs are to jolt people to reckon with what they’re actually looking at–what has actually been lost. These were children! Their small growing bodies were riddled with bullets, their baby flesh torn to shreds! In their schools!

It could have been my kids. It could have been your kids.

It’s sickening, yes. But it’s our country’s truth; we should feel sick.

School shootings in the United States are so ubiquitous that we have collectively been desensitized to them. We are all guilty of hearing about yet another one and doing exactly nothing about it. What can one do? We throw up our hands and lament that we’re living in a sick world.

Inevitably when we’re upset enough, we debate about how to fix it. It is a hot button issue because of stark disagreement on the “why” of school shootings. There are the people who vehemently deny that lack of sensible gun control (including access to AR style weapons intended exclusively for military use) itself is a systemic problem across our country. This is the “people kill people, guns don’t kill people” argument. Those with this viewpoint generally deem mental illness as the culprit. Where else to lay blame?

There is a gargantuan problem and statistical inconsistency with this particular argument. It is widely refuted in all of the research which people do not want to spend time reading. While it is reasonable to conclude that people who have shot up schools were mentally unwell, although I would argue that in many cases, they were predominantly evil (these are two distinct things), blaming school shootings on mental illness is highly problematic. First, it lumps all mental health disorders together. Just as you would not say something like, “Problem X is caused by bad physical health!” you should not view poor mental health as one giant thing. There are a multitude of mental health illnesses, each with their own particular set of causes, symptoms, and treatments.

The other major problem with blaming school shootings on mental illness is that it grossly overestimates the tendency for mentally ill people to violently harm others. In fact, when looking at even a fraction of the body of literature on mental illness, one finds that the overwhelming majority of people who suffer from a major mental health disorder at any point in their lifetime will not harm another person. And in fact, those who suffer from a mental health disorder are far more likely to harm themselves or be the victim of violence than the perpetrator of it. I won’t even address the harm it does millions of people living with mental illness that they are so unfairly stigmatized. Imagine if society lumped all cancer patients into a monolith and blamed them for a societal evil. You can’t, right? Why would we take a group of already vulnerable people and pile on more problems? Likewise, those with mental health disorders suffer amply already.

See:

https://www.nimh.nih.gov/health/statistics/mental-illness

And:

https://www.disabilityrightsca.org/legislation/principles-the-stigma-of-mental-health-and-violence

Also:

“A large body of research exists on the relationship between mental illness and violence.^[9] Studies have repeatedly shown that the majority of individuals with mental illness are not violent and that the majority of violent acts are not committed by those with mental illness.^[10] Further, research indicates only 3% to 5% of violent acts can be attributed to persons with SMI.^[11] Though some believe only a person with mental illness could commit an act of mass violence, researchers estimate that persons with mental illness are responsible for fewer than 1% of all gun-related homicides.^[12]“

and:

” . . . research indicates that in most cases, violent behavior is not solely due to mental illness, but the culmination of multiple biological, social, and contextual factors.^[8] Overestimating the role of mental illness in violence can have a strong impact on stigmatizing beliefs and attitudes, as well as affect public policy.

https://icjia.illinois.gov/researchhub/articles/mental-illness-and-violence-is-there-a-link/

Whether someone who wishes harm on others is clinically mentally ill or not, access to a deadly weapon opens up the possibility of mass violence. If all the evil people with ill intentions had to carry out their vengeance with, for example, their fists, there would certainly not be hundreds of children’s empty bedrooms across our country every year.

Working as a teacher, having had to go through lockdown and lockout drills, having to answer children’s questions about potential threats to their lives, and having had to participate in mock shooting scenarios under the direction of local police departments as part of faculty education, I can tell you that the gun, the thing that shoots bullets which tear into bodies, is the scariest part of the equation–to the administration, to the faculty, to the children! It’s the possibility of a gun inside our schools that terrifies everyone. And with good reason.

Hartman’s project does not aim to look at causes of or solutions to the massacres that take place in classrooms across the United States each year. His goal is that when you hear of another shooting inside of a school, you will visualize the bedrooms that will never be occupied again. And he hopes you sit with that and remember to become properly horrified. His beautiful documentary certainly brought my horror back into clear focus and inspired me to write this piece.

Netflix’s Adolescence, a Review. No Spoilers.

March 23, 2025 / Nicole Monaghan / Leave a comment

Netflix’s Adolescence is a mesmerizing four episode miniseries that explores the arrest of a thirteen year old boy for murder. Stephen Graham, cowriter with Jack Thorne who also plays the boy’s father, delivers a gut wrenching performance. An element of the show which plunks the audience down into the harrowing ordeal is that each episode is one continuous shot whereby actors are followed, in real time, without stopping, retaking, or subsequent splicing together of scenes. This has the spellbinding effect of experiencing, quite literally, the passage of time in the midst of a terrifying worst case scenario mostly told from the perspective of an incredulous and broken hearted father. One gets the sense that this is precisely what is experienced in these situations–from the dramatic arrest to the mundane check in at the precinct, the misunderstandings, the lulls in activity, waiting for appropriate officials to arrive and explanations of due processes. Just as life’s most climactic moments are interspersed with ordinary events, so too does a boy forcibly taken from his home have to eat his bowl of “cornies.” The viewer is an omnipresent observer in the dankness of setting after setting: the police cruiser, the holding cell, the middle school, the interrogation room, the therapy room.

The dialog in every episode, one of the more difficult elements to “get right” is spot on. It is overlapping at times as in real life, both reflective of what characters think and feel and what they think they should think and feel, and one cannot help but hang on every single word. It is rendered so genuinely as to have the impact that we are getting to know the boy at the center of it all from the various perspectives, the father’s, the mother’s, the sister’s, the detective’s, the friends’, the psychologist’s, and ultimately, the boy’s himself.

A particularly powerful and revealing scene comes in the third episode where the boy played by actor Owen Cooper is alone in a therapy session with clinical psychologist played magnificently by Erin Doherty. Their conversation is a dance between objective information seeking from a professional adult and a wavering motivation of a child who vacillates between shrewdness, vulnerability, and that universal human need–a profound desire to be liked. It is the most superbly written TV scene in recent memory.

With equal parts breathless anticipation and anxious dread, we watch as the collateral damage of tragedy reveals itself.

The story brings up questions surrounding crimes committed in childhood, sociopathology in boys, societal influence on boys’ views of girls, parental responsibility, social media’s impact on developing brains, and the myriad ways that children with various psychological health profiles and home environments navigate that fraught period of life–adolescence. While the subject matter is decidedly disturbing, this series never crosses the line of gratuitous portrayal of violence. Every depiction is earned. The story, too, is sadly reflective of the times in which we live.

If you enjoy thrilling dramas, thought provoking and character driven pieces, and literary fiction, this will be a worthwhile, although sobering watch.

Game of Thrones, What is the most powerful thing?

August 18, 2024August 20, 2024 / Nicole Monaghan / 2 Comments

Having “entered the game” five years after everyone on the planet finished playing, I feel, well, behind. The TV show based on George Martin’s book series Fire and Ice ran from 2011 through 2019.

If you have not yet watched it and plan to, SPOILER ALERT, do not read further. The new TV series House of the Dragon is generating renewed buzz about the beloved Game of Thrones, long considered one of the best TV Shows of all time. We have watched the first two episodes of HotD, and I’m intrigued, but it’s tough to imagine becoming as fully invested in these new characters as I was in the GOT ones.

I never thought I would take the time to watch GOT as I had heard it involved copious amounts of violence and gore. I knew it was an adventure and fantasy story, and those had never been on my short list of favorite genres.

However, during my son’s first year of college he watched it. Every time we’d Facetime or text he’d say what the rest of his day entailed and then end with, ” . . . and then a little GOT. You guys have to watch it.” Seeing how moved and impressed my son was with it and that he wanted to discuss it with us, I knew it had to be special.

In April we finally began the series and finished it last week. Over the course of five months it was my favorite pass time to plunge into this magical world or war, betrayal, power, and honor. I particularly enjoyed the “Inside the Episode” pieces that would follow where writers David Benioff and D. B. Weiss gave commentary on the plot and character development that had taken place in that episode. I can’t emphasize enough how much I loved hearing them talk about various narrative arcs.

Instead of focusing on the oft discussed short final season or elements of the ending many found unsatisfactory, I want to list what I loved about the the overall series. There is good reason this show continues to rest firmly in consciousness of TV viewers and in particular, why it will reside in my heart.

Here are the answers for me:

The sheer number of characters whose fates we grow to deeply care about

Tyrion’s speech when he’s on trial for the murder of Joffrey

The dire wolves! Hi there, good boy, Ghost. I’m sorry about your ear in the battle with the Dead, puppy

The dragons! I love these mythological beasts, their wingspan, how they can be ridden, their primal love for their mother and instinctual understanding of others’ intentions toward her

The interconnectedness of the characters; isn’t that how real life is too–the reason we’re always saying, “What a small world!”

The complexity of the story line(s)

The earned growth of characters (in particular Sansa, Aria, Jon, Tyrian, and Jaime). Some believe Daenerys’ changed too suddenly, becoming a mass murderer on a dime after one of her goals had always been to liberate innocents. I’m not sure. She did have a singlemindedness about conquering lands at all costs from day one. Still I was shocked when she flew Drogon to unleash fury on the people of King’s Landing. Perhaps a second watching of the whole season is what I’d need to decide how I feel about whether who she became made sense.

Brienne and Jaime’s love story, the patience and build up with which it is told

Did I mention the dragons? And the characters’ facial expressions when they see them for the first time, especially Tyrion’s, Jon’s, Sansa’s, and Aria’s

The Fire and Ice Song; I didn’t ever want to pass it, even when we were watching more than one episode in a night. If ever I was on a dangerous adventure, this song will be playing on a loop in the background.

The creation of place. This is a literary feat. When writers create actual locales that you feel exist just as your home town does, they have done something remarkable. This is true too for television. I truly believe there are seven Kingdoms! Winterfell is vulnerable? We must march North!

The castles, the way they are captured cinematically

The night before the Battle of the Dead–seeing how numerous characters grapple with what they believe is their imminent death in different ways. Jaime knighting Brienne. Heart emoji here.

The celebration after the Battle of the Dead–Tyrian, Tormund, Jaime, and Brienne playing a drinking game. I love this scene so much.

The earned endings: in particular Aria setting off to explore unchartered territory and Sansa becoming Queen of the North

The horses, their unbridled beauty, and the way they are so integral to life in this world

The costumes–Daenerys’ gowns, Cersei’s jewelry and braided hair (until it is cut off), Jaime’s knight regalia, the Valyrian steel swords

The way Ned’s beheading in Season 1 leaves us permanently preparing to lose additional beloved characters. Brilliant plot move. We never get over Ned, and it makes for better TV viewing.

Tyrian’s wit, humor, and dialog, in particular this line: “There is nothing more powerful in the world than a good story. Nothing can stop it.” Isn’t that the truth?

50

July 21, 2024July 21, 2024 / Nicole Monaghan / Leave a comment

As I anticipated the BIG FIVE O for the last several months, I kept seeing myself writing a new piece and publishing it here. It seems like I should be overcome with a flurry of new mid life creativity. But in truth I know that’s not how inspiration works. I suppose because this blog has brought me joy since 2011, it’s not surprising I envisioned myself writing and giving myself the gift of time to do it and share it. One of my more important realizations about myself this, ahem, half CENTURY is this: I feel most beautiful when I write and share. Maybe my deepest wish for my 50th birthday was simply to feel beautiful. Doesn’t everyone want that? (Counting Crows said it in the 90’s “Mr. Jones” lyric : “And we all want something beautiful: Man, I wish I was beautiful.”)

There was a post I made on the eve of my 39th (!) birthday where I cringingly talked about “holding onto [my thirties] for dear life.” I did have the forethought to know the piece was likely annoying to readers in their forties, fifties, sixties, and beyond, but I still couldn’t help myself–a part of me didn’t want to let that particular decade go.

If nothing else, I’m a bit wiser than I was eleven years ago. There is no hanging on to my forties. I don’t particularly want to. Life is a mathematical certainty. It passes. Time will keep moving. It always does. I have always been keenly aware of the passage of it–a year, a week, an hour. I’ve been known to not look at the clock for hours and be able to guess the time nearly to the minute. Talent or curse? Neither, really. I just have always felt time moving.

If I’m lucky, I’ll keep getting older. It is very cliche, but cliches are born of truth. Each day that I’m healthy and alive is a thing to be grateful for. There is a lot I still want to experience in this life, and so I am going to try to stick around.

Regardless of age, life can be an utter shit-show. Whether people show you that element of their lives or not, it is undeniably that way for everyone. One tiny example is that for me just last night you wouldn’t have known it by my latest Facebook posts, but my son was up all night extremely sick. We drove to Wawa at 3:30 am for NyQuil. He had every symptom you could imagine and was desperate for sleep.

No one gets through this thing unscathed. Every single person suffers horrendous days, losses, and hardship. And everyone chooses how to respond to the pain they’re dealt. In between figuring out what to make for dinner and sleeping, that makes up a life. Dropping wisdom for you right here on the blog on my big old birthday! (LOL)

I’ve realized over the years that listing is an effective way for me to remember my favorite things about life which feels like a good thing to do after having lived five whole decades (ok, that sounds like . . . a lot). I’ve done the list-y posts before. If you are one my seven followers, you will recognize repeats.

Some things never change:

coffee, especially the very first sip

pink and orange skies

ice cold beer on a balmy summer night

unlikely friendship

doggies

MOM-ing

words, stringing them together in the exact right order

throwing words in the air and catching them in a different order

trees: tall, old ones

trees in two lines along a pathway, their leaves touching to form a canopy

donuts

walks

the little fake jog pedestrians do while they’re crossing in front of your car to thank you

the magic of autumn leaves

music that expresses universal truths

stories

peanut butter

booming, rumbling thunderstorms

nail polish, all the colors

the fact that every single person has a story

dogs again

movie and TV characters who I am so invested in they might as well be dear friends

wine

candles

knowing exactly when each of my kids will laugh a fraction of a second before they do

mascara

the fact that wildlife of every kind is busying itself right now in the sky, in the jungle, and in the depths of the sea

that you’re reading these words I’ve written

the utter innocence of animals

you

getting older, and a bit wiser

the wonder of our bodies, and how they forge on, even when we’re preoccupied scrolling on social media

biking down the shore

the helpers in a catastrophe

the way children lay bare their hearts without self consciousness

in case I forgot, all the doggies

strangers being kind to each other when absolutely no one is looking

all of the days and nights that brought me to this one, the great ones and the terrible ones (even last night), because they allowed me to be here today

videos of people being surprised with puppies

fifty years

all the right nows

all the tomorrows I hope I will get

Forgot Somehow

February 21, 2024February 22, 2024 / Nicole Monaghan / Leave a comment

I’ve written before about my Dad, how I was raised on Billy Joel’s music, and how Joel’s lyrics are my earliest memory of wanting to write stories. These three things, my Dad, my writing, and Billy Joel’s music are inextricably tied in my heart, forever.

You can read the one piece here:

My Dad, My Writing

and the other piece here:

https://writenic.wordpress.com/2010/09/21/billy-joel-my-dad-falling-in-love-with-music-stories/

Recently Joel released his first new song in thirty years. I somehow never realized it had been three decades since he wrote and released new music! This astounded me as I’d considered myself a lifelong and devoted fan. His enormous body of work created the impression that there was always another Billy Joel song to listen to. Alas, he said in an interview that he had stopped writing when it was no longer fun. Isn’t that the eternal artist’s struggle–when and why to make new art? For oneself, for others, for monetary gain? Because you want to leave something of yourself behind? Because it’s therapeutic? Because the muse simply dictates that you must?

Joel explains that what he thought would be a typical interchange with a fan who happened to also be a songwriter had ultimately inspired him to write his new release “Turn the Lights Back On.” Watching him perform it on the Grammy’s was an emotional treat. It is so classic Billy Joel in its storytelling, its simplicity and yet profundity. It has the melodic piano interlude we’ve come to expect from his epic songs as well as the relatable admission of all that he knows he’s done wrong, and yet he’s still asking to be loved.

As usual there are different ways to interpret the lyrics. It can be thought of as singer to lover–a man asking his partner to see him anew as he’s just now seeing her anew. It can be viewed as a singer’s ode to his fans. In this interpretation he’s reminding listeners that although he hadn’t churned out any new ditties in a lifetime, something got “switched” back on, and BAM, he’s got one for us. A third interpretation is one that never occurred to me even after I’d asked Alexa to play it repeatedly in the days following the Grammy’s. But my daughter told me she couldn’t help but think of it as she’d also listened to it repeatedly:

The lights being turned back on are like my Dad’s memories surfacing as they sometimes do. Dementia is the cruelest of thieves. It steals and steals, but a person’s essence seems to hold on, or at least shuffle back around in unpredictable waves.

I’m late, but I’m here right now

Though I used to be romantic

I forgot somehow

Time can make you blind

But I see you now

As we’re laying in the darkness

Did I wait too long

To turn the lights back on?

Dementia is darkness. Little by little it robs one’s short term and then long term memories, taking one’s ability to orient, make judgements, plan or organize, then to retain nearly anything. As one might imagine an interloper sneaking from room to room, it switches off one light, then another. Then it comes for all that you’ve trusted your body to do until you are a shell of who you once were. My Dad, having always been positive and loving still manages to exude love. He embodies it. Even now. But I like to remind people of who he was so proud to have once been–a vibrant, brilliant family man who was physically and mentally active and engaged with his family and the world. He was passionate about my mom first and foremost but also medical research, music, and of course, his children and grandchildren.

Please remember that.

Still, I know what my daughter means. There are things he sometimes remembers that we marvel at. It’s as though the lights, however briefly, are switched on. And it’s him. It is.

The person my Dad has always been affords him this–those who love him will be there in the veil of utter darkness and in the flickers of light.

The One Where I Give a Lukewarm Review (Forgive me, Chandler): Matthew Perry: Friends, Lovers, and The Big Terrible Thing

December 11, 2023December 12, 2023 / Nicole Monaghan / 1 Comment

While I’ve never said this out loud (or given it thought), when Friends was popular I had exactly two crushes: one on David Schwimmer and one on Matthew Perry. For obvious reasons, I think, but we will take a look for fun. Schwimmer’s Ross was amusing in his absent-minded professor way, equal parts impossibly smart and irresistibly sweet. And his hair! Matthew Perry was sexy because of how hilarious Chandler was–witty, sarcastic, and good looking. Looking back now I can see that I always liked him liked him.

Those two were my favorites always. The show was entertaining and mind-blowingly successful. I did not consciously realize it, but at a certain point my oldest would come to view Friends as part of the culture of her tween years. By then it was the 2010’s, but she’d discovered the reruns and fallen in love with the humor as she watched and re-watched every season and every episode. Fast forward to a couple years ago, and I took her to The Friends Experience, The One in NYC as a 22nd Birthday Gift.

In pop culture, we fall in love with certain things to anchor us to a chapter of our lives: shows, movies, songs, musicians. Friends had become that for my daughter who was born in January, 2000, over a decade after it had ended. There’s no denying the show leaves a legacy.

I had heard throughout the years that Perry had a substance abuse problem, not unlike so many celebrities. I’d also heard he’d written a memoir, seeing an interview with Diane Sawyer as he was promoting it and then hearing about his strange digs to Keanu Reeves, and later his apology.

I thought I would probably like to read his book. He struck me as being similar to Chandler, witty and interesting. I very much enjoy reading memoirs. I find life stories, or chapters of lives, and the way people choose to tell them, inherently fascinating.

When Perry died late October my daughter Face Timed me from a Halloween costume party, in tears, after a couple drinks. She said she knew she was overreacting to hearing of a death of a celebrity. But the thought of Perry being gone, just like that, so young, had made her–while in a maid costume and her boyfriend dressed as Mr. Clean–drinking festive cocktails with friends, inconsolably sad. She equated his existence with a treasured category of her childhood memories–all the laughter, the feeling as if we knew Chandler.

I knew then that I would need to read his memoir. I wanted, that much more, to hear what he’d had to say.

I have never written a book review that wasn’t sparkling. Usually I only review books I thoroughly love. I did not feel that way about Perry’s memoir.

There were some positives. Perry was disarmingly honest about his severe substance addictions. He had the disease, and he had it bad. He was profoundly ill, and he knew it.

He mentions several times that he would have liked to have children, that he’d always felt he was good with them and believed he would have been a good father. I was glad he shared this with the world. If he didn’t get to realize this desire for his life, at least he made it known that the desire existed.

Perry details decades of the back and forth of his sickness, in and out of rehabs, again and again. And again. He nearly died so many times, his colon exploding at one point. You get a clear sense that his relationship with substances was central, and everything else was secondary, which is likely what renders addiction a disease.

He is at times, as you’d expect, funny.

He did, in fact, help addicts, partly via a sober house he opened for a time. To many accounts, he helped many addicts profoundly but sadly still struggled to stay sober himself.

The major problem with Perry’s narrative comes from a strong thread of blaming his parents and childhood for his problems. He sometimes simultaneously says his childhood trauma is at fault as well as his own shortcomings, but I came away with an overriding sense that he did not fully take responsibility for his own choices. While I believe his addiction was a disease, he still sabotaged relationship after relationship and ruined his own chances of potential happiness time and again. He also seems to have been incapable of empathizing with the pain he caused so many, albeit partially owing to the intense pain he always found himself in.

The other thing I came away with–and this really surprised me and disheartened me–is his need to remind people of his celebrity and success as a comedic actor. Repeatedly he discusses that he created a new way of speaking: “Could you be any more obvious?” famously emphasizing unexpected words. He seems to have credited himself with changing the way society talks. I’m not claiming that this isn’t the case–it just seems like the type of thing one wouldn’t feel the need to keep reminding the reader. Numerous times throughout the book he discusses how successful the show was, how much money he had, and how many women he’d slept with. While he says none of this brought him true happiness, he still comes across as a braggart.

Another problem is that there is so much repetition that it’s tough to orient to his timeline. Had I been an editor for his book I would have pared it down significantly: fewer chapters, fewer paragraphs, fewer sentences, fewer words. He was a good writer but perhaps not a great one as he seemed to have fancied himself. (Sorry, Matty–this is an area where I have a bit more experience.) Perry’s acting and comedic timing were, from my view, his real gifts.

In the very last chapter of his book his writing, both in form and content, are the strongest. He seems to suggest that so many people in his life, his parents included, had done all they could have for him, and he thanks them for saving his life. But what he does in a few pages does not undo two hundred and fifty some pages of whining about how unhappy he’d been and how he never thought he was good enough. One gets the sense he just wants to end it on a more peaceful note for those in his circle who would read what he’d told the world about them.

Perry seems to have believed he was writing from a place of self-awareness and healing. As though he had gained enough experience and wisdom and learned to do the work of someone who could live a meaningful life despite his illness. But ultimately I don’t believe he had reached that point. He seemed still too needy, too self centered, too concerned with impressing people and not truly valuing himself as good simply because he was a human being.

I’m saddened not to have loved Perry’s book. It’s wholly tragic that he died so young. He was a tremendous talent and probably a good person to those who truly knew him. A book can only tell us a sliver of a story, even a memoir like this. We should be careful not to assume we know everything because of one vantage point and one account. Perry said in multiple interviews that he really wanted to be remembered most for helping people, and I believe him. I hope when he died it was not because of another set-back with his addiction. Time and autopsy reports will tell. I wish he could have lived long enough to experience a loving relationship while healthy. He admits to intense loneliness, even at the latter part of his life while he claimed to be sober and healthy-minded. After reading his book it is tough to imagine his having been capable of true peace and contentment, but perhaps he was on the cusp of it. The fact that he was so passionate about helping others with his illness is where his hope sprung from. He had found a purpose. I wish he could have continued to fulfill that purpose.

It doesn’t matter that I didn’t care much for his book. It only matters that his writing it was just one part of his life. I think he knew full well he’d be remembered with admiration and love. And that he would leave a legacy of laughter. And rather than take from this book his whining and bragging and the revelation of his selfishness from this account, I’ll take the fact that every person, even a deeply flawed one, can have a profound impact on so many others.

Barbie, the Movie, a Review

July 25, 2023June 5, 2025 / Nicole Monaghan / Leave a comment

While the media would have you believe it is divisive or defiantly political, the irony is that the much talked about and record-smashing movie’s ever emerging messages are to believe in yourself, that self discovery is a lifelong gig, and that being a woman can make you want to take a long nap. I know, SCANDALOUS. Anyone who would feel threatened by these messages is probably not someone with whom I’d even want to share a conversation, much less a friendship. Are you made uncomfortable by questioning double standards and social injustices? We probably wouldn’t have much in common.

Yes, it espouses feminism. And yes, it underscores that human beings and their desires are complex and contradictory. And that life is hard for everyone.

Don’t believe the “there is no narrative” narrative some critics are dishing out. There is plenty of story here. It is a bit of what my kids would call a “fever dream.” It’s chaotic. But in all the right ways. It is Toy Story meets Weird Science meets every superhero movie with a female hero. But it’s aware of itself in a way those films were not (no shade to Toy Story–it’s on my top ten favorites of all time). But Barbie, the Movie is distinctly its own plastic Barbie Convertible ride.

By plunking us down into the actual setting of so many little girls’ childhood playtime imaginations–open level Dream Houses (how else could you play with them?) and wave-less waves included, we are simultaneously transported to the innocence of childhood as well as made painfully aware of the dysfunctional real world.

Margot Robbie seems to have been born for this role. She is somehow perfectly Barbie and perfectly a real woman. Kate McKinnon, a longtime favorite of mine, is spot on as “weird Barbie.”

Go for the pink heels. Stay for the Billie Eilish song, “What Was I Made for.” You will be moved. Even if, as Barbie does, you just “get there” without going down steps or opening doors. It just happens.

A Game, my Son

May 11, 2023May 13, 2023 / Nicole Monaghan / 2 Comments

When you’ve watched your kid grow from a five year old boy to an almost eighteen year old young man, and every single one of those years he has played the same game, the game becomes more than a game. It becomes synonymous with him.

In the spring of 2011 he played his first t-ball game. Today, a high school senior, he played his last. The moment my husband and I got in the car, the tears fell.

Of course it’s not just about the game. It’s about the lifestyle–the daily practices, the endless gear piled into the car, the bus rides to and from away games, the camaraderie of the team. It’s about learning to be a part of something.

I wrote about how I had a mother’s intuitive sense of his being a baseball player when he was first born. He would play soccer and basketball too, but I sensed from day one that he’d spend the most time playing baseball. I wrote about it here:

Good Sport

I’ve loved watching him play, but even more than that, I’ve been proud of the teammate he is. He has always been a morale booster, lugging a gigantic speaker to the end of campus to play the walk up songs. He has always been what coaches call a “coachable” kid–ready for anything, upbeat, cool as a cucumber, and a truly good sport. I will always be most proud of these two things:

how respectful he’s been to every coach, even when I (and he) did not agree with all the coach’s decisions.

how he treated every teammate, how he rooted for every one of them whether from the other side of the field or from the dugout.

Over the years there were of course many times I couldn’t make it to his games for one reason or another. He was on so many teams! Rec teams, a travel team for four years, summer teams, tournament teams, fall ball teams, CYO teams, Connie Mack teams, and of course, his high school team. But I have always known that I would look back on every game I was able to attend with nostalgia and fondness. I’ve always sensed that I wouldn’t think about the games I couldn’t make, the losses, the disappointments, the injuries, the way politics sometimes impacted playing time. I would remember my kid smiling. I would remember the overnight fun of his playing the Cal Ripken Tournament. How the kids hung out too late and the parents did too, the bonds that formed. I would remember that he was fun to watch fielding balls at shortstop, second base, third base. His quickness, his diving efforts. I’d remember him being used as a pitcher on many teams, often closing out games. The way his wind up looked natural, the way he was capable of being so young and yet managing so much pressure with grace. I’ve always known that I’d remember how he made some truly amazing plays. That he was a stellar fielder! I would remember his stance up to bat. How he avoided swinging at crappy balls. How he was a quick and solid baserunner. Those large leads he’d take! The stolen bases. I would remember his home run in Cooperstown, thirteen years old. The magic of it. I’d remember the summer before senior year how his Connie Mack team went all the way to the state championship series, the way friends and family tuned in to listen to the live audio broadcast, the excitement. I’d remember the times he’d come off the field to friends who’d come to support him. Uncles and cousins showing up. I’d remember him staying afterwards to hang with friends. I’d remember him grabbing food with teammates. I’d remember him having special handshakes. I’d remember him at team parties. I’d remember him playing whiffle ball. I’d remember his easy relationships with kids who had a lot of baseball talent and his relationships with those who had only joined the teams to give baseball a try.

I’d remember him at Spring Valley Park as a small boy. I’d remember him at Windlestrae Park as an adolescent. He practically lived there for months at a time. I’d remember him at LC’s “The Pit” (the name for the school’s baseball field as it’s the lowest part of campus) as a teenager. I’d remember him at all the various schools at away games on every kind of diamond. The scrappy fields and the state of the art facilities. I’d remember him searching for his various baseball accessories every game day before school–where was his hat? Had I seen his belt? Did I wash his arm sleeve? His sunglasses–hopefully they were in the car. The team needed more tape. The chaos of having so much to remember. His senior night–how they eked out the win. Escorting him, arm in arm. Number 1. Hearing his Stats Teacher announce his name, his plans for the fall and his favorite memory.

Just as I had the forethought to know he’d be a baseball player as I looked at that infant boy in the hospital room nearly eighteen years ago, I have other visions, too. Him having pickup games with college friends. Perhaps club ball? Him as a young adult playing on a fun work league. Him, if God will bless him, with a son or daughter, a ball, a glove, a backyard to the home he’s made for himself, showing someone he cherishes the most how to play a game he has created uncountable memories playing, a game that has taught him lessons at every stage of his life, a game that will always be a part of him.