#SaveOurScience

Posted on May 12, 2025 by Jennie Spotila

Science is under threat. There is no kinder, gentler way to say it.

No matter what your politics or health beliefs are, this will hurt you. I join with ME activists everywhere to plead with Congress to Save Our Science.

What is so alarming? The very infrastructure of scientific research is being undermined, and even destroyed. Here is just a selection of decisions made this year:

  1. Grant review meetings were canceled for months.
  2. Previously awarded grants were frozen or canceled, which means staff have been fired and data will go unanalyzed.
  3. The National Science Foundation–its budget, staff, and current grant portfolio–is being gutted.
  4. Researchers can no longer give subawards of NIH funding to collaborators overseas, even when that is the cost-efficient way for research to be done.
  5. Severe caps on indirect costs will eviscerate universities.
  6. 10,000 people have been fired from the Department of Health and Human Services, and more cuts are expected.

Many of these decisions are being challenged in court, so perhaps some of them will be reversed. But it will take time for these cases to work their way through the system.

In the meantime, we’re already seeing the impact on people with ME and Long COVID:

  1. The ME/CFS Collaborative Research Center at Columbia closed after it lost federal funds.
  2. The HHS Office of Long COVID Research and Practice has been closed.
  3. The Long COVID Advisory Committee was dissolved before it began its work.

With the cuts to research funding, grant review will be even more competitive. Historically, ME research has been at a disadvantage, and in a more competitive environment that may get worse.

Some people thought HHS Secretary Robert F. Kennedy, Jr. would be good for the ME community because he claims to care about chronic disease. But what he has done has already harmed people with the very chronic diseases he professes to care about.

And here’s the thing: this is only going to get worse. The impacts we’re seeing now will grow with time. Less funding = less science. Fewer scientists = less science. University cutbacks = fewer scientists and less science.

When I got sick more than thirty years ago, I knew that science would save me. I got involved in advocacy in the late 1990s for that very reason. My only hope of a treatment was science. Research funding for ME was minuscule but I used the little capacity I had to try to change that. Time passed and the chance of finding a treatment in time for me faded away. But I kept going in advocacy because there were so many of you coming up behind me. You’re younger and have been sick for less time. I hoped we would find a treatment for you.

I fear that your futures are fading away now too. Research takes time. Developing treatments takes more time. Every delay, every budget cut, every person who leaves the field–they are stealing your lives.

This is a five alarm fire. Congress must act to Save Our Science.

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , , , , | 7 Comments

Favorite Reads of 2024

Posted on January 3, 2025 by Jennie Spotila

Now that I have been tracking my reading for a few years, it’s interesting to look at the trends. I read sixty books in 2024, only a bit more than 2023 and 2022. That surprised me because I thought I read a lot more last year, and I would like to be reading more. I go through stretches where I’m just inhaling books and then I’ll go a few weeks and barely pick one up. That is largely due to how well I’m feeling (or not).

Compared to 2023, I had a lot more five-star reads this year. I don’t know if that’s because I picked better books or because I was more enthusiastic/forgiving/positive overall. Out of sixty books, I gave twenty-seven five star ratings. I doubt anyone is interested in hearing about all twenty-seven of those books, so I narrowed it down a bit to share my favorites.

Non-Fiction

Books related to ME: I reread Encounters with the Invisible by Dorothy Wall this year, and loved it even more than I did when it first came out almost twenty years ago. Wall captures the experience of ME–of crashing and recovering to baseline–better than just about anybody. I enthusiastically recommend it. I also recommend Living Well with Orthostatic Intolerance by Dr. Peter Rowe, a plain language summary of what we know about coping with orthostatic intolerance. Dr. Rowe is one of the best experts on this, and this book captures what has worked for his patients over many years.

Trailed by Kathryn Miles: I am a true crime buff, but this book is about more than murder. Miles traces the investigation into the murder of two women in Shenandoah National Park in 1996, but uses the case as a springboard to talk about women in the wilderness and safety in national parks. I camped and hiked in multiple national parks in 1993 and 1994, and I believed I was completely safe. I was wrong (and foolish) and Miles explores the reasons why.

All the Beauty in the World by Patrick Bringley: Bringley worked as a security guard at the Metropolitan Museum of Art for ten years, and takes us behind the scenes of the museum in this memoir. This book is a love letter to museums, art, and how it can sustain us. I loved it so much that I ended up sending copies to multiple friends.

Fiction

Novels by Shirley Jackson: I decided to read all of Shirley Jackson’s novels during spooky season, along with some of her short stories and the excellent biography Shirley Jackson: A Rather Haunted Life by Ruth Franklin. Friends, I am big mad that I got a degree in English Literature without reading Shirley Jackson before now. She was a brilliant writer, and reading her novels in order of publication allowed me to see her grow and develop. You may have read her story “The Lottery” in high school, and I recommend you read it again, but I also highly recommend The Haunting of Hill House and We Have Always Lived in the Castle. There are no jump scares in those books. They’re chilling and gothic, not straight up horror novels, and deserve to be considered among the best American literature.

Demon Copperhead by Barbara Kingsolver: My favorite literary fiction all year. This book won the Pulitzer Prize in 2023 with good reason. Kingsolver set this retelling of David Copperfield in present-day Appalachia, examining poverty and addiction with compassion. It’s deeply affecting and brilliantly written.

Someone You Can Build A Nest In by John Wiswell: This book made multiple “Best Of” lists for 2024, and deservedly so. It’s a monster story, it’s a romance, it’s delightful. I did not expect that a story about a monster who creates its own body out of spare parts (human and otherwise) would turn out to be so heartwarming.

Horror Movie by Paul Tremblay: A horror novel about a horror movie? Paul Tremblay pulls it off. If you liked The Blair Witch Project, this book is for you. It’s super creepy with more than a few twists, and is a lot of fun (if you’re into this sort of thing).

The Secret History by Donna Tartt: I don’t tend to read buzzy books when they come out, I don’t know why. Book oppositional defiance order? Anyway, The Secret History was published when I was still in law school more than thirty years ago and is widely considered one of the best novels of the 20th century. It’s a compelling psychological thriller centering around participants in a special classics seminar at a New England college. Read this if you like dark academia, philosophical debates, charisma in group dynamics, and New England winters.

The Origins of Iris by Beth Lewis: If you are not reading Beth Lewis, then you are missing out. I’ve been a fan since her first novel, The Wolf Road. That was a story of a young woman trying to survive a serial killer in a dystopian wilderness. In Origins of Iris, the narrator is a woman who goes to the wilderness to escape her abusive marriage and figure out who she really is. Lewis’s protagonists have strong and unique voices that stick with you long after you finish the book.

Mirrored Heavens by Rebecca Roanhorse: I can’t close out this list without talking about Mirrored Heavens, the final book in the Between Earth and Sky trilogy. The trilogy is a sweeping saga of magic and religious war in a world inspired by pre-Colombian American cultures. Sometimes, the end of a series is disappointing but not this one. Roanhorse absolutely sticks the landing, weaving all the threads together in an emotionally satisfying and authentic way.

Up Next

In 2025, I not only want to read more, but I want to read the books I own. My new year’s resolution is that I will read two books I already own before I can buy a new book. Library books don’t count towards that two book rule, either. I’ve got so many great books! It’s time to enjoy them.

Posted in Commentary | Tagged , , , , , | 11 Comments

Getting a Normal Result

Posted on October 25, 2024 by Jennie Spotila

It’s been a year since my breast cancer diagnosis.

While I feel like I have finally recovered from treatment, that doesn’t mean my cancer experience is over. I am on medication to prevent a recurrence, and of course, I still need imaging.

My wonderful surgeon told me to be prepared for abnormal imaging this month. Calcifications are common in post-surgical healing but they have to be biopsied because sometimes they are a sign of breast cancer. That is what happened to me last year: a biopsy of calcifications found cancer.

“We might see calcifications in the same place we did the surgery,” she told me, “but none of my patients have ever had those calcifications indicate a recurrence of cancer. Just be prepared for another biopsy.”

Have you ever heard of scanxiety? Scanxiety is the anxiety people feel before, during and/or after imaging scans, and it is very common in cancer patients. I’ve always felt a little nervous waiting for the results of my annual breast imaging, but after my abnormal mammogram last year it got worse. Waiting for the results of every scan has been nerve-wracking.

I was scheduled for a mammogram and MRI on October 3rd, and my scanxiety was slowly ticking up for the week before. Then I tested positive for COVID on October 2nd and had to reschedule. Fortunately, I got a mammogram appointment for just two weeks later (my MRI will be delayed until December).

Two more weeks wondering if they would see calcifications. Two more weeks of thinking that I might need a biopsy again. Two more weeks of tamping down my fear of cancer recurrence. My thoughts would race: I am just getting my life back now. I can’t go through this again.

I am very uncomfortable with uncertainty, and I have a vivid imagination, so I tell myself all kinds of stories about what will happen. One of the practices that got me through the past year is going one step at a time. I am learning to slow down and hold the empty space where information will eventually go, instead of filling that space with catastrophic thoughts. There’s no point in worrying about cancer treatment when I don’t even know if I need a biopsy yet.

Two more weeks of reminding myself that I can only go one step at a time.

I had my mammogram last week. My scanxiety is most intense before a scan and while I wait for the results. On the drive into the city, I completely shut down and turned inward. David didn’t tell me not to feel scanxiety, and put his hand on my knee to reassure me that we are in this together.

When you’ve already had cancer, you get a “diagnostic mammogram” at follow up, which means that you wait while a radiologist reads your scan. My hospital has a separate waiting room for people getting diagnostic mammograms, and I sat there for a long time. Every once in awhile, a woman would be called into a separate room and not come back, which meant she had an abnormal result and was getting an ultrasound.

Waiting is the worst. I cannot be distracted, not by the annoying home improvement shows on the waiting room television and not by thinking about normal day-to-day stuff. My mind wants to play out possible scenarios: how long an ultrasound will take, how soon they could do a biopsy, what my surgeon would say, how upsetting it would be to rearrange my life around treatment again. Scanxiety for me is not an anxiety attack, but I feel a tightness in my body and my mind is intent on predicting what could happen. Over and over, I have to remind myself that there is no problem to solve yet. I need my scan results first.

After what felt like hours but was probably closer to thirty minutes, the radiologist called me into the little side room. He didn’t even ask me to sit down, but just turned to me and said, “You’re fine. The mammogram is normal.”

I had to ask him to repeat himself because I was partially stunned. A normal result?

“There are no calcifications anywhere, and we don’t even see post-radiation damage,” he said.

I had been so certain they would see calcifications and I would be back on the cancer conveyor belt of more tests and appointments. Instead, I got to leave the hospital and start texting the good news to my family and friends.

It’s hard to describe what it feels like to have a medical test go well and produce a normal result. I am so used to having symptoms that doctors don’t understand, weird side effects they’ve never seen. My body does not respond normally to pretty much anything. Since I got sick thirty years ago, my body has not been my ally. Most days, I struggle mightily against my body and its limitations. If I could transplant my brain into a healthy body or robot, I would do it. I would leave this body behind.

Now I am getting used to being in this body that responded perfectly. My surgery removed the cancer, and I healed so well you can barely see the scar. My radiation treatment was so well designed that it did not cause corollary damage. Despite how deep my post-treatment crash was, I climbed out of it and got back to baseline. And now I know that–at least on mammogram–there are no calcifications or masses anywhere in my breasts.

My body healed. It is such a strange feeling, to think that this body that has frustrated me so much can still function and respond normally–even to cancer treatment.

It gives me hope.

Posted in Occupying | Tagged , , , , , , , , , , , , , , , | 15 Comments

Waylaid

Posted on October 10, 2024 by Jennie Spotila

Almost five years after the first cases of COVID-19 in China, I finally got it.

Honestly, I expected this test to be positive for flu. My husband and I had been testing COVID negative on rapid antigen tests for days. I knew I was sick and getting worse, but really, I expected flu.

But no, it’s COVID. Fortunately, I got this positive test within the first five days of being sick and so I was able to get Paxlovid. My husband was already outside the treatment window. And let me tell you, Paxlovid made such a difference. My fever was gone in 48 hours and and my congestion was gone by the time I finished the medication.

Yet I am recovering very slowly. I feel ok, and then as soon as I get up and do something, I feel terrible. I’m writing this post in little dribbles, quitting as soon as I start to feel brain fog and exhaustion.

This is very familiar. It feels like I did after radiation treatment. It feels like ME.

I’m not upset that I feel so weak and wobbly. I’m not even upset that I got COVID despite all my best efforts to avoid it.

What upsets me is that this is yet another delay in my writing. What upsets me is that I began the year with breast cancer and am finishing it out with COVID.

The hard experience of the Long COVID community teaches me that I must be oh so very careful right now. I cannot rush back to physical or cognitive activity, because that is where the danger lies. I must give my body the time to fight the effects of COVID, in hopes of avoiding chronic issues. I’ve always wondered if that would have been good advice when I first got sick all those years ago.

You might think that I would be used to this by now. After all, I’ve been riding waves of higher and lower functionality for decades. But even after all this time, I am still not used to having my plans ambushed by my body. I still have not learned to gently pivot. I am better at it, but I am not graceful.

One thing I have learned in the last year is when to surrender. COVID has waylaid my writing plans, and I have no choice but to give my body what it needs.

Posted in Occupying | Tagged , , , , , , , , , | 9 Comments

Hello, Stranger

Posted on September 27, 2024 by Jennie Spotila

When I was diagnosed with breast cancer last October, I had grand plans: I would blog through my surgery and whatever treatment followed. I was hungry for examples of other people with ME who had been through cancer treatment, especially breast cancer treatment, but couldn’t find much beyond the personal stories of a few friends. I thought I could turn this awful experience into a resource for other people with ME. I guess I do that a lot–try to squeeze something constructive out of something awful.

I waited until November 20th–right before my surgery–to tell you that I had breast cancer. The truth is that the first sign of cancer showed up on October 5th last year, when I had my annual breast imaging. I had a biopsy two weeks later and got my DCIS diagnosis on October 23rd. The month between diagnosis and surgery (and telling you) was a whirlwind of appointments, research, strategy sessions with friends, and a frenzy of preparation. It also took me a month to process what was happening to me and to decide to share it publicly.

There was so much to share. I intended to write about how different cancer-care is from ME-care, about how I researched my treatment options and made decisions, about how I introduced my oncology team to ME, about the experiences of surgery recovery and radiation treatment, and about what helped me cope.

But cancer treatment kicked my ass. It took weeks to recover from my lumpectomy, much longer than I anticipated. Radiation treatment was hard on my body while I was going through it, and for months afterwards. My radiation oncologist had warned me that radiation would probably exacerbate my ME, and she was right. My decline continued for six weeks after I finished treatment until I finally started climbing back out of the crash, and it was several more months before I felt back to my physical baseline. Even then, I was still struggling cognitively.

Coincidentally, we were also going through a long-planned, major house renovation. The contractor broke ground exactly one year ago today, just nine days before that abnormal mammogram. Framing started three weeks after my surgery. Worst of all, my radiation treatment began on the same day as demolition of our kitchen.

All this is to say that I intended to be blogging this year, but I simply had no capacity to do so.

The good news is that I’m finally here again. The home renovation finished this month, and we are slowly restoring the house to order. I am back to baseline post-cancer treatment and I’m writing again.

My body took me on a long detour from the direction I was heading, and I’ve lost a year. But I’m back, and we have a lot to talk about.

Posted in Occupying | Tagged , , , , , , , , , , , , , | 31 Comments

Favorite Reads of 2023

Posted on January 30, 2024 by Jennie Spotila

Listen, I know that everyone posted their favorite books of 2023 already. I wanted to as well, but my recovery from breast cancer surgery took longer than I anticipated, and now I’m getting radiation treatment. However, I still really want to share the books I loved last year, and since it’s still January, I think this is valid.

I’ve gotten more intentional about reading in the last few years. I used to just pick whatever book I felt like reading, without trying to hit a reading goal or focus on a specific list. I didn’t keep a book journal, so I tended to forget not only what happened in books I’ve read but even whether I had read them. Goodreads was great because at least I had a record of what books I read, but I deleted my account a couple years ago after one of the many review-bombing controversies.

I was inspired by the Reading Glasses podcast to try new ways of tracking my reading, and I ended up creating a personal database to help me manage my TBR (To Be Read) list and keep notes on what I loved (or didn’t). Don’t worry, I won’t inflict my nerdiness on you. All this is just to say that now I make more thoughtful choices about what to read. I don’t set specific goals or challenges for myself, but I don’t just choose books at random either.

I read fifty-six books in 2023, about the same as 2022. Interestingly, more of my 2023 favorites were fiction (unlike last year), and some of them were big chunky books. You’ll notice that I’m not into cozy mysteries or romance, but maybe there will be something in my list that appeals to you too.

Non-Fiction

Run Towards the Danger by Sarah Polley: I received this book as a gift, and I was skeptical at first because what did I have to learn from an Academy Award winning actor/screenwriter/director? I was wrong. Polley is a gifted writer, and this essay collection blew me away. The most compelling part to me was Polley’s description of her suffering and eventual recovery from a severe concussion. This book is inspirational without being glib, and Polley’s sincerity makes her writing feel like a personal conversation. I loved it.

Some of Us Just Fall by Polly Atkin: This memoir was published in the UK last year, but it looks like it will be available in the US in March. Atkin has Hypermobile Ehlers-Danlos syndrome and hemachromatosis, although it took many years for her to be properly diagnosed and treated. This memoir interweaves the experiences of being chronically ill with being in nature. Atkin lives in Grasmere, in England’s Lake District, the home of literary greats such as William Wordsworth, and still a place of incredible natural beauty. She brings us along on her walks and swims in a landscape that can heal some things but not everything, and shares her journey of learning to live well with her diagnoses.

Fiction

Six Deaths of the Saint by Alix Harrow: This is a short story, and I generally don’t read short stories, but this one is brilliant. I don’t even want to tell you anything about it and risk spoiling it for you. I will only say that when I got to the moment when the pieces of the story came together, I put my hand on my heart and gasped. Just trust me and read this.

Ordinary Monsters by J. M. Miro: This is a honker, and it is worth every minute it takes to read. If you like reading about dark academia, the grime of the Victorian era, magical mystery, and/or remarkable children, this book is for you. It’s the story of a shining boy, the people who love him, the people who want to use him, and the strength of found family. I got it from the library and ended up buying a copy because it is that good.

Yellowface by R.F. Kuang: I love everything by R.F. Kuang, and her novel Babel was one of my favorites last year. Yellowface is a completely different kind of book but equally amazing. The narrator steals her friend’s just finished manuscript and passes it off as her own work. As the story hurtles along, the characters grapple with racism, diversity, cultural appropriation, social media, and fame–or utterly fail to do so. Kuang is such a skillful writer that I found myself caring deeply for the narrator, despite the fact she’s a complete trainwreck who makes some very bad choices.

Starling House by Alix Harrow: Read this book if you like gothic mansions, small town secrets, a young woman discovering her strength, true love and sacrifice, and/or supernatural mysteries. Harrow’s first novel, The Ten Thousand Doors of January, is one of my favorite books of all time, and Starling House is pretty high on the list now, too.

The Last House on Needless Street by Catriona Ward: This is the first book I’ve read by Ward, and her entire backlist is now on my TBR. It’s described as a mystery/thriller, but it’s horror as well. Something very odd is going on in the creepy house on Needless Street, and a new neighbor wants to find the truth. The suspense kept yanking me forward, and there’s a solid twist that I did not see coming. Don’t read this if you are easily creeped out, but if you love psychological thrillers then definitely check it out.

Jonathan Strange and Mr. Norrell by Susanna Clarke: Most of my 2023 favorites were new releases, but this one is almost twenty years old. I read it around the time it came out and liked it, but I read it again in 2023 and LOVED it. The premise is that magic once existed in England, and now in the Napoleonic era, Strange and Norrell are trying to bring it back. They get more than they bargained for, with terrible consequences. Read this if you love the Regency period, myths and magic, faeries, and/or books with footnotes. Clarke is a quietly brilliant writer, and that didn’t really hit me until I finished the book.

Right now, I’m reading Demon Copperhead by Barbara Kingsolver, another chunky book by another brilliant author. I hope you’re reading something great, too!

Posted in Commentary | Tagged , , , , , | 6 Comments

Enough

Posted on December 22, 2023 by Jennie Spotila

I’ve been waiting until I felt well enough to post about my breast cancer surgery and recovery, about the treatment I will begin in January. I have words to say about experiencing the healthcare system as a person with cancer versus a person with ME. And maybe I will write those words at some point.

But none of that matters to me tonight because my friend Beth Mazur is dead. Beth was a co-founder of #MEAction, a data scientist turned advocate by necessity. She was also a shining example of the very best, the best ME advocates and the most wonderful people. To me, Beth was always rock steady, a woman who protected her limits when necessary and who was fiercely committed to our community. And she was a good friend, to me and to so many others.

So very many people are hurting right now, mourning Beth. I’m sending my love and strength to everyone in our community, whether you had the good fortune to know Beth or not. If you are experiencing trauma, grief, or suicidal thoughts from this news, please reach out. Some resources are collected here, and in the United States you can call 988 to connect with someone who can help.

The only words I have tonight are that I want this disease to stop killing any of us.

Posted in Occupying | Tagged , , , , , , , , , , , , , , , , | 11 Comments

“I have cancer”

Posted on November 20, 2023 by Jennie Spotila
Hand drawn get well cards with stickers and rainbows from my niece and nephew.

I told my husband last week, “It’s just as hard to tell people you have cancer as it is to find out you have cancer in the first place.” So, let me take a deep breath and say:

I have breast cancer.

Everyone reacts with some degree of shock and sadness when I tell them the news. I feel like I’m hurting their feelings by saying it, like I’m responsible for upsetting them, even though having cancer is not my fault.

In an attempt to soften the blow, I focus on the good part of the bad news. I have Stage 0 breast cancer: ductal carcinoma in situ (DCIS). This means that the cancer cells are still confined to the milk duct and have not yet invaded surrounding tissue and become potentially lethal. Stage 0 breast cancer is not life-threatening and it does not have the ability to spread around the body. It’s a gray area between normal cells and invasive cancer cells.

One of my doctors described my cancer as “very curable.”

Still, DCIS has the potential to become invasive cancer and there is no way to tell whether it will or not, so DCIS is treated as if it is already invasive. I will have surgery to remove the cancer, and then I will have radiation therapy and endocrine therapy to destroy any remaining cancer cells. Layering these treatments together significantly reduces my risk of cancer recurrence.

My treatment for breast cancer will be complicated by my ME. I’m worried about crashing after surgery, and worried about how I’ll manage daily radiation appointments for several weeks. I haven’t found any published information about ME and breast cancer, although plenty about cancer-related fatigue (not helpful). Except for informal input from a few friends with ME, I’ll be making this up as I go.

I am very lucky that the cancer was caught at such an early stage, and I am also lucky to have an excellent medical team. My surgeon has recently treated two other people with ME-like illnesses, so she and her staff understand my concerns about surgery causing a crash. I’ll get extra IV saline at surgery, and I’m taking in extra hydration and protein to try and support my body.

But to be perfectly honest, breast cancer is a lot to carry. Even though all my doctors have reassured me that I will be ok, I still have moments of fear. My mother died of breast cancer in 2015 and following in her footsteps this way makes me sad. I try to gently remind myself that all these feelings just come with the territory.

I considered not saying anything publicly about this diagnosis. It feels more personal and private than ME, although I don’t know why. Ultimately, I decided that sharing my experiences might be helpful to someone else, and so it was worth doing. In that way, I guess, this is exactly like my approach to ME.

My surgery is this coming week. If you are so inclined, send me good thoughts and healing vibes. I’ll be back to let you know how it went.

Posted in Occupying | Tagged , , , , , , , , , , , , | 56 Comments

29

Posted on October 7, 2023 by Jennie Spotila

I got sick on October 6, 1994. Writing a memoir that spans almost three decades requires a lot of self-reflection, not only about what I’ve been through but about the choices I made, what I got wrong, and what I could have done differently. Sometimes, looking back feels like looking at a different person.

I feel such compassion for the young woman who got sick twenty-nine years ago. She was building her career, and was newly in love. It makes sense that she trusted the doctor who said she had a virus and would feel better in a few weeks.

Twenty-four years ago, her doctor said that people with ME do not get better after five years, and she thought her life was over. I wish I could tell her: Not yet, my dear.

Seventeen years ago, she began to invest all of her energy and effort in advocacy because she was trying to make something good from her pain. Yet I wish that she had held some energy back for herself. She didn’t see it at the time, but she could have experienced so much more happiness if she had approached life with more balance.

Ten years ago, this woman was bending beneath the weight of her suffering. She had no idea that she had not reached the bottom, that things were going to get much worse. It would have done no good to warn her.

Eight years ago, she thought she had triumphed–not over illness, but over grief. She was so certain that survival was enough, even akin to winning. I wouldn’t tell her otherwise, even now.

I have felt every possible way on my sickaversary, from numb to content. Now here I am, looking back over twenty-nine years of illness. Doctors were wrong. I was wrong. Sometimes, what looked like the right thing to do was more harmful than I realized. It has taken me this long to learn that we cannot predict the future, and that we can take nothing–absolutely nothing–for granted.

For a long time, I have struggled with the impermanence of existence, the reality that everything changes. Impermanence can feel like a liability or a gift, but it is a fact regardless of how we feel about it. The challenge is what we do in the face of change. Things go right or wrong, and all we can control is how we respond.

If I could reach through some crack in time to give my younger self advice, I wouldn’t warn her about what was coming or try to direct her path. I would simply tell her what I have learned:

There are times of great hardship and times of great joy, and there are all the choices you make along the way. It’s the choices that matter.

Posted in Occupying | Tagged , , , , , , , , , , , , , , , , | 11 Comments

Ed Yong Made Me Cry

Posted on September 17, 2023 by Jennie Spotila

There I was, reading Ed Yong’s latest newsletter, and wondering if I had the energy to go downstairs for a cup of coffee. Near the end, Yong listed his upcoming appearances along with an invitation:

Come say hi; please wear a mask.

And I burst into tears.

It’s such a simple request, “please wear a mask,” yet no one is saying it anymore. Most of the healthcare personnel I interact with no longer mask, and neither do many of my beloved family and friends. The general public in suburban Philadelphia gave it up long ago. And who can blame them, when this is the message being trumpeted by our government. Even President Biden flaunted mask guidelines recently.

It’s tempting to “get back to normal,” to go along with everyone else. It would be so easy to follow the crowd, give up the mask and take my chances. But I haven’t because, as Yong wrote in the same newsletter, “it’s still worth avoiding infection.”

I’ve lived with physical and cognitive disability for 29 years. At my worst, I was bedridden. While I’m doing better right now, I know my situation is precarious and can be taken away from me at any time. And I know firsthand that COVID is a big risk. My husband’s brain fog, a problem since his stroke in 2015, has been markedly worse since he had COVID one year ago. The ranks of people with Long COVID continue to swell, and I keep hearing about people critically ill or dying from vascular issues after COVID.

For awhile, early in the pandemic, it felt like we were all on the same page about flattening the curve and protecting the vulnerable. We accepted collective responsibility for individual welfare. Now, though, I mostly feel left behind.

Yong won a Pulitzer Prize for his reporting during the pandemic, but this time he wasn’t explaining the science or commenting on public policy. This was a simple request, made in the midst of a pandemic, person to person. We still need to protect one another, so please wear a mask.

I cried, because I felt less alone.

In that moment, I felt like someone else understood that a small inconvenience for one person could make all the difference for another. We can’t know for certain how our actions affect others, yet our small, individual choices matter. Maybe wearing a mask will prevent an infection, save someone’s life, or protect someone from Long COVID. And even if we never know for sure, it’s still worth it to try.

Posted in Commentary | Tagged , , , , , , , , | 8 Comments