When I read about the illness, I was struck by this: “Also known as mucopolysaccharidosis type II (MPS II), this syndrome is caused by a faulty gene that prevents the body from producing a vital enzyme.” The very process of him being formed—his actual creation—and a rogue gene is what led to his circumstances. His brother also has the illness, but was too old for this gene cell therapy and is in another medical trial in the U.S.
I am staggered at how complicated it is for a healthy human body to form, and yet it happens regularly. To read about Hunter Syndrome is to be reminded of the intricacies of the creation process and the seeming randomness of a gene that does this instead of that, and creates life-altering changes.
My mom never understood why people drank to excess or smoked: They were born with healthy lungs, healthy liver. Why ruin that? Why make your body suffer? There are people who would kill to be healthy. She said this throughout my life, which is probably why I’m a teetotaler now. But it’s true; to see stories of what one rogue gene can do and to recognize your own privilege if you are experiencing a healthy life…a healthy life is miraculous. It’s something to be thankful for. (And if you have the privilege to age, it is something that will not last).
I have so much I want to say. I’ve been thinking and reading and talking with friends about politics, writing, writers, the state of the country, the world, AI, the Constitution, the Civil Rights movement. I write scraps of ideas for posts and essays, but don’t get far with them. I promise myself I will return to them, and perhaps I will. I reworked an essay I started some time ago and really tightened it up—500 words that I thought worked well. My opening line: I’ve been shot only once. The next part: By my brother Gary. With his BB gun. It was an accident, of course. And we were kids—he, at 11, was four years older than me. Once I got to the point where I could stop and read it to myself, I wondered: what is my point? Why am I writing about this? Originally it was going to say something about guns (my brother was a life-long collector) and gun laws (my brother supported safety laws and no one would have guessed how many guns he (safely) stored in his apartment). Am I really adding anything new or different to the topic that so many people have written about brilliantly? Really, I just wanted to tell a couple stories about my brother that I see as connected now that his life is complete. Really, I just want to write out my grief to share with everyone. To say: look at how interesting this guy was and listen to this funny story from when we were kids and how it connects to what I learned about his gun collection after he died and can you believe he died at only 50 years old because sometimes I can’t. I can’t believe he turned 50; finished his bachelor’s degree; received a stage 4 pancreatic cancer diagnosis. It really is the worst.
One thing I did write and get published was a letter to the editor of my hometown paper. Never mind that when they published it online, they included my phone number [insert skull emoji here]. I didn’t receive any calls or anything—I wouldn’t have known it was included if a colleague hadn’t breached the paywall to get a screenshot—but it seemed like a bad idea to have my name and number on their website. So I changed my phone number. My stepdad mailed me clip of the letter. This is what I’ve been thinking about.
On Friday, I mailed a card to a woman I’ll call L who was in my life for only a couple of years when I was a teenager. She dated my dad and briefly lived with us until they went their separate ways. I liked her. She took me to the local beauty school to get my hair highlighted by beauticians in training. The first trip went well; I left with just a few strips of caramel-colored streaks in my dark hair. The second trip things went a bit too far—I left with a lot more chunks of too-light color for my hair. The hard water at my house tinged it red. A classmate referred to it with a racial slur when I returned to school. I think my mom thought it looked terrible and was irritated that this woman would take it upon herself to introduce me to such alterations. When L left (and I should note she always had her own house, and simply stayed with us because she wanted to while she was dating dad), I remember sitting at the dining room table, in one of my bad moods with her departure being the source. My dad asked me what was up. I can’t remember my exact words when I responded, but I know this was the gist of it: What is wrong with you? Why does everyone leave you? I am mortified to remember I said some version of this to him. I was angry L had left. I was angry my mom had left.
I don’t really recall his response. I don’t remember him being angry; he was not one to get angry often, and I don’t think a smart ass remark from his teen-aged daughter would have bothered him a great deal. He may have even sensed that this was coming from a place of my own hurt. When I think deeply on the scenario, he may have said something along the lines of things don’t always work out. In hindsight I realize their relationship was never that serious. They were never going to marry. They were never going to join families. He and she may have known that all along, but I saw her as a partner for my dad so he wouldn’t have to be alone. I don’t think that was a concern for him then, and a few years later he met and moved in with the woman he would spend the rest of his life with.
I ran into L last year when I was leaving the hospital in my hometown after seeing my uncle who had been recently diagnosed with stage 4 lung cancer. My aunt saw her first and said Hey, there’s L. I could scarcely believe my eyes. She looked exactly the same but older—like everyone. It may have been more than 20 years since I saw her last. I told her where I lived and what I did. When she asked about my brother, I broke the news that he had died from pancreatic cancer. She said she had looked for me on Facebook; I used an alias on the site so was not easy to find, and since our conversation last year, I’ve deleted the account. I had told her I would find her on FB and we connected right before I made the decision to move away from FB completely.
Recently, however, a memory came to me of a conversation we had all those years ago, when I was around 14 or 15. I was absolutely mad about the 60’s group The Doors. Completely consumed with Jim Morrison and his legacy. Morrison died in 1971 and was buried in Père Lachaise cemetery in Paris. I had a collection of books themed around Jim Morrison and a paperback travel guide about Paris was part of it . I remember being in the living room talking with her and holding the Paris book. Maybe you’ll go there one day, L said to me. Reader, she may as well have said maybe you’ll go to the moon one day. That is how unlikely leaving the country seemed to me. Basically unfathomable. In rural Ohio, on a dirt road, surrounded by dense woods, no money, not old enough to drive, picturing a life beyond that place seemed impossible. But L buried that small seed of idea in my brain back then, and it wasn’t until recently, with a tiny bit of world travel under my belt (but not yet to Paris) did I realize that she may have been the first person to ever propose the wild notion that I could fly across the ocean and see the places I read about. In the card I sent her I thanked her for that.
Jojo leaping through the snow at our house in Illinois. This is one of my favorite photos of her.
We said goodbye to my best friend last week—not unexpected since she’d been dealing with kidney disease for a few years, and yet still shocking and unexpected. Particularly since the symptoms that led to her ending seemed more related to issues of back and neck pain that wouldn’t resolve. Granted, kidney failure affects the body in a variety of ways, so perhaps the pain was all related. But her discomfort was clear—panting, pacing, whimpering in pain when she sat the wrong way, not wanting to leave her dog bed. She had been on meloxidyl, gabapentin, a muscle relaxer, and a steroid with only minimal changes in her demeanor. Eventually it became clear that we were approaching the end of her life, and I made arrangements for a vet to come to the house to help her transition.
I took this picture the day before Jojo’s health started going downhill. She loved exposing her belly to the world.
Spence and I rarely left her side in the days leading up to her last. We sat in silence, petting her, reminiscing, crying, laughing. The night before, I slept on the floor with her for part of the night. She never left my side when I needed her over the past 12 years, and I was going to do the same for her. When I was so ill with Covid, she was my nursemaid throughout, leaving only to eat and use the bathroom. Spence took one of my favorite pictures during this time (though I didn’t know it because I was sound asleep): I’m in bed, looking like a corpse because I’m so pale, and Jojo is sitting next to me, looking expectantly over her shoulder at Spence’s camera.
Saying goodbye
In her last moments, Spence fed her her favorite treats and she gobbled them down before falling asleep under the anesthesia and snoring just like she would when she fell asleep on the couch. We snuggled her and patted her and thanked her for being our friend as she drifted away from us.
Lucy and Jojo early in their relationship in 2015.
Lucy and Jojo in December 2024.
The grief that followed has been all encompassing. She was the bright ball of joy and energy in our lives for 12 years and now she’s gone. I’ve been surprised at how angry I feel. Having the ability to release her the way we did was the best possible scenario for her situation and we knew saying goodbye to her was inevitable, yet I am so angry and tender and hurt, and I feel snappish and mean. I feel angry that we lose everyone in this life. That life is beautiful and we lose everything. In Buddhism, we try to face this head on by sitting in silence and meditating. And I’m able to be mindful from day to day that these people and critters around me won’t be here forever. But when the time comes to say goodbye, to live through the reality of these lines from the Five Remembrances: All that is dear to me and everyone I love are of the nature of change; there is no way to escape being separated from them…well, it is difficult and painful and shattering and makes me angry.
Me and Jojo in Maine, summer 2024. I thought it might be our last time together in Maine so I wanted to get a good photo of us together. Jojo went from being abandoned in a cornfield in Illinois to summering on the Maine coast.
And now the house feels quieter and I feel lonelier. We still have Lucy Magoosey, but it’s weird to have her without Jojo because it’s always been the two of them. And we have George the cat. But it will take adjusting. And eventually the memories will bring more smiles than tears. And there are so, so many good memories.
Texas Representative Al Green representing so many of us. Photo by Win McNamee
I took a train to Washington D.C. on March 3 to protest what this administration is doing to our government systems. The President was to speak to Congress on March 4, and one of the national organizing groups suggested people head to D.C. The event got a bit watered down after Elon tweeted out something about this effort, and the organizing group said instead to protest at your state capitol. But I had already decided to go and the trip would also let me see for the first time my brother’s headstone in Arlington.
The protests were…fine. It felt anemic compared to the last time I was in D.C. for a protest, which was the women’s march in 2017. It felt very much Business As Usual with all the bros in their suits, talking on their phones and carrying their briefcases. I’m sick of seeing power-hungry men in suits after the comment during the Zelenskyy press conference.
There was not a lot of cohesion for the protests. One was to support Ukraine. One was to fight fascism. One was to March Forth for Democracy. I’d say a total of around 500 people for all of them? We were on a street across from the Capitol, but the police closed the street at 5pm, so the group had to move into the park located behind us, and that’s where the Refuse Fascism event was taking place. They had music and speakers, but it all felt like it was falling short of the moment. It felt like we’re using the methods of the 1960s in a 21st-century situation, where technology/social media is being wielded like an absolute sword, and one side has mastered it.
It seemed like life in D.C. was all normal. I was able to get assistance at Arlington Cemetery from an employee there, and people were visiting the monuments. Lots of supporters for the president. (I joined a solitary protester who was making a scene with a bullhorn during the noon hour right in front of the Capitol. This woman had a spine of steel. I unfurled my sign and stood as her backdrop. We were heckled by a few of his supporters, but they were difficult to hear over the bullhorn (lol).) I don’t know how one snaps out of their day-to-day life when the threat to democracy can feel so abstract, or as happening to Those People, but Not to Me. I think we all take for granted clean water, freedom of the press, freedom to protest, getting mail in a timely fashion, getting safe flu shots, getting our medicine at a pharmacy, making family planning decisions for ourselves. We are now learning that republicans are not speaking out against what’s happening (if they disagree) because they are scared for their safety. Then this is already not a democracy. Fear of political violence shouldn’t happen in a fair and secure representative democracy.
When I read about protests in other countries, people come together en masse to fuck up the systems. They stop trains. The slowdown highway traffic. They flood into their capital and fill the streets with angry bodies (thinking of South Korea when the president declared martial law). Mass disruption to the systems that are allowing us, right now, to just keep on keeping on. Our country is so big, and it’s so easy to feel that something happening eight hours away is not happening to me, even though we are in the same country, experiencing the same government. (And, of course, many are thrilled with seeing all the destruction.)
I read this poem on my way home after the protest and it captured my mood. Particularly the lines:
No blackouts, no rolling of tanks, but yup, we’ll take your democracy. Thanks.
I don’t know how the protests will continue to go in the face of what’s happening. But I have made one decision for myself and that is to basically do an economic blackout all the time as much as possible (not aiming for purity, but making my best effort). Buying groceries from a regionally-owned grocery store. Buying used. No Amazon. No Target. No Facebook. No Meta. No Google. No shopping, generally (to be honest, it’s really lost its appeal these days). Avoiding food chains. I truly think the only thing that these clowns will respond to is a weak market. This is my small way of kicking sand in the gears of this monstrous machine. I won’t make a difference alone (I’m only a grain!), but maybe if enough of us do it, it will be noticeable.
The Puzzle Box 