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Watch out. She’s writing again.

I finally, for the first time in well over a month, have time and space to write. It feels amazing. And yet, I sit here and struggle to think of some topic worthy of committing to paper. Or screen, rather.

I pulled out my laptop here at the coffee shop and, after wrapping up some membership business for St. Louis Writers Guild, decided I would actually write. I would think of erudite words and I would type them into pithy phrases sure to delight both me and my readers. If I have any readers left, that is. They’ve probably all gone off to greener pastures, tended by people who say they’re going to write and then actually do it.

There’s plenty that has happened lately, so I should have a variety of topics from which to choose. That plenty is what has, by and large, kept me from writing. It’s all so packed with emotion, though, and I don’t really feel like crying in the coffee shop. Again. Maybe I can summarize.

My mother went into the hospital, because when you keep screaming at the husband who has been caring for you for years and then throw a lamp at his head, you don’t get to stay at home any more. She is now at a facility that we don’t necessarily prefer, but is the only one that will take her given her behavior issues. Turns out lots of places don’t want to take someone who screams expletives at her aides and spits on them when they try to do such terrible things as feed and bathe her. She will never return home again. That part is hard. No, wait, all of it is hard, and all of it sucks.

I find myself in new territory: parenting a tween girl. This means that I am reviled 10% of the time, considered annoying at best 25% of the time, and clung to the remaining 65% of the time. Keep in mind these percentages shift from day to day, and there is no warning which defcon alert state is currently active. What buoys me is that her father seems to be in the same boat, so we’re paddling furiously in circles together, just trying to stay ahead of the riptide. We spend a lot of time looking at each other and shrugging. She spends a lot of time rolling her eyes and texting.

The news. It’s getting in my head and generally wreaking havoc. I find myself spending way too much time reading and watching the news, and then reading the massive amount of commentary by people who argue not with reason, logic and fact, but by lobbing ad hominem attacks, most of which are rife with misspellings and grammatical errors. Honest to God, I don’t know what bothers me more: the news itself, or America’s steady, inexorable decline away from the long-established norms of the English language. I realized that I needed to stop reading the unceasing breaking news headlines and start reading literature. So I charged up the Kindle and downloaded my book club book, which I couldn’t remember the topic of until I started reading and then remembered: freaking Nazis. Fascism is apparently quite prevalent these days. How charming.

M has launched into another one of his charming “I’m gonna travel to all the places” periods. He’s been gone over a week now, and will be gone on and off for the next, oh, month to month and a half. He’s visiting places like London, Dubai, Taiwan, Beijing, Shanghai, San Jose and other places I don’t know because he hasn’t updated the family calendar beyond blocking weeks at a time with “M on Business Travel” yet. Keep in mind that I think it’s hilarious that he’s going all over the world…and to San Jose. Yes, he knows the way. He leaves Shanghai and flies east. I think. Sometimes he flies over the North Pole, but that’s when he’s coming into the Midwest. Not sure if it’s a more direct route to the west coast.

Our email server blew up at work last week and the short story is that I went about 48 blessed hours over the weekend with no email at all, and have not had work email on my iPhone since. Then today I discovered that by granting my employer permission to tighten the electronic leash with installing email on my personal phone, I also gave them the rights to do whatever they damn well please on my personal phone. This was discovered after they inadvertently took both Safari and my camera app off my phone, without me knowing about it and most definitely without my permission. I won’t get into the details of my discovery of the missing apps, melt down, frantic Google search to figure out what the hell was going on, and rant at the tech guys, although looking back it was probably fun to watch. One of the tech guys said, with a sly smile, “Oh yeah, we could totally brick your phone if we wanted,” which may or may not have sent shivers down my spine. *cough*stalkers*cough* So I’m seriously considering scrapping work email on my personal phone altogether, both because the mental space it has freed up has been most welcoming and because I don’t need IT all up in my personal iPhone business. I google some crazy stuff sometimes, because I’m a writer, yo. Freaked me right the hell out. No, thanks.

I got a call from Zoe’s school a couple weeks ago. Or rather, from a parent at Zoe’s school. It started like this, “Hi, Amy? Yes, this is ____ from Zoe’s school. SHE’S FINE.” And then the woman explained she’s with the parent association and we laughed about how when someone from the school calls a parent it’s best to lead with the fact that your child isn’t hurt/in danger/flunking out. She then went on to ask me if I would serve as the volunteer vice chair of Zoe’s class next year, which would make me the chair of her class the following year. She told me that my name had been proposed during a nominating committee meeting and that I had been enthusiastically endorsed and then I asked what kind of drug they were all smoking because can I have some please. I also wondered if they had just gone down the parent list alphabetically and finally got to the last name and hoped I’d be the sucker to say yes. And, of course, I’m exactly that sucker. So next year I have to help put together some weekly news, which mostly involves looking at what happened this week last year and then changing the dates, and also help set up some coffees and finding hosts for a parent party or two. I’m sure there’s a whole slew of duties and responsibilities that she forgot to cover, like setting curriculum, hiring teachers, cutting the grass, and walking the head of school’s puppy, but I’ll figure it out as I go. I’m taking a calculated risk that things with my mother will be more settled by then, so I won’t be stressed out and crying every 2.5 minutes. However, given my history, there will be a whole new crisis du jour and I’ll have my hands full, but hopefully crying only every 3.7 minutes. It’s good to have dreams.

So that’s what’s been going on with me. Or some of what’s been going on with me. There is stuff I haven’t told you, like my dirty laundry. And by “dirty laundry” I mean actual dirty laundry. I have a ton of it at home. And a basket overflowing with clean laundry that I haven’t folded and put away yet because tonight…tonight was about the writing and not about the laundry. And damn, it felt good.

These are some of my recent Project 365 pictures. The project is doing exactly what it’s intended to do, and I’m so glad I decided to embark on another one. Want to see them every day? Follow me on Instagram.

Goodbye, 2016. Hello, 2017.

On the face of it, 2016 stunk it up, and so many of us are happy to see it go. 2016 brought a torrent of cultural and political pain from which the country is still reeling. On a personal level, it wasn’t exactly a banner year, either. As I reflected on the past year over the past week, I found myself scowling and angry, and frightened for what’s to come.

The year dealt multiple blows; we lost: Harper Lee, Bowie, Prince, George, Rickman, Wiesel, Cohen, Wilder, Ifill, Frey, Glenn, Ali, and more. The year dropped trou with a flourish by taking Carrie Fisher and Debbie Reynolds back-to-back at the end, an enormous hand gesture to America that’s too crude to type here. The political scene was chaos and pandemonium, and most of us sat horrified and watched it unroll before our eyes, not believing that what was happening was actually happening. I don’t know whom to blame for that. The media? Nah. Russia? Naw. I think we have only ourselves to blame. And I think recovery is impossible until we admit that.

Personally, this year brought turmoil, too. A lung cancer diagnosis for my father sent my family into a tailspin. In addition to the fear for his health, we were forced to face some hard truths about what it takes to care for my mother, whose posterior cortical atrophy/Alzheimer’s continues to wreak havoc. His recovery was hard and scary, and everyone was pushed to the limits in multiple ways.

The foundation of our three-year-old home cracked and water poured into our finished basement. We ripped out drywall and baseboards and the front porch and, eventually, the entire front yard. Jury is still out on whether it’s completely fixed, but needless to say this wasn’t something we expected to have to do in a three-year-old home.

A dear friend at work learned that instead of launching into a new and exciting academic year he had to instead start fighting leukemia three days before the school year began.

A beloved family member on M’s side was diagnosed with a brain tumor.

We lost our parish, a huge blow from which I’m not sure I will ever fully recover. Thankfully we did not lose the community we’ve built there.

2016 gave me, at the end, the awful cold/flu crud that’s been going around. I was down for almost three weeks and had fought my way back to 99% when it slammed in again two nights before Zoe’s already-much-delayed birthday party. I self-medicated with caffeine and DayQuil, and forged ahead. A visit to the ENT the morning of New Year’s Eve confirmed that I needed antibiotics, nasal spray, rest, and quarantine from everyone. This made me crabby and hate 2016 even more.

Clearly, I was happy to see 2016 come to a close. Even with the uncertainty 2017 promises, I was just ready for the year to end. I spent the last six months praying that nothing happens to Tom Petty before he gets to St. Louis on tour again, because even though he’s been here a thousand times I’ve always had a conflict. He’s coming May 12. Hold on, Tom!

While sleeping half the day on NYE and grousing that I felt so crummy when I was conscious, I realized that I needed to flip my thinking. 2016 wasn’t all terrible, despite the fact that with little prompting I can reel off a litany of crap. So I made myself find 16 things that didn’t suck in 2016. Here we go.

  1. Zoe applied to, was accepted, and started at a new school that is challenging her in so many ways that we are continually reminded that we made a good, if tough, decision. She transitioned beautifully, made new friends easily, and is excelling academically. I cry when I think of the new worlds opened to her with this move. We made new friends through her new school, too. Our horizons are widened by these unique experiences and backgrounds, and the perspective gained is invaluable.
  2. I launched a new book project, a non-fiction work that I am still so excited about even while feeling bummed that life got in the way this year. It’s still there, waiting for me, which gives me hope and motivation. I hope to re-tackle in 2017 and get it moving again.
  3. The three of us enjoyed a mega-vacation that involved sleeping multiple nights on a train (one of Zoe’s most ardent desires) and experiencing San Francisco and Seattle. It was an amazing trip that gave us time together and memories I will cherish forever. M did an incredible amount of work planning this trip (mad props to him), and we all had a wonderful time.
  4. I got off my butt and started walking. I walked and walked and walked – almost 300 miles starting in the fall – and left nearly 30 pounds behind. I feel better and have retired a significant part of my wardrobe (significant both in size and in quantity). Better health led me to sign up for two fun runs late this year: the Girl Scouts Run for the Cookies and the Hot Chocolate 5K. We ran these as a family, creating more memories.
  5. I became more active in a private Facebook group for writers. This amazing group of people from all around the world is inspiring and motivating and supportive. We are collaborating on an anthology and I committed to writing a piece. It was hard, but I wrote it and gave it to two friends to beta read and edited it and submitted it and am so glad I did. Now I have to work on my bio, which I think may actually be harder to write than the original piece. I’m toying with, “Amy Zlatic lives, writes, photographs, mothers, wifes, plays and works in St. Louis, Missouri. She owns a cat that sneezes constantly. She likes pickles.”
  6. Because M retired the Christmas display, we were able to do the fun runs and more together. We decorated our tree as a family. We spent a Saturday in St. Charles to support a friend’s book launch and enjoyed the kick-off for the holiday season on Main Street. We’ve done Wild Lights at the Zoo and Way of Lights at Our Lady of the Snows. Never in my marriage have I had so much access to my husband before and even during the holidays. When people ask if I miss the display I am honest. No, I do not miss it. I spent too many years missing my husband. I’ve fallen in love all over again, with him and with the season.
  7. I won my second NaNoWriMo (National Novel Writing Month), this time finishing the middle grade novel I began last year. I haven’t brought myself to print the entire thing out yet to start editing (and oh boy does it need editing) but that’s on the 2017 to-do list. Word says it’s 323 pages. Not sure I’m ready to kill a tree yet, but I know it’s inevitable. It’s too hard to edit properly on-screen. I need hard copy and a red pen. And lots of coffee.
  8. I grew closer to two wonderful women who support me and love me and accept me and make me feel not so crazy. These women inspire me and motivate me every single day to try to be a better person. I love them and their families, and feel so grateful they have fully embraced me and my family. One of them actually happens to be extended family, which is just icing on the cake. (She can’t get rid of me, ever!) They taught me patience and the insanely valuable lesson of “Always respond in love.”
  9. We road-tripped to Cincinnati and enjoyed a jam-packed weekend full of fun and family. I don’t think we could have crammed more into that weekend, which included a Cardinals-Reds game, a big family bike ride, shopping, and a Labor Day party complete with fireworks and Boom! I love our Cincy family so much my heart hurts when I think about how much I miss them.
  10. Zoe participated in two piano competitions and earned highest marks in each. She continues to stun us with her talent, and I continue to marvel at the fact that I get to regularly cook dinner and clean the house to live piano music. At the second competition, she exited in tears, convinced that her errors had tanked her score. There was a lot of snuggling and reassurances and discussion over what to do to not feel that way ever again (more practice!). She was shocked to later learn she had received highest marks, and her teacher told her, “It’s not about the mistakes. It’s about how you recover, how you keep going.” What a great lesson for us all.
  11. I read so many good books. So, so many, including two books by writers of color which reshaped my world view. The last book I read in 2016 was “Between the World and Me” by Ta-Nehisi Coates. I’ll be chewing on that one for a long, long time. I highly recommend, but offer this caveat if you are not a reader of color: you absolutely must go into it with an openness to accept that your point of view can be – and should be – challenged.
  12. My dad recovered from lung cancer and surgery. My colleague is in the final stages of chemo and has beaten leukemia. Our cousin had successful surgery and appears to be doing remarkably well. For all of this, I am grateful and relieved. They’re all staying on the daily prayer list, though. Just to be sure.
  13. For the first time in my life, I voted for a president who looks like me. Even though she didn’t win, I have a new sense of purpose and resolve. I never again want to feel like I felt on November 9, when I was overwhelmed with feelings of, “I could have done more.” I am now exploring involvement with She Should Run and EMILY’S List.
  14. When my work friend was diagnosed with leukemia, I volunteered to take his advisory until he recovered. I had no idea what I was getting into, taking on nine boys freshman through senior. It’s way more work than I anticipated, but the rewards far outstrip the work. I was also asked tasked with the position of faculty moderator for the yearbook, overseeing four seniors who are the editors. I have grown very fond of all of these students, and find myself worrying about them and championing them like a mother hen. It has been my privilege to take all of this on, and I’ve received far more than I’ve given. They make me laugh every day, and they challenge me in the best possible way. This has injected a new passion into my professional life.
  15. I rode a camel. I think that’s pretty self-explanatory.
  16. When I couldn’t attend the big NYE family bash, I sent my family on without me. My husband, who shall be henceforth known as The Greatest Husband in the World, came back home to check on me and bring me food from the party. He sat and watched Parenthood with me while I sniffled and wheezed on the couch. When he was at the party, he texted and called me, so I didn’t feel quite so alone. And right before midnight, he and Zoe returned and made Sprite and orange juice mocktails so we could ring in the new year together. It was pretty damn special.

Come to think of it, there are a helluva lot more than 16 things to be grateful for last year. Happy New Year, my friends. Hang on, because I think 2017 will be a wild ride.

Thursdays

Thursdays have been my Monday lately. Thursdays used to be my Saturday, but for the past month-plus, they are definitely Mondays.

Thursdays used to be my favorite day because of doughnuts, dress downs, and patty melts. I am a simple woman with simple pleasures. And then Thursdays consistently blew up.

It was Thursday when I found out my dad had lung cancer.

It was Thursday when I blew up my family.

It was Thursday when I realized that a week after surgery to treat the lung cancer, Daddy was still in the ICU and I still hadn’t heard him speak or laugh.

It was Thursday when the doctors did an MRI on his brain and found “something.”

I know these Thursdays because of how you remember exactly where you are when catastrophe strikes. My mother remembers (well, she used to remember) where she was when Kennedy was shot. I remember where I was when Challenger blew up, and when the twin towers fell down. I remember who was around me, how I felt, how other people reacted.

Every Thursday night I’m with my writing group. This small band of diverse people gather each week to write, to bounce ideas off each other, to celebrate victories (submissions, acceptances, the finishing of first drafts, new story ideas)…to be writerly. I was thrilled when one of them invited me to join, as this is the sort of group I’ve been longing for my whole writing life. What I didn’t realize was that this little band of writers are now much more than just the people who give me good synonyms and encourage me to keep writing.

They give me real support, the kind that goes well beyond writing.

I know this because when my life blows up each Thursday night, I am with them. And they immediately give me hugs. There is no judgment, there are no questions. Just loving concern. I sit at my computer and then I start crying and they kindly ignore me until I look up, shaking, and make eye contact and they realize I’m about ready to bolt or lose my shit or, quite possibly, both at the same time.

The hugs are the good kind. The kind that are tight and long and unrelenting. The kind that say, “I have you. You are safe, at least for this moment. I get it.”

The first time this happened I wasn’t prepared. I wasn’t prepared for these people to give so much of themselves, so much of their own humanity. Our conversations around the writing table are typically pretty light-hearted. I inevitably end up laughing and feeling so thankful that I was invited into this little community where the topics are wide-ranging and I learn something new each week. I considered this group my friends, definitely, but they were segmented into my “writing friends” group. Not my “cry my heart out friends” group. (I have those, too, but I don’t get to see them the same night each week, although I should because that would be awesome.)

Then one Thursday night all my fears and emotions about my mother’s Alzheimer’s came tumbling out, manifesting themselves awkwardly in public through my tear ducts. I stood up to bolt, because no one wants to bawl their eyes out in the local coffee house. I was cramming my belongings back into my backpack when one of my writer friends stood up, too, and wrapped me in a giant bear hug. All he said was, “I know.” And I remembered that his mother has Alzheimer’s and that he cared for her until he couldn’t anymore and that he visits her all the time in the facility that now cares for her better than he can. And I knew that he knows exactly how I feel and that I am not alone, despite feeling that way most of the time. Why do I forget I’m not the only person to go through this? Why do I think that I should hide my feelings about this because no one would understand? That’s the sort of garbage thinking that derails me completely. Left to its own devices, my brain will spin and spin, gaining in speed and destruction. It takes someone who has been there, reaching out to stop the escalation and still the spin, to get me back on track. It takes someone who knows the wide range of ever-changing emotions that comes with having a loved one with Alzheimer’s. It takes someone who can say only, “I know” and have it mean worlds. Only then can I slow down, stop, and remember that I am not alone, that there is a path through. It may not be the same path, but it’s a journey that none of us has to take alone.

I’ve written a lot over the past couple of weeks, and it has helped me feel better even though I know it’ll never be published anywhere. It’s been too dark here, though, even though the dark is sometimes comforting. I need my presence here, even while I want to hide under the covers.

Daddy’s surgery was almost two weeks ago. The surgery went fine. All the stuff after – the stuff that’s supposed to be the recovery – hasn’t gone well. At all. It took over a week and half to hear him talk. I miss his laugh. I miss his ever-present concern over our well being. Instead, I’ve seen him in conditions that I will never forget, and that will always make me cry.

They don’t know what’s going on. At first, he was aggressive when they feathered off his sedation. They don’t know why he woke up once and, even with restraints, managed to yank out his IV, his NG tube, and his chest tube. The nurses finally got him subdued and tightened his restraints and, I imagine, gave him something that knocked him on his ass for his own good.

It’s not supposed to be going like this. He’s actually supposed to be home now, grouchy but whole. He’s supposed to be grimacing as he sits up and doing his breathing exercises and setting up follow-up appointments. He’s not supposed to be still incoherent at best, and unconscious at worst.

Mom knows what’s going on, generally. She doesn’t understand why he’s not home yet, which is perfectly normal because we don’t understand, either. She forgets that she’s already been to see him today. She cries because she misses him. We all cry because we miss him.

I think perhaps the hardest part is the unknown. We don’t know what’s wrong. So we don’t know how to fix it. We don’t know when it’ll be right again.

Sometimes I’m able to step outside my reality, and look at it objectively. That’s the woman whose dad is in critical condition. That’s the woman whose father has been in the surgical ICU for almost two weeks. How sad that must be for her. I wonder what’s going to happen? I wonder how she’s dealing with that? I think I’m able to do this mostly because some part of me just can’t believe that this is what is actually happening. At work, one day last week, colleagues started showing up in my office. “I’m so sorry about your dad and mom. I had no idea.” Over and over. I realized that someone must have sent out an email. It was touching and weird all at the same time, because I have been on those emails, have felt bad for the subject of those emails, have wondered how that person is coping with so much tragedy all at once. That’s when I could step outside my reality and look at myself clinically, as someone else. That poor woman whose world is crashing around her.

My sister and I take turns breaking down and building each other up. We text and email a lot during the day. She calls me with updates after she talks to the ICU nurses. She tells me over and over that I can call them myself and get updates, but I don’t know what to say to the nurses, or how to understand what they tell me. She has the medical background. She asks questions in that special code of medical language that I can’t decipher, the code that tells her volumes through data. She gets his temperature (the highs and lows). She checks on his oxygen, on his heart rate. She knows what all the different medications are that they’re trying, and what their dosages mean. She knows which is a sedative and which is for fever and which are his normal medications that he takes on a daily basis. She takes in all those terms, all those numbers and knows if he’s doing better today than he was yesterday. I say only, “What’s going on? Is he better? Have you fixed him? Why can’t you fix him?”

When the nurses answer my sister, they speak in that shared, common language. When the nurses speak with me, they speak in the dumbed-down language that they reserve for the Muggles of the medical world. “He’s doing a bit better today! Just wait, one of these days it’ll be like flipping a switch and he’ll be back to himself!” They are kind and professional and caring to both of us.

He has started coming back to us, slowly. He started speaking yesterday. When I visited him this afternoon, I couldn’t understand much of what he was saying. He wasn’t too responsive to me, and I realized that I wasn’t speaking loud enough. The nurse bustled around, belting out questions and getting crisp responses from him. I went to leave and spoke loudly, like she did. It felt like shouting to me. “Daddy! I’m leaving now but I will be back tomorrow. I love you!” He opened his eyes, puckered his lips, and gave me a kiss. He said, “I love you.” My heart soared and everything inside stilled and the universe tilted a little bit back towards center. And I realized that I will never again take it for granted when he says, “I love you.” I will remember when he asks me, for the fifth time, “Did you lock your doors? Did you close the garage?” he is really saying, “I want you to be safe because I love you.”

This Thursday was good. I am moved into a new office at work and today felt settled there. (Maintenance hung my pictures yesterday, which always makes it feel like home.) I had a wonderful end-of-the-year lunch with colleagues after an end-of-the-year plenary faculty meeting where five of my peers were recognized for being amazing people. There were doughnuts in the faculty lounge this morning. The rain stopped and the sun came out and Daddy said, “I love you.”

I’m sitting here with a group of writers, some of us writing and some of us talking about writing, and nothing is blowing up. When I arrived tonight, anxious because of how the past Thursdays have gone, two of my writer friends immediately looked me in the eye and asked how things are going. I relaxed, and said, “Much better, thanks.”

And then I sat down and started writing.

Discussion closed

Hard week, this week. Mostly because Alzheimer’s sucks.

For new readers who aren’t familiar with my old blog, here’s the nutshell: in 2014 my mother was diagnosed with Posterior Cortical Atrophy, or PCA, which may or may not be a rare subset of Alzheimer’s. Depends on the neurologist you ask. That’s how messed up it is: experts can’t even agree on what the heck it is. Some say it’s Alzheimer’s, some say it’s unrelated, some say it’s a precursor. What we all know is this: it sucks.

Vision problems are the most obvious symptom of PCA. The eyes work, but the brain can’t process the images. She has that. But she also has all the memory issues that come with “traditional” Alzheimer’s. Her doctor’s haven’t said “Alzheimer’s,” because they know they cannot definitively diagnose Alzheimer’s without an autopsy and because they know that it’s one of the very worst diseases you can tell someone she has. But we say it. Because we know. And because when we say “PCA” to others we have to explain what PCA is and go through it all over again. Everyone knows what Alzheimer’s is.

My mother is declining fast. Well, fast to us, anyway. The thing with Alzheimer’s is that it’s different for everyone. Rates of decline and plateaus and even symptoms. Some people respond (maybe?) to certain medications. None that will stop the decline, only slow the progression. There’s not even a good way to tell that. The only certainty is that there’s a boatload of “We don’t know” involved.

I know that people deal with Alzheimer’s differently. I’m talking about the people who don’t have Alzheimer’s but know someone who does, or know someone who knows someone who does. All I can do is share my own reality, and my own coping mechanisms. They are these:

My reality is that I am losing a mother that I have desperately hoped to find my entire adult life. My relationship with my mother was contentious for years, from the time I was a teenager right up until when she forgot to be mean. I spent years mourning what I didn’t have: a close relationship full of love and support with someone I knew loved me merely by dint of giving birth to me. No questions asked. Mother + Daughter = Love. I know she loved me the very best she could. It just wasn’t enough for me. (I have never denied that I have unrealistic expectations.) I needed love without judgment. Love without criticism. But through all that, even when I didn’t realize it, part of me hoped (again, unrealistically, I know) that we’d get past all the scar tissue and eventually have a healthy, loving relationship. PCA smashed that hope, so I’m grieving anew. I’m grieving twice, once for the mother I always wanted and again for the mother I am losing. Yes, I do know how completely messed up this is. I yam what I yam.

In addition to unpacking my emotional baggage over and over, I am trying to help with care for my mother. My role has largely been managing the neurologist and getting involved when there’s bureaucracy. I am tackling the legal and insurance junk that comes with securing short- and long-term professional care. My sister’s role has largely been managing the day-to-day crises that pop up, which is remarkable in both scope and depth, and which she handles with grace and without complaint. She got the short end of the stick with this division of labor, and I know it, and I am eternally grateful for her and for everything she does. We both work full-time and have families, and Alzheimer’s is anything but convenient.

That’s my reality. Now, here’s how I cope.

I cry. A lot. I write. A lot. Even more than I cry. Thousands of words you will never see here, and which will most likely never see the light of day. I research. I get mad. I forcefully try to forget we are going through this and fail, which angers me all over again. I call or text my closest friends and I lean on them hard. And since they are incredibly kind and sturdy people, they hold me up and make me feel better. (You know who you are. I love you.) But what I really need to truly cope with this on a day-to-day basis is this: I don’t want to talk about it unless I want to talk about it. Talking about my mother needs to be on my terms. There is so much I can’t control with this disease and what it’s doing to my family; I have to seize control of this one little thing. I need to control when I think about it, how deep I go with those thoughts, and when I express how I feel about it. If you are a friend of mine, or a loved one, I already know you care. I’ve done a bang-up job of ditching the jerky people in my life, so I’m certain that the ones left are good people. You do not need to prove to me that you care about me, or my family, by asking about my mother. Because when I am not in that mental space to cope with questions, it feels like a sucker-punch to the gut. And most days, I am not in the mental space to cope with it. I think about my mother a lot. I think about my family a lot. I just don’t want to discuss her, or them, unless I feel like it.

Part of it is this: I know that she feels humiliated that she has this terrible disease. Even though she has done nothing to deserve it. Even though she can’t fix it. She is still embarrassed. And I want to honor her by not talking about her. This is incredibly ironic because my mother’s favorite pastime when she was well was talking about other people. I get that. Still, I am cut from a different cloth, and I think she deserves respect and privacy, as all people do, and I know she would be mortified if she knew that people wanted to discuss what her disease is doing to her.

Part of it is this: There is a never a good update with Alzheimer’s. There is no hope. There is no, “Well, we hope this new treatment will work.” No silver lining, no light at the end of that tunnel. Ever. So when I am asked again and again, “How is your mom doing?” it feels like, “Tell me what new symptoms she is exhibiting.” New symptoms are the only update there is to give. She isn’t something for others to casually review and discuss. I had a conversation with someone recently who refused to pick up on the clear signs I was sending that said, “I do not want to talk about this. Please stop asking me questions.” I had to get help from a bystander to get the conversation train switched to new rails. By the end of it, I was shaking and nauseated. My mother is not a freak show, and she doesn’t deserve to have her new symptoms cataloged in detail to others. This means the only thing I can say is, “Well, she continues to decline.” Which is always met with silence. The silence feels like, “Wow, that sucks for her” and it feels like, “Tell me more.” So let’s just avoid the awkward conversation that shreds my heart and makes me feel like throwing up.

I’m sorry this post is so intense. I don’t know how to make this funny. There are a lot of things I can make funny. This isn’t one of them. Alzheimer’s is where funny goes to die. There isn’t a lot of funny this week, for reasons no one else needs to know. I apologize, too, for being so contrary. Kind people mean well when they ask about my mother. My brain gets that. It’s my stupid heart and gut that refuse to cooperate. So please know that I know you care. Know that I appreciate your care and your love and your support. And know that when I want to talk, I will talk. Please let me initiate that conversation.

I know a man who, years ago, was diagnosed with something pretty crummy. I asked him shortly after how he was doing, and my question was loaded. It wasn’t the passing-by how are you doing. It was the heavily weighted, fraught with concern, “How are you doing?” He paused, and said, “Fine.” His voice was tight and the answer was clipped. So I asked him if he wanted me to ask him any more how he was doing. He said no, he didn’t. In fact, he didn’t want anyone to ask him. He said, “I don’t want to be known as ‘the guy with ____.’ I just want to be me. I don’t want to talk about it.” I will never forget that, and I think he is brilliant for figuring it out so quickly.

I’m not saying that this tactic the two of us take, the silent treatment, is right for everyone. Some people find great solace in open and frequent communication. To each his own. Whatever floats her boat. What I am saying is, don’t be afraid to ask someone what she wants and needs in the way of shows of support. You will be far more helpful if you give your friend exactly what she needs instead of what you think she needs.

Thanks for bearing with me. I promise I will try to bring the funny back. I miss it.

The Motorman

One hundred and two years ago today, my great-grandfather received his union card. John Foley drove a street car, and he was a proud member of the Employes Mutual Benefit Association of the United Railways Company of St. Louis. He was a motorman in the 6th Division. The back of the card says he was 5 feet 10.5 inches tall, and had black hair and blue eyes. The same blue eyes as my grandmother, my father, and my daughter. (I didn’t get so lucky.) (Thanks, Mom.)

Turns out there aren’t many photos of street cars from 1914. I know because I googled the heck out of it and found squat. 1914: good public transportation, lacking in photography. 2016: excellent options for photography, hardly any public transportation.

My great-grandfather emigrated here from Ireland. He left everything, and everyone, he knew to come to a new country in the hopes of building a better life. He landed in St. Louis, where he met and married Johanna Quirk from Tipperary. They had three children: Mary, John, and Matthew. Uncle Matt was killed in The War, and my grandmother’s heart was broken forever over the loss of her beloved older brother. It was a sacrifice many families made, but that shared sense of loss didn’t make it any easier. I could still see the broken places when she told me the story about the day the military men arrived at her parents’ house to deliver the news.

Uncle John was an eccentric old man by the time I met him, with a cottage in Ferguson chock full of hidey holes and jars of coins stashed under armchairs. He gave me treats when I visited, and I remember him being kind and gentle, if odd. Once he gave me a paper grocery bag full of peanuts in the shell. I was six, and I had never seen so many peanuts. After years of living alone (his marriage had dissolved decades earlier), he was a wee bit touched, as they might have said in The Old Country.

Mary had three children herself: Margaret (called Peggy), Joann, and Raymond. She was a tough broad who divorced her lousy husband before it was acceptable to do so and raised three kids on her own. She was fierce, feisty and foul-mouthed, and held onto grudges like a rabid pit bull. She disregarded what society told her she should do, taking the more difficult path to provide a better life for her children.

Raymond has seen his share of heartbreak, most of it inflicted by people who were supposed to love him. He is an incredible man in many ways, but mostly because he doesn’t hold onto an ounce of bitterness. He is kindness, grace and forgiveness personified. It’s almost as if his mother held onto all the grudges so he wouldn’t have to.

Today, Mary’s youngest child, Raymond, met his eldest child, who also curses like a sailor, for lunch. After nachos at Fuzzy’s Taco Shop, he handed over John Foley’s union card. I see in that card the generations of sacrifice that came before me.JohnFoleyMembershipCard

I don’t know what my great-grandfather thought about 102 years ago, but if he was like me – or every other parent I know – he wanted a better life for his kids and he was willing to do whatever it took to provide opportunities. Including leaving his country and driving a street car for a living. His sacrifices, and those of his children and his grand children, means his great-granddaughter earned the first college degree in the family (plus a masters to boot) and lives a pretty darn good life. (Although BBC just yanked Doctor Who off Netflix which causes me considerable consternation. Jerks.)

John Foley’s great-great-granddaughter has the world at her feet. She’s a smart girl with an irrepressible sense of humor, insane musical talent, and an impressive amount of courage. So far, she hasn’t exhibited signs of loving expletives like her mother and great-grandmother, but I’m hopeful. And like all the parents who came before, her mother and father will move heaven and earth to give her opportunities.

Not too shabby for the descendants of a motorman in the 6th Division.