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Tag: pca

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.

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.