Into the light (again)

I screwed up my courage and put on my big girl panties and did something scary today.

I took this space public again.

There were a bunch of reasons behind this:

I'm tired of hiding from the bullies. (You assholes know who you are. I now openly welcome you to my little home on the Internet. Feel free to read and mock and laugh. If you get your jollies off my personal life, then I feel damn sorry for you because you should be spending your time with your own families, making your own memories. Oh, and fuck off.)

With Mom's diagnosis, my sister and I are casting about trying to find answers. We realize there aren't very many, but today Bean* found another St. Louis woman who is struggling through her mother's PCA diagnosis. It helps to know we are not alone. Since the very thought of this is helping us so much, I realized that I might be able to use this space to some day help someone else. (*Bean is my sister. I have called her this since she was a wee baby. Neither of us knows why. Despite the fact that I'm quite sure she hates the nickname, I will continue to call her this. It's Big Sister Privilege. Sorry, Bean. And I love you.)

Writing is therapeutic to me. It helps me sort my brain out, quiet the raging thoughts. Although M claims I "barf all over the page," my writing is actually an exercise in logic for me. I find tremendous comfort in finding the right words to express my feelings. After I write, I feel like everything is put to rights.

I am embarrassed that I let a few nasty men quiet my voice. I am stronger than this. I am stronger than them. I let them make me feel that what I have to say isn't worthy of sharing, that maybe I am not really a writer, and perhaps there is something to mock. Finally, I realized that I can only be who I am, online and off. And that the people who support me far, far outnumber those who laugh at me. They're also much better people. I have learned from this whole experience, just like I learned from the first time I had my heart broken. Hopefully, like that first heartbreak, I come out of this stronger.

I've been contemplating going public again for a few weeks now. I waffled. I flip-flopped. I hemmed and hawed.

Today, we attended 9 a.m. Mass with our new pastor. It's the Solemnity of Saints Peter and Paul. Father talked about how different these two saints were from each other, and yet, they are both pillars of the Catholic Church. He said that it doesn't matter if we're liberal Catholics or conservative Catholics, that we're all Catholic. The message that came through loud and clear? Stop judging. I think in addition to that, I should stop caring about those who judge me despite knowing very little about me.

Later, as Zoe got ready for her piano recital, I thought about how much I admire her. She has nerves of steel. Cool as a cucumber. I was more nervous for her recital than she was. I looked at my eight year old daughter (soon to be nine!) and realized that she is more courageous than I. Today, she was my role model. This is a pretty startling realization, and I decided that I need to live up to her expectations. I need to be more fearless, more daring. I need to her to continue to believe that she is worth being heard, that her voice matters. And the only way I can guarantee that is if I show her how to stand in the face of those who judge and mock, and say, "I am enough." I refuse the judgment or condemnation of those who belittle others to make themselves feel better. I hope that they, too, some day find the peace they need to feel "enough" on their own.

So, deep breath. Here we go. I can't promise I'll write every day, mainly because when I write I want to be sure it's something worth reading. No one needs to know that I went grocery shopping again, or purchased yet another decaf grande non-fat no-whip extra-hot mocha at Starbucks, or that my cats continue to puke with alarming regularity at the most inconvenient times. I promise to hit the high points, and, to be honest, the low points. There will be more than a few on the road ahead, but with the unbelievable kick-ass people in my life I know I'll make it through. (Those of you who liked my Facebook post and/or wrote a message and/or PMd me: I thank you. The outpouring of support reaffirmed my decision to step out from the shadows, to proudly be who I am, who I want to be. I love you!)

A road with no exits

If you type “PCA” into Google, you get lots of interesting links:

Presbyterian Church in America

Porsche Club of America

Principal Component Analysis

Portland Cement Association

Positive Coaching Alliance

You have to type “PCA Alzheimer’s” to get information on posterior cortical atrophy. It’s not that people with PCA are less important than Presbyterians or Porsches or cement in Portland. It’s just that it’s such a rare form of Alzheimer’s that a.) no one really knows a lot about it and b.) people are misdiagnosed all the time due to its appearance as a visual issue. After all, “I must need new glasses” is a much easier thing to grasp than “My brain isn’t working properly.”

We received this label for my mother today. Only after my sister asked, twenty minutes into the conversation, “What do we call this?” I haven’t decided if it makes it any easier, though. I thought it would. I thought that by getting a label we could move forward. Identity being the first step toward, you know, solution. A diagnosis of carpal tunnel comes with very specific steps: pain killers, anti-inflammatories, a brace, possibly surgery. Even a diagnosis of cancer carries a to-do list. Biopsies and radiation and chemotherapy and setting up meal trains and prayer chains.

A diagnosis of PCA, though, is different. There isn't a whole lot to do. For someone with a Type A personality, this is hard to swallow. “We think we know what’s going on,” the doctors say. “So take these pills that really won’t allow us to know they’re working – we just have to trust they’re working – and come back and see us in six months. Oh, and do things like always go to bed at the same time, and get up at the same time, and arrange your kitchen so that items are always in the same place.”

And then that’s it. And then the family leaves, stunned, and the daughters rush to their computers and Google “PCA” and then “PCA Alzheimer’s” and the mother cries and contemplates whether she’ll see her grandchildren get married.

I am alternating between crying and raging. I cannot imagine what my mother must be feeling.

There is no cause for this. She didn’t drink too much or party too hard or drive too fast. Too much fast food? Not enough greens? Coffee addict? Sweet tooth? Nope. None of that means anything. Depression doesn’t cause PCA, but it sure as hell is a side effect. PCA, as far as anyone can tell, is pretty damn random. Which is both comforting and scary as hell.

My sister and I talked about the road ahead this evening. We had emailed back and forth a bit, and then she called on her way home from work. “Can I stop by and have an adult beverage?” “Absolutely.” It’s a wonder we didn’t get shit-faced. We talked about how our mother, being who she is – or rather, who she was – is forced to face this virtually alone. At this difficult time, she should be able to look back over a life well-lived and draw on years worth of relationships to help ease the pain. Oh, she made friends easily. She just never kept them. Acerbic wit and biting criticism always eventually drove even the most loyal away. For her, there is no loving support group, no girlfriends to hold her hand, no network to help with meals and errands. There is my sister, our father, and me. I think about how many people surround me and M and Zoe, and I realize that I can’t even begin to count them all. The sheer love I feel for my community makes me want to cry. I know if this happens to me, I will be held and supported and loved, and so will my family. I know that I will be able to face this – or any tragedy – with an army of God’s own angels. And so, in addition to dealing with this terrible diagnosis, I am sad that my mother has denied herself this joy, this love, this comfort.

I’m still processing all this. Actually, I don’t know that I will ever be done processing this. On the way to the appointment today, feeling like I was driving towards doom, a radio DJ of all people helped put things in perspective. She said that we all need to remember that no matter what we’re going through, we are going through it. Meaning, we are walking through it, not standing still. We are not stuck in this situation forever. It may get worse, yes, but ultimately, things will get better.

And with that, I’ll share the lyrics to one of my most favorite songs ever, “In the End” by Natalie Grant. YouTube it. It’s worth it. This is my go-to music that makes me feel I can make it through just about anything. Even a tragic, fucked up diagnosis that I can't do a damn thing to fix.

Can't catch a break
You've had your fill of old clichés
Like "life is hard but God is good"
And even though it's true
It won't stop what you're going through
I wish that I could say it would

But He's outside of what you feel
It might not make sense
But one day it will

There's coming a day the sun will always shine
He's gonna wipe away every tear from your eyes
Hold on my brother, things are gonna better
You're gonna smile again
Cause we win in the end

Oh oh oh oh, oh oh oh oh oh, oh oh oh oh oh
Oh oh oh oh, oh oh oh oh oh, oh oh oh oh oh

You're standing still
Life has handed you a bitter pill
Once again you're on your face

You've got questions
Plenty of secret confessions
Wondering if you've run out of grace

But He's outside of what you feel
This life is just a moment
But our forever is sealed, oh yeah

There's coming a day the sun will always shine
He's gonna wipe away every tear from your eyes
Hold on my brother, things are gonna better
You're gonna smile again
Cause we win in the end

It won't be about streets of gold, pearly gates
Harps and wings, diamond lakes
All I know is that He's gonna hold you, hold me
Heartache will disappear
Questions will become clear
Life will all make sense in the end

Oh oh oh oh, oh oh oh oh oh, oh oh oh oh oh
We win in the end
Oh oh oh oh, oh oh oh oh oh, oh oh oh oh oh

There's coming a day the sun will always shine
He's gonna wipe away every tear from your eyes
Hold on my brother, things are gonna better
You're gonna smile again
Cause we win in the end

Oh oh oh oh, oh oh oh oh oh, oh oh oh oh oh
We win in the end
Oh oh oh oh, oh oh oh oh oh, oh oh oh oh oh

Glory, glory hallelujah
Glory, glory hallelujah
Glory, glory hallelujah
We win in the end

Glory, glory hallelujah
Glory, glory hallelujah
Glory, glory hallelujah
We win in the end
We win in the end

The space between

I've been quiet here the past few days. I'm on a little break.

A writing break.
A photography break.

I broke the 365, consciously and willingly and without guilt. 3.5 years of making an image each day...and suddenly I just stopped.

Why? It wasn't fulfilling any more. The creative challenge was gone, replaced with a burden, another task to check off on the daily, ever-expanding to-do list.

I've been soaking up articles about writing and creativity like a sponge, and one message was overwhelmingly clear: it's not only good to take a break, it's necessary. One cannot be creative every single day. And one shouldn't try. Some days, dammit, there just isn't anything worth photographing. Or writing about. There needs to be space between, space to breathe and experience new things and just be. No obligations. This space, this break, this rest, inevitably fuels creativity.

I took my mother to a three-plus hour neurological exam today. The preliminary results are about what I expected, which didn't make it any easier to digest. We will get the full report next week, after the neurologist has time to examine all the test data, formulate his opinion and recommendations, and get it into presentable form. But we got enough information today to know that the future is bleak, and painful, and scary.

Last week my best friend from 7th grade - who is notorious for pushing her own boundaries and dragging me, usually unwillingly, with her - sent me an email about a 5k "mud run." I clicked the link immediately, burst out laughing, and closed the page. I thought about it sporadically on and off, wondering why the hell she thought of me with this thing. Then I went back and took a second look. It's on my fucking birthday. Of course.

I hemmed and hawed. Would it be fun? Yes. Would I have to do some work to get ready for it. Yup. Do I really want to get up early on my 41st birthday and go exert myself and get extremely dirty in the process? No, not really. This, my friends, is not my usual idea of a good time.

The experience this morning, the experience of watching someone I love learn that she is quite literally losing her mind, jerked me back from the land of complacency. I could spend the morning of my 41st birthday lounging in bed, or I can have a new experience, learn about (and laugh at) myself, and create yet another awesome memory with my friends.

I choose the latter.

Mental note

One should not accept a dinner invitation on the eve of Girl
Scout camp, especially when one worked all day, ran around like a crazy person, didn't get the laundry finished, and hadn't started packing. Especially when one's daughter has a 9 am game and is due to arrive, with her mother, at camp by 11 am. Especially when said dinner is guaranteed to go every bit as late as 11 pm. No matter how good the food is.

When one does this, one is a self-proclaimed dumbass.

I could write so much more, but I'm tired as hell and have a long day ahead of me.

The laundry is done. We are packed. The weather looks brilliant.

I think we'll be okay.

(Today's image: Zozo finished Hip Hop Dance Camp today. After their performance the dancers lined up to receive their awards. She earned Most Energetic. What an awesome kid.)

Ups...and downs

I was so looking forward to my boss's return from out of town today, until he got back and shocked the shit out of me with news I was not expecting. That was not a great way to end the work day.

Zoe's softball game was played in the rain, again. Second game In a row. We called it in the fourth tied at 10-10. My umbrella blew inside out. Of course it did. The girls thought that was the funniest thing they had ever seen. I could do nothing but laugh with them. My scorebook was soaked but we persevered!

M had 30+ guys over to the house tonight as a reunion from his last retreat. It was awesome. Girls weren't allowed so Zo and I hung out upstairs and listened to the raucous laughter. Those guys had a blast and I was reminded again what a wonderful parish we have, what incredible friends we have, and how blessed we are to be able to welcome them into our home.

I looked down the stairs to get today's image, knowing that there was no way a still shot could capture what I was feeling. This is pretty rare for me.

Tired and blessed, tonight. Tired and blessed.

Drive

I love this drive into work. It's the first entrance, which is appropriately named Entry 2. It's gorgeous in all seasons and it's a brilliant way to start the day.

Of course, it's also good to start the day knowing that necessary changes have taken place/are taking place, and that the campus is becoming again the special place it once was.

I'm so stinking happy again there. It was a rough year, but I'm glad I stuck it out. This next year promises to be wonderful.

Let's get physical

Annual check-up today, and physical required for a couple summer camps. Everything looks good. Zoe requested that he check her knee reflexes and then exploded in laughter when her legs kicked involuntarily. Her doctor cracked up, too, and probably thought, "I've seen stranger!" She was quite pleased that she didn't have to get any shots. I was quite pleased that there is no co-pay for an annual physical.

It's the simple things.

Rainy night

We hung out and watched Star Trek tonight. She loves Spock, just like her mother. Perhaps because the main man in our lives is super smart, highly logical, and has pointy ears. Okay, maybe one of those descriptors is inaccurate.

I love rainy nights. It's supposed to rain much of tomorrow, too. I'll love that as well, since I have a long day of writing and editing ahead of me at work.

Having trouble shaking the Anna Quindlen book. She writes unequivocally as an older woman, for older women, which I didn't quite realize going in. And then once I figured it out it was too late. I was invested and I had to finish it. That's how my OCD rears its ugly head. It's how I end up doing laundry all night long and why I am perpetually running late. Must finish before I can move on. Anyway, Quindlen talks about a lot of the stuff older women think about. Which is not typically stuff a forty year old woman thinks about. It's damn depressing for a forty year old. I need to find something uplifting. Something light that'll make me laugh. Suggestions welcome.

Not goodbye. See you later.

Our parish priest retired today. He married us, baptized our daughter, arranged her first reconciliation and gave her first communion. He helped us through the death of M's grandmother. I shall miss him.

I have learned that I stink at goodbyes. I hate them, for one, and it always feels awkward to me. So, just like how I've mastered the art of slipping out unnoticed from a party, I've also decided to pretty much skip farewells altogether. We went to Mass, then the celebratory lunch with many from our parish. People said kind words about this kind man, and we all applauded in between bites of turkey, beef, roasted potatoes, candied carrots, and salad. Then the mile-long line formed to say goodbye.

I didn't want to do it. Saying goodbye implies we will never see him again. He's moving into his brother's home, which is in the parish that shares the chapel at the school where I work, so I'm just going to assume I will see him there from time to time. No goodbyes necessary. We left and I feel better for what is probably a cowardly action. Being 40 now and all, though, means I get to call the shots for myself. And if I don't want to say goodbye, I won't. Dammit.

Issues

Woke up this morning and realized I forgot to post last night. Again. Duh.

Earlier in the evening, hanging out with M and watching the Stanley Cup finals after painting my toes, I realized that I was reading a New Yorker article on my iPhone and an Anna Quindlen book on my iPad at the same time. I have either developed ADD or the Quindlen book isn't quite interesting enough to keep my full attention. It could be either, really. It struck me as funny and so I grabbed M's iPhone to take a picture.

Feeling out of sorts these days. I'm sure it's a combination of getting back into the swing of things after vacation, huge changes as work (that are desperately needed and a long time coming, but which amount to lots of work), and the disconcerting discovery that my close vision is starting to weaken. I've always been short-sighted and have never had an issue with reading, before or after the LASIK. Even though the doctor warned me that I'd eventually need cheaters, starting at around age 40 (which I hit last summer), it's still a startling realization when it happens. A few weeks ago, sitting at Mass, I tried to look at a small cut on my finger that happened during landscaping. I brought my hand up to the customary position and it was blurry, so I had to pull it out, further from my eyes. That's when it hit me. Since then I've been acutely aware of this new deficit, and it's freaking me out. I don't think I'm quite ready for cheaters yet; my arms are still long enough to get things to the right length for my eyes to focus, but it's the beginning of the end, I'm afraid. I have learned from my elders that when I do buy my first pair of cheaters, I ought to purchase eight to ten pairs as along with the loss of near vision comes memory loss as to where I left the glasses. People I know who use them keep several pairs laying about, to avoid twenty minute searches for one.

Today our pastor says his last Mass, then retires. This priest married us, baptized our daughter, presided over her first reconciliation, and gave her first communion. He confirmed two of our friends into the Catholic Church. He has been a fixture for me just as much as the physical chapel, and I'm selfishly sorry to see him go. He deserves a wonderful retirement, and I'm happy for him. I just wonder if our parish will change with the new pastor (of course it will, it's just a question of degrees) and what my reaction will be.

I made a delicious casserole for dinner last night that M loves. It's full of beans. There are the typical reactions this morning that come with eating a lot of beans. Sigh.

Needless to say I'm having some issues this morning. All first world problems, I'm well aware, but struggles for me nonetheless.

Home

Unpacked physically but still backed up virtually. Having little access to wifi and no cell service for a week really botched me up and threw off my rhythm. I'm home now and attempting to get back into the groove. I nearly forgot to make a photograph today. I hope to get caught up and post some images from the last week over the weekend. Am doling them out on Instagram and Facebook slowly so as not to overwhelm peoples' feeds. It feels rather anticlimactic.

I'm glad I'm home, with my messy nightstand that holds a pile of books (some finished, some in progress, some waiting), scraps of this and that, charge cords, Kleenex, etc. It's mine and it's home, which makes it good.

Watched "The Monuments Men" tonight. Meh. Good story, but it felt like the film barely skimmed the surface. Clooney mailed it in.

I'm ready for my colonoscopy, Mr. DeMille

This post was written today, in regards to yesterday. Confused yet?

Day 4: Dysentery Day

I'm not sure what constitutes actual dysentery, but for the purposes of this blog we're gonna go ahead and self-diagnose this one. "Dysentery" sounds way sexier than "volatile diarrhea" anyway.

Not sure if it was the water, the fruit, the sun, all of the above, or something else, but holy loose bowels, Batman. I found myself running for the toilet multiple times. (I realize that's not why they call it "the runs," but it's another apt application of the term, I think.) I stopped counting at 8. Just when I thought I was all cleaned out, nope.

It was miserable. I stayed in bed most of the day, missing the beach and the pool. I sulked and pouted and got mad at M when one of his first comments was, "Are you really going to stay in here all day? Because they won't clean the room and we won't get new towels if you leave the Do Not Disturb sign on the door." If I could have inflicted him with gastrointestinal distress at that moment, I would have.

Wouldn't that be a great super power to have? Talk about felling your enemies quickly. I'm not sure what that costume would look like, though. Ew.

The worse thing about being laid up in your hotel room in the Dominican (besides the stomach issues and missing the beach and the pool and the fruity drinks) is that watching TV is pretty hard for an American who isn't fluent in Spanish. "Hemos matado a los alienigenas, mis amigos!" "Ya termino?" "Si!" "Espera. Que todavia estan vivos!"

After hours of no relief, I sent M out for help. In other words, I said, "Get Mom." My mother-in-law is a walking pharmacy-Girl Scout-best girlfriend. She is the quintessential mom who always has Kleenex, a rubber band, tweezers, a nail file, bandaids, and Advil at the ready. Her purse is like Mary Poppins' bag. I don't know how she fits everything in there, but she can pretty much pull out anything you might need at any given time. I bet she even has a hammer in there. She's kind of like a MacGyver Mom. Sure enough, Mom came for a visit and dispensed Immodium. Two doses did the trick and I was back on my feet in time for dinner. Mexican, no less, which is a true test of the stability of one's bowels. In the end, everything came out okay.

Wait, maybe that's not the greatest statement to wrap up this particular post.