Alopecia's Everywhere...

 I mean, I guess the good news is that A LOT more people know the word Alopecia today than three days ago. It's been a lot. And rather than submitting comments on posts and debating people whose minds I won't change, I thought maybe it would help to clear my head to get my thoughts out here. 

Let's back up, though. Because Sunday night's drama was not even the most significant thing the Alopecia community has experienced in the past couple weeks. 

Earlier this month, 12 year old Rio Allred of Elkhart, IN, died by suicide, after brutal bullying she experienced due to her Alopecia. Unlike my E, Rio had been diagnosed more recently, and had lost her hair over the past year. I can only imagine how difficult losing all her hair for the first time in middle school must have been to begin with. But then kids in her school did things like pull her wigs off her head. And the school's response was...nothing of substance. And so, life became something Rio could no longer tolerate. 

This precise thing is the nightmare that lives in the back of every Alopecia parent's head. EVERY ONE OF US. We don't talk about it in such bleak terms. But it's there. All the time. And it happened for Rio's parents. My heart has been broken and heavy for two weeks. 

Cut to Sunday night. I'm sitting on my sofa, watching the Oscars. And this crazy series of events unfolds on screen. I'm going to be honest, because that's what I do in this space. My immediate reaction was to cheer Will Smith. And I'll tell you why. I have been there. I have heard someone mock my beautiful, brave, confident, bold (tm Baldtourage) child, and I have had the urge to smack the shit out of that someone. Why haven't I? Well, for one thing, most of the people mocking her have been children. So. You know. Jail has stopped me. For another, I'm a 5'4" (on a tall day) woman. So, even when it's been an adult who said something stupid, what am I, gonna fight a grown ass man? Don't get me wrong, I can come at you like a hurricane of hair and finger nails (just ask my middle brother), but attacking a stranger unpredictable enough to say something dumb about a child would be dangerous for me, and as a mom, I have to think of things like that. 

Like most of us, I was online a lot on Sunday night. And immediately, a theme showed itself. The vast majority of people were ONLY blaming and shaming Will for his actions. Almost no one was even mentioning the joke Chris Rock made that stoked Will's ire. And I was like, "Wait. WHAT?" The dude mocked a woman's medical condition on international television, and it wasn't even warranting a piece of the discussion?

An author and podcaster for whom I have generally had a great deal of respect roundly condemned Will Smith without offering one single iota of context. I called her out on that on Twitter,  on MULTIPLE of her tweets, to no avail. It was beyond disappointing.

Even as my head cooled, and I was able to think more rationally about how ill-advised and wrong it was for Will Smith to resort to physical assault, on live television, no less, my frustration that the grossness of making a joke about someone's Alopecia never waned. As I am wont to point out to the throngs of people who regularly forget online, freedom of speech does NOT equal freedom from consequences. Chris made a gross joke about Jada Pinkett-Smith's medical condition (about which she has been extremely open and public, so please miss me with the 'he didn't know' hot takes), and he faced consequences. NO. Two wrongs do not equal a right. NO. Will Smith did not handle the situation appropriately. But it's telling that Chris declined to press charges, isn't it?

My concern as we headed into yesterday was that the drama of it all and the focus on the physical violence would overshadow the opportunity to spread awareness about WHY that joke was so uncool to make. And at first, that is precisely what happened. But by today, I've seen more and more discussions of Jada's Alopecia, and more people taking the time to discuss WHY Will threw hands. And that gives me a glimmer of hope. 

The thing is, I have felt that kind of rage. So has my husband. And he was honest about that in a discussion yesterday and was told he was what is wrong with our country today. Guys, I assure you, he is not. He is literally the best person I know. He's also honest enough to admit that his love and protectiveness of his daughter could, in the right circumstance, lead him to slap the snot out of someone. 

Especially on the heels of our community's loss of Rio due to these exact type of jokes and remarks, our Alopecia community on the whole was already feeling so raw and so protective of our Alopecians. So, to see that whole thing play out on TV the way it did was just like a second slap to the face (pardon the pun). 

Just like most things in life, I don't expect that everyone will have the same perspective that I will. Not everyone has a unicorn (person with Alopecia) in their lives. And that's actually a shame, because unicorns are the best, bravest, most beautiful human beings I have come across in my time on this planet. I mean, one of the closest people to my daughter is a 27 year old, badass, bald model and professional dancer who is literally on tour with a musician, but still takes time to check on her girlies. I like to think I'm not an overly selfish person, but I know for certain I wasn't that selfless at 27. And she's just one example.

So, regardless of how you feel about Will and Jada as people, or how you feel about Chris Rock as a comic, please try to understand the two very real sides to this story. And just know that when you come for someone in the Alopecia Community, you come for all of us...and I don't advise that, because I have never witnessed such badass Mama Bear energy...and not just from the Mamas. 

Character Builders Are Overrated

 I've written here plenty about the difficult things that life has dropped in my daughter's lap, and about her impressive ability to shoulder them and still maintain her magically sunny disposition. Well. we learned last week that we get to add double deficit dyslexia to the list. This, in addition to her ADHD and anxiety dual-diagnosis. And of course, the Alopecia. And let's not forget that we are finding this out in the last days of her FOURTH GRADE YEAR. 

This whole thing has my head swimming. I have so many different thoughts and emotions and worries and solutions all vying for my attention at any given moment that it's hard to keep them straight. I thought maybe a blog post would be a good way to work through some of it and clear my head. We shall see. 

I've known for a long time that there was some kind of disconnect, for lack of a better term, going on with her learning. She had good reading comprehension, but terrible reading mechanics, and has been terrified of reading aloud, just always. Similarly, she could grasp fairly complex math concepts, but could NOT keep her basic math facts straight, and in fact, would still frequently draw numbers backwards. All of this is beginning to make sense, of course.

E still goes downstairs the way toddlers do. Both feet on each step. And sometimes, if she's in a situation where something is blocking her step and she needs to step over it, she can't process HOW to do that right away. She gets really upset when this happens. For years, we have thought it was some strange, dramatic thing she was doing. Now, we realize it's an actual processing issue. Of course, as a Mom, I feel TERRIBLE about that. 

I also feel so frustrated because, COME ON, could this kid catch a freaking break, already? Like, going bald twice by age 9.5 wasn't enough? We have to add THIS on top of it? My poor baby. 

I do feel fortunate that we have a great support system surrounding our girl. This includes educators who adore her and want to help her succeed. It's going to take so much hard work on her part, our part, their part. But we will succeed. This girl is a tiny force of nature. This won't stop her any more than any of the other stuff has. 

A Year

 I've had conversations with several friends in the past couple days, sharing that for all of us, our baseline anxiety is extremely high this week. I have to imagine that it's at least somewhat related to the fact that this week a year ago was the week that....everything stopped. It was our last few days of relative normalcy before we were locked down. And that 14 day lockdown turned out to be a year (so far) of at least some sort of variation on lockdown. And I think the fact that we're hitting a year really drives home the feeling of "This is never going to end."

Of course, rationally, I realize it will, to some extent, end. I've had my first dose of vaccine. There is a light at the end of the tunnel. It's still fairly dim and far away, but it's there. 

And then, there is the ROARING return of things I was anxious about before everything stopped. Life is beginning to pick back up, and a year later, all those things...are still there, waiting for me. 

I quit therapy over the quarantine year. I did Zoom sessions for several months of it, but at some point, it just started to feel like it wasn't really doing much for me. No shade to my therapist. It just felt a little bit...futile. 

What really helps me most? Is time with my friends. Time to chat, to vent, and most importantly, to laugh. And that hasn't been able to happen nearly enough in the past year. That's the therapy I need most.

Blocked

 I'm in a group of women who meet once a month to talk about life, and about what we want out of it that we aren't currently getting, and how we can get to where we want to be. I love our conversations. They always help to re-focus me and to remind me that I'm not alone in the things I go through. This past year in particular, solidarity is key.

Among the topics we discussed today was how difficult it can be to be creative during this time when there is SO MUCH to focus on. It's like there's so much input that it actually makes it more challenging to create output? I've been beyond blocked for most of the past year. There is so much I'd like to say, but I cannot for the life of me find the right words. And anyone who knows me knows how crazy that drives me. 

I've been consuming other people's creativity and art at an astounding rate. I've read more books and watched more movies and shows, enjoyed more photographs, than I probably ever have in a year's time. And yet, when I sit down to write, nothing comes. 

I recently watched a show wherein the main character discovers her inner poet. It got me thinking about my days as a poet. I'm not going to pretend that I was any good. I have my poetry stored somewhere, and I'm sure reading it would make me cringe like no other. But I do miss the act of writing a poem. The puzzle of fitting words together just so. I need that type of creative outlet now, when life is so stressful. 

Writing has always helped me to process life. It can soothe the raw nerve of a hard experience. A good song and a notebook used to be my safe space. I've mentioned many times that I started this blog as a kind of proxy for the notebook. And you guys, I really need to use it as such. My brain is so crowded and everything in it is spinning so fast. Writing helps me to slow the thoughts down and make sense of them. Being blocked means everything gets stuck up there. It's a big ole mess. 

Will I keep to it this time? I guess we'll see. 

Climbing

 It can be challenging to communicate mental health issues, and their impact, to people who don't deal with them. Anxiety is more just than fear. Depression is more than just sadness. But how do you assign words to them that make sense to other people?

Recently, when my depression was flaring, I started to think of it this way. Depression is like a ravine. You fall into it. Someone may throw you a rope to pull yourself up (meds, therapy, etc). You pull yourself, and you're able to get to a safe spot, maybe six feet below the road. It's secure enough for you to move forward. You can communicate with people on the road above, and there are even people on your level, sometimes. And then occasionally, you fall again. And hopefully, someone throws you a rope again and you can climb back to your level. But each time you have to climb, the climb gets more exhausting. It gets harder to muster the energy to climb. And you can feel hopeless. Hopeless that you'll be climbing forever. Hopeless that you'll never actually get to the road again. AND depression lies to you. It tells you that you can't get there. It tells you that you don't matter enough to try. Sometimes, it might even tell you people would be better off without you. It plays dirty. And it is exhausting. And it steals your joy, your passion, and your energy. 

So, even though the climb can feel impossible, it's essential to keep trying. And it's incredibly satisfying to get to your level, or better yet, the road. Keep climbing. You CAN do this. 

Parenting in Pandemic: A Jumble of Thoughts and Mixed Metaphors

I'm not sure where or when I first heard or thought of this, but the metaphor I've most often associated with motherhood is of being in water. You try as hard as you can to keep your head above water. Sometimes, you're successful. Sometimes, you feel as though your head is going beneath the surface. As if you're drowning.

This morning, the clutter in my kitchen was drowning me. So, simple solution, right? I took an hour and straightened and cleaned and scrubbed and emptied and refilled. So, my kitchen feels less drowny now. But I'm still fighting the current to keep the REST of the water from engulfing me.

At the risk of mixing metaphors, we are parenting by triage these days, aren't we? Whatever seems most urgent is the thing we address. And the rest of it waits there to rage back at us once we get that one thing under control. Homes. Work. Kids. Schoolwork. Volunteer activities. Anxiety over a global pandemic. Uncertainty about whether our lives will ever get "back to normal" and what that "normal" might even look like. They are like waves against our dinghies. And we are just trying to stay afloat. To keep our heads above the water.

Back in late February/early March, I felt like I was drowning in volunteer stuff. It was the busiest time of year for a number of my volunteer organizations. I had meetings every weeknight. I had to do lists a mile long. I love to be involved, but I felt like I needed a break. And then...everything stopped. And for a few weeks, there was a standstill. The only thing I was fighting was fear and uncertainty. That was a surreal feeling.

Eventually, things started needing to be done again. I actually owe a few people emails regarding stuff I volunteer for. Sorry, guys. Haven't forgotten you. It's just that my emotional bandwidth is kind of maxed out just now.

I feel like I'm failing in so many ways. I know I'm not alone in that. It feels impossible to keep up with my kids' schoolwork, my part time job, my house (having a house cleaner is BY FAR my favorite luxury and GOD do I miss that woman), keeping my kids' anxiety at bay, being the mediator for all manner of conflict between all manner of people in my life...waves against my dinghy.

I'm not writing this because I want anyone's sympathy. I'm not even writing this because I want or need anyone's advice. I'm writing this because I think so many of us are feeling this way these days, and I want someone reading this to feel less alone.

We are going to make it through this storm. And the optimist in me genuinely believes that our children will be stronger and more empathetic for it. We just have to keep our heads above water in the meantime. We have to keep our dinghies afloat. And we need each other to do that.

Alopecia Awareness

September is Alopecia Awareness Month. So, here I am, to spread some awareness.

Alopecia Areata, which is the type with which my daughter was diagnosed two years ago, entails the loss of patches of hair on one's head and body. There are other types of Alopecia, but Areata is the most common, and a bit of a blanket diagnosis (e.g. - E's got so bad that we shaved her head and then no new hair grew for some time, which resembled Alopecia Totals, where all the hair on the head falls out, but her diagnosis never actually changed).

As I've written here before, our journey with Alopecia began the night before E began first grade, when I spotted a quarter sized bald spot under her masses of hair on the back of her head. Over the next several months, it grew and grew. We saw a dermatologist and tried some topical treatments. They didn't do very much at all, and had some not great side effects. Eventually, E decided she didn't want to treat anymore. And by April, 2018, her loss was so much that she decided to just shave it all off.

She was bald until around November, 2018, when she started to show some new growth on the top of her head. Over the next several months, more and more growth happened. Now, she has hair over most of her head, with just the original patches she'd lost being bare, still. Regrowth is exciting, but we and she are well aware that it could cease or reverse at any time. That said, we are enjoying the growth while we can, and having some fun with her hair.

This journey has been and will continue to be filled with ups and downs. We have been shown love and support and kindness beyond what we could've imagined with events like Pink Wig Day in our town. E has a secondary diagnosis of adjustment disorder - in short, an anxiety disorder related to having gone bald at six.

People have mistaken her for a cancer patient. They have bought us meals. They have asked me, straight out. One guy literally asked me if she was dying. This is a big part of why Alopecia Awareness really matters to me. My girl is a perfectly healthy child who happens to be prone to hair loss. She is not ill. And though it shouldn't need to be said - it's NEVER ok to stare at a child, NOR to allow your child to stare at a fellow child. I can understand people's confusion and questions, believe me, but staring or asking me in front of her if she's dying are not the ways to handle it. If you see a bald kid and want to pay for a meal, I think that's totally fine (and kind), because regardless of the reason for the baldness, it's something to deal with, but it's just as likely to be Alopecia as something less benign.

Alopecia is not life threatening on its own. It IS life altering. It will be a part of E's identity, probably for the rest of her life. There are very promising trials for immune treatments that have us cautiously optimistic. And we are happy to teach others about this condition. Ask us!