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Catch 22

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It’s 2018, and individuals with any form of mental illness are encouraged to push past the unrelenting stigma and be open about their struggles. The more we talk about it, the easier it will be to normalize it, right? At least, that’s what we hear.

The reality isn’t always so simple, though.

A few weeks ago, just around the change from summer to autumn, I started having some trouble catching my breath. I’m asthmatic and am blessed with a metric shit ton of seasonal allergies, so I expected it was a bit of an asthma flare. Upped my allergy meds. Broke out a new inhaler.

But it started waking me up from a dead sleep, that feeling of being unable to catch my breath. It felt as though I had to take three or four short breaths in order to get one whole deep breath. I wasn’t coughing. Wasn’t wheezing. But after about a week of this, my husband was concerned and asked me to go get checked out. It was late on a Sunday afternoon, so I went to the Urgent Care nearest us. Filled out the form. Honestly wrote down ‘Wellbutrin’ and ‘Zoloft’ in the spot that asked which medications I took daily.

The doctor comes in, glances at my chart. Says, “I see you take Wellbutrin and Zoloft.”

“Yes.”

“Do you have an anxiety disorder, then?”

Again, my honest answer. “Yes, I do. But this feels like it’s asthma.”

She checked me over briefly. “You’re not coughing.”

“No, I’m not. But my chest is tight, and it’s hard to catch a full breath.”

She looks me up and down. Takes a step backward. (I mean, you stand too close, you catch the crazy, amirite?)  “I think this is an anxiety flare.”

I didn’t even argue. I mean, anxiety is weird, and maybe it was just coming on me differently.  I said usually my anxiety flares come with sweating, hammering heart, panicked thoughts. She responded this could be just an unusual presentation.

I said, “Okay.” That’s it.

She went on. “But I’m not giving you any Xanax today.”

What? “That’s cool, because I didn’t ask you for any.”

“You know that’s addictive, right?” She’s looking down at me then, over her bifocals.

“Okay. But again, I didn’t ask for it.”

“Let me ask you this. How long have you been taking these two medications?”

I think back. “Zoloft, about a year. Wellbutrin since February.”

She nods. “Mmhmn. Okay. And do you know what set off the problem? Anything in particular?”

“Uh, yeah.” I shift uncomfortably on the exam table. The paper crinkles beneath me. “Both of my siblings died, and I had a hard time dealing with that.”

“I see. And what did they die from?”

“Lung cancer.”

“Both of them? Hhmn. Do you think you have lung cancer?”

“Uh… no.”

“I could see why you’d think that, why you would worry you have tumors in your lungs. That would make you paranoid.”

“I’m actually not paranoid. I don’t think I have cancer. I came in with what I thought was an asthma flare.” Now I am getting anxious, and swinging my legs. Getting twitchy. It’s hard to sit still. It’s also getting difficult to look this very judgmental physician in the face, because she’s not listening to me at all and is making a helluva lot of assumptions.

She presses her lips together. Glances down at her clipboard again. “Right. Right. Listen, I know how this works, with people like you. I can tell you flat out, I am not giving you a Xanax prescription. Trust me, I’m doing you a favor.”

“Can I leave now?” I hop off the table. Sling my purse back over my head, so it hangs crosswise. “I’d like to leave.”

“I’m sure you do,” she says. “Since I’m not giving you any medication.”

So, being honest about which medications I take to manage my anxiety disorder automatically makes me, by turns, I guess, a liar, paranoid, a hypochondriac, AND a drug seeker. That’s cool. Super cool. I was so angry when I left, my hands were shaking as I held the steering wheel.

In fact, if she’d had access to the entirety of my medical records and scoured them with a fine tooth comb, she’d have seen zero instances of me abusing substances of any kind. I barely even drink alcohol. And I’ve never in my life even had a Xanax prescription. Never.

Fast forward to the present time. For several years, I’ve had a problem with my left shoulder. I’ve got some joint issues in general, and this shoulder in particular will act up now and again. It begins with pain and stiffness from the shoulder blade and moves into the joint, shoulder, and down the side of my ribcage. Inflammation sets in. If I don’t get something to get the inflammation down, it’ll end up freezing and then I’ve got a real problem, because I spend forty-plus hours a week typing at work, plus, you know, this writing gig I do in my “free time.” So in the spirit of being a responsible adult, I called my family physician on Monday to see if I could get in to see her. I know what I need – either oral steroids or a steroid injection to kill that inflammation. But my doctor is retiring next month, and her receptionist said she’s completely booked until the day she leaves. I was directed to go to the Urgent Care.

Well. That’s cute, right? I’ve been trying to talk myself into going for the last four days. Can’t seem to muster the gumption to go. Because now I feel like if I walk back in there, saying I’ve got pain and need something for the inflammation, it would be just my luck to get the same doctor and she’s going to think I’m there seeking pain killers. Or more Xanax. Or who-the-hell-knows-what. Nope. I just can’t do it. Instead, I’ve been eating handfuls of Motrin every four hours. Icing the shoulder. Applying heat. Doing stretches. Every day the joint locks up more and more.

For as much talk as there is among medical professionals regarding mental health care, how much has really changed? Has anything actually changed? Because it’s sure feeling like being open about my situation only gets me more judgement. More assumptions made. And it’s certainly discouraging me from seeking the medical care I honestly probably need. It’s really frustrating.

If I don’t see out the mental health care I need and take my medication daily, I’m a crumbling mess unable to function and barely able to care for my family. BUT, if I do take my medications and am open about it, apparently it’s assumed I’m a drug-seeking liar out to get my hands on whatever pills I can. How do I win in this situation?

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Everything else, Grief, Writing

Prose, Pain, & Plans

 

There’s something about the change of seasons – especially the transition from summer to autumn – that ignites my  creativity. My brain slides from “yeah, on the weekends I work a bit on that next book” to “yeah, you need to stop sleeping for a few weeks because now we’re crocheting a couple of blankets and maybe a new shawl, sewing a coat, and writing three fiction novels. OH WAIT! NEW IDEA! Okay, now we’re also doing a non-fiction book about learning to live with grief.”

It’s been busy for me, which is probably a good thing, given I’m just about one month from the first anniversary of my brother’s death, and it seems every day assaults me with painful reminders. The last eleven months have probably been about the most agonizing ones of my life, and for a while there I wasn’t certain I was going to be able to get through it. I think I’ve been pretty open about all of that. Last year in August, before my brother was diagnosed, I would never have imagined the following months going the way that they would. So much changed in the blink of an eye. Last year in November, I wasn’t certain I would be able to function even minimally… like, ever again. At all.

Yet, here we are, nearly a year later. No denying it’s been rough. But there’s a lot of beauty, too. A lot of laughter. Much has changed, but change isn’t always terrible. During the crux of the worst of last winter – mentally, I mean – I went through sort of a manic phase where I couldn’t stop moving or creating. I feel as if maybe that was a way my brain was trying to protect itself, flooding every second with creativity. Ideas. Imagination. But it had gotten to a point where holding still, not creating every single second, physically hurt, and I don’t think that was a healthy extreme, either. I was productive, but exhausted.

I wrote and wrote and wrote. Released three books between November and May. And then, although I knew which books I wanted to focus on next, that frantic creative pace slowed way down over the summer, and I began to worry I would not be able to finish another book. Ever. To be honest, though, I generally go through some sort of phase like after writing furiously for a while. It just lasted longer this time, so it started to freak me out. But I’m in it again, now. Not quite the manic, frantic buzz of last winter when the bats had overtaken the belfry and were throwing nightly raves in it, but the typical creative rush I often fall into around the transition to autumn.

I was a little bit worried when I released The Knowing Child in May, because it turned out to be more angst-laden than the first two books. I wasn’t certain how it would be received, but as it happened, it appears to be a favorite amongst my Windy Springs readers. I had planned for the fourth Windy Springs book to be Knowing Rogan, a prequel of sorts featuring Rogan’s early life before he met Keisha. I knew how it would start and exactly how it’ll end, and what will probably happen in the middle, so I’ve been working along on that, though I wouldn’t say with much gusto until here lately. Then I took a break, moved on over to the aliens and turnips (yes) story I started a few years back and which is SO. CLOSE. to finishing, if I could just plow through these last few thousand words. However… a few weeks ago, Captain Dash started talking (as he is wont to do) and would NOT shut up. I thought, well, I’ll just scribble this down, as a jumpstart for later on when I start his book. But his words became a waterfall in my brain and I couldn’t make it stop. So I *might* have to switch the order of books four and five, and release Knowing His Madness first, though doing so will not alter any timelines at all. It’s just not what I expected to be doing.

and then –

And then I had a dream. I know that sounds wonky. But really, what even am I, if not wonky? Anyway. I dreamed the book I was writing was a collection of pieces I’d written on grief since my sister’s death a few years back. I’d asked in my FB group if there might be any interest in such a thing, and the response was surprisingly positive. I toyed around with the idea a bit, then just to sort of see, I started collecting bits and pieces of writings on the subject and lo and behold, I’ve already got about forty-thousand words. Tentative working title is Grief in my Pockets. I’d like to get it out around the holidays this year. We’ll just have to see how that plays out.

It’s awesome when the characters are “talking” as much as they are right now, and there’s so much I want to be writing. But the fact is, I work full time at the law firm, and I live with six other people (and three dogs. and several fish.) in a house that is not a  mansion. Even when I am at home and maybe have time to write, I have no office or really, any quiet space in which to do so which is not a complaint so much as a snippet of reality. So quite often I write sporadically in stolen moments – on my phone during my lunch break at work, or while waiting in the lobby of a doctor’s office, or standing in the kitchen while I’m making dinner. I’ve been aiming for a thousand words a day on any one of my current projects. Some days I hit it, some days I don’t, but that’s always my goal. When  I do finish, then it depends on my editor’s availability, and of course, my limited budget. Even if I finish all four books by the end of this year, there’ s no way I  can afford to publish them all at once. Still, though. I enjoy having all these stories living so vividly in my upstairs. It’s a curious sort of joy.

That’s where I’m at, for  the moment. I try to mention my plans now and again on all the different platforms, because I know a lot of folks follow me only in one spot on the vast web. I’m most consistently active in my FB group, which is a delightful mix of eclectic folks much like meself. That’s also where I do live videos and Q & A days, so if you’re interested in that sort of thing –

As always, I’m so thankful for the readers who share my blog posts, my book posts, my newsletters. Thank you for telling others about my work, and for reviewing (Yeah. I notice. Thanks.) Thank you for being excited about what I’m doing, and for sending me messages about how my writing has affected you. It means so much, and I absolutely could not do any of this without you. Onward.

 

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Bits and Whatnots, Everything else, Grief

Poking Holes in the Oxygen Mask

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“In the event of a decompression, an oxygen mask will automatically appear in front of you. To start the flow of oxygen, pull the mask towards you. Place it firmly over your nose and mouth, secure the elastic band behind your head, and breathe normally. Although the bag does not inflate, oxygen is flowing to the mask. If you are travelling with a child or someone who requires assistance, secure your mask on first, and then assist the other person.”

It can be difficult, living with an anxiety disorder. Some days I feel almost normal, and some days the anxiety monster is working in full force, overtime, like it’s going to get an extra week of vacation and a free turkey for Christmas if it just puts in a little extra effort. Some days things seems pretty good. Some days it seems like every part of my life is about to be entrenched in a crisis, only I have no idea what the crisis is going to be, so I just have to keep waiting for it to arrive.

Over the last year – and it’s been almost exactly that, almost exactly a year now, since my brain went to shit and my marbles fell all over the floor – and while my anxiety disorder may not be quite so outwardly visible now, it’s still alive and functioning. The medications I take daily do help, as well as the breathing exercises I learned in therapy and other self-help tools, such as visualization, meditation, removing myself from stressful environments, and delegating certain daily tasks to others so I am not quite so overwhelmed. One of the biggest things I struggle with as far as managing my anxiety is the constant onslaught of catastrophic news. It’s nearly impossible to get away from. I quit watching the news. I unfollowed any news pages on social media, months ago. It didn’t help. I unfriended and unfollowed people who can only seem to post about Every Terrible Thing Ever. I’ve muted and blocked multiple accounts. I click the ellipses above FB posts, then click to hide posts forever from that person or organization. I haven’t watched television in months. Not even reruns of The Office.

But it’s impossible to stay away from it entirely, regardless how hard I try. People are gleeful when they’ve got bad news to share. Believe me, I’m aware of what is going on in the world. I know. And yes, it is awful. Absolutely. I do my best to speak up. To be an ally. To advocate. But I cannot immerse myself in Every Terrible Thing Ever, not constantly. Not every day. Because I’m still trying to hang on to my brain with both hands.

And it matters. It matters that I keep myself doing okay.

Living with anxiety makes it difficult to reign in my worry. I’m already a worrier, by nature. Adding anxiety to that is like dumping lighter fluid on an already blazing fire. I’m over here trying to stop, drop, and roll, and the rest of the world is showing up with wagons full of matches.

Imagine a time when you had that fight or flight response activated. That moment you looked out and for a split second, couldn’t see your child in the yard. Or your beloved pet ran across the street and nearly got hit by a car. Or you woke from the most horrific nightmare, your heart hammering, palms sweating and shaking. For a few minutes, you couldn’t calm back down, even after you knew everything was all right. You’re jittery. Waiting for something awful to happen. Your  mind is racing with all sorts of terrible possibilities. Ten minutes go by. Half an hour. Your heart settles into its regular rhythm. Your hands are steady. It’s okay, now. Everything is okay.

When you live with an anxiety disorder, it doesn’t work that way. Even after you realize there is no longer a threat, that fight or flight response just keeps amping up. Hours can pass, and your heart is still hammering. Your hands are still shaking.  Your mind is coming up with all sorts of frightening scenarios. You’ve lost focus. Your legs are bouncing as you try to sit still. Tears prick the backs of your eyes. Long after the initial fear has passed, you might still end up with chest pain. A panic attack. Struggle to catch your breath.

Of course, you still have to work. Parent. Take care of your life. Drive. Buy the groceries. Walk the dog. Even when every nerve inside you has been pulled taught all day long and your body cries for rest.

Imagine waking up feeling this way every day. But you are determined to push through. You’re exhausted, but drag yourself to the shower. Fix your hair. Make it to work. You sit in the parking lot for twenty minutes, doing your breathing exercises. Thinking peaceful thoughts. Meditating. You’re going to focus on one good thing, you think. It’s a beautiful day. Okay. You’ll focus on that. Remember how the breeze feels. Remember the sunrise. Remember that fat white cloud shaped like a dragon. “Good morning,” you say as you enter the office. “Beautiful day out there, isn’t it?” You make yourself smile. Take another deep breath.

“Did you hear about the celebrity that died? Isn’t it awful?”

“I heard there was a flood, five children died, can you imagine?”

“Did you hear the business down the street caught fire? They lost everything!”

You try to block it out. Focus on work. But it’s already made it through your brain. Once again, your chest is tight. Breaths coming in short, shallow gasps. Your hands shake as you type. Your skin is crawling. Nausea hits.

You make it to your lunch break. Hope to distract yourself by scrolling Facebook.

DEATH! DESTRUCTION! SICK BABIES! NATURAL DISASTERS! IF YOU DON’T SHARE THIS POST YOU’RE A TERRIBLE PERSON!

You close the app. Put your phone away.

Stop for gas on the way home. Try to focus on something positive, even something tiny. But the pumps are now equipped with Gas Station TV, and there’s no way to get away from the cheerful voice describing all manner of terrible news.

So you make it home, exhausted. Dinner. Dishes. Fall into bed.

Can’t sleep, because you’re anxious. Still shaky. Headache. Another bout with nausea. Toss. Turn. Cry. Take deep breaths. Feels like your chest is caving in. Sit up. Focus on breathing. Legs are restless. Get up. Walk around the house in the dark. Get back in bed. Finally fall asleep. Have horrific nightmare revolving around death, destruction, sick babies, natural disasters, you’re a terrible person, imminent apocalypse. Wake shaking. Sweaty. A scream in your throat. Check the clock. Get up for work.

Start the entire cycle over again.

Existing with a brain like this is exhausting. And of course, it’s not that I expect the world to change because my brain is fucked up. But I hope others can understand when I need a break from the constant barrage of Every Terrible Thing Ever. And maybe if your loved one is living with an anxiety disorder, consider how your words might affect them.

People with anxiety aren’t sticking their heads in the sand. We’re just trying to survive. Some days feel like we’re running through a mine field, just trying to make it to the other side mostly intact.

On a flight, they tell you in an emergency, put your oxygen mask on first. It’s not because you don’t care about everyone else. But you won’t be any good to anyone – including yourself – if you don’t have oxygen. The onslaught of incessant Terrible Things is like poking holes in someone’s oxygen mask. Is it necessary? Is it helpful? No.

We’re just trying to breathe, man. Please let us.

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Off Days

You ever have those off days, where everything feels crooked? That’s me, today. I can’t seem to find my footing.

Its been a frustrating week with several personal & household battles, on top of three of the four cars (two belong to our daughters) needing some kind of work done. I left my vehicle at the mechanic’s last week for two days to get the alternator fixed, but instead of fixing that because they couldn’t find the problem, they fixed other things they found wrong to the tune of $400. Now the alternator is still having issues.

My husband has been sick and feverish for days, and he kept shivering. I noticed our house kept getting warmer yesterday but thought he must’ve turned off the air because he had the chills. Nope. Turns out, the A/C just quit working.

There was a modest vacation scheduled for next weekend, which unfortunately fell through.

This week, it seems everything I put my hand to fails. The vehicle. Housework. Yesterday I kept waiting for the water in the pot to boil, only to realize I’d turned the wrong burner on. The dryer kept getting on the wrong setting and not getting loads dry. This morning I typed and retyped and retyped a will, because I kept making the same stupid mistakes. I’m fortunate my boss is a patient person, because I’ve screwed up more ways today than I can count. And it’s not even afternoon yet.

My keyboard, printer, and mouse at work are all being absolute brats for no reason at all.

It feels like I’ve got bubble gum stuck in the cogs and gears of my brain.

I know that none of these things are a big deal in the grand scheme. It’s just cumulative irritation coupled with anxiety, but man oh man. I’m working on taking deep breaths and focusing on positives and I’ve even been messing this morning with what I call my “worry rocks”, little magnetic rocks I twirl in my hand when I’m anxious. It’s like that sensation when a tag in your shirt keeps bothering and bothering your skin, except I feel that way all over inside and out.

I am frustrated today, it seems, with everything that ever was or ever will be. But possibly most frustrated with the fact that my tossed salad doesn’t taste anything like a Snickers bar.

All that frustration has got to go somewhere, I guess. So I’m sitting in my car on my lunch break, venting on my blog.

 

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Everything else, Grief

The Burden of the Beast

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I forget sometimes. Even though I know the beast; in fact, have known it now, for  many years, I forget. It comes slowly. Quietly. I watch for it, I memorize its stealthy steps. I plan ahead, how to handle an attack.

I feel its breath on my neck, its heavy weight on my back. I ignore it. I fight it. I run from it.

Still. The beast comes.

It comes in the night, invading my dreams with visions of grotesque accidents, twisted bodies, loss after loss after loss. Some mornings I write the nightmares out in a spiral notebook, just to get them out of my head. Sometimes the dreams are so terrible, I cannot bear to conjure even a faded image of them on paper. Me – a fantasy and horror writer who delights in writing about gristle and blood and death.

The nightmares are too much, even for me.

It’s inside me, pulling my nerves so taught they vibrate. Leaving me so agitated, my skin begins to itch. I absently scratch at my arm or leg and BAM – oh, hives.

This pattern repeats so often, I should know it like I know the back of my hand. Still, it catches me off guard.

Clenching stomach. Headaches. Fatigue.

Why am I so tired? I whisper to myself as my eyes flutter shut in the middle of a workday.

Why am I so tired? I ask my husband, when the alarm goes off in the morning and I feel like I haven’t slept at all.

Why am I so tired? Over and over and over.

And then I remember. The beast.

When people think about anxiety, they often imagine the five second panic attacks shown on television. Watch the character swallow a Xanax. There, now. All better. Life goes on.

The reality is that anxiety is so much more. It affects the entire body. It affects sleep. Work. Hobbies. It affects eating. The ability to relax.

Anxiety affects everything. It is fucking exhausting. I know it, yet I keep forgetting. Every time. I get so frustrated with myself.

It’s been mentioned to me that I seem to be “dwelling.” I don’t feel like I’m dwelling. In fact, I feel like I’m fighting to keep pushing forward. Some days are really difficult, but still, I get up. I work. I write about grief, depression, and anxiety quite a bit, that’s true. Not because I’m dwelling on my losses – because I’m still working on processing them. It’s not an experience to get over, but an experience to learn to live with. I am still learning.

Sometimes words come to me and I feel compelled to get them out of my head. This happened a few days ago, so I put them out as a Facebook status. I got quite a bit of feedback on that post, people messaging to tell me they felt the same way, or thanking me for the words. I’m going to share them here, as well:

“There will be times in life when it feels so cold and dark you think you can’t take one more step. This is it – the one thing in life you just can’t get through.
But you can. I know you think you can’t, but you can.
Right this minute, you may be in the coldest, darkest ditch, overwhelmed by the wind that threatens to topple you.
Please take this knowledge and hold it tight; bury it deep in your heart –
The sun will shine for you again. One day, you will hear yourself laugh and be startled by the sound of it, but recall what a beautiful feeling it is to laugh. One day you will be struck by the simple beauty of a butterfly or a newly blossomed flower. One day there will be words in a random song on the radio that strike a sense of recognition through your soul, and you will know that somewhere, someone else has felt the same way you feel, and it will spur you forward.
Take these tiny moments in. Allow them to be a balm for your raw edges.
The sun will shine for you again.
You just have to keep getting up.”

These words encompass my feelings over the last year. It has been dark. Some days, it still is. But colors are becoming bright again. Music is enjoyable again. There are tiny moments in each day where I feel grateful to be breathing. Grateful for my life. I can create. I can laugh.

Some days, the beast still comes. Even in happiness. Even when I’m determined to enjoy myself. Even when I focus on peace.

I believe this is my new normal. I can accept that. The more I get up, the more I choose joy, the more I create, the smaller the beast becomes. But I’m not certain I will ever be free of it.

I can live with that. I am strong and can carry that burden. And on days that I can’t, I’ve learned to ask others to help me bear it.

In the middle of October last year, we drove my brother and his family to Nashville. It was his wish after we learned of the severity of his diagnosis. On the drive back to Michigan, he wanted to stop in Kentucky at the Mammoth Caves. He remembered our parents taking us there when we were small, and he wanted his son to share in that experience. As it happened, after several busy days in Nashville and the drive to the caves, my brother was too ill to do the tour, but he insisted we take his son and go.

We honored that wish. It was an eerie feeling, stepping down into that cavern. Our group was maybe twenty people, I’d guess, plus the tour guide. We walked cautiously in the dim light, turned a corner, and lined up, as the guide requested, along a sturdy rail so he could tell us about the history of the caves. Part of the way through, the guide asked everyone to put their cell phones away. Then he turned off the remaining lights.

The darkness was overwhelming. I could hear breathing all around me, but saw nobody. Not even my hand in front of my face was visible. Logically, I knew we were safe enough. But after several silent seconds in that blackness, my heart began to pound. Icy fingers of fear crept up my spine. The beast was there, pressing down on me, shortening my breaths.

But then I remembered, we were really just a few feet underground. If I held the rail and followed it back the way we had come, in less than a minute, I’d be back outside in the light.

The sun had not disappeared. I’d just moved away from it.

With that knowledge, the burden of the beast lessened.

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When the Wind Comes.

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There are days it just sneaks up on me. It doesn’t seem as if anything in particular sets it off. Sometimes it’s a cumulative effect; an anniversary date has passed, or I’ve read or seen something that reminds me of one of them and over the course of several days it all builds up. June is always a busy month for me, because weekends in June I work at the Ren Faire, but it’s also a difficult one, because there are so many of those painful anniversary dates to get through.

My dad had two birthdays. All his life, he celebrated on June 21st. The first day of summer. The day before my parents’ wedding anniversary. When my eldest daughter was about a year old, my parents decided to go on a cruise. When Dad went to see about his passport, he needed a copy of his birth certificate. After procuring such, he was startled to see his date of birth listed as June 12. He went to his mother’s house to question this discrepancy. My grandmother, a no nonsense farm wife who raised eight children (all born at home) while also maintaining a job at a restaurant, responded, (paraphrasing here) “Listen, Dale, you were one of eight kids. I was busy. I was tired. I don’t remember which day you were born.”

My sister’s birthday was June 15th. And then of course there was Father’s Day, which always kind of bites when you no longer have a father to visit. It was also my brother’s wife and son’s first Father’s Day without him.

While I got through these dates actually pretty well, doing my best to keep busy and generally filling my mind up with enough caffeine and yarn and extra tasks at work, and Ren Faire fun, etc., repeat, to keep me from over-focusing on my losses, there came a reckoning day. I was blindsided by the intensity of it. Like a powerful wind that’s been gaining speed for hours before plowing into a rickety barn, the grief struck me down in the middle of a work day. I was fine, working along, typing and filing and laughing with my coworker, and all at once I was NOT fine, not fine at all. Tears poured forth, furious and salty. The terrible weight that had suddenly taken up residence in my chest made it nearly impossible to breathe. I turned my head, grabbed my purse, mumbled something about taking my lunch early, and staggered out to my car. I dropped the driver’s side seat back as far as it would go, so nobody could see me sobbing, and called my husband. He talked soothingly to me for several minutes, and then reminded me to do some breathing exercises or try to meditate until I had a hold of myself. By the time we’d hung up, what had started as another wave of grief had morphed into a full-on anxiety attack. When it was time to go back in, I’d cried off all my make-up and my face was red and puffy. I’m fortunate to have kindhearted coworkers who are caring and understanding. But I was “off” for the rest of the day, and when I came home, I was so exhausted I curled up on the couch and stayed there until bedtime. My limbs all felt like lead.

I hate to use the word “trigger,” because I feel like it implies I want or need other people to censor their speech and that’s not the case. But I’ve found that one of the things that amp up the anxiety is when I see or hear about siblings coming together during a crisis. My family and I were always so close; the sort of family who would rush to be with one another during a hardship. The night my brother died, I remember walking into the hallway on the way to his room. My aunt Carol was standing there, crying and shaking her head at me. “He’s already gone,” she choked out. I’d missed his death by eight minutes.

As I stumbled into his hospital room, there was my Uncle Russ, mom’s brother, and his wife. None of them lived near the hospital, but they’d dropped what they were doing when they got the call from my mother and sped to the hospital to be with her. To help hold her up. They huddled around her, stroking her back, murmuring words of comfort, getting water, tissues, whatever they could. My mom’s other sister lived out of state, but by the next day had already booked a flight back to Michigan.

Now and again it hits me that I will never again have that. In times of trouble, I will never have my siblings to help hold me up. I will never be able to call them to talk through a struggle I’m having.  It’s a precious thing to have, and one that’s probably taken for granted by many. It’s one of those things you expect to have. Until all at once, you don’t.

I’ve heard it said that after something awful happens, you “get bitter or get better.” I’m not sure that’s entirely accurate. Maybe you “get bitter or get empathetic.” Or perhaps you “get bitter or become more compassionate.”

Am I “better?” In some respects. I’m certainly better than I was six months ago, in the sense that I can think straight most of the time. I have the energy to take showers, and I remember to wash the shampoo and conditioner out of my hair now. I remember the steps I need to take to wash the dishes or the laundry. I can go to Walmart most of the time without having a panic attack from the crowds of people.

But there are holes in me that will never again be filled. There is pain that will never lessen. I’ve just learned to carry them inside, next to love for my remaining family, and joy at my kids’ laughter, and snuggles with my puppies, and the memories of extraordinary sunsets. I try not to focus on the unfairness of it, because indeed this situation is unfair. No way around that. But if I only focus on that, I miss out on the pure delight of holding my sister’s grandchildren in my arms. I miss out on beautiful days with my family. I miss out on friendships and art and all the simple parts of life that are not really simple at all. The pain and the joy just have to exist together.

My losses have changed me irreparably and that’s a truth I’ve had to accept. I will never be the person I was before. Part of that change is this excess of empathy and compassion. I have known the pain that has knocked me down and nearly kept me there, so when I meet someone with a similar struggle, my soul recognizes that hurt and I’m compelled to reach out. I listen more. I’m slower to come to conclusions about others. Constantly in the forefront of my thoughts is the knowledge that I have no idea what anyone else has been through, just as they have no idea what I’ve been through. Kindness makes a difference. A smile, a thoughtful word – they make a difference. The gifts of time, of acceptance, of unconditional love – they make a difference. I try to just meet people where they are at in life and love them right there.

There are other changes that aren’t so positive. I feel deeper, in every respect. Sometimes that is difficult to handle. I still struggle with what feel like stupid changes: I still cannot watch television. I haven’t read a book in months. My attention span is a problem, much more so than before, I think. I spend a lot of time lost in my own head. Quite often, I feel like I’ve slowed way down, though that might just be my own interpretation. I catch on to new tasks slower, it seems like I move slowly and though my brain is as crowded as ever before, it feels like the gears are turning at an impossibly slow pace.

On one hand, it seems impossible that all of this has even happened, and on the other, it feels like it keeps happening, day after day, minute after minute.

My rule for myself back in November was that I just had to get up and put on clothes every day. I knew if I allowed myself to stay in bed for one day, it would all be over for me and I’d never get back out. Here were are in July, and I can honestly say my life is far fuller than just climbing out of bed and pulling on leggings. I’ve put out three books since November, I’ve made new friends, I’ve laughed, I’ve gotten a new job, I’ve learned new skills, I’ve been through therapy, I’ve learned a lot about myself, about resilience, about grief, depression, and anxiety.

I’ve changed a lot for both the good and the not so good. But the important thing is that I’m here. Every day, I wake up. I interact. I seek out art and joy and beauty. Life will never be what it once was. I will never be the person I was before.

But that doesn’t mean life isn’t worthwhile.

Maybe it isn’t always beautiful. But there will always be beauty in the pain. There will always be a spot of sun in the darkness.

And even when the harsh wind comes out of nowhere to knock me down, I will always, always get back up.

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Everything else, Grief

A Grief Named Lucille

 

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It comes out of nowhere.

Wait. That isn’t accurate.

It’s there, always. Sometimes it’s hiding, just under the surface. Sometimes it’s shoved down so deep it seems like it’s gone.

Sometimes I forget, just for the briefest of seconds, when I encounter something that really strikes my soul in some way, like a string of powerful song lyrics. I pause and absorb that small fraction of time; peace settles within, and I am overwhelmed with the perfection of what is happening around me. Puppies playing, children laughing, snow falling, my husband’s warm hand linked in mine.

I never see it coming, until THWACK! Negan has sneaked up behind me, and Lucille connects to the back of my neck with a force so abrupt and painful I can do little more than collapse on the floor and try to catch my breath. The crushing hopelessness is upon me and I can’t think how to get out from under it.

It’s been a while since I had a full-on anxiety attack. I came close the night before Easter, when we (as is typical for us) were running around getting things at the last minute for the kids’ baskets. Walmart was so crowded, most aisles were impossible to get down. I could feel the familiar signals creeping up on me, and I pulled my husband aside and told him I needed to finish and get out of there. While we finished getting the final few things, I worked really hard to keep my breathing even, to not give in to the panic thrumming in my veins. What I’m finding is I’m okay and I’m okay and I’m okay and I’m okay and then all at once, I am absolutely NOT okay. It doesn’t have to be anything big that sets me off.

Saturday I had a table at a local book event for horror authors. It was inside a busy farmer’s market, but I knew the room we’d be in was off to the side and less crowded, so I figured I’d be fine. And I was. Mostly. Some of the authors in attendance I knew from the previous year at the same event, and it was nice to talk and catch up. Sold books. Had some good talks. Met a couple new friends. During a lull, I was standing at the table next to mine, talking with the artist, flipping through the pages of his albums, checking out prints I wanted to buy. Nothing in particular was going on. I wasn’t being crowded or upset. But all at once, I felt it creeping up my spine. And I was so hot I couldn’t catch my breath. My chest began twitching. Clenching. I hurried back to my seat. Drew my shawl around me. Pulled my hair up inside my hat. My husband went out and bought me a big bottle of water, then sat with his arm around my shoulders until the panic passed. It wasn’t a full-on attack, but still bothersome. For the most part, I had a great day.

But then I overdid just a little. After the event, I went to a store, and then to a busy restaurant for dinner. I did okay while in those places. I was okay, and I was okay, and I was okay, and then about 2:30 a.m., while I was in bed, in the dark, relaxed and dozing –

Dammit. There she was.

Lucille.

At first, I thought, maybe it’s asthma. It could be asthma. The weather has been weird and my lungs can be sensitive. My chest tightened. Yeah. It’s probably asthma.

Please be asthma.

Even as I thought it, I knew it was that freaking bat. At least that time, I was already down. I curled up and burst into sobs. I searched my brain for breathing exercises to do. Thought calming thoughts. Tapped my fingers. Wept until I was all snotty. Caused my husband some alarm. It lasted probably a half an hour before it began to ease.

Occasionally, people will ask me why I keep talking about grief and mental health issues. There are happier things to write about, aren’t there?

Well, sure. Of course there are.

You’re usually so funny! Write something to make people laugh!

That’s true. I do have a knack for humor. I enjoy making people laugh, and often write that sort of thing.

But life isn’t always funny. Sometimes it hurts. Sometimes the pain is so disabling, you struggle just to get up off the floor.

It’s important to talk about those parts of life, too. People need to know they aren’t the only ones struggling with depression or anxiety or grief. They need to know someone out there understands what they are feeling. If there is anything worse than being depressed, anxious, and grieving –

it’s being depressed, anxious, grieving, and completely alone in it.

Sometimes people say I seem to be dwelling on my grief.

“Get over it.”

“It’s been months already.”

“Pretend to be happy, and then you will be.”

I know there is a lot of truth in the idea of focusing on the positives. And I do, truly. Maybe even more than most people do, because I know how awful it is to have family and happiness ripped away in a blink of time. Focus on your joys. Be grateful for what you have. Absolutely.

But, guys, there is an enormous difference between “dwelling” and “acknowledging.”

Forcing yourself to act happy all the time, refusing to acknowledge your grief and pain, that’s some unhealthy shit right there. That agony you shove down deep and refuse to talk about? It’s gobbling you up from the inside out. Dwelling on the past and your hurt, yeah, it’s probably not so good. But taking it out, recognizing it’s there and it’s valid, finding ways to keep getting up every day in spite of it; finding ways to laugh although you ache –

that’s important. Grief and pain, those are experiences that shape us. Change us. Empty and refill us.

So I keep getting up. Keep writing. Keep looking for small joys to hold onto. Keep enjoying those fractions of time that feel like utter perfection.

Even though I know Lucille is going to hit me again. Knock me down. Make me weep.

I keep getting up.

My bones ache. I bleed. I think I can’t do it one more time. It’s not possible.

I keep getting up. Sometimes it might take an hour or a day or a week to get entirely upright.

That’s okay.

Because it’s worth it. I promise, it’s worth it.

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End the Stigma. Or Don’t.

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There are lots of trending hashtags about mental illness lately. #endthestigma. #thisiswhatanxietyfeelslike. #mentalhealthawareness. #mentalhealthmatters.

Talking about mental illness is trendy. Self-care is a hot topic.

People are tweeting about their experiences with mental illness. The medications they’ve taken. The therapies they’ve sought.

We’re told now is the time to be open about our struggles. To reach out for help and support. People are more accepting now than they were in the past. Admitting you have a mental illness isn’t as taboo as it once was.

Except.

Except when you talk about your struggles with mental health openly, and people automatically assume it means you’re violent.

Except when an admission of mental health treatment makes others so uncomfortable they leave the room.

Except when the first thing said about every school shooter is that they were mentally ill. When ten seconds after the news of another shooting breaks, there are claims the shooter was taking SSRIs. Or has taken them in the past.

And someone looks at you and asks, “Isn’t that the medicine you take?”

Except when friends ask if you aren’t afraid of “getting addicted to that medicine.”

Really, Susan, I’m no more afraid of being addicted to  Zoloft than I am of being addicted to my asthma inhaler. If I need it, I need it.

In sum, it’s a new era. People no longer need to be ashamed about struggling with their mental health.

Be proud! (wait no not that proud)

Be open. It’s the only way to start the conversation. Just… you know. Not that open.

It’s kind of hip now to talk about depression. But mostly the depression that hits you after your dog dies and you cry and eat six gallons of ice cream and you feel sad for a while and then you remember all the good times and you get outside and get some sun and then you’re fine.

That’s the comfortable kind of depression people want to hear about.

Nobody wants to hear about lacking the energy to shower. Or get dressed. Or roll out of bed for three days straight. Nobody wants to hear you need a combination of four medications to make your brain work well enough to function at a minimal level. Nobody wants to hear you can’t make basic decisions or remember how to get started washing a stack of dirty dishes.

When I’m open enough with someone to flat out state that my brain went to shit for about six months of the last year, people avert their eyes. Tell me I’m exaggerating and I’m fine. Ask how much longer I’m going to keep taking these medications (probably forever tbh). Can’t I just take a vitamin that would do the same thing? Or talk loudly over me about a completely different topic (all righty then, point taken). Sometimes they get up and walk out of the room.

Last fall, when I abruptly realized I was definitely not okay, I was honest. I told the people around me, “I am not okay. My brain is not okay.”

Mostly the response was, “Of course you’re okay. You’re fine.”

But I wasn’t. I really, really wasn’t.

When I say I’m in therapy and seeing a psychiatrist I feel like I automatically need to follow that statement up with an assurance that I don’t own a gun, actually wouldn’t know how to operate one, am pretty much a pacifist, and feel guilty if I inadvertently step on a worm and hurt it. I am whatever you want to call the opposite of violent. Listen, all I want to do is make sure everyone is warm and safe and has enough Reese’s peanut butter cups to last the weekend.

Mentally ill is not a synonym for evil or violent.

Until we stop using it as such, all the hashtags in the world aren’t going to make mental health an easier topic to discuss.

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Bits and Whatnots, Everything else, Grief

One Step Forward. Three Hundred Sixty Four Steps Back.

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People who know me keep asking if I’m feeling better.

I’m never sure how to answer that question.

What exactly is “better?”

Better from grief? From depression? Anxiety? I don’t know. It’s all tangled up in me and I can’t always pull the different emotions apart.

If the question is, Have you gotten over the deaths of your siblings? Then the answer is no, and I never will, so you might as well stop asking.

If the question is, Are you making any progress at all? Then the answer is, Yeah, I think so.

It feels like I am. In really, really, miniscule ways, I’ve made some progress. For a long time, I felt so raw I could barely stand most of my clothes, so it’s been leggings and soft shirts  most of the winter. But the last few weeks, I’ve been able to wear jeans.

Last Thanksgiving, I hosted the family dinner. My niece brought a turkey. It was too heavy to pull out of the oven, so I transferred much of the juice to a big Mason jar. I set it on the windowsill above the kitchen sink. I’ve been looking at that jar for months, disgusted with myself for not taking care of it, but too exhausted and overwhelmed to deal with it. Two weeks ago, I dumped it out and washed it.

Three weeks ago, as I was walking out the front door to take my boys to school, my youngest son said something funny and I heard myself laughing. Like, really laughing out loud. Hard. And I thought to myself, Oh my God, I’m laughing. How long has it been since I laughed last?

My therapist says she’s proud of me. I wonder how I got to a place in my life where it means so much for a therapist to tell me she’s proud of me for doing simple things like leaving my house or washing the dishes.

I’ve gone to dinner at a couple of smallish restaurants without having an anxiety attack. I told the psychiatrist I’ve been seeing about the anxiety attacks that hit when I’m in crowds and she told me to breathe into a paper sack. So that was just phenomenally unhelpful. Glad I’m getting charged nearly $200 for that bit of advice.

Still can’t watch television or read much. I’ve found a few more musicians I can tolerate the sound of, so my playlist has gotten slightly more diverse, but I still listen to the same songs every day. I have no idea what it is about these artists that makes their music tolerable, but for the moment, I’m just glad I can listen to any music at all.

But it feels like in more ways than I’m moving forward in, I’m stumbling back. Anxiety makes me more awkward than usual, and the usual is pretty damn awkward already. I work in a very small office, usually with three other people that I know pretty well. I have my own desk in a room with two other desks, but there’s usually nobody else there when I’m working. So I walked in last Thursday to find a new person had been hired. She seems entirely pleasant, but I was caught off-guard. I couldn’t think of what to do, anxiety had my brain all jumbled up, and even in the best of times, I’m not huge on hugging, especially with people I don’t know. But the new chick is a hugger, so she jumped up to hug me hello and introduce herself. Entirely inadvertently, I jumped backward and flung my hand out like “stop.” Immediately, I attempted to apologize and shook her hand, babbling incoherently about my own inadequacies and anxieties, and generally making the situation even more awkward. Anxiety ballooned this incident in my mind until it was nearly all I could think about. At the end of my shift, as I was walking out, I thought, I need to make this right so it’s not super awkward next week. So I stopped to shake her hand again as I left, and said the most inane thing I probably could have. “Sorry I’m so awkward, but I’m seeing a psychiatrist about it.”

I’m sure that helped matters. First impressions and all that.

My husband surprised me with a night away at a hotel and planned a night at a casino. He said I seemed overwhelmed and needed a break, which was true. The hotel part was awesome but the casino was crowded and smoky and I had to take frequent breaks from the people. I wrote part of my new book out on my phone while my husband played games, so I didn’t have to interact with anyone. The next day was release day for When Knowing Comes, and as I’d decided to go low-key and stress-free as possible, I’d planned a live video in my FB readers group for the event. We came home twenty minutes before the video was to start. My laptop decided to do updates at the last second, which left me in a panic. The FB app on my phone wouldn’t work for no apparent reason. Finally I grabbed my husband’s phone, downloaded FB, and started my live video twenty minutes late, which left me out of breath, anxious, and shaky.

I find I just really need a lot of preparation before I do anything. Time to work up courage. I hate feeling this way. It isn’t what I’m used to and I get frustrated with myself for not being able to get back to “normal.” Which, okay, with me is still pretty weird but even so. I used to be able to roll with the punches when plans changed. I want that part of me back.

Some days, I am anxious all day for no apparent reason. It feels like that sensation when you tip over the top of a rollercoaster hill, all day. All night. And I can’t link it to anything in particular, so I can’t fix the problem and by the time evening comes, all I can think about is going to bed so I can escape that feeling. Going to bed because you’re tired is a very different thing than going to bed because you can’t stand being awake anymore. Either way, though, I wake up over and over and over. I can’t remember what a solid night of sleep feels like.

But on the upside, I’m having less nightmares about my family and pets dying in front of me. So I’ve got that going for me, which is nice.

I’ve pulled back more on social media. I’ve unfollowed or left all the groups I was in except my own readers group. Weekly, I cull more “friends.” I’ll continue paring down until I get to what I feel is a manageable number. I understand it hurts people’s feelings, but right now all I can do is try to take care of my brain the best I can. My focus has narrowed to my household, my mom, my job, and writing.

And speaking of writing.

I’m writing. A lot. For so many months, I couldn’t write anything, and that was painful for me. Now, I can’t seem to stop. I’m nearly finished writing the third Windy Springs book, and my mind races with ideas for the fourth.

A lot of the time I feel like all I’m doing is treading water. But hey, at least I’m not drowning anymore.

One step forward. Three-hundred-sixty-four steps back.

But still, a step forward is a step forward. And even one step is better than none.

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Bits and Whatnots, Everything else, Grief

Life in Color

Sometimes forward steps seem so small. It’s imperative to remember that any step forward is still a step forward. It doesn’t matter if that one tiny step has taken you years to make.

Forward is forward.

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Yesterday, I did something I haven’t done in many years. Longer than that, actually. Something I haven’t done since I was about fifteen or sixteen. And I’m a long way past that now – forty-two.

It seems like a tiny thing. A normal thing. Something I imagine most humans do on a regular basis. Let me back up a minute.

When I was a young teen, my sister went to cosmetology school. I went in often to let her practice on my hair and nails. Eventually, she graduated, and after that, anything that was done to my hair took place either in her kitchen or mine. I haven’t been to a salon since then. Not once. Those times when she was cutting or coloring my hair were catch-up moments for us. What’s been going on, what the kids are up to, who she was dating.

Now, my hair isn’t something I spend a whole lot of time on. I wash it, blow dry it, and just leave the Medusa curls as they are. It’s thick, heavy, and generally uncooperative, and it just takes too long to do anything else with it. I’m also not good with keeping up on coloring it, so by the time I get around to it, I’ve got a couple inches of roots grown out. By the time my sister started having pain in her shoulder, it had been months since I’d cut or colored it. Then she wasn’t able to move her arm well enough to hold her scissors. And very shortly after that, we knew it was stage 4 cancer.

After she died, the thought of anyone else touching my hair was so repulsive I couldn’t stand it. For a long time, I did nothing with it. By the year after her death, my hair was such a mess, even I couldn’t stand it any more. The ends were dead and splitting inches up from the bottom, and it was making the curls look more like I’d just stuck my car key in a light socket.

I looked up how to cut my hair in layers on YouTube, and found a tutorial for doing it by putting my hair up in a ponytail and cutting. I did it myself in my bathroom, and when my hair hit the floor I cried because she wasn’t the one cutting it. That first time was rough, but once I figured out how to do it, it wasn’t so bad. Two, maybe three times a year, I’d just pull my wet hair up in a ponytail and lop off a couple of inches. It took me four years before I could let anyone else touch my hair, and even then, it was my daughter.

She’s a cosmetology student at the local community college. Last summer, I sat in my kitchen chair and let her even up the mess I’d made of my hair and then color it. It was funny how similar her hands felt to my sister’s. Quick and confident.

About a month ago, I woke up one morning and decided to cut myself bangs. They turned out all right. I just used regular household scissors. But after that, I felt like I needed a big change. I decided to color my hair purple.

So my daughter made me an appointment, and yesterday I drove to her cosmetology school and spent six hours getting the red out of my hair and the purple and brown put in. It was crowded and noisy, and at times, that was difficult for me to handle. Since my brother’s death, I haven’t been out in public much. Crowds trigger my anxiety attacks. But I made myself sit through it. Even though my daughter is the one who did my hair, it seemed so strange to be in a salon. The experience took me right back to when I was fifteen, sitting in a twirly black chair at my sister’s school.

When it was finally all done, I left the school and drove straight to my church. A friend of ours had passed away and I went to his memorial service. After I parked my car, I checked myself in the rearview and realized I had purple dye smeared on my cheek.

I went in anyway.

Funerals have gotten hard for me. I know most people don’t actually like funerals, but for me, having lost so many family members in a short span of time, it’s difficult for me to fight through flashbacks, and sometimes I have trouble catching my breath. This was the second funeral for me this week. The church was crammed full of people, so for the second time yesterday, I had to force myself to handle being in a crowd without having a panic attack. I made it through the entire service but didn’t stay for the dinner because my personal limits had been reached. Sometimes I just have to say no and either people will understand or they won’t. I can’t control their reactions.

It seems like a small thing – going to get my hair done. But for me, it was a huge, huge step forward. Yesterday was the longest consecutive amount of time I think I’ve spent in a crowd since my brain went to shit about six months ago.

That tells me two things:

  1. This combination of medication is working for me.
  2. Hope is out there. Somewhere.

Grief and its aftermath are such hard things to live through. But I’m doing it.

I’ve said before that intense grief is like suddenly having an enormous hole in your leg. At first, it seems like your life is over – how can you function with a gaping hole in your leg? You can’t walk. You can’t do anything. It’s awful. You need help with everything and it’s unimaginable that you will ever have any semblance of a normal life again.  At some point, though, you realize you can do some of the things you used to do, you just need to do them in a different way. And later, you don’t need as much help. You can go on with your life, though you might need a cane and you’ll always have a limp.

My purple hair is me walking with a limp.

But at least I’m walking.

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