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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Everything else, Grief

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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