The Truth About the Valley

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Like an exhaustion that can never be cured by sleep.

Like a chronic agitation brought on by sounds, lights, and fabrics. Nothing is right. Everything is too much.

Like a hungry ache down deep inside, filling every bit of me up with sadness, while somehow also leaving me achingly empty.

Like tears sitting behind my eyes that never get the chance to fall.

That’s what depression feels like.

Like eight solid hours of cracking stupid jokes at work to keep everyone else laughing.

Like belting out the off-key lyrics to songs that once made you feel happy, just in case.

Just in case they bring a tiny bit of happiness once more.

Like teasing and plotting and planning and hoping out loud.

That’s what depression sounds like.

Just over a week ago, my husband’s brother was found dead at his home. At first it was utterly surreal. And then it was a rush of planning and notifying and shopping for appropriate funeral attire because my kids had outgrown their dress clothes. It was walking through fog and knowing what’s coming next. It was being terrified of losing my shit again and knowing there’s no other way through grief but to force my way through it. It was not crying when we heard and it was not crying at the funeral and it was wondering when I’d become such a coldhearted bitch. It was being afraid of falling asleep lest the same nightmares that assaulted  me after my own brother’s death turned up again. It was we can’t do this again, not again, not so soon, we won’t make it. 

And of course, it was making it through anyway. Because that’s what we do. We make it. We have to.

But somehow during the haze of all the things we needed to get done and the requesting time off work for yet another funeral and the trying to be there for my grieving kids and the making frantic phone calls to family members before the sad news hit Facebook and some loved one found out that way, I forgot to refill the medication I need to make my brain work right. I remembered suddenly just before we left for the funeral, so I called it in to my local pharmacy. But we came home late, after the funeral dinner at my church, and we were all sort of stunned still and I forgot about picking it up until after they’d closed for the night. The next morning started with my daughter losing air in her tire, so we let her take our vehicle to work and took hers to get the tire fixed – there’d been a nail in it. Then my son called me, his voice all wobbly, because one of his best friends and his mom had been in a terrible car accident, and he wanted us to drive him up to the hospital so he could sit with his buddy while his mom was in surgery. When the tire had been fixed and we got our daughter’s car back to her place of work, and then made it home to pick up our son, his friend had already gotten a ride home, so my husband took him over there. And nowhere in that flurry of activity did I remember about my medication. I did eventually get it picked up, but not before I’d gone several days without it. How many days? I can’t recall. I’m unsure if that’s what has set off this latest emotional valley. Regardless, it’s here. It’s here. In my bones. In my soul.

But I’m trying. I’m working at remembering to practice self-care. I’m working at remembering to take a shower. To drag my sorry self up in the mornings for work. To pull the cleanest-looking clothes off the floor to dress myself. I’m hoping this valley won’t be a long one, because already every step I take feels as though I’m shuffling through heavy mud. Having half my hair dreadlocked is handy, because yesterday I literally didn’t even hit my hair with a brush before work, I just pulled on a wide headband to cover the mess. I listen to people talking about going to the gym and what foods they can eat on their current fad diets and I quietly remind myself to just take a step, take a step, take one more step.

And I smile. I laugh.

Like a writer furiously writing a new book. Two new books. Three.

Like a weird hippie chick snuggling her dogs and chunky guinea pig.

Like a responsible adult, clocking in at nine and out at five, every day of the week.

Like a responsible parent of kids with a chronic illness, making appointments with the home nurse and scheduling IV pump swaps with the infusion company.

Like a responsible mom hassling the public school principal over my son’s missing English class credit until she does something about it.

That’s what depression looks like.

Every part of me, every cell, feels like it’s been bruised. My hair hurts. My eyelashes hurt. I find it extraordinarily difficult to tell the difference between being tired and just not wanting to be awake any longer.

Isolation is my best trick. I’m better at that than I am at crocheting or sewing or cracking jokes or probably even writing. Isolation is easy. When things hurt too much, my instinct is to cocoon down. I crave silence. I crave solitude. But it’s addictive. I can’t just lock myself away so I can avoid dealing with pain. If I did, I might never come back out. I force myself to return texts. I force myself to answer my ringing phone. I force myself to connect with people. I force myself to go to the grocery store for necessities.

I’ll be fine, as I always am. Even if I fall completely apart again, I’ll glue my broken bits back into some semblance of order and carry on. At some point, I will. But not today. Today I am tired. Today I don’t have the energy to put my broken pieces back together.

Today I’ve been laughing and typing and calming down upset clients who call the office. Today I stopped on my way home from work to pick up a dollar store Barbie doll, because my coworker turned 37 today and told me she’d never gotten a Barbie doll cake when she was a kid but had always wanted one, so I’m typing this piece while waiting for the rainbow sprinkle cakes to cool enough to frost them. It’s been years since I’ve made one but I’m fairly certain I remember how. At least… well, we’ll see. I’m pretty sure I can do it, anyway.

Today I threw together a new book teaser for my fantasy series, and created a silly poll in my FB group, and I ate half a chicken quesadilla at lunch even though I had no desire to eat, because my awesome boss bought us all lunch today. Today I reminded myself that my guinea pig won’t be dead in the morning, even though I always think he will be, because I know that depression and anxiety lie to me all the damn time about things like that. Today I brushed my teeth and put some braids in my hair so I have less hair to brush before work tomorrow. Today I went to the grocery store to get milk. Today I didn’t practice my guitar, because, once again, my kid accidentally busted my strings, but I thought about the way I place my hands for each chord so I don’t forget.

Today I got up and I tried. I made myself think of all the positive things I have to look forward to. I have a gift card to Barnes & Noble so I can order new books, and I absolutely love to get books in the mail. I have an upcoming tattoo appointment I’m insanely excited about. I’m thinking about a new piercing. I’m thinking about getting new guitar strings, because I’ve got to teach myself to play the opening part of “Minority” by Green Day. I’ve written a new book that people seem to really like, and more importantly, I’ve written a new book that *I* completely love. I’m so proud of that book. There’s a lot of truth in it. Covered in pirates and magic, but still. It’s there and it’s mine.

Tomorrow I will get up and try again. I will probably wear the same sweater I wear most of the time, because it is soft and has pockets and is weirdly comforting. I will take this silly Barbie cake to work, and I will laugh at some point, and I will check on my guinea pig way too many times, just to make sure he’s fine.

It gets dark here in this valley, but I hold onto the knowledge that sunshine will come again because it always has before. It might take a while, but still. I trust it will come. Until then, I will keep trying.

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Going, going… gone.

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It seems our life has become filled with pets to varying degrees. We’ve got three dogs now. My mom – who tolerated us kids having dogs when we were small but never enjoyed them on any level – has a dog. My daughter and her boyfriend have a 30 gallon tank filled with fish, including one named Ted who is pleasant enough as long as he’s fed regularly, but doesn’t mind gobbling up his small friends if the fish food sprinkles don’t arrive on time.

My brother was an avid animal lover, and couldn’t resist taking in one that was in need. Over the years he’d had cats, dogs, a parrot named Wilma, pygmy goats, rabbits, pigs, ducks, chickens, and I can’t even recall what all else. When he got sick last year, he had a cat and seven dogs. Realizing he was becoming too frail to be able to care for them, he made the heartbreaking decision to rehome some of them, including his own special dog, Beau. My daughter’s boyfriend had hoped to take Beau, but his landlord squelched that idea. However, a pastor friend of my brother’s offered to take Beau in, and that was nice, because he still had opportunities to visit with him on good days. They also had to rehome two of the chihuahuas, and their pit puppy, Jade.

They kept my sister-in-law’s tiny chihuahua, my nephew’s little shih Tzu, and their elderly family dog, Ellie Mae. The chihuahuas were able to find a new home together, which was great. Jade, the pit puppy, went to a friend’s home, and though she was hesitant at first, eventually recognized they were her new people and settled in.

I called my sister-in-law last night to wish her a happy birthday. It was her first one since we lost my brother, and I figured it’d be an especially difficult day for her. In the course of conversation, she mentioned how sad she was about Jade. The last I’d heard of Jade, she’d been doing well in her new home, so I asked what had happened. Apparently, the electrical wiring in the house caught fire, and though the couple were able to rescue their baby from the blaze, they were unable to reach Jade in time, and she perished in the fire.

Some of my brother’s dogs I’ve known since they were pups. I didn’t know Jade well and really had no connection to her. My brother’s family lives a couple of hours away, and Jade was just a baby dog when they had her, so I never got the chance to bond with her. But hearing she’s passed hurts me with a strange, sharp ache. It’s like another little piece of my brother has disappeared, and I hate it. It’s nobody’s fault. The fire was a tragic fluke, and I certainly don’t blame anyone for Jade’s death. Still and all, that pain is there.

Trying to hold on to all the memories is like holding my hand beneath a faucet and trying to catch all the water. Of course the memories are there, but there are so many, over so many years, that the more recent stuff gets shoved to the front. It makes me feel kind of frantic, like I’m losing my family all over again.

I’ve been toying with the idea of writing a book about living with grief. It would be a compilation of pieces I’ve written during and after the deaths of my siblings. I don’t know if anyone would actually read it, but it feels like it might be cathartic for me, and I like the idea of having a tangible something with these precious memories in it. I was reading through some of the posts from when my sister died a few years back, and came across one detailing the moment she left this earth. I had written that with four of her children there, and my mom, my aunt, my sister’s ex-husband and her two little dogs perched on her bed, there hadn’t been much space. I had grabbed on to my sister’s ankles as she took her last breaths. Just to touch her skin. So she would know I was there. It was the only part of her I could reach in the crowd.

I had forgotten that. Or maybe I didn’t forget, but the memory was shoved to the back, less urgent than the others.

I don’t want to forget those little things. I don’t want these tiny pieces to float away.

So I think I’m going to do it. Tentative working title is “Grief in my Pockets.”

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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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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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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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Spilling.

I’ve been watching my mother-in-law die.

She’s been sick since Easter, and has been fighting with all her strength to hang on, to pray, to believe.

The problem is, her strength is fading.

Remember the cartoons when we were young, where the character would stick his finger in the dam and plug the leak? Then five more leaks would spring up, and he’d stick in the rest of his fingers. More leaks, and he’d plug them with his toes. His nose. Then suddenly, he’d grow an extra hand to plug the new leaks.

It’s been like that.

One problem gets fixed, and six more spring up. Liver failure. Kidney failure. Kidneys spontaneously recover. Celebrate! But wait…now the liver is worse. Paracentesis, every two weeks. Weekly. Bi-weekly.

Neutropenia. She’s back in the hospital now, but I cannot visit this week, because I’ve been sick with a sinus/ear thing.

C. Diff. Having spent so many years now raising children with immunodeficiency, I know how bad that is.

It’s strange. When the news first comes, it’s a sharp pain, white and hot. I want to deny it, even as I hear the words the doctor is saying.

After that first pain, though, I start to feel as though I’ve got two hearts: one made of steel, and one of emotion.

I shove the one made of emotion behind the steel heart, and do the things that need doing.

Doctor visits. Appointments for tests. Days spent in the ER. Days spent admitted. Medication pick-ups.

I’ve heard that people say I’m coldhearted. I’m not.

It’s simply that I have been down this road before, and I know what is coming.

Crying won’t change it.

But in this space in between a terminal diagnosis and death, there are things that need to be done.

I can’t accomplish those things if I’m a weeping mess, so I do the only thing I know how to do.

Separate.

Put the pain somewhere else. Anywhere else.

Deal with it later.

I could do what others do: talk, talk, cry, and talk, and ignore that the person who is dying needs help. Needs groceries. Needs medication. Needs to go to the doctor.

But my conscience doesn’t work that way. I can’t not step in to help a helpless human being.

And the part of me that ought to be able to embrace both the emotional side and the harsh reality of this terrible situation seems broken.

The pain will come out later, in a rush.

I’ve found that I tend to move through grief by spilling words, and if the current situation is any indication, I’ll be writing another book this year.

I’ve got the idea in my head, but it’s harder to get the words out when I feel as though my emotions are frozen. But the story is there, in my head. In my bones.

It will be dark. But people who’ve read my stories before should be getting used to that, I guess.

In the meantime, I will keep tapping along at it and stopping back in here to release some of the words I don’t feel like I can say out loud.

Words are harder, that way. Out loud.

But they’ve got to spill somewhere.

Thinking on a Swing.

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Yesterday morning, my daughter woke to learn a friend of hers had died in a tragic accident. It’s rare that she cries, watching her face, her eyes, so broken, tore at my heart.

She’s seventeen, but of course, still my baby. Well, one of my four babies, all growing up now.

Today I am watching my little great-nephew, Emmett. He’s small and round and has long eyelashes and smells the way all babies do, with that purely addictive scent that implores complete strangers to want to stop and sniff a baby’s head.

This morning I was sitting on my front porch, holding this baby, rocking him, watching his face in his sleep. Now and then his eyelashes flutter, and his mouth will suddenly start sucking as though he’s got an imaginary bottle. Perhaps bottles of milk are what fill his little baby dreams.

I didn’t sleep well last night. I would start to nod off, and tears unbidden would slip down my face, mourning for a 16 year old boy I never met, crying for the family who is trying to understand how this tragedy happened.

I worried for my daughter, how she will deal with this, another death in what is beginning to feel like an unfortunate string of deaths in and surrounding our family. Just a few weeks ago, I sat each of my kids down and explained, one  at a time, that their grandmother is terminally ill.

This baby I’m holding on the swing this morning, he would have been my sister’s first living grandchild. Her first died before he was born, and that was news we received just before my sister’s lung cancer diagnosis. That baby’s name was Liam. If Liam had lived, he would be two years old now. My sister would be 51 in mid June.

There are so many things I should be doing this morning. I have a short story that was due out on Sunday, and I have things I need to get priced for the quickly approaching Renaissance Festival, and a costume to finish to wear at the festival, and an ever-increasing stack of dishes in the sink.

Instead, I’m rocking Emmett on my front porch swing.

I’m looking at his perfect little face, his tiny rosy cheeks and chubby baby legs.

I’m thinking, his future is ahead of him, and he has unlimited potential. And one day this baby will walk, and go to kindergarten, make friends. One day he will fall desperately in love, and out again. Learn to drive. Fail a math test. Figure out what he will do as an adult. Go to college. Perhaps travel. Start his own family.

I’m thinking, one day, the mother of the boy who just died held her son and thought these same thoughts.

I’m thinking, I held each of my four babies, rocking them, imagining their futures, as well.

I’m thinking, my mother held my sister this way, and never imagined she would have to bury her so young.

I’m thinking, my grandmother held my father this way, not dreaming that when he died, she would still be living, but so far taken with dementia, she wouldn’t know it.

The siblings of Michael, the boy who died, they saw him fall.

We never had the chance to hold baby Liam.

My thoughts are so disjointed today, I’m struggling to focus on any task I set myself to. I’m filled to overflowing  with emotions that I am unsure of how to handle. So I write, in the hopes of making some sort of logic out of them.

When my children were small, I tried to so hard to control their world. Anxieties were endless. What if they put something poisonous in their little mouths? Bumped their tiny heads too hard? What if I relaxed for just one second and something terrible happened?

Now they are older, and I worry about other things.

I think, what if a drunk driver hits their car? So I say, “Be careful! Wear your seatbelts!”

I think about all sorts of terrible things, and repeat things in my head, like don’t  go too far, and please don’t try drugs, and come home safe to me as if the repetition of thoughts will somehow change the outcome of a choice.

I’m not even sure this post makes any sense.

I’m just holding this precious baby, and thinking  on a swing.

The Way Things Used To Be.

 

So many things have changed since July 27, 2013.

I worry more about my mother.

My mother worries more about me, with a tremble in her voice.

I have more nightmares. Horrible, vivid nightmares.

I dream about my remaining siblings dying. About my mother dying. My children. My dogs.

My husband.

Their deaths are gruesome.

I dream about my close friends disappearing without a trace.

About adopting a new dog; bringing it home, naming it, loving it. And then it dies.

When my alarm buzzes in the morning, my blankets are on the floor and the cases have been ripped from my pillows.

I have come to dread the night.

And my child dreams. She wakes up crying, unable to catch her breath and unsure if the reason is asthma or anxiety. She runs to the living room and checks the dogs, feeling all over their tiny bodies for any hint of a cancerous lump.

My other daughter is just angry. All the time. Every day.

Every night.

When my husband or children are more than five minutes late coming home, I immediately imagine they’ve been in a terrible accident, and then stand in my living room arguing with myself over the stupidity of my worry.

Even as I peer through the window and down the road for any sign of our vehicle.

This winter has been riddled with colds, and anytime I sneeze or cough, my mom shows up with money to shove in my hand and pleas to take myself to the doctor.

“Catch it early!” she says, followed by a hard swallow. “Catch it early and you’ll be okay!”

Because my sister did not catch it early, and my sister was not okay.

And I see the difference in our family doctor, and I remember how she wept when my sister died. If my children or I go in for an asthma flare or a sinus infection, her face pinches up as she examines, quickly firing off questions like Do you have worsening pain anywhere? Night sweats? Random fevers? Have you felt any lumps? Have you checked for lumps? Let me check.

It’s different now.

Because we are now A Family Touched By Cancer.

And that makes everything change.

I notice the difference when I know a friend from long ago — when we were melodramatic teens giggling over boys and clothes and dances — is now battling her second round of cancer. I want to reach out, I want to connect and do something to help, to make it easier.

But I sit paralyzed.

Because I don’t want to see cancer anymore.

I close my eyes against tear-jerker commercials begging for money for bald children, fighting for their lives and losing their childhood innocence and can’t I give just a little of my paycheck for them?

I grab the remote and change the channel.

I can’t. I can’t bear to see it. Or touch it. Or hear it.

I am selfish.

I notice the difference when I stand weeping in a Wal-Mart with a skein of yarn in my hands, wondering at the tears slipping down my face; the burning, choking sensation in my throat.

I think and think and count the days and finally it strikes me. It’s the twenty-seventh of the month, the anniversary that somehow my tears remembered but I tried to forget.

My tears never forget.

I see a tall, thin women in a store; long blond and brown and meticulously straightened hair hanging down her back. I see a brightly colored, peace sign bag swinging from her shoulder and my heart catches and stops for a second and I think Oh! Charlotte is here!

And I take two or maybe three steps and then I remember.

I used to visit my father’s grave. I would cry and leave a poem I had written and I’d notice the cherry cough drops or a crushed Bud Light can left by one of my nephews and I would smile a little bit.

I haven’t gone since we buried my sister next to him.

I cannot bear to see her name on a headstone.

It was too soon.

And I wasn’t ready.

Everything has changed. Every bit, every piece of life has changed.

And sometimes I just really miss the way things used to be.

Little Boy Lost

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It started over the summer.

We’d known for awhile that my sister had cancer, and though I’d offered to talk it out, he seemed okay about things. We’d go over to visit my sister, and he’d laugh and smile and talk and give hugs and play with her dogs and we would leave and I would watch him and he seemed okay.

Until mid-July, when my sister was in the midst of her last hospital admission, and the children begged me to take them to see her. That’s when things changed.

And he seemed okay while we were at the hospital, visiting. I made sure he had breaks from the sick room, and had snacks, and opportunities to talk. But after several hours, we left and went to a store, and in the middle of the store, he started a yelling argument with me, over a seemingly innocuous comment.

I thought, “What is going on?”

I felt angry. And hurt. And – much to my shame – I fed right into that argument. An argument with an 11-year-old little boy.

Until, in a very quiet, broken little boy voice, he whispered, “This is very sad! This is very, very sad, what is happening with Aunt Charlotte. This is very, very sad!” and then he hiccupped and wiped his tears and some runny nose snot with the back of his hand, and hiccupped again.

And I thought I understood, so the next day when we planned to go to the hospital, I arranged for him to go to a friend’s house to play and stay overnight. I thought the sight of my sister, bald and ravaged by this horrific disease that was pulling her away from us far too quickly, was what had him upset.

But while we were gone, I received a phone call from his friend’s mother, who told me Brennan was “a little upset, and wanted to come home,” and she put him on the phone.

My own stomach twisted into knots as I heard his tiny, tear-soaked voice over the phone, begging for Mommy, for time with his family, for home, home, HOME. He just wanted to come home. So I picked him up, and brought him home, and he explained to me that he felt he was having an asthma attack that didn’t get better with his inhaler. He explained to me how his chest felt heavy, but he didn’t wheeze or cough, and how he suddenly felt he would never be able to take another deep breath for the rest of his life, and how he looked around his friend’s new house and everything seemed unfamiliar, and bad, and sick, and he just needed to get home as fast as he could.

And I thought, “My God. He had an anxiety attack.”

I felt like I had been kicked in the face, my own breath taken from me, and my own chest felt burdened with a weight too heavy to bear.

I knew then that I hadn’t handled the situation appropriately, but I felt helpless to fix it. How do you do it right? How do you tell a young child that yet another family member he loves and believes will always be there is in the painful process of being ripped away from us?

How do I give him back the veil of innocence, the childhood security that should be his right? How can I make him feel safe, and that I will always be here for him, when it seems like everyone else is disappearing?

I don’t know. I really don’t know.

My adventurous, energetic, always-up-for-anything little boy had – seemingly overnight – become shy. More reserved. Afraid to accept invitations for play-dates. A trip to the dentist for a routine cleaning was suddenly something to be frightened of, and he insisted I hold his hand and bring a chair back to the room with him and stay.

Once my sister had come home on Hospice, he insisted he wanted to stay at Grandma’s house with the entire family. He wanted to be there for her last days, however many more we might have. He seemed confidant in this decision, and I thought, “Who am I to tell him no? Maybe this is what he needs.”

And so we all moved in to my mother’s house, and slept on the floor. He seemed to be doing okay.

Then my sister died. My little boy seemed so adult that night, patting our backs, bringing the adults bottles of water as we held one another and wept, bringing us tissues and whispering reassuring words.

He played at the funeral home. I heard him laughing.

But as this summer has progressed, I notice my little firecracker sleeping more. I notice my laid-back, cheerful boy starting ridiculous arguments over nothing. I notice he laughs less and cries more, and when I question him, he says it feels like everyone in the world is being mean to him.

Last week, we were driving home from a far-away doctor appointment and he fell asleep in the middle seat of our SUV. Curled up against the door with his pillow doubled-up against the window, he began to weep.

My daughter said, “Mom. He’s crying in his sleep.” She tried to wake him up, but he continued his fitful slumber.

It lasted over an hour, and I remained helplessly in the driver’s seat, maneuvering along on the crowded expressway, slapping at my own eyes as they burned and watered and eventually dragged some mascara down my cheeks.

My son sobbed. Hiccupped. Wept with great, gut-wrenching gulps. Tears streaked his face and his nose ran, leaving a giant, wet puddle of liquid agony on his pillow and blanket.

I listened to him shudder and sigh, weep and gulp and then snore. How could he possibly not wake himself up?

I’m not sure when my heart has twisted so painfully as it did that day, hearing my youngest child’s grief pour from him in such a pitiful manner.

And then he woke up and wiped his face and looked around. Disoriented. Dazed. He looked out the window and said, “Hey! We’re already almost home. That was a fast drive! Why is my blanket so wet?”

I told him he had been crying in his sleep, and asked what he had been dreaming about.

He told me there was no dream, just blackness in his sleep. There was nothing to remember.

I don’t know how to do this right.

Somebody tell me what to do.

Shattered

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Around 12:45 in the morning, on Saturday, July 27th, I broke a glass. I didn’t mean to do it, but it happened all the same. I knew the glass was slick, as there had been a cold perspiration about it for days. I knew it was slippery, so I grasped it tightly in my right hand. I was very conscious of that glass, and I was so careful, so gentle when I held it.

It wasn’t a fancy glass, but it meant a lot to me. You know how when you get really thirsty, and you open the cabinet to grab a glass so you can get a drink, and the first one you look for is that one, the one cup that feels just right in your hand, the one that seems to make your drink colder on a hot day? Yeah, that one. Sometimes, that special glass isn’t in the cupboard, and you feel a silly little bit of disappointment about it, but then you go ahead and grab another. It works, you know, it does the job. But it never does feel “just right.”

Anyway.

I’ve had this glass forever. I mean really, I can’t remember a time when it wasn’t there in the cupboard when I needed it. Dependable as a sunrise in the morning, it never let me down.  Sounds like a silly thing to say about something so mundane, doesn’t it? But it’s true. I enjoyed the familiarity of it, my favorite glass and I. We had our own little routine.

Lately, it had developed a bit of a crack in it. At first, the crack was just a tiny chip, and I tried to ignore it. Eventually, the chip grew to a small crack, but I found if I turned the cup just right, I could pretend it wasn’t there at all. A couple of weeks ago, though, that damn crack seemed to spread right across my glass. There was no way to turn it, no lighting trick or placement of my hand that could cover the giant crack. And do you know what was worse? Hundreds of rivers of slits, cobwebs of fractures appeared. I mean, it didn’t leak, I could still use it, but I had to be really, really gentle.  I felt in awe of this glass…to be so broken, yet so strong.

There was no way to fix it.

We had a crowd at the house that night, and even though I was careful about the frailty of my glass; even though I remembered to hold it just tightly enough to keep my grasp, but not so tightly I caused it any more harm; even though I was cautious about the perspiration dripping down the sides….even so, my glass still broke.

It broke in the darkness, the deep of the night so black the stars were barely visible. Just before 1 a.m., when the rest of the world had the audacity to be sleeping, that’s when it happened. And the world continued to slumber, just as it always had, just as if my glass, my special, perfect glass, had not just shattered all over the floor.

It happened so quickly, and it seemed that I watched it from outside myself: my grip loosening on the glass, then rapidly trying to tighten my grasp in time, Catch it!; the slow, slow descent of my glass through the air, like a penny dropping through water; the eventual crash, the wailing of my heart as I realized this was happening, really truly happening, and I couldn’t stop it.

SMASH!

Pieces were everywhere. I mean everywhere. Those tiny shards of glass scattered all over my house. I swept and swept, and still, I continued to find more sharp little triangles.

Even today, and it’s been just over a week. I get down on the floor to scrub, and feel a piercing in my knee. Where did that come from? Shoot, it’s another piece of glass. Just big enough to gouge my skin, just big enough to cause blood to dribble; streaks down my leg, bright red polka dots on my clean white floor.

I wonder how it is even possible that I can suddenly find these bits of glass clinging to my shirt, digging in to my chest, paining my heart.

I wonder if I will ever get all the pieces back together.

I just keep sweeping.