Sleeping Brain vs Thinking Brain, and: The War of the Phone

I have a problem with the phone. Over the years, I've tried to work with it. Build boundaries. Understand the needs of the people around  me. Move on. Accept it. For the most part, I manage.

Sadly, today is not a "managed" day. Today, I have a new appreciation for the depth of my phone problem. That appreciation is making me grumpy.

The problem is simple: if the phone rings when I am sleeping, my brain automatically kicks into hyperhighdrive, flinging myself towards the phone to answer it breathlessly, sounding awake and alert, which, coincidentally, sounds similar to panic.

It doesn't matter if the phone rings during an afternoon nap. Or late morning. Or "normal" phone hours. If I'm asleep, and the phone rings, my brain freaks out.

Inevitably, I crawl back to the bed (or, rarely, couch) to  nurse myself back to some semblance of sanity. The adrenaline rush leaves me nauseous. My heart races. My brain circles itself. It takes time to find a measure of peace physically - and then I can begin to find peace within the panic. This is a panic attack. Panic attacks are exhausting. And if I'm sleeping, it's because I was tired. So. Layers.

Given how often a phone rings around me, it seems strange that such a simple and normal thing is such a cause for distress. But knowing this originating event is easy. It's all tied up to my mother's illness and death.

I was two weeks away from my high school graduation when Mom was diagnosed with cancer. Life sort of fell apart dramatically - her diagnosis came after major abdominal "exploratory" surgery. During which they removed three tumors, most of her colon, and a few other odds and ends we keep in there. Surgery was a few days after she'd been admitted to the hospital. The day before her admission, she had worked her regular shift at Target. I was busy planning my graduation celebration... and then we weren't. We were busy with other things.

The next few months was a whirlwind of radiation, chemotherapy,  doctor visits, nurses visiting the house to help us learn ostomy care. And in the midst of it, my parents insisted I keep my spot at the college for the Fall, taking me 4.5 hours by car away from the unfolding disease. I agreed. After all, I had always thought of college as my "ticket to freedom." And I truly still believe Mom would get better. And, like any reasonable teeanger, facing my mother's mortality was terrifying and I wanted a reason to run away.

So I did. I moved to college, driven up by friends, so my parents wouldn't be burdened another thing to do. And because I was angry and scared.

During my first year on campus, Mom didn't get better. She got worse. The first semester, I wasn't very aware of what was happening at home. I talked to her, and to my dad, but they didn't say much. Until they couldn't hide it anymore. Enter: The Phone.

Dad called to tell me Mom had to go back into the hospital.
Dad called to tell me they'd scheduled a second surgery.
Dad called to tell me the surgery failed.
Dad called to tell me her prognosis was now terminal.
Dad called to tell me that she still wasn't well enough to leave the hospital.

Eventually, the end of the semester/year came. I made it back home.  Mom had made it home, too, after 40 days as an inpatient. She came home to die, with an unknown timetable. Her decline was excruciatingly slow, but also fast. Then,

My sister called me at work to tell me that Mom had died.

Fast forward to years later. The handset for the house phone only occasionally found its way back to its bedroom base. I would deliberately leave it on the first floor, because of the sleep/ring/panic cycle. Which is why, on one November morning, we slept through

My mother in law called, via their cruise line,  to tell us that my father in law was being transported to a hospital in Florida due to serious illness.

Getting back in touch her after we got the message 2 hours later was a nightmare adventure through "please hold" transfers. And it was serious. It was his last vacation. He, too, then came home to die.

Now, nearly everyone I know has a phone. They ring all the time. Now, the rings sound widely different, too. I don't notice the rings anymore. So much exposure. But I can't seem to get past the wall of sleeping brain/ringing phone.

I don't take my phone to my bedroom. Or, on the very rare times I do, I turn the ringer off. I finally accepted that there's no landline in my room. But. I share that room with my husband, and he does bring his phone into the room. This is a sort of tacit compromise - he overlooks the unplugged landline base, knowing that if his mom needs him, she'll call his cell.  He even uses his phone as a wake up alarm in the morning, and I've learned to sleep through it. Our situation has worked, mostly. It also led to today's appreciation.

His phone rang this morning. I woke, but not in a panic. Just a sort of foggy "what's that noise?" And then, he didn't reach over and silence the sound. Instead, he said "Hello?" Cue: Panic.

The nice pleasant sound of his ringer was enough to wake me, but not thoroughly. But years of phone use connected the act of answering the phone with the fact the phone had to ring, and my brain set off. Starting a day with a panic attack is not a method I'd recommend.

I'm working on just accepting it all. I'm not willing to venture into exposure therapy to "lessen" the distress response. I'm not even sure it would be very useful in this case. So it's time to just realize: sometimes I panic when the phone rings. Most of the time I don't. And, it's still all going to be OK. I think this acceptance will be easier tomorrow, after a full night's sleep.

20 Years: An Essay on Missing a Mom

My mom died on July 16, 1997. That's the starting point. The start of missing her. The start of the next 20 years. The start of a fundamentally different kind of life than I had known before.

Life is like this, I've found. A series of moments that divide things into "before" and "after." Before I could drive. After I graduated high school. Before I got married. After I had my first child. These individual events that together create a timeline to understanding what it means to just live every day. Death and life and everything in between. And mom's death was all those things. 

Today, a few days before the official death-iversary, my thoughts are full of the last twenty years. The time after mom died, rather than before. I don't think this is a commentary on my mom, the life she lived, the relationship we had.... I'm just nearly overwhelmed by the fact that twenty years have gone by. I've been busy. And each day closes, and another week begins, and then the next month is here, and now a year has gone, and so on and so on. Until. 20 years. 

It's such a weighty number. Somehow, it feels so much more than 19. A lifetime more than 10. 

Or maybe it's me that has changed so much. 

Over the years, I've written some sentences about all the things my mother has  missed. Meeting my spouse. Loving my children. Visiting my home. Stepping back and seeing me as an adult. In the midst of it, I have missed her. I have longed for her presence. I have ached for a relationship. And all for naught, because death is stagnation. 

Oh, I've learned some important lessons. 

I've learned that I'm comfortable wearing pants to a funeral now. When Mom died, I irrationally knew that I had to wear a skirt for her funeral proceedings. I only owned one black skirt, so I wore it two days in a row. Thankfully, I didn't spill anything on it during day one. I had to go to a funeral a few months ago, and I wore pants. Black ones. But pants anyway. And no one noticed, or cared, though  I may have heard my mother sigh a little in the back of my mind. 

I've learned that I can be an amazing mother. My mom wasn't perfect, and I've never tried to make her so in my memories. One lesson that she tried to give me was to be a powerful and capable woman, able to stand independently. The best way she could say this was "Don't grow up to be like me." And in some ways, I did grow up to be like her; in many ways, I am the better version of her. And now, I tell my children "grow up and be you, capable and competent, compassionate and a good human being." Then I teach them the skills they need to achieve this goal. 

I've learned that I can keep stepping forward into the future, even when the future is painfully uncertain, and that I will be OK. Because when my mother died, I was crushed by the loss and cast adrift. And yet here I am, 20 years later. A (mostly) functioning adult. 

That's how 20 years go by. One foot in front of the other. 

For a long time, when I thought about mom, I thought I might drown. I was a legal adult but an emotional child when Mom died. She was the glue in my universe. Losing her shifted everything I knew; the world became a dark nighttime bedroom without a comforting nightlight glow. Familiar, but full of frightening shadows shaped like monsters. Twenty years, though. You learn the shape of the shadows in twenty years, you make peace with the monsters. After twenty years, I've come to accept that I'm not going to drown. 

Though sometimes, her absence hurts like a pain I can't describe. 

Mostly, I've come to some terms with not having a Mom. 

It's terrible, really, to say or think that I've come to terms with the whole, raw deal. I still hate that she suffered so much before her death. Mom died with cancer, but the cancer ruined her digestion and slow starvation killed her. I hate that we bore witness to this decline, the slow march of disease through her body. 

Yes, there are still things I hate. 

And yet. I can't carry the pain of it all forever. So as the days have gone by, I have set down a little bit of it along the way. I've left it behind me like mythical breadcrumbs and the birds have stolen it away so that I can't make my way back there, to that place of crushing loss. I don't miss her more than ever but rather, I miss her a little less. 

This is a different experience for everyone, I know, the loss of someone you love. There's no right or wrong way, it is the way that destroys you or doesn't. Holding on to what could have been, holding on to what was - these things would have destroyed me. I don't think Mom wouldn't have wanted that.. and I know now, that I don't want that, either. 

On July 16, 2017, I'm going to sit down with my siblings and father and we're going to mark the date. I don't know what this means, to memorialize the dead so long after. For each of us, I'm sure it will be something different because though we all lost the same person we all experience that loss uniquely. It's odd, how this common thread is woven into our separate lives. But I can't begin, yet, to understand what this means to me. 

Twenty years is a long time. I've made friends of the monsters, or kicked some of them out, or simple learned to ignore their monstrosity. I look like an adult version of my teenaged self but I'm so much more than most people would guess. To date, my life has been full of growing and learning and adapting and getting better and better and better so I can't self-destruct. I'm surrounded by people who love me, and that's the best part of the whole thing. For twenty years, my mom hasn't been here. Not to love me, support me, be angry with me, play cards with me, bake cookies in my kitchen, sing out loud with the Christmas music, laugh with her head thrown back at on my jokes, or drive me crazy with the bells in her earrings.  And in those years, other people have come into my life. None of them are her, none of them replace her. And all of them make it easier to miss her a little less.

Letting Go, but not really.

It started when friends found they needed to move to Pennsylvania. It's about 656 miles away, and we couldn't believe we'd have to find a way to manage the distance.

Next, another friend died of suicide, leaving us heartbroken and tear filled.

Then, our father/father in law/grandfather breathed his last. Peacefully, he smiled good-bye and in his eyes promised time on the other side. We were heartbroken in a new way.

Then we found ourselves moved to share our home with another family. A family in transition to the mission field of Africa. We knew the deal - they would stay with us for a while, then move on. We didn't realize the love that would grow between us. And when we said goodbye there weren't words to carry it all.

And next came another move. Our friends were able to take up a new part of their lives. 4058 or so miles away in the middle of the ocean - also known as Hawai'i. We helped them pack their boxes, gave sweaty hugs, and left them to catch a flight.

So many tears in the course of less than two years. The world is too big, I thought. The world is so hard.

Grief is a funny thing. Some days you're overwhelmed. More often, it's like a constant thread of energy draining out of you. I miss the ones we lost. I yearn for the ones far away. All the time they're in my heart, waiting.

When the Sleeping Place isn't a Place Of Sleeping

I can't sleep.

PTSD is like that, sometimes. Often I'm not even sure why my brain is in hyperdrive. Today, though, I know why I can't sleep (and haven't been sleeping well). It's frustrating, because knowing isn't helping.

Five days ago our second floor a/c unit malfunctioned. We were about two weeks away from a scheduled HVAC upgrade, so we weren't totally caught off guard. But two weeks feels like a lot longer in the HVAC universe, especially when the days are suddenly hitting high 90s and in a matter of hours the second floor is a stifling 89 degrees.

Let's change the description, shall we? Henceforth the "second floor" shall be known as "Bedroom Section."

Because all the bedrooms are on the second floor. And we do all like to sleep in those bedrooms. Other suitable phrase substitutes for Bedroom Section include "Sleeping Place," "Rooms for Resting," or possible "The Place I Send the Children When They Misbehave."

It's not as  miserable as you might think, though. When the Bedroom Section reached a toasty 82 degrees, I moved a twin and two futon mattresses to the floor of the Master Room of the Bedroom Section. The room I normally share with only one other human. Then I wrestled a room a/c unit down our precarious attic stairs into said room. Close the bedroom door, turn on the room a/c, and like magic cool air begins to circulate. Cool enough to comfortably sleep. Cool enough that the kids asked me to make it a little warmer tonight.

So, if the Bedroom Section has a cool sleeping place, which also happens to be my own bed, why can't I sleep?

PTSD.

For me, one of the most common and ready to act symptoms of my PTSD is an "elevated alert state/heightened situational awareness." No matter what I've tried over the years, I can't seem to bring those levels down in a practical every day way. My brain is hardwired to hear the world around me, process the information, and assume everything is a problem.

You can imagine the stress of moving into a different house full of different noises.

Also, I'm a terrible travel companion. I'm irritable and anxious. I also don't sleep in motels. We may stop there, and pay for a room - and then I stretch out onto the bed for a night of listening and watching and convincing my brain that EVERYTHING IS FINE ALREADY. [This is also why I can't be a primary driver of a road trip requiring an overnight stop. Exhaustion is killer.]

I've lived in my house for 17 years now. I know its creaks and moans. I love the way the wind shrieks around the back corner in end of Summer storms. I shake my fist at the 3am birds outside the window. I can hear the click of the furnace as it comes on in Winter. Like all houses, this grand dame has a sound palette all her own and I've grown accustomed to her tastes.

But her tastes changed the other day, and I'm on edge.

The room a/c unit that is effectively allowing my family a cool and comfortable sleeping place is loud. The fan is loud enough to mute the noise from the rest of the house. I cannot sleep this way - my brain is wondering what's going on past the interference, trying to stay more alert than usual. [I actually don't think that's possible, but my brain has a mind of it's own.] When I turn down the fan, the room a/c unit has a sound palette of its own, clicking and sighing, and my brain turns each foreign note into an alarm call to action.

So far, the experience has been much like sleeping in a hotel, only I get my own bed and pillow and I can pet my cat while not sleeping. So, an improved motel experience.

I'm worried. I'm not a well rested individual, as a general rule, and am prone to debilitating insomnia. I'm not currently well rested, thanks to weeks of ongoing knee pain and then a sick kid who needed 4am comfort. I'm already on the back foot, so to speak, of a rested body.

And once the new HVAC is installed, the sound palette will be new again. Sure, I'll grow to appreciate the new effectiveness and energy efficiency of a new HVAC system. I'll start sleeping through the cycles of each machine. We'll become friends. But friendship takes time. And until then, every night of DANGER WILL ROBINSON, DANGER! is a blow to me.

I'm more than my physical self, and my body suffers when I can't sleep. I'm more than my mental well being, and it suffers, too.

We dance again, my Crazies and I, trying to get through normal things. Because sometimes, PTSD is like this.

Rambling Thoughts on Medications and Life

The alarm on my phone just sounded. It’s 2pm, the officially randomly designated time I take my afternoon meds. I had to start using an alarm when I started this medication, because I proved unreliable when I just tried to remember. I’ve taken a variety of medication in my life but this is the first one to be taken “Between Meals” and adjusting is hard. 

On the one hand, using my phone as an alarm for this is a reasonable — dare we say intelligent? — use of modern technology. It’s taken me nearly 10 years but I finally (usually) know where my phone is, generally remember to charge it, and figure out many of the useful features. So when I kept forgetting to take my meds, the alarm was a good resource. Since I started using it, I haven’t missed a day. Even if I can’t stop what I’m doing at alarm time, it’s a sufficient enough reminder that I do get to the task. Every day. I’m 100% “med compliant” with my phone. 

On the other hand…(there’s a downside? What?!?!). Using my alarm is a very public event. If I don’t dismiss the alarm in advance, it actually makes a noise. Maybe I’m out in the store. Maybe I’m in the library. Maybe I’m just really busy and can’t get to the phone within the first 10 seconds of the alarm. 

Now, sometimes I do dismiss the alarm in advance. It happens occasionally that I take my meds a little early. Thankfully, I don’t need my meds at exactly the same time every day so I have some freedom. 

And no, the sound of the alarm isn’t even that bad at the store, or even in the library. It doesn’t start out really loud, and I can usually unearth the phone relatively quickly, freeing the public from my noise pollution. 

But… then there are those moments when I’m just really busy. And almost always, that “really busy” happens around my kids. That’s just reality. I’m with my kids a lot. We’re together while I teach and they learn. We’re together while I take them to and from their extra curricular activities. We’re near each other when I’m making dinner, or lunch, or a complicated snack. This is our lives, one of togetherness. And (perhaps because of all the time teaching and learning) all my kids now read fairly quickly. So if I can’t get to my phone, one of the kids will swipe the alarm off and let me know it’s time. Time to take my meds. And when they remind me, it hurts. 

It hurts because I don’t want them to know I take any medicine. I know that’s an impossible goal — with all that togetherness it is inevitable that they’re going to see me taking medications. Really, it hurts because I don’t want them to know what kind of medication I take, or why.

I’m on antidepressants. Again. It was a difficult choice to start taking antidepressants. A choice I worked through and talked about with my care team. A necessary step, at that time, because I was using so much of my energy on managing my depression, anxiety, PTSD, and assorted other crazies. This time on the med wheel I’m taking something radically different. I can say honestly that three months in on this med has been the best experience I’ve had with any “emotion altering” pharmaceutical. This radically different medication has made my life better. Making my life better makes the lives of the people who love me better. 

I want to say, humbly but with satisfaction: I take medication for my mental health. My mental health care is just as important and real as my physical health care. 

But I don’t say that. I don’t even really feel it. So when my kids innocently help me out with a reminder to take my meds, the feelings of shame, failure, embarrassment, and incompetence all rear up at once. If I had enough willpower, my kids wouldn’t be exposed to this sort of thing. 

And I know it's all part of the crazy in my head. The mixed up ideas of what I'm responsible for, and what I am not. And knowing and loving me will help my kids be compassionate with others. One day, my kids will fully realize that I live with The Crazies. They'll look back and understand that those weekly appointments I attended was therapy. They'll know that the meds I took were an effort to make myself better, for the benefit of everyone. They will have lived through all the times in their life that I cracked under the pressure, and they won't be surprised that I'm a "high functioning" person struggling with mental health. 

Hi, My Name Is...

I had a panic attack today because I had a hard time buttoning my jeans. My jeans are supposed to be comfortable. Instead, they're tight. So I handled it like a person with an eating disorder and I skipped breakfast.

The first time a mental health professional suggested I had an eating disorder I nearly walked out of her office in protest. We all know the story about eating disorders, and the "new" face of eating disorders. [From now on, ED for short.] I'm almost stereotypical. Refusing to admit or agree to an ED diagnosis because I'm fat. ED isn't fat, ED is skinny girls whose ribs are visible, thin women who eat whatever they want and then throw it back up again. Fat girls are just uncontrolled. Fat girls just don't have any willpower. Fat girls are too lazy to exercise. I am many things, I thought, but I am not living with an eating disorder.

But I didn't leave her office, because I knew how much time I spent thinking about my food. How I would plan around eating. How I felt trapped by it. How lost I was in the disease. A disease I wouldn't believe I was facing. So I stayed in her office, and I kept coming back. I went to the group sessions. I learned a new language. I learned coping mechanisms.

I never accepted the idea of an ED diagnosis. For awhile, I lived in a place where I just treasured being able to eat without obsessing. I didn't plan around food. It was liberating.

And I got fatter.

I tried to exercise more; I forgot to make time for it. I started using various methods to track exercise, so I had solid data on when/what/how.

It triggered disordered eating behavior.

I tried to cut back on my food intake; I began to obsess about food. I started counting calories and forcing myself to earn the right to eat those calories.

That is disordered eating behavior.

I tried to "go back" to a comfortable place, where eating was just about food, and I got fatter. Which is why my jeans didn't want to button today.

Sometimes I cancel plans so that my friends can't see how much I weigh. Sometimes I break down and research the "best" fast weight loss methods. I've been taking green coffee supplements, hoping for magical results, without telling anyone - especially not my current ED therapist.

This is disordered behavior.

Here is my reality: I am a fat girl with an eating disorder.

I wish I could tell so many people:
I can't talk to you because at least once in every conversation you talk about your current diet/exercise/plan for weight and I feel overwhelmed.
Or
I can't interact with you online because your fitness/nutrition/food regime makes me feel like a failure as a person.
Or
I can't bear to repeat myself anymore because all I can safely give you is the most basic/obvious/tertiary explanations for some of my choices.

And
None of this is your fault.
And
My therapist would like me to believe that none of this is my fault (though it's my responsibility to deal with it).
And
I don't want to be a fit fat woman. I want to be a healthy person.

I struggle with the reality of this all. Sometimes I wonder why anyone bothers adding a label. Other times I wish I could wear my label as a sign, a shorthand to explain things to the world. Once in awhile, I wonder why I live with "the crazies."*  Most of the time, I wonder why I'm so broken.

Today, my (ED specialist) therapist led me to admit I need to begin accepting some things. By refusing to accept them I am suffering needlessly. I have elevated pain to misery. And through acceptance, I can change that situation. Some of the power is mine, and it's time I took it back.

I live with an eating disorder.

I want to pretty it up, ignore it, move on, say I'm cured... but the truth is that I live with it every day.

Now we know.





*the crazies: my new term to encompass my depression, anxiety, PTSD, eating disorder, crippling perfectionism/self-doubt, and being an intensely empathetic person (which, according to my mental health professional, is not a 'crazy' diagnosis but rather her professional opinion and worth noting because it leaves me incredibly vulnerable to the world/people around me).

Honesty, transparency, and health.

I go back and forth fairly often, trying to decide what I want to say and what format I want to say it in. My life isn't secret, by any stretch, but I try to practice boundaries. Some things shouldn't be thrown out into the public world. Other things need to be thrown out. Most things are really in between.

Social media is a beast I wrestle with regularly. Using it, turning it off, hating it but participating, and so many things in between. And yet, blog posting seems much more indirect. Virtually no one "follows" a blog post anymore. Or, at least not mine. I'm not complaining. I'm trying to explain. Or understand myself, I suppose.

Tonight, I had a wonderful painful long talk with a friend. Mostly, I talked and she listened. Today has been a hard day, and she's a wonderful listener. She regularly interrupted me to encourage me to be nice to myself. [She has this strong stance that I need to be much kinder to my own self than I am in everyday practice.] I cried. I jumped from one tale to another. I tried to explain complicated things in simple ways. There were long moments of silence while I tried to keep it together rather than be taken over by sobs. There were moments I garbled, trying to talk through the heaviness in my chest and the thickness in my throat, and I don't know how she could understand - except that it wasn't the words in that moment, but rather the love. She was able to reach to me from 650 miles away and (figuratively) put her hand on my shoulder until I could bear up under my own life again.

And during one of the times I listened, she told me that I should write it all down and then ask myself

[Was that sad?
Was that hard?
Was that hurtful?
Was that wonderful?
Was that unique?
Was that an important part of my experience?]

"Are these things 'just' anything?"

I may be misquoting her. I'm sure of it, in fact. But these are the words I've carried forward, and I believe I  know her well enough that if she reads this she'll just nod in satisfaction that I got the message.

My response: I don't write anymore. It's one of the things that goes away when I'm 'well' medicated.

Part of today's experience is that I'm no longer well medicated. So, here we are. Writing. I'm not sure what about exactly.

Sadness, maybe. Or just the emptiness that goes along with pouring out all the words, but feeling unheard. I'm not sure.

I'm going to work on this for awhile. Boundaries. Outlets. Sharing. Not sharing.

The thing is, I have a lot I want to say. I a lot I want to tell. But I'm not sure where to tell it, or to whom I wish to speak.