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this silence gets us nowhere, gets us nowhere way too fast

 

I remember several years ago being asked what a life without trauma looked like. What a life without depression looked like. What it would look like to be healed. That’s when I first had the terrifying realization – I have no idea what it looks like. I have no idea what life without trauma is like, as my trauma is developmental. I have no idea what life without depression looks like, because I don’t have a frame of reference for that.

I often see people say they want to be a child again, because they didn’t have any responsibilities and being a child was carefree. I’ve always been chronically ill. I’ve always been depressed. Being a child again would put me back in a hellhole and isn’t something I want to repeat. 

I don’t really want to talk about what my trauma was, but the fact it exists should be enough. It doesn’t change the fact that there isn’t a before trauma and after trauma for me – there’s just trauma and after trauma. There’s just learning how to build a life I never had. Some people rebuild – some people build from the ground up. I find it difficult to physically speak about the way these things affect me. 

I often shut down. Shutting down, turning off my emotions, retreating into myself was a way I coped growing up. Either that, or completely melting down. At one point, this is what kept me safe. At this point, my survival strategy is destroying me.

…I sit here locked inside my head, remembering everything you said. The silence gets us nowhere, gets us nowhere way too fast. The silence is what kills me, I need someone here to help me. But you don’t know how to listen, and let me make my decisions…

It’s funny – the same things that keep me going are the same things that destroy me. I feel like so much of me is shaped by my past, so much of me is shaped by what I’ve been… that there’s no way to know who I am when freed of those aspects. I desperately want to know so I’m not merely fueled by anxiety and caffeine. But when your trauma is in your early years, when your depression is lifelong…it’s literally impossible to know what a life is like outside of that.

Sometimes in Facebook groups, I see people ask if they miss the person they were before trauma. If they miss the person they were before they developed psychiatric disabilities. And that isn’t a frame of reference for me. Which I think is part of the reason recovery is so difficult for me – it’s building something entirely new and unknown. And while it’s a lovely prospect and something I want… at the same time, it scares the living crap out of me.

I don’t know what it’s like not to be depressed. I don’t know how not to be anxious. It’s always just been how things are. And while one one hand, that’s not a bad thing… it just means that my life is different from some people’s. It doesn’t mean I cannot one day find a life without depression, anxiety, and trauma… it just means forming the building blocks to THRIVE instead of merely survive is somewhat different than other people.

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Autistics Speaking Day 2018: Words Can Be Hard

It feels like there’s nothing to say. It feels like so many other people have used the words and used them so much better than I can. There are things that certainly need to be said, but I don’t even know if I’m the right person to say them. I don’t know if I’m qualified enough. I don’t know if I’m smart enough. I don’t know if I’m eloquent enough. Needless to say, I struggle with words often (which is kind of funny for a blogger, I guess).

But then again, maybe for autistics speaking day I should write about how I sometimes don’t have words. Because that’s something I’m currently facing in my life. I feel like sometimes  I gloss over the most difficult parts of being autistic – I talk about how I’m okay with it but I don’t feel like I talk with about what I struggle with as candidly. And so, here I am. Autistics speaking day. Talking about how speaking (or writing) is sometimes hard.

Something that has been noted in my life is that often when faced with having to deal with my emotions – I shut off. I can talk your ear off about Anime Fargo, video games, anime, or just about anything that isn’t related to my feelings or emotions. I will happily babble about what’s easy and advocacy. But when it comes to what’s real, when it comes to what’s raw, when it comes to my struggles… that’s a lot harder. It’s so easy to shut off to try to not deal with those things anymore.

But words. Sometimes there are words in my head, and they don’t match the words that come out of my mouth. I switch my words, I say the wrong thing – it’s almost like autocorrect in real life. The words just aren’t always right, and it’s difficult to accept that and be okay with it. But then when it comes to what’s most important in my life… allowing myself to say those things can be hard. I can often write about them, but verbally saying them? There’s a bit of disconnect there.

And here I am. Autistics speaking day 2018. As usual, I shut down some today when faced with emotions. I’m trying to learn how to navigate these and I’m trying to learn how to control it. It’s difficult and it’s painful – but it’s a part of life. Things don’t always have to be perfect. The words don’t always have to be right. I’t’s okay to struggle, and it’s even okay to not have words at times. Learning to accept that has been difficult for me, but I think in the end, it’s worth it.

 

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when friendships dissolve

There is a very real, very painful form of grief that I don’t think we talk about nearly often enough. We talk about the grief and loss we feel when someone close to us dies. I’ve written extensively about that grief myself. But a kind of grief that often gets forgotten is the grief when a once close friendship dissolves.

Friendships can end in many ways. Sometimes they gradually drift apart. Sometimes the ending is abrupt and painful. Sometimes you can look back and see all those warning signs you missed. Sometimes you can look back and realize you knew it was coming all along but you just didn’t want to accept it.

Losing friendships is hard. It isn’t always one big dramatic falling out – although sometimes it is. Sometimes it is a bunch of little ones leading up to the catalyst that tears the friendship apart. But coming to terms with the loss of someone who was once very close to you? It’s very real. It’s still very much a grieving process.

I haven’t blocked everyone on Facebook that was once a close friend but now isn’t. So sometimes I still see the memories on Facebook. And just the same as those who have passed away, they still take my breath away. I still find myself wistfully thinking of the memories and the fun times we once had together. I find myself remembering the late night talks, the inside jokes, what spurred that post… and it’s overwhelming.

There are certain things that will always remind me of friends who have died. There are also certain triggers for friendships that have fallen apart. The pain is still very real. The memories are still quite strong. And there’s still the occasional thing that takes my breath away – a certain song, certain ways people act, etc. I still “see” my former close friends in these things the way I see my friends who have passed away.

The grief is different, yet similar. I have to allow myself time to heal and move on. Sometimes it’s from stepping away from things that reminded me them for awhile – and that’s fine. Somethings I haven’t watched since certain friends died, some things I haven’t been nearly as invested in since certain friendships fell apart. The stages of grief apply in a broken friendship the same way they do when someone dies. Please note: any names used in this post have been changed for privacy and are actually multiple friends rolled into one persona.

Shock and Denial: How did this happen? Why isn’t this friendship happening anymore? It was a mistake, right? No. They’re still my friend. This isn’t real. What’s happening? What happened to our friendship? It can be fixed, right? So many questions, so many feelings, so many thoughts run through your head.

Pain and Guilt: For me, especially, I find myself blaming myself for every little thing. Why did I call my friend out on that one thing, and not just let it slide? Why didn’t I reach out more? Why wasn’t I a better person? It’s all my fault, right? Why wasn’t I a good enough friend? I find myself putting all the blame on myself when this happens, and refusing to acknowledge that it’s a two way street and we both played a role in the friendship dissolving.

Depression, Rejection, Loneliness: I find myself falling into a funk, for lack of a better turn. I’m scared to make new friends because I’m scared of another painful ending. I realize what I’ve lost and the magnitude of it. I still find myself thinking “Oh my god, Caitlin would love this!” when seeing certain things on the Internet or reaching for my phone to send Hailey a text. I find the overwhelming sadness and mourning for the relationship we had when times were good settling over me. I mourn what we had, not what our friendship became. I find myself thinking of the times Caitlin and I laughed together, and that’s fine. I find myself obsessing over the fights Hailey and I had, and that’s fine, too. It isn’t as always simple as being talked out of it, and only time will heal these wounds.

The Upward Turn: Things start getting easier. The depression lifts. Certain things are no longer painful and I  am able to enjoy things we once enjoyed together by myself (sometimes with old friends, and sometimes with new friends).  It’s still hard, but I’m slowly finding my way toward recovery and becoming the person I am without that once important friendship.

Reconstruction: I’m building my life without them. I still love them, I still care for them. I wish them no ill will, even if I did at one point. I still miss them, but I’m able to start moving on with my life. I find myself free of grudges and I find myself starting to find happiness again.

Acceptance and Hope: Seeing their name around (if I haven’t blocked them) no longer makes me angry. I’m able to move on with my life, and hope they can move on with theirs. I find old and new friends to surround myself with and I accept the path that let us down this road. I’m able to think of them without overwhelming sadness – although I do still get sad at times. I’m able to realize that what’s done is done, and can’t be undone.

Note that the stages are fluid and don’t have to happen in any order, and you can loop back to them. 

 

Losing friends is hard. A friendship falling apart can be traumatic and you can grieve it. The mourning is painful and that is normal. Realizing that what you had was beautiful and what it became was not is fine. I really wish more people felt comfortable talking about how hard it is to lose a friend. I really wish there was more acknowledgment on the soul-crushing grief when your best friend isn’t your best friend anymore. Because it hurts and it’s painful. And it’s very real.

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Despite everything, it’s still you

If you know me at all, you know I love video games. One of my favorites is a little game called Undertale. Now, I am going to write this mostly spoiler-free because of the nature of the game. If you want me to info dump spoilers – I will gladly do that in private. But publicly spoiling the game will  have the masses after me because many believe it is best played knowing as little about it as possible. If you haven’t played it, I highly suggest it. It’s available on Steam for Windows, Mac, and Linux. There are also Playstation 4 and Playstation Vita ports of it, with a Nintendo Switch port coming out later this year.

In Undertale, you play as a child traveling through the Underground. A lot of things and stuff happen throughout the game. Toward the end of the game, you look in a mirror and the text displays “It’s you. Despite everything, it’s still you.

That line alone is my most powerful takeaway from the game. I love Undertale and it’s easily in my top ten favorite video games, if not the top five. The music, the general feel of the game, the way you can tweak your playthroughs… it’s a beautiful, fantastic game. But then there’s that line. And for the most part, the line is always there

It’s you.

Despite everything.

It’s still you.

There’s a lot of things that have happened in my life. My health is horrible. I have lived through many awful things. Life hasn’t been easy.

But despite everything, it’s still me.

Things will get bad. Things will be hard. Life is often a struggle. I’ve lost people I dearly loved, like Beth. I’ve lived through abuse. My health will continue to be a hot mess.

But it’s still me.

There’s a lot of things I can’t control. Life often spirals and turns and twists into a hectic mess – sometimes beautiful, sometimes ugly, but it’s life all the same. But despite all the things I can’t control, I’m me. I’m still me. The “me” I am changes and morphs due to my situation – sure. But I am still Nora. I am still me.

Despite everything.

I’ve often said I’m like a bouncy ball – I’m resilient as heck. I get thrown down, I bounce back up. Sometimes I may roll away and sometimes I may need help getting back up, but I still bounce back. And I’m still me when I eventually bounce back.

Despite everything.

The entire world often seems determined to push me down. I make choices – some good, some bad. Some I’m proud of, some I regret. But at the end of the day, when I’m preparing to wind down and look at the future – it’s still me.

And the same goes to you.

The world often sucks. Things are often outright hard. You’ll make decisions that you’ll regret, and you’ll make decisions that you’re proud of. Sometimes you’ll be standing there, firmly telling the world that it’s not your time to move anymore. But yet. At the end of the day.

Despite everything, it’s still you.

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and here’s my broken hallejuah

I am a broken Christian.

I love recklessly and live passionately. I have trauma from an experience that shattered my faith in the church when I was young. Social justice is important to me.

I am disabled. I’ve struggled to reconcile this and my faith. I straddle the border of traditional and contemporary – I often say that I’m theologically conservative but socially and ethically liberal.

I have entire episodes of Veggie Tales committed to memory. I make references to obscure Christian niches often.

I am a broken Christian.

I’m a flawed person – I’ve hurt people and I’ve been hurt. I studied to go into ministry – the running joke is I’m most likely to drop the F bomb behind the pulpit. I’ve often been asked to explain theology in ways non Christians can understand.

My faith is important to me. I once used my faith to fuel my hate, but I now use my faith to fuel my love. My thoughts and prayers are important, but they’ve got to be channeled into action and advocacy.

I don’t trust easy. I hide many of my emotions. I’ve got many parts of the charade down.

I am a broken Christian.

I’m just now learning to be safe in a church again. The church hurt me. I’ll never be the Christian I was before that trauma. But. I’m learning to trust people again. I’m learning and growing and changing.

I’m a broken Christian.

But we have a God who calls the broken. We have a God who calls the ones who have been hurt, to help others not to be hurt. We have a God loves the ones who the world does not.

And so I’ll sing my broken hallelujah.

 

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I’ll never delete her number

It’s been over two and a half years now. Two phones later. And her number is still in my phone. Oh, I know it isn’t her number anymore. I’ll never call it, never text it, never use it again. But I just don’t have it in me to delete her number.

It’s a small, tangible way of always carrying her with me. I sometimes wonder why I love so deeply if I am going to grieve so desperately. To go from texting someone thousands of time a month to not texting at all… it’s hard. It’s so incredibly hard. But this way, I always have her with me, everywhere I go.

I occasionally go through the text messages I have backed up to my computer, and I every now and then start going through the Facebook messages that I still need to finish reading. She’s still on my friends list, she’s still very much there in my life. Even though I can’t talk to her, I can’t see her… the option is still there. The words would just fall into a void.

Losing someone so important to me was so incredibly hard. It still is hard. But deleting the number would be a final goodbye I am just not prepared for. And so, I’ll never delete her number. It’ll always be a part of my life, a small piece of a beloved friendship carried with me.

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I have been changed for good

It well may be,
That we will never meet again,
In this lifetime.
So let me say before we part,
So much of me,
Is made of what I learned from you.
You’ll be with me,
Like a hand print on my heart.
And now whatever way our stories end,
I know you have rewritten mine,
By being my friend.

I sometimes hate myself for choosing to love. By loving deeply, I pay the price of grief. I often question if it was worth it. It hurts. It hurts so badly to pay such a significant price for allowing someone in my life.

I tread the waters of love with care, but when I start swimming in it it’s a fiery passion. I delicately choose who I choose to love so deeply, who I choose to immerse myself with because it hurts so much when I bestow my final, never ending gift – my grief.

I’ve lost so many people I cared so fervently for. It never gets easier when someone else is added to the list. But I carry a piece of them with me as I journey on throughout my life. They’re a part of me forever.

And I can say yes, without a shadow of a doubt, it was worth it. Choosing to love, choosing to grieve, choosing to allow people to impact my life so deeply… it was all worth it. It’s worth the years. It’s worth the long nights where I wish I could just have one more text exchange. It’s worth it…because I wouldn’t be who I am today without them.

So for every soul that left this earth… I am grateful I had the chance to love them. I’m grateful I had the chance to allow them to enter my life. And I’m grateful that their legacy lives on in me every time I talk about them. I’ll continue to live a life to do them justice, continue to live a life to make them proud.

All because they changed me for good.

Like a ship blown from it’s mooring,
By a wind off the sea.
Like a sea dropped by a sky bird,
In a distant wood.
Who can say if I’ve been changed for the better,
But because I knew you
I have been changed for good

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Go light your world

  So carry your candle, run to the darkness Seek out the lonely, the tired and worn And hold out your candle for all to see it Take your candle, and go light your world I went to a Christmas Eve service on, well, Christmas Eve. We closed with Silent Night by candlelight. One of,…
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If there’s any hope for love at all, some walls must fall

Some walls are made of stone,
Sometimes we build our own
Some walls will stand for years,
Some wash away with tears
Some walls, some walls

Anyone who knows me knows that I’m a ball of nerves and anxiety. Most people know I have a fairly traumatic past, albeit  bits and pieces of the details. And many have asked how the heck I survived  it. They’ve asked how I’ve gotten through. I’ve always just kind of shrugged – I kind of survived to prove the whole world wrong that I couldn’t (want me to do something? Tell me I can’t or tell me it’s impossible. I WILL prove you wrong.)

I survived by building walls. It wasn’t safe to cope with things as a child, it wasn’t safe to let anyone know how broken and upset I was. So I built walls. For years, those walls have kept me safe. It’s how I survived a painful childhood, it’s how I coasted through college. I wasn’t in a safe place to cope, I wasn’t in a safe place to deal with with everything being thrown at me.

Some walls are lined with gold
Where some hearts stay safe and cold
Some walls are made of doubt
Holding in and keeping out

And so, I built careful walls to keep myself safe and to, quite literally, survive. I didn’t know who was safe and who wasn’t. I’d been backstabbed so many times that the thought of letting anyone see past the walls was terrifying. I’d break down the walls, little by little, and then realize it wasn’t safe and go back into hiding behind the walls.

After so many years of hiding behind careful walls, it has a tendency to blow up spectacularly  in your face. You see, those walls have been up to keep my heart safe. To make sure that no one can hurt me. But here’s the thing.

How will you ever know what might be found
Until you let the walls come tumbling down
If there’s any hope for love at all,
Some walls, some walls must fall

It took years for me to build the walls, years of closing people out and pushing the world away. I don’t know how to let the walls fall. Everything has been cooped up, pushed in, so tightly protected for so long that while the walls need to come tumbling down, I am absolutely terrified of what will happen if I start breaking down the walls. It feels like a dangerous game of Jenga – that if just one brick is removed, things may stay stable but if too many bricks are removed, everything comes crashing down out of control and I won’t be able to stop.

But yet…if I want love to win, if I want to ENJOY my life, if I want to THRIVE, the walls have to come down and I need to deal with the reasons I built them in the first place. If I want to live without fears, pain, and anxiety consuming me…the walls need to come down. I just have so many fears of what will happen if I let the walls come down. But what is scarier? Living with the walls I know and the familiarity of depression and anxiety  or finally seeing what is beyond that? Which one is more worthwhile? I just don’t know how to bring the walls down, but I think I’m finally ready to learn.

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When chronic illness becomes acute

I am chronically ill. That is no secret. I cope with it as well as I can – I have my good days, I have my bad days. I have the days where I can do things, and I have the days where I lay in a pitiful puddle on the couch with blankets and my stuffed monkey (ideally, a cat or two has joined me).

As a result of chronic illness, I’m pretty tolerant of pain and even the occasional acute illness. But then, you have your chronic illness becoming acute. And that’s when it gets hard. That’s when things start falling apart. That’s when my coping becomes not coping as well as I once did.

As you may have noticed, I’ve not been updating as much as usual. November considered of three ER trips, one urgent care trip, multiple outpatient trips, and an inpatient hospital visit. Things are still bad. My health is still gone.

Things got better for a few days, and then came crashing down again. I try so hard to strike the balance – how do I ration my energy? How do I do the things I need to do? How do I do the things I want to do? How do I live my live and enjoy the ride, vs just hanging in there?

I try so hard to be a good disabled person. I try to stick to my upbeat, happy-go-lucky, spunky self. I try so hard to not be bitter, to not be cynical, to do all the things sick people are supposed to do – roll with the punches, act like I’ve got my act together, keep the delicate balance of keeping real while still keeping certain things quiet.

But it’s at the point where I can’t hide how sick I am. I can’t hide how exhausted I am, despite sleeping. I can’t hide the coughing. I can’t hide the fact that I’m in an incredible amount of pain. I can’t hide the fact that I’m terrified my NF is taking over my life and it isn’t just a minor hiccup. It’s scary. And it’s so *hard*.

I hate the blurred lines between acute and chronic. I hate the fact that my activism and advocacy – the two things I love doing almost more than anything, are taking a hit. My relationships with friends. The things that need to get done simply don’t. I try so hard, I struggle so much, but when chronic becomes acute… it gets hard.

Most of my acute health updates will be published on my CaringBridge, but as this is more general related, I put it here. Because I am sure others can relate to the struggle. The struggle when chronic becomes acute. When accepting being disabled becomes desperately searching for answers and hope and treatment. When trying my damndest just to stay comfortable becomes a struggle.

Be gentle. Handle with care. Because when we cross the delicate line from chronic into acute, that’s when we need your support and for you not to leave us.