"I cannot find my voice."

I have this habit of locking down inside myself. Oh, there is so much happening. Images dancing in my head, sights, smells, sounds, twisting together, tangling, intertwined. It's safer to stay silent. It's safer not to speak. I'm afraid to speak out. Speaking out senior year and being shushed solidified that fear. I was only eighteen. I was a senior in high school. And I was heartbroken. I wouldn't wish the choices I made that cold October morning to my worst enemy. But yet, the choices let me to where I am today.

I've grown so much since my senior year. I should hope so, considering I'll have graduated six years ago come June. Six years is a long time, and even as I got my diploma that warm June evening, I had no idea the changes that would come over the next few years. I had no idea I would legally be declared disabled before 21. I had no idea I would sever ties with my mother as well. I had no idea that I would be called into the ministry. I had no idea I wouldn't finish college in Canada and that in 2012 I'd still be working on my undergraduate degree. I had no idea I'd live in frick-fracking MINNESOTA where it's frick-fracking cold. I had no idea I'd still be battling PTSD, cutting, eating disorder... I suppose I thought it'd magically stop, but NEWSFLASH: IT WON'T.

I had no idea that both my grandparents would die before I completed my undergraduate degree. I had no idea that I would make beautiful friendships, meet my future best friends, and go through heart-wrenching grief. I had no idea of any of that.

I had no idea at age 24 people would STILL think I'm 14. Heh. Funnily enough, side story. I was on my way to a doctor's appointment and I mentioned how I still had a specialist at the Children's Hospital. "Oh, you could easily pass for 14." Me: "Mmhmm." "You'll like  more as you get closer to your 30's!" *silence* "I'm 24." "WHAT?!" "Yeah, I'll be 25 in June." "...." "You're not 18?" 18 is the oldest I've been mistaken for in awhile, so I suppose that should make my happy. Anyway. Done with the side story.

Tori Amos said in her song "sometimes I hear my voice and it's been here, silent all these years." Problem is, I don't hear my voice. Sure, I blog and I write and I talk. But I bottle so much up. I keep so much inside me. And I don't know how to pull it out. There are things about my past that repulse me, that I haven't told anyone. And it scares me that it's there. And I don't want to talk about it because I'm afraid people, even those who want to help me so badly, won't like me anymore. Will think horrible things. Won't understand. And so, I carry the burden.

When will I realize how stupid that is?
When will I realize how dumb that is?
When will I find the way to pull out my voice and be strong?


He's the only friend who ever peed in a cup for me

Nick was my friend. I was an idiot for letting petty disagreements get in the way of our friendship, and completely lost contact with him - even being childish and deleting him from my Facebook friends. Which, in retrospect, was stupid and pathetic, considering that he was one of the people who was there for me in one of my darkest phases, when I just needed a friend the most. He'd stay up with me when I was sick. He once skipped Streetlight to watch A Little Princess with me after taking all my sharp objects from me, so that I not only couldn't cut myself but so that I would have a friend. He helped me lobby for the back surgery I so badly needed and he was there (along with other friends, but this post is about Nick :P) when I was having medical drama. He helped me process some things, and showed me God in a way I hadn't seen him until that point. We enjoyed watching Scrubs on random nights for no reason other than, well, we felt like it! Thanks, buddy, for introducing me to the awesomeness that is Scrubs.

I'm bitter and angry about myself for the way things played out, and  I suppose I need to let that go. I'm sorry, Nick, for being a stubborn idiot. I don't think that you were right in that series of three slightly heated convos, but Lord knows I wasn't fully right either. I'm sorry, I'm sorry, I'm sorry for being such a buttmuffin.

But all and all - Nick was the only friend who ever peed in a cup for me. Out of context, that's a really awkward quote. It was June of 2010, and I was living in the hotel-turned-dorm at Northwestern. It was previous to my gluten intolerance being diagnosed, and I was incredibly sick. Nick gave me a ride to the University of Minnesota Medical Center ER and stayed with me (well, on my computer. I later hijacked his Facebook status *grin*. Buddy, you never did learn to log out on my computer :P) during it. Problem: they demanded a urine sample and wouldn't leave until I gave them one. Problem 2: I don't pee on demand. Solution: Nick takes the cup out my hand, goes into the bathroom, and PEES IN THE FRICK-FRAKING CUP FOR ME. Me: "O.O NICK YOU CAN'T DO THAT!" Nick: "I just did." He then goes and hands the cup to the nurse. "Here, she went." Me: "NICOLAS!" After the nurse left, he turns to me and asked me if they could tell he was a boy from his urine and if they'd find me. Me: "Um, not sure?" We were very relieved, let me tell you, when the nurse came back and announced I wasn't with child. Naw, really?

The funny part? The next day I got a phone call from the hospital, telling me that my urine sample showed a kidney infection and to see my primary doctor. Me: "Um...". That was an awkward text to Nick, let me tell you.

I don't think that Nick peeing in the cup was the right thing, and I do feel kind of bad about it. But, how many people can say someone would pee in a cup for them?

I'm sorry I was an idiot, Nick. I'm sorry that I let our friendship fall due to my stubbornness and slightly idiotic streak. I'm sorry that I wasn't there for you the way you were there for me. You were one of the few people who truly understand my medical stuff as while not all our disorders were the same, we had many similar ones. I wish I could have shared with you stories of my surgery recovery. I wish you could have seen my morphine-ridden poetry that I wrote post op. I wish we could have traded spinal fusion/back rod stories. I'm sure we will one day in Heaven. I'm sure it'll happen one day - on that glorious day when we ALL are without our bodily pain and we can celebrate in that freedom together at last.

I love you.

Every lament is a love song,
yesterday, yesterday,
I still can't believe you're gone
Every lament is a love song,
yesterday, yesterday,
So long, my friend, so long. 


And she fools all of her friends into thinking she's so strong but she still sleeps with the light on

My bed is soaked with sadness
My sadness has no end has no end
A downward of  spiral of dispair
That I keep falling in 
I need you how, how I need you 
Your silence is like death to me,
so won't you hear my desperate plea?
-I Need You, The Swift

It's hard some days to get myself out of bed. My alarm goes off, a few swear words slip past my lips, a stuffed animal may fly across the room. I'm not a morning person by nature, never have been. But when you're trapped in depression, when your greatest enemy is that reflection in the mirror, sometimes hauling yourself out of bed is one of the most difficult things of the day.

I suppose I make it sound like I'm drowning in depression. Some days I am. Some days I wonder why I get out of bed when I've barely slept the night before and daytime is the only time I'm able to actually sleep. When I'm running on two to three hours a sleep a night, and a couple hour nap during the day. Why I bother even trying to hope, trying to dream, when it seems like my hopes and dreams and wishes will just be crushed. It's hard.

Living with depression is like fighting a monster every morning. My days and nights are reversed. I just want solace - just some relief from all the pain I'm trapped in. It feels like just doing simple things - hanging out with friends, eating, hauling my butt out of bed, doing the laundry, drain all the effort and energy out of me and I'm left alone with my thoughts.

All I want to do is be free from this demon I battle. I want to be truly happy again, and not a person that I want to hide from. But I don't know how. I don't know how to open up about the past and allow people - friends, therapists, pastors, et al, help me. I don't know how to let people understand and even begin to give me a chance to have hope again.

For as much as I want to hope, dream, laugh, love, and carry on with my life, it scares the everliving shit out of me. All I've known for over a decade is depression. All I've known is bleakness. All I've known is living in fear and terror. And as exhilarating and thrilling the other side might be - it's completely unknown. It's something I've never felt before. What if it's too much? What if I don't like it? What if I taste the other side, and I don't like it at all? What if it hurts? What if I get a sampling of it, and I wind up falling back into depression? Would the relapse be that much worse because I've tasted the other side? Or would it be better once I pull out of the funk again, because I know what the other side is like? 

I get sick of trying various antidepressants. I get sick of feeling like this - I don't WANT to be like this! But how do I attempt something I've never tried, how do I try something I just don't know? How do I even attempt to spread my wings and fly, when every time I've tried to fly I've fallen?

Depression sucks. I'll leave you with Adventures in Depression because that sums it up better than I ever could.


Nine months down

Medication and hydration! 
Nine months ago I have my back fused. It's kind of hard to believe it's only been nine months, and in other ways it feels like the time has flown by. Nine months ago I had rods put in my back. Nine months ago I had major issues with rehab and wound up in the ER.

It's been nine months, and how have things changed? Do I regret the surgery? Part of my recovery problems have been my fault. I still carry around a heavy backpack. I had a bed collapse on me because I was digging around under it. I sometimes forgot to call to schedule follow ups.

I guess I'm partially still bitter because of my NF1, I still have issues with my back - hairline fractures, scalloped vertebrae  and dural ectasia. I will never  have a full recovery from pain, and it's a hallowing thought.

But I don't regret the fusion. I'm taller now, and the pain is somewhat better, although there are still days where I'm curled up in my bed with a N64 controller and a cup of tea because anything else hurts too much. I totally rocked the hospital gown too, as evident in this gorgeous picture taken 5 days after surgery (and before a shower and real clothes, ick!)
I look like death on a stick.

I had my share of adventures in the hospital, such as the IV falling out and the weird feeling of a catheter. Learning how to walk again was difficult and painful, although I caught on quickly. It was awhile before I could use my crutches the way I was used to again, and I know had I not had limited mobility to begin with, walking again would have been a snap.

My scar is healing nicely, and so that's good. I have almost all my mobility back. I do sometimes (I'm hyperflexible) sit or lie in weird positions. My back is like "OH HAI ANGELIQUE YOU HAVE RODS IN ME REMEMBER LOL" and I'm like "oops" when I realize I can't always move exactly how I used to. Thankfully, bodies are adaptive and I just learn new ways to move around! It's still terrifying, though, because my surgery was so major and I still live in fear of the doctors discovering something that went wrong after surgery and having to go back in and fix something. I wonder if if all the pain I'm still in is normal. I wonder if my bones won't fuse properly. I wonder if the rest of my spine will shift (not unheard of with NF, but not common either) and I'll have to have more of my spine fused. And sometimes I still feel like just a scared child who wants someone to hold her and tell her that it'll be alright, which I don't think is a bad thing, per se, but at the time time it's heartbreaking because does anyone really know if it will be alright?

Perhaps it's hard because the recovery was brutal due to rehab messing things up and my NF. Perhaps it's difficult because I still live in pain due to both the NF and the fibromaliga. But is there a way things could have turned out different? Had I not had the surgery, my spine would have continued to curve and that would be, well, bad. I would have had to have more fused and quite frankly, that would suck. My scar is impressive enough as is. But yet, nine months out, I'm still living with pain and I'm still struggling. And I can't help but wonder - three months later, will it still be like this?

But at the same time, I find myself grateful that I've been given the chance to heal and the chance to move on with my life. I'm stronger than I was before surgery, both emotionally and physically. Even if my back doesn't fully heal properly it doesn't mean that the surgery was a failure, but rather that there's a different plan in store for me. The ride may be difficult and bumpy, but it doesn't mean that I'm not in it for the long haul. But no matter what, nine months with rods in my back have passed and I'm recovering, in some way, shape, or form.


I don't know how you do it

"I don't know how you do it."

I've been told it for years, really. "I don't know how you do it." The truth of the matter is? I don't know how I do it, either.

I wish I did. Thing is, when you have to do it, you do it. There's nothing impressive about what I've done. I've been paying my own bill since I was 21, managing my old medical stuff, all that stuff. It's what I have to do.

People tell me they couldn't do what I do. Truth is? I can't do what I do. You just have to throw yourself in and DO it.


Me? Stubborn? Naw, 'ya don't say.

Whoever coined the phrase "Stubborn as a mule" clearly had me in mind.
I remember in 2007 being asked what my best trait is.

"You mean assertive, right? Stubborn is a bad thing."
"Nope, I'm stubborn."

It's true - I'm fiercely stubborn. I don't like change, I don't like things being different in any way, shape, or form. I like things just the way they are.

And so I cling onto - be it bad or be it good. And in a very sad way, my stubbornness hinders my recovery of depression, ptsd, and ED-NOS. How does it hinder it? Because in many ways, I'm just too stubborn to change. Things the way they are aren't great, but it's all I know. And I like what I know, even if it's not ideal. I like the predictability of the way I sometimes run things, and I feel that if I keep things that way, it's for the best.

I don't think it's a bad thing to be stubborn. There are times when it's a really good skill, such as when people are being a pain in the butt and you just need to get something done. It channels into determination sometimes. Thing is - I'm stubborn about things that I shouldn't be stubborn about.

I think my stubbornness helped me survive my childhood, but now I need to find a different coping skill and a different way to control things. I'm a control freak, I'll fully admit it, and it goes along with being stubborn. I'm well known for pushing myself way too far, because I want to prove I CAN do it, even when I'm sick as a dog or crawling in pain and really should be curled up in bed with a piping hot cup of tea and reruns of Fraiser. But yet - I want to prove to people that I'm capable and that I WILL do things my way, dammit!

It's not a healthy mindset. I need to learn that it's OK to listen to other people's advice and sometimes being stubborn is a bad thing. Sometimes I do have to let someone else take the reins, and trust that things will turn out okay if I don't do things exactly how I plan.