Tuesday, October 30, 2012

It was a strange tingling that made her think of Phantom Limb Syndrome, but this tingling rested much deeper. She felt like parts of her soul were missing, had left her body long ago. It happened not 3 months ago in Greece but long before that. It was in Greece she realized those parts had left her and were not coming back.


Sunday, October 28, 2012

Dysautonomia: What You Need to Know in 5 Minutes or Less

I saw this and had to share
As Dysautonomia patients, we are constantly clarifying things, telling people what it is (And what it isn't), telling people how to spell it and people telling us what we should do to get better (As if we haven't already thought of that!)
So, here's a quick Dysautonomia: What you need to know in 5 minutes or less

Dysautonomia : What you need to know in 5 minutes or less

Friday, October 26, 2012

One Voice

This year I had the honor of blogging for 40 days for life again. I was a part of this last fall - blogging for the Calgary 40 days for life blog, and in January I went to the side walk in front of the clinic and experienced for the first time the real-ness of this situation and what really happens on the other side of the sidewalk I hear people talking about.
It makes me wonder about how we can be silent about something so important, when lives are ended each and every day.
Here's my thoughts on that one time in January when I went to the sidewalk. God changed me there.
I am so blessed to have had this opportunity to blog for 40 days for life once again, and to use my voice.
One voice, I believe, can make a difference


Thursday, October 25, 2012

The Invisible Moments

My life is measured by the invisible moments.
I live life with an invisible illness. I live my life in the middle of the invisible loss that comes with them.
I am continually amazed at the silence surrounding invisible illnesses. There's constant awareness in the news for things like cancer (Anybody else see all that pink this month?) and yet, while 96% of people with an illness have an invisible one, the awareness for all types of invisible illnesses is small.
Why did I not know about this before the sacred was taken from my life? I want to ask. Why is there such silence surrounding invisible illnesses.
I have a theory. It has something to do with being invisible. It has something to do with a quote I read once:

People anoint bodies in hospital beds with words like “fighter” and “miracle” and “goddess” because of the cultural urge to wrap up formative life events with neat little bows. But in doing so, they silently demote everyone else who dies. Or who screams for an epidural, or who falls apart at the incubator of a one-pound child.

We do not exist or fail to exist — or birth and "fail" to birth — because some are stamped with a rubber imprint of GOOD or STRONG or WORTHY and some are not.
I think the same thing goes for invisible illnesses. We wrap up people in hospital beds with words like fighter and miracle. People with cancer (Just using this as an example) when they go into remission, or even when they don't, they are anointed with the words "Strong" and "Fighter" even "Survivor." They beat the odds, they survived this horrible, awful thing. I'm not saying it's not horrible and awful, because it is. I've lost loved ones to cancer, I know what it can do.
But what about the ones for whom there is no cure? Are they somehow less worthy, less of a fighter, possess less strength?
We're so vocal about diseases like cancer and the people who survive them, and the people who don't. But, I think, in doing this, we do silently demote the ones who won't have a cure, who fall apart at the huge struggle before them in living with an invisible illness.
We do not fail to survive, or fail to fight, just because some are stamped with the sign of "Survivor" and "in remission," and some are not.

My life is measured by the invisible moments. I live my life by these invisible moments. When the diagnosis of an invisible illness comes, it seems there is an urge by society to wrap up this loss and stick it up in the closet, on the top shelf, where it, too, becomes invisible.
I live my life in the invisible moments. I want to be a voice and help make those invisible moments a little more visible.

You are no less of a fighter, or a survivor, with no cure, with no remission, with no awareness. Your fight is not invisble, and neither is your loss.

Sunday, October 21, 2012

Soon this space will be too small

I stumbled upon this video by accident tonight.
I'm not sure what it was about this story that made me take notice, but it did.
Soon this space will be too small, soon this life will be too small. Soon the world will be too small to contain, and we will be obliged to start over again.


Soon this space will be too small ~ Lyrics

Sunday, October 14, 2012

Time In Between

In Sunday School this morning, we were talking about hearing God's voice. I'll be honest, at the beginning I almost laughed. I mean, really? I'm supposed to sit around for an hour and listen to people talk about when they heard God's voice and how He made everything ok for them and showed them the right path? Obviously I was getting the wrong idea.
Instead, I realized some pretty important things in that Sunday school class, which I'll try to (briefly) summarize here.
The main thing I was reminded of is "Trust what you know and not what you feel." It's been something I've gone back to a lot in these past 3 years, that even if I don't feel God, He's there. Easier said then done, right?
I was reminded of the time back in July, before I got a diagnosis but had a sense of what was coming. I remember feeling such a peace. Looking back now, I realized that that peace isn't a reflection on the lack of faith I have now (Lack of faith compared to then) but God's presence, Him taking me by the hand and saying, "Ok, Alisha, this is going to be tough, and it's going to hurt like crazy. But this is the right thing, this is where I want you to be. I've got you, I'm not letting go of you." Also, today something was said about in the Bible, God promising never to leave us. I've grown up in a christian home, I've gone to church all my life, I've known that promise, and yet why did it seem so new to me when I heard it today?
One passage I've come back to a lot over the past little while is the one where the Israelites wander around in the desert. I think we, or at least I, tend to focus on the cool stuff Moses did to rescue them from Pharaoh, and when Joshua and everybody walked around the city and the walls fell down. But it's the time in between I didn't really look at before... or at least I didn't until I was stuck in a wilderness of my own.
When the Israelites left Egypt and escaped Pharaoh, I'm pretty sure they thought they were free. God was going to bring them to the promise land sometime in the next little bit, and life was going to be good. Instead they wandered around in the wilderness, for 40 years. They suffered, a lot. One thing that stood out to me is that the Israelites were God's chosen people. And yet they ended up suffering big time. And then, when God finally decides to step in and take them to the promise land, they find out that their enemies live there. I can only imagine what they must be thinking then. I can actually imagine it's pretty close to what I've been thinking this last month.
"Ok, God, I did what you asked. I've wandered around in the desert for years, I've suffered greatly, I've done my time, you can come rescue me now."
What is it that makes us think that, after we've suffered greatly, everything should just be smooth sailing from here on out, that God should just hand us everything on a silver platter.
I was undiagnosed for around 3 years, my own form of walking in the wilderness. Maybe I expected too much when I thought that once the diagnosis came, life would be smooth sailing.
I think I'm a lot like the Israelites in that way, that I've wandered around in the wilderness for long enough, that once I get delivered things shoudl be great.
But things aren't great. The Israelites encountered enemies in their land, and it turns out getting diagnosed isn't just a free ride, it hurts, A LOT.
I keep saying, "Ok, God, where are you? Why haven't you rescued me yet? Why am I still suffering so much?"
And then I hear Him whisper, "I'm right here, waiting until you trust what you know and not what you feel. I've never left you, not when you wandered in the wilderness and not now. I never promised life would be easy, but I promised you would never be alone. Just wait, the best is yet to come."

Friday, October 12, 2012


Don't know where this came from... just a little something I've been thinking about the past few days...

I am constructed of crutches.
I drink coffee; watch Grey’s Anatomy more then I should. I write on this blog, on Microsoft word documents on my laptop, in my paisley covered journal, in my notepad, on the back of physics worksheets.
These crutches hold me up. These are second rate crutches, but none the less I clutch at them, grasping the empty space.
My body turns against my mind daily.
My hands, they long to cradle the blind hope, the peace, the relief they had once cradled.
But now they cradle nothing, my gentleness has left.
My hands, they lost the ability to do simple things, to grasp, to release, to touch.
Even in sleep they remain twisted, curled, waiting.
You never know…
The hands were raised to the air, in hope or despair was not quite certain
These crutches are like a scalpel, like the numbing effects of alcohol, like a magnifying glass
 I am constructed of crutches.

I don't know anyone who isn't haunted by something or someone. And whether we try to slice the pain away with a scalpel or shove it in the back of a closet- our efforts usually fail. So the only way we can clear out the cobwebs is to turn a new page or put an old story to rest- finally, finally to rest

Wednesday, October 10, 2012

Tuesday, October 9, 2012

The Unicorn Project

I wrote today, in a novel that I'm writing, the things I wish they would have told me when I left the doctor's office nearly a month ago.
What they didn't tell me is that life would never be the same again. That it would be like having no skin, to watch out for lemons and salty foods and sharp edges
In the first few days, few weeks, now, I realized very quickly there was nothing out there. There was resources on grieving when you've lost your parent, your sibling, your child, your dog, but there was nothing out there specifically for what to do when your world has been turned upside down. There was nothing about, "You will now feel this and this, you are not crazy. You will grieve, and it will hurt, you are still not crazy. You will throw things and cry and scream, and you are still not crazy." You get the idea....
They never told me I would become a wild thing, my nest gone, my sanctuary taken away. They never told me I would be the marker of when seasons passed, when it was another week that had gone by, another day, because I would be the only one who cared so much. They never told me grief would be so isolating and lonely.
Ever since day 1, I knew I wanted to write everything out, what I was feeling, what life was like... I never knew why, I just knew I wanted to capture it all on my blog, in novels, everywhere. Just in this past month, I have realized there is a great amount of silence surrounding grief in regards to a medical diagnosis. There is nothing out there, no sites with people who say, "I've been there too, this isn't all in your head, you can get through this."
I made a decision that I wanted to help break that silence.
If I could go back and tell that undiagnosed girl one thing, it would be to hold on to this moment. Being undiagnosed is hard and it hurts like crazy, but there is that blind hope, the possibility, the potential. If only i had known then...
I think one of the hardest things - besides the actual loss - is that voice inside my head, the one that reminds me I wanted this, I shouldn't be grieving or upset. I think I've said these words over and over in this past month, in emails, written them in my journal, whispered them aloud. "I'm just doing my best." I am just doing my best, and that has to be enough.
My goal is that I'll be able to raise awareness for the pain and grief that comes with being diagnosed. I know I can't be the only one.
As I was writing one night, the words began pouring out of me, and I began to write about this dream, this idea of a project so that newly diagnosed patients could know they're not alone. As I began writing, I began calling this idea my unicorn project.
In Private Practice, Amelia called her baby her unicorn baby, because when she was little she believed unicorns were great and magical and would help lots of people. (Her baby was going to die and she decided to donate his organs, FYI) But I knew that's what I wanted this project to be, something that would be great and help a lot of people, something good that could come out of all this grief I'm experiencing.
Newly diagnosed patients, patients who have been diagnosed forever, anyone out there with a chronic illness, you are not alone.

I wish they sent you home from the doctor's office with a candle. "For some light in your darkness," They would say, "You're not alone."

Monday, October 8, 2012

Thanksgiving of 2012

I'm thankful for Maroon 5 songs on the radio
I am thankful for love, that I am loved, that I have people who love me, that I have a God who loves me
I'm thankful for gluten free thanksgiving dinners
I'm thankful for the ability to write, and make art, and make this world make a little more sense.
I'm thankful for emails on a Monday morning and hugs on a Thursday night and late night conversations on Wednesdays and Saturdays.

Last night, when I couldn't sleep, I was creating my thankful list. Thanksgiving apparently inspires in people the want of having something to be thankful for, and I am no exception, so I ticked things mentally off my list. Adam Levine on the radio, certain people who don't freak out when I pull out the crazy or don't respond to emails or cry on their couch, food and family and art.
And then I went deeper. What am I thankful for, really? And then the silent, still voice whispered back, "You're alive."
I'm alive, with every painful breath I take and every aching beat of my heart, I am alive. Though the pain is overwhelming at times, I am alive. I have lived to see another Thanksgiving.
Sometimes I wonder if it's worth it. I mean, if I'm brutally honest, sometimes i wonder if it's worth it. Often I think heaven would be better. But i don't want to die, I don't, I just don't know how to live yet. I don't know how to live without the blind hope and fighting every single minute of every single day to get answers. 
So, this Thanksgiving, I am grateful to be alive. in Church yesterday, I told God that if He wasn't going to make me better, then He had to make something good come out of this. And I have to trust that He will, I have to. I can't just believe all of this is for nothing, that I am sick and in pain and suffering for no reason, that I have lost so much for nothing. There has to be something more, something has to come out of this, and even if I don't see that right now I have to believe it's coming.
I'm thankful for life today, that I am still here, still alive, still breathing. I am thankful that I am loved, and that the God I love - and who loves me - has a plan, bigger then I can ever imagine.

What are you thankful for today?

Friday, October 5, 2012

Disease on My Sleeve

So there's something I've been wanting to share with you for a while now. It was the Big Thing I was mentioning in posts earlier this year, and now I can finally tell you about it.
I am beyond excited to get to share with you this amazing project that I am a part of.
It's called Disease on my Sleeve. It's a group of 10 individuals, including myself, who want to work together to raise awareness for invisible illnesses. So every once you're going to be hearing from me, and you're also going to hear from friends of mine about their journies.
Of course, this community wouldn't work without people like you reading the blog.
So if you have some extra time, go over and check out the DS site.
I am so excited for something like this to finally have happened - a place where teens with illnesses (And not just invisible or chronic ones!) to come and get support and hear they're not alone. Before I was diagnosed, and even now, I really needed something like this, and now I am so grateful I get to be a part of this for other people out there who are searching and struggling and thinking they're alone. Anyway, go check it out, I promise you it's pretty great