It takes ten times as long to put yourself back together as it does to fall apart
I know what day it is...
Because at night I forget to sleep.
Every year, like clockwork, more than any other night of the year, on November twenty fourth I lie awake, tossing and turning.
Inside the cells of my body, somewhere, I imagine is the memory of it all. Folded up nice and neat like origami and pressed into the corner. And every year on this day, more than any other day, it is unraveled like strands of DNA that are pulled apart in order to separate.
It was five years ago today...
Even though the immediate danger is gone, the sting still lingers. Absentmindedly I reach for the scar on my neck, the one I relate with confusion.
Because five years later and I still don't understand.
I don't understand how things were fine, until they weren't.
I don't understand everything I went through in those days when I was fighting for my life.
And I don't understand why I'm still here.
...
My dreams are haunted now by the things I've seen, the things I've experienced. I remember very few days when I've awoken feeling like I actually slept, when I haven't been restless or awoken in the night paralyzed with the fear of something I can't remember, or something I can.
I guess that's true of every battle, that when you come out of it it's not without a price.
...
It's a one of a kind feeling to have someone you've never met stand on a stage in front of hundreds of people and say "This song is for a special girl," and then sing a song for you while all those hundreds of people cheer and scream your name.
It feels something like being a rock star.
Thanks to two very amazing bands, I got to know what that felt like.
It's an amazing feeling, one I'm sure I won't soon forget. One that wrapped around me like a blanket and whispered in my ear, "It's ok, now. You're ok. You're here, and this, all that you don't understand, it matters."
It's someone you've never met telling you "I'm in your corner. We're supporting you, every step of the way."
It's stitching the cuts in your soul with guitar strings and piano keys.
...
I don't think you can walk away from something like this unscathed. It changes you. Everything I've been through has changed me. The pain, the death, the unknown, the fear, the people you feel like you should have been able to save, the survivor's guilt, the smells and the sounds. It's changed me. all of it. It's made me stronger, yes, and more compassionate, but its also made it harder to sleep. It's made me freeze in hallways and duck into bathroom stalls to gain composure again because there was this one sound...
It changes the way you see the world, the way you see yourself and your life. It changes everything.
...
I'll tell them how I survive it. I'll tell them that on bad mornings, it feels impossible to take pleasure in anything because I'm afraid it could be taken away. That's when I make a list in my head of every act of goodness I've seen someone do. It's like a game. Repetitive. Even a little tedious. But there are much worse games to play.
Showing posts with label stabilized remission. Show all posts
Showing posts with label stabilized remission. Show all posts
Sunday, November 24, 2013
Sunday, November 17, 2013
The Closet (Living life well)
I sat this morning, cross legged on the floor, and listened to the story of a woman who has cancer.
Hearing her story, it felt like Vietnam and I was a vet. I knew that pain, I'd experienced the wondering when your life is going to end and if this disease is going to kill you and fighting to get better.
I'm in a different place now then I was a year ago. I'm back at school, I'm doing well, I'm stable, I have a life. And yet I'm still not better.
At school and in my now so called normal life very few people know about what I've been through. I don't talk about the medical side of things very much. Partly because I'm in a different place now than I was and partly because it's not relevant to where I am now and partly because for me it's a very personal thing. I'm doing well now but there's still that side of it that is still so raw and fresh.
I'm stable now and able to do so many things but there's not a day when I don't feel something and wonder if I'm getting sick again. There's not a day when I'm not scared that I'm going to lose everything I have right now. I'm walking the line between sick and better. I'm not sick anymore, not like I used to be, but I never will be better.
And this is my life now, finding a way to live and live fully with a chronic illness. Not letting the fear and the what if's rule my life.
Of course I'm still afraid. Of course it's still hard and overwhelming and exhausting and I break down because I don't want to live like this anymore.
I can feel the fatigue in my bones from the trying to be normal and balance my sick life and my normal life and trying to find what works best in terms of me feeling the best and how far I can push things without it getting awful.
I watched a TED talk recently by a woman who was talking about coming out of the closet. She said the closet was anything that was a hard conversation, something you kept hidden.
For me, that life I used to live, that's my closet. It's easier to not talk about it. Easier for me and probably easier for other people. It's easy to pretend that that's not who I am, that being sick isn't still this huge part of who I am. But it is. It has forever changed who I am.
So I think for me part of this new stage of life includes accepting that part of me while making room for the new part of me. I'm still that girl I was a year ago but I'm also someone new. My body is healing, my soul is healing, my heart is healing.
I had this thought that until I got the report that my conditions were cured, there would always be a part of me that was broken. I was living my life in fear of 'what if I get sick again' and I feel like I'm living this double life and it's exhausting. Until I was cured entirely, I believed that part of me was broken. Maybe I still feel like that some days.
But part of this journey is realizing that while I will never be cured, I am well. While I may never be healed, I am healing. Compared to where I was a year ago, I have made amazing progress.
That doesn't mean I'm not afraid. That doesn't mean it's not hard and I'm not exhausted. I still live my life by the clock. I still have to be very in tune with my body all the time. I'm still sick.
But I'm not broken.
I am struggling, but I am whole. I am cracking but it is only because I am growing.
I heard a quote this morning about things in life serving a purpose and then being done. And I feel like that part of my life where I was so sick, it served a purpose. And now I am moving on to this new chapter of my life. I am continually growing and changing. And just because I am shedding layers it doesn't mean I am no longer whole, it just means I am growing new skin, becoming a butterfly instead of a caterpillar.
One of the hardest things for me now has been balancing my 'two lives' and living fully with a chronic illness and not letting fear keep me in one spot. Sometimes I think it would be easier if I was back in that place where I was so sick because I knew what was coming. But that's now where I am right now.
I am here. I am healing. I am growing. I am changing. And while I'm not cured and still am sick and still struggling with that, I'm not broken. I'm not alone. And I'm trying to not fight the current and accept where I am now, surrender to the situation of where I am and not worry, not obsess over what could happen.
Sometimes I think I prefer to stay in my closet and not talk about these hard things because its easier, because it still hurts me to talk about where I was and where I'm headed when so many things are uncertain and while I'm not cured and still struggling every day. But once in a while I think it's necessary to fling open to the door to my closet and talk about where I'm at and where I'm struggling and how my healing journey is going. Because life is not isolation.
So this is my closet, the things I don't talk about. This is learning how to live again with a chronic illness, after you were convinced you were going to die. This is learning to embrace life and trying to live walking that line between sick and normal, between not cured but still well.
I think we all have closets, things we don't talk about. And maybe my closet has sparkly gold walls and maybe your closet has rainbow walls or purple walls or a disco ball, but we all have closets. And I think life wasn't meant to be lived in isolation.
I think part of healing is finding your tribe and finding those things that feed your soul and going with it. And I'm learning. And I'm struggling and I'm embracing and I'm growing and I'm healing and I'm well.
Hearing her story, it felt like Vietnam and I was a vet. I knew that pain, I'd experienced the wondering when your life is going to end and if this disease is going to kill you and fighting to get better.
I'm in a different place now then I was a year ago. I'm back at school, I'm doing well, I'm stable, I have a life. And yet I'm still not better.
At school and in my now so called normal life very few people know about what I've been through. I don't talk about the medical side of things very much. Partly because I'm in a different place now than I was and partly because it's not relevant to where I am now and partly because for me it's a very personal thing. I'm doing well now but there's still that side of it that is still so raw and fresh.
I'm stable now and able to do so many things but there's not a day when I don't feel something and wonder if I'm getting sick again. There's not a day when I'm not scared that I'm going to lose everything I have right now. I'm walking the line between sick and better. I'm not sick anymore, not like I used to be, but I never will be better.
And this is my life now, finding a way to live and live fully with a chronic illness. Not letting the fear and the what if's rule my life.
Of course I'm still afraid. Of course it's still hard and overwhelming and exhausting and I break down because I don't want to live like this anymore.
I can feel the fatigue in my bones from the trying to be normal and balance my sick life and my normal life and trying to find what works best in terms of me feeling the best and how far I can push things without it getting awful.
I watched a TED talk recently by a woman who was talking about coming out of the closet. She said the closet was anything that was a hard conversation, something you kept hidden.
For me, that life I used to live, that's my closet. It's easier to not talk about it. Easier for me and probably easier for other people. It's easy to pretend that that's not who I am, that being sick isn't still this huge part of who I am. But it is. It has forever changed who I am.
So I think for me part of this new stage of life includes accepting that part of me while making room for the new part of me. I'm still that girl I was a year ago but I'm also someone new. My body is healing, my soul is healing, my heart is healing.
I had this thought that until I got the report that my conditions were cured, there would always be a part of me that was broken. I was living my life in fear of 'what if I get sick again' and I feel like I'm living this double life and it's exhausting. Until I was cured entirely, I believed that part of me was broken. Maybe I still feel like that some days.
But part of this journey is realizing that while I will never be cured, I am well. While I may never be healed, I am healing. Compared to where I was a year ago, I have made amazing progress.
That doesn't mean I'm not afraid. That doesn't mean it's not hard and I'm not exhausted. I still live my life by the clock. I still have to be very in tune with my body all the time. I'm still sick.
But I'm not broken.
I am struggling, but I am whole. I am cracking but it is only because I am growing.
I heard a quote this morning about things in life serving a purpose and then being done. And I feel like that part of my life where I was so sick, it served a purpose. And now I am moving on to this new chapter of my life. I am continually growing and changing. And just because I am shedding layers it doesn't mean I am no longer whole, it just means I am growing new skin, becoming a butterfly instead of a caterpillar.
One of the hardest things for me now has been balancing my 'two lives' and living fully with a chronic illness and not letting fear keep me in one spot. Sometimes I think it would be easier if I was back in that place where I was so sick because I knew what was coming. But that's now where I am right now.
I am here. I am healing. I am growing. I am changing. And while I'm not cured and still am sick and still struggling with that, I'm not broken. I'm not alone. And I'm trying to not fight the current and accept where I am now, surrender to the situation of where I am and not worry, not obsess over what could happen.
Sometimes I think I prefer to stay in my closet and not talk about these hard things because its easier, because it still hurts me to talk about where I was and where I'm headed when so many things are uncertain and while I'm not cured and still struggling every day. But once in a while I think it's necessary to fling open to the door to my closet and talk about where I'm at and where I'm struggling and how my healing journey is going. Because life is not isolation.
So this is my closet, the things I don't talk about. This is learning how to live again with a chronic illness, after you were convinced you were going to die. This is learning to embrace life and trying to live walking that line between sick and normal, between not cured but still well.
I think we all have closets, things we don't talk about. And maybe my closet has sparkly gold walls and maybe your closet has rainbow walls or purple walls or a disco ball, but we all have closets. And I think life wasn't meant to be lived in isolation.
I think part of healing is finding your tribe and finding those things that feed your soul and going with it. And I'm learning. And I'm struggling and I'm embracing and I'm growing and I'm healing and I'm well.
Friday, February 8, 2013
grace
“Someone I loved once gave me
a box full of darkness. It took me years to understand that this too, was a
gift.” ― Mary
Oliver
This week was overwhelming. I learned a lot this week, about high school things like chemistry and english, and about other things too, like love, and where my identity is, and grace.
While I got good news from my doctors earlier this week, there's something bittersweet about the whole thing. It's good and it's happy and I'm happy, but it's also scary and sad and full of so much emotion I can't even describe. I am overwhelmed by grace, because I really deserve none of this. I feel like I'm standing on something that is changing. The ground beneath me is shaking, and the world is spinning and it's hard to stay upright. Change is taking place here, something big, I can feel it. I'm excited, but it's hard too.
This week was the salty sweet kind. Days would come and I would end up crying in front of the TV or as I wrote something on my computer or as I sat in a chair after getting up in the morning. It's overwhelming and I can barely take it all in. I considered hibernation, curling up in a cave and sleeping until I figured out what to do with this beautiful mess I call life. I spend one moment falling apart and the rest of the day piecing myself back together. Slowly, piece by piece, I gather up my broken courage and muster up a timid roar. As it turns out I'm not feeling so brave or fearless these days, just sad. It's not a bad kind of sadness either, just a kind of sadness that takes time.
And so this is it. I must learn how to sit with this space in my head and in my soul. I must learn how to respond to this unending grace in the only way I know how - with unending gratitude. I must learn how to stand on my own two feet and find my courage again when everything is shifting around me and I feel so unstable in where I stand in and in who I am.
But I am keeping this list of tiny blessings, my grateful response to this amazing grace that has been showered upon me. And while the good things don't necessarily cancel out the bad, the bad too, I am learning, is a gift.
158. Dr.M
159. Eating at the Olive Garden
162. Stable
169. Heels that click when I walk
172. Overwhelming grace
173. PJ day
174. Laughter
175. Understanding
176. Hot Bubble baths
177. Accomplishment
178. Grey's Anatomy nights
179. space
180. frog socks
183. aha! moments
184. The reminder that I am enough today
186. Bowling
187. Friends
188. A day spent in town with my mama
189. discovery
190. finally catching up on some school'
191. blonde
192. love
193. Kendall's blog post
194. Friday
This week was overwhelming. I learned a lot this week, about high school things like chemistry and english, and about other things too, like love, and where my identity is, and grace.
While I got good news from my doctors earlier this week, there's something bittersweet about the whole thing. It's good and it's happy and I'm happy, but it's also scary and sad and full of so much emotion I can't even describe. I am overwhelmed by grace, because I really deserve none of this. I feel like I'm standing on something that is changing. The ground beneath me is shaking, and the world is spinning and it's hard to stay upright. Change is taking place here, something big, I can feel it. I'm excited, but it's hard too.
This week was the salty sweet kind. Days would come and I would end up crying in front of the TV or as I wrote something on my computer or as I sat in a chair after getting up in the morning. It's overwhelming and I can barely take it all in. I considered hibernation, curling up in a cave and sleeping until I figured out what to do with this beautiful mess I call life. I spend one moment falling apart and the rest of the day piecing myself back together. Slowly, piece by piece, I gather up my broken courage and muster up a timid roar. As it turns out I'm not feeling so brave or fearless these days, just sad. It's not a bad kind of sadness either, just a kind of sadness that takes time.
And so this is it. I must learn how to sit with this space in my head and in my soul. I must learn how to respond to this unending grace in the only way I know how - with unending gratitude. I must learn how to stand on my own two feet and find my courage again when everything is shifting around me and I feel so unstable in where I stand in and in who I am.
But I am keeping this list of tiny blessings, my grateful response to this amazing grace that has been showered upon me. And while the good things don't necessarily cancel out the bad, the bad too, I am learning, is a gift.
158. Dr.M
159. Eating at the Olive Garden
162. Stable
169. Heels that click when I walk
172. Overwhelming grace
173. PJ day
174. Laughter
175. Understanding
176. Hot Bubble baths
177. Accomplishment
178. Grey's Anatomy nights
179. space
180. frog socks
183. aha! moments
184. The reminder that I am enough today
186. Bowling
187. Friends
188. A day spent in town with my mama
189. discovery
190. finally catching up on some school'
191. blonde
192. love
193. Kendall's blog post
194. Friday
Tuesday, February 5, 2013
Stable
Sunday, February 3, 2:22pm: Voices singing along with the radio, calling out, asking for deliverance, proclaiming hope and truth as we enter the valley of the shadow of death one more time...
Monday, February 4, 10:30am; I kind of love my doctor, like a lot.
4:00pm
Monday, February 4, 10:30am; I kind of love my doctor, like a lot.
4:00pm
#retail therapy
Tuesday, February 5, 11:43am: The word stabilized never sounded so good
2:05pm:
8:53pm: I am home. I am stable. Both of my doctors agreed I look good. For the first time in a long time I heard the words, "stable." I am stable. my disease is stable. i once heard this period of stability with a chronic illness as being a stabilized remission. i like that. i am in stabilized remission.
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