Rare Disease Awareness Day

Today I'm blogging for rare disease awareness day.
It is estimated that 1 in 20 people have some kind of rare disease.
I am 1 in 20
In treating these conditions, mental health is just as important as physical health, and most people struggling with a rare condition end up feeling alone. That's why there's this day: rare disease awareness day, to join hands and take down the borders surrounding rare diseases and let people know that they aren't alone.


I was diagnosed with glycogen storage disease type 1A when I was 4 months old, and with dysautonomia when i was 15. I've gone through many, many tests, hospital stays, doctors appointments, new treatments, therapies... I know what it's like to be alone, to feel hopeless. I've watched friends fight their own battles with rare diseases, and for all of my life I've been fighting my own.
I've been sick for pretty much all my life. I don't know what it's like to be 'normal'. I don't know what it's like to look at myself and not see the G-tube or what it's like to be an average 16 year old. I know this: doctors, hospitals, needles, tests, scans, pain, isolation, surgery, feeling alone and hopeless. I know more about my conditions then most doctors, and my heart rate has been higher then that of patients on medical shows right before they get the paddles. This is my world.
But I also know this: hope, what it means to be a fighter, strength, bravery, and courage. Even in all of this, I am blessed. And because of all of this (not in spite of it) I am standing tall, stronger than ever.


Today I'm not asking for a cure, though I have faith that one will come someday. I'm not asking for a life with less struggle, less pain or less hospitals, doctors, tests...
Today I'm just asking for help in raising awareness for rare diseases like mine.
I'm asking for you to help break through the silence that surrounds rare diseases.
I'm asking so that nobody feels like they have to suffer through these conditions in isolation.
i'm asking so that no other person like me feels like they are alone
I'm asking because alone we are rare, but together we are strong.

Under the Bed

Little is Much

I went up to the NICU today.
A lady from our church had a baby pretty recently, a preemie, and they are in the NICU here and today we got to go for a visit.
The NICU is still, and in my mind it's kind of peaceful. It's different from the ER, or even the regular PEDS wing in that it's quiet, and the lights are low and there's little nursery rhythms written on the walls and stars. There are no rooms, just different areas sectioned off by curtains. Everything feels gentler and softer.
There was the beeping of the machines, nurses and charts. But this is the kind of world I know best. To me, it felt familiar, even while it felt foreign. I know this world, even though the NICU feels like a different part of it, like different states in the same country.
The smell of the hospital soap was familiar. So was the nurse at the front desk of the floor, and the large white board with a list of patients and doctors. I still remember the location of the kitchen, and the playroom like the back of my hand. I can pick out the rooms where I've stayed (Most of them) and the rooms were I haven't (Very few.)
It's been a while since I've been here, but I still remember it well.
Baby E is tiny, so tiny. Her 4 pounds felt so light in my arms. She is perfect, absolutely beautiful, and so amazingly knit together for arriving into this world too early. She is whole, a tiny human being. I held her and she opened her eyes and 'smiled' at me, and she squirmed and wriggled.
I could have stayed there for a long time, breathing in this darling baby. Every so often I want to go back there, crave the chaos that happens in that place. Because I grew up there. I colored pictures for nurses and walked up and down those hospital hallways.
The ones who enter in these hospital doors, who spend the night, the preemies and the chronic illness children and teenagers, they are family. They are my kin.
As I hold these babies in my arms or look into the eyes of a small child, it's sort of enchanting. It's a "Hello, welcome to the family. I'm Alisha and your life won't be easy from here on out but I promise you that you won't ever be alone and that you can make it through this."

Is this not the kind of fasting I have chosen? To loosen the chains of injustice, and untie the cords of the yoke, to set the oppressed free and break every yoke? Is it not to share your food with the hungry, and to provide the poor wanderer with shelter, and when you see the naked clothe them, and not to turn away from your own kin?
Isaiah 58: 6-7

This is the ministry I've been called to, one full of love for the sick and broken, the outcasts. This is my family, my kin. This is the kind of fasting that has been chosen. And while this isn't the life I have chosen for myself it is the life i have been given. Life that is a gift, life that is beautiful none the less, a life that is full of love and blessings and hope. This life has become my ministry, my grounds, and these people have become my family, my kin.
I walk these hospital halls and they are all achingly familiar. This is the world i know. I grew up here, lived here, grew here, loved here.
This is the kind of fasting I have chosen: to not turn away from my own kin. I have little to offer, but I know a God who turns a little into enough. I am sick and broken myself, and the hands I stretch out are empty, but I know a God who uses those empty hands to bless and to love.
I have been called to this place. And while I may not understand I want to raise my empty hands and let them be filled. These are my people. This is my ministry. This is where I have been called to give and to serve and to love. This is where my emptiness becomes enough.

Introducing Charlie

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

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

#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.