I have a hard time when people say “Get Well” “Get Better Soon” things like that because I don’t know what well is or even better, I don’t even know which I like better I don’t know how to take those phases because like get better… What kind of better.. I mean right now I am better than I was in July when I was almost dead, I’m better than being in a coma, but I am not better than I was a year ago, and I haven’t gotten well but I feel well mentally, I am a happy person most of the time but I’m not better I’m not well, I am sick, I have illnesses.

   So when people tell me these things like that I don’t know how to react. I feel like I smile and nod a lot when people tell me these things but I think it’s mainly because in our society we want people to be healthy, but what is healthy?

  This is what I was thinking about last night, if I was per-say “healthy” right now I don’t think my life besides the doctor appointments would be that different, I think I would be living with my sister Stephie I might work at a daycare and I might eat more cookie dough and I most likely would go to the movies more, but is that really better? Is that a better life? Or just different. I see it as different.

  I know my papa might not see it this way but I think the best thing that ever happened to our family was when my papa almost past away a few years ago when he was bleeding into his lung, yes it was scary but afterwards we all came together, I think our family became insanely close because of it. We were always close but we became closer.

   I don’t think Rory would have been born when she was. Sean might not have moved back to North Carolina and Matt and Sam might not have adopted or gotten Carson as soon as they have. Josh and Vana might not have as strong a relationship as they do. Things would be different. I don’t think life is worse in any way but just different.

 My papa’s body going into shock as I watched him fall to the sofa covered in his own bloody vomit was a scary horrid moment but it wasn’t bad. Things like that happen for reasons and I see no use in trying to act like they don’t happen. I want to find the reason they happen and keep going. Find ways to live in the different.

  This past two years alone have changed me. I have had two surgeries and I have spent over a month in the hospital over time, I have had more doctors appointments then anything. I have had rabies shots, I was bit by a bat to get that. I have been to countless ER trips. I lost my grandma I lost my best friend and service dog Beng and I have been in a few comas and I have seen my family break and rebuild. I have seen pain and had pain but it’s okay.

  I see all of this as an okay thing. Yes I miss my grandma so very much but it was okay, I miss Beng but its okay. It showed me something things don’t happen without reason or I beleive they don’t.

  I wouldn’t be able to get through all this if I hadn’t gone through all that I have gone through. I know better is a relative term but to me life is better than it was, my health is not better but I am a better person. I am more caring. I am more who I want to be. But I am growing still…

  So I guess yes I am better, Yes I am well but health wise I am in pain and my body is failing me horridly but I am loving who I am becoming…

Shayweaseling it….

I remember weird things from my coma so here is the best I can place of what it was like to be in my medical induced coma.

   I was put into a medically induced coma on June 29th 2015 for about four days because I was having non-stop seizures and I was having brain damage from them.

  So here it what it was like for me… Right before I went into the first seizure I had a moment, a weird moment, of bliss like pure bliss everything felt okay, when I woke up again I felt like pure evil had run into my body and all I could think was I might not wake up from this. This might be what kills me..

 That was the last time I was truly awake for a few days. So I remember a coffee shop, my dog Beng was there and sitting in my lap. My friend Macy was talking to me about eating pineapple popsicles, we talked about this for some times till I remember hearing Stephie talk and it was like I was somehow sitting in the car, it wasn’t her new car and Stephie was younger she was talking about work that day and we were driving in her old beat up car and the smell of summer was in the air, she was laughing and telling me about Rory, but she didn’t look like she does now. It was hard to place. But it all seemed nice. Another voice I didn’t know came into play, I didn’t know this person but Stephie whispered something in my ear.

  My feet were cold. I didn’t like that I wanted them to be warm. I kept thinking that, somehow my sister Stephie knew this and brushed my hair and I remember thinking as she brushed my hair and put pretty socks on me that I was safe, no I didn’t know what the socks looked like but I knew stephie and in my coma induced mine those socks were the bomb.

   When my papa’s voice came into play we were both in a bookstore with all of my favourite books, he was telling me about each little bird that sings and how I couldn’t be like the dog whose name he couldn’t remember. He told me I needed to come read a book with him. I asked him if he wanted coffee but he didn’t answer.

  I was sitting in the living room all the sudden all the lights were out and Tara sat in the chair close to me and screamed as the person on the TV jumped and the scary movie we watched played, she asked me how I wasn’t scared and how I was still hanging on. It felt nice and safe I smiled at her. She smiled back I somehow noticed Holly was sitting in the chair on the other side of the room, she asked me if I wanted anything. I tried to answer but I couldn’t..

 I was sitting outside in the grass, my dog Dodie was sitting besides me and she licked my face, my friend AnnaJoh who looked like the last photo I had seen of her on instagram she asked me if I was hungry and I remember not being sure what to say. I felt foggy and the backyard was very dark.

  The stars seemed to dance as I laid down next AnnaJoh on the grass and looked out on the stars above. It seemed peaceful.

  “Shannon, Baby” I remember my mom was talking but i couldn’t find her, I was walking through a dark hotel as I heard my mom’s crying voice, I was looking through the hotel but couldn’t find the room she was in, I was trying to yell back but my voice wouldn’t come out. I walked into a room full of old movies and my mom sat in the corner and she said “Want to watch This movie?” I couldn’t tell what movie was play till I noticed it was Breakfast At Tiffany’s I smiled and sat down beside her, she had popcorn in her lap and I remember thinking that this was weird because I didn’t have a headache from the popcorn like I normally do.

     Gigi, who was the lady who gave me Beng sat besides me we were riding in her car and were talking about something it was sweet pure and simple, she asked me if i wanted to go back to her house or be dropped off at Stephie’s house. I told her i wanted to be dropped off at Stephie’s house. We drove for a long time. Talking about Dogs and about the earth and she kept repeating she was proud of me. She told me we had to make a stop before we went to Stephie’s house.

 The car stopped and she told me I could get out if I wanted to. I opened the door and Beng jumped out of the car and I followed him into a nice hotel room.

 My grandma stood in the kitchen cooking pork chops and turned around and said “You don’t have to have any anymore. You are brave my little Rose…” I smiled and sat down on a bar stool, my grandma rosa gave Beng some Pork chops and sat beside me.

 “How are you feeling?” I asked her she told me she was doing good and that the room serve wasn’t as good as she could cook herself she kissed me on the cheek and somehow I was being dropped off at Stephie’s house, Gigi said “I’ll see you soon,” and I go out of the car and Beng sat and looked at me.

  “I love you Beng.” I started crying it was a long cry, I couldn’t stop crying Beng kept whispering to me I see you soon, all is good. He cuddled up to me and I fall asleep on the ground outside Stephie’s house…

  I opened my eyes to doctors talking to me I didn’t understand them at first and felt scared, I fall back to sleep. I remember stephie asking if I wanted to listen to Taylor Swift and the answer to that is always yes for sure!!!

   I have a weird memory of talking to my sister Vana, we were drinking coffee and talking about books is the basis of it..

   

  Soa yea, that is the basis of my weird mind on insane medicine to save my life and that put me into a insane coma….

Shayweasel out…

 

Hey Nick, Stephie…

I’ve been meaning to sit down and write you guys for sometime but the words that I want to say just seem like to little for all you both have done for me. I am thankful for the sleepless nights and the lovely thoughts and all the time you spent making my life, my health, my happiness easier and more enjoyable. I notice all the times I wake up from a seizure with you holding a napkin with my lovely vomit on it. I am thankful but I don’t know how I could thank you enough.

  Everything you have done for me is more than I could ever just put into a small amount of words. Thank you Nick for stabbing me with the epipen and auvi Q thank you for knowing what to do and say and for always staying calm.

  Thank you Stephie for coming to the hospital after work, before work, and even during work and staying with me, bring me coffee, holding my hand, buying me socks, buying me clothes, brushing my hair, telling me you stand behind me.

  Thank you both for making such an adorable child I just feel like this should be added in because she wouldn’t be so fantastically amazing without you both and she wouldn’t have such a kind heart if it wasn’t for both of you. She wouldn’t love so deeply. You guys are raising her gracefully and lovingly you both are doing a great job making her a person that is more amazing than any other 3 year old I know.

  Thank you for having amazing friends who stay with me and who will come over and hang out with me and who don’t freak out when I have seizures or when something happens. Thank you for never giving up on me.

   I hate that phrase I don’t know where I would be without you because I know I wouldn’t be as happy as I am today without you both. You guys took me in before I was sick you took me in after I became sick. In 2011 you guys let me come live with you guys and you always made sure I was safe.

  You both have done more for me then i could write out. Thank you for never giving up on me. Thank you for caring for me and for loving who I am as a person. Thanks for the endless hours of watching Stargate with me Nick and thank you Stephanie for watching Orphan Black with me whenever I want. And thank you both for always listening to me rant and always being here when I needed someone.

  i am foreverly grateful for y’alls ever amazing kindness. You guys are true fighters, true heroes and you both have made me a better more loving person. Thank you.
Shay….

Shayweasel out….

 Having this blog is not just something I do as because I’m bored, I do it because I feel like writing is something I have to do. It’s like my thoughts demanded to be written, so I write, and I write. I love writing it’s what I’ve wanted to do since I was young, I thought about having my books on a shelf and taking a photo next to it. Seeing my name in a magazine and the biggest thing I have always wanted is to help people, understand people.

    I feel like strangely my passion is wanting to showcase someone’s life and to show them what it is like to be like someone else. I just want everyone to understand each other. It’s my goal in life I feel to help do that. Help show someone else’s point of view, to be able to be an understanding caring person. That’s my goal. I want to show people how fantastically and how horrid people’s lives can be.

   Wanting to be a writer hasn’t come easy for me, I have dyslexia and its really bad, I have a kind of dyslexia called Specific Developmental Dyslexia I was diagnosed when I was a young child. I wasn’t sure if I would ever read or write and the people who diagnosed me told my parents that if I could learn to write my name then I would be doing more than they thought I could do.

  But slowly at the age of 12 years old a book called the Foot Book by Dr. Seuss made sense in my head and I was able to read it. I didn’t stop reading, and I was writing by hand soon, it was harder for me to write by hand. I struggled and at times I felt like giving up, but slowly I decided that giving up wasn’t in me. And that nothing could ever try to keep me from doing what I love and writing is what I love. So I kept working and I worked hard.

   When I was 17 something awesome came into my life. A laptop. It was simple, it was there and I sat at the dining room table at two am on a Wednesday night and the world went into another place the keys they didn’t move so when I typed it was easy. Spell Check and autocorrect made my life more grammatically correct. I started writing and writing and soon I had written books that I wish to have published, but I just was writing. I wanted to just write. I was writing and it was like nothing I had ever felt before, It was like my kind of happy place.

   As I wrote something clicked in my head and for some reason the world around me didn’t feel so scary. I was no longer worried I wasn’t going to make it in this world, because I knew that my writing and my brain could do lots of things. I didn’t give up..

  Last year I got so sick and I lost so many people close to me, but something inside me knew that I needed to start telling people what it was like to live inside the world of the spoonies and the world of someone dealing with chronic illnesses.

  Videos on YouTube from people like The Clairty Project and The Frey Life made my goal seem real, they did it. The Frey Life does it every day, they show the daily struggle, and it makes me feel like if i keep going that I can help people understand the hurt, the pain, the life, the beauty, the fantastically parts of life. I want to show the ups the downs and the lots of looking for the bright side. 

   I really like this thing I read once about how which side is the bright side of the rainbow, like is it during the storm or is it after the storm? I think it’s during it, that’s where the brightside of the rainbow is. I think the brightness isn’t where you imagine it to be. When you’re eyes start to adjust to the darkness you start to see more clearly, and things became different and amazing.

  I’m not who everyone thought I would be, but I’m who I want to be. I will not stop doing what I love, so if you want to follow along to my beautifully fantastically life!! Then please do… I want to write because my soul demands me to write, so I will write. I will keep on keepin on… I am not sure where I am going but I’m making great time… And I’m just as confused as you…

Links to The Frey Life are here  – https://www.youtube.com/channel/UCFJY0O-pkdXs6YuM5KW7r7g

Link to The Clairty Project are here – https://www.youtube.com/channel/UCsowH-H5X0OXMreWz_ukWPw

Go Check them out my newly friend Jasmin’s blog, she is an amazing person who has fantastic taste in music, and authors! She is also living with a very rare disease called Fibrodysplasia ossificans progressiva (FOP) Go follow her fantastically writing here  – http://jasminfloyd.com 

Shayweaseling it….