Kristin's Konffessions

I haven’t written for forever and a day. I won’t lie. It is a close comfort to me for thoughts to be translated into fine text sliding into my keyboard and reminding me that words will always be on my side. I have had a hell of a few years and honestly it hasn’t been great. But this is not about me. It’s about Jerika. Who is Jerika you may ask? Read this for some basic facts about her and off kilter SMA facts. This for some accurate opinions from SMA’s realistic “victims”.  

&WATCH for what we ALL should say to this girl.

Jerika is a 14 year old girl whose made national news for making the drastic decision to kill herself over an understandable aggravation with ventilators, wheelchairs, pain meds, depression, and hormones. She claims to be “unplugging her ventilator after having a terminal case of SMA.” It should read “Teenage Girl Decides to Die because she can’t get around typical Depression a Disabled Teenager Has.” Okay I’m being cruel I know but hear me out... I know what she is going through because I have gone through it. I have SMA. My point isn’t to trash her or blame her. I know exactly how she feels. 

FLASH BACK: Sixteen year old, Kristin Walters. Used to be ambitious, cheerful, and have a kickass attitude. I was depressed. No boy wants to date me. my grades are low, I’m hurting so badly. I’m home with my best friend hanging out in the living room. I head towards the back door and stare the pool down. It calls to me. I want to drive in and literally drown my sorrows. 

It isn’t a secret. Life sucks at times. Four years later I found myself in a coma. Having a trach put in and not able to rely on anything but my mom and dad who knew my wishes when worst came to worst. Now that scar stands proud on my neck. Even if they hadn’t stitched the hole up I still would have survived. Hell, another thing to bejewel. Jerika doesn’t have a trach. And I’ve done things after that that would not have happened if I gave up. If the girl is hurting there are things that can be done. But after all of this she’s still a smart, beautiful, useful person and her reason to be here isn’t for her loved ones to grieve her. 

There is another problem with this whole dilemma. SMA is getting a horrible rap for this. Not that it is a pleasant disease, be there such a thing. But the people writing about it are obviously not knowledgable. SMA doesn’t kill anyone first of all. It is mess up in the connection of the brain to the muscles, both voluntary and involuntary. It can cause weakened lung state that can cause life threatening pneumonia. Or the lungs can be weakened so much that things such as strong medicine can alter breathing. But things such as ventilators and tracheotomies can help things like that. Other involuntary muscle systems can be affected also. Things like the heart (biggest muscle in the body) and even the digestive tract. Tongues weakness is common affecting speech as you get older but it is by no means impossible. The pain is terrible but certainly not unbearable. Every day I wake up hurting I feel better eventually. I take medicine for it but it works. Anyway, meds is where I draw the privacy curtain so back to what I was saying, lets go over some false media facts... “...type 2 spinal muscular atrophy, that typically kills during adolescence, but not before inflicting great pain. “ Not only does SMA not typically kill... it doesn’t typically do anything during adolescence. The pain also is tolerable for a lot of people.  Link. “The alternative: She would lose the ability to control her hands and to speak, while experiencing more crushing pain and surgery along the way to an inevitable death.” Link. One, not everyone loses their speech ability. Two, death is inevitable for EV-ER-Y-ONE!

“...the loss of all muscle control...” Link. You can’t lose what you don’t have. 

“...left her immobile after damaging her muscles.” Link. It does not damage the muscles as much as never really building them.

E.t.c... You see?

So Halloween is 100% my favorite holiday. It is the only time of the year when you get to literally be someone else. Not to mention haunted houses, 24 hour horror films, and, of course, CANDY! Now being in a wheelchair it can be difficult to feel as cool or sexy as most people. So I'm making a list and hopefully I can give others ideas for how to rock the wheelchair on All Hallows Eve. And I'm going to post this in the facebook group Living with MD.

Mermaid

http://www.instructables.com/id/Kidnapped-Mermaid-Costume/

What is the number one problem about dressing as a mermaid as a normal person? You can't walk with your legs sewn together. When you don't need to walk it makes being one with the sea that much easier. A great ambulatory way is to be a "Kidnapped mermaid." Where your legs are the pirates and the rest of you is mermaid but if you don't need to use your legs then you can have a proper tail, and the chair can be decorated according to how you want to come off. Blue blanket to simulate water and some paper or plastic fish. Create a giant clam. Or cover it in a grey material and you are sunning on a rock.

DARTH VADER TIE FIGHTER

Now I admit that I don't know as much about Starwars as I should, but this costume looks wicked cool.  All you need is some black clothes, cardboard, paint, a glowstick, some tape, and of course Darth Vadar Helmet.

Genie

So you could be a genie or Aladdin or go all Disney and be Jasmin. Kind of whatever you like but a little too cheesy to be anything other than a genie IMO [In My Opinion]. Now there's an

instructable

to go with this so I'll point you that way but since you don't need to walk forget the walker.  

“Patches”

If you haven’t seen Dodgeball STOP READING AND WATCH! You either love or hate it. If you love it like me then you know who “PATCHES” O’Houlihan is. The costume is simple bomber jacket, off-white cloth, and red rubber dodge ball. Go around telling people “DODGE DUCK DIP DIVE AND DODGE”

And remember that if you can dodge a wrench, then you can dodge a ball.

Cinderella (pre-ball, post godmother)

So when I was like five my parents took cardboard and made a pumpkin carriage out of it. While I was like 5 I can remember it being magical. So the carriage stuck on the side of my chair and I had windows on the side. While I know it may be juvenile I believe Halloween may be the best chance to get out yourr inner child.to come out. While I have no idea where a picture of me is you can do so may things with this idea from  childish and goofy, to glamorous, even change the direction paint yourself green make your carriage an onion shape carriage and BAM! You are Shrek. It is a little trickier but creative nonetheless.

A Sailor

Who does not love a sailor or even a pirate. Simple clothing choice obviously. And a simple poster board boat. Grab a pole to connect to wheelchair. Put a flag on the pole (black shirt and chalk). I also want to add that I, and a lot of other women, think pirates are sexy

This is wicked awesome... But for a simpler start try this and adapt.

*sigh*

Some one on a ROLLLLERCOASTER

So I saw this one online and thought to include it. It is simple. Cover your chair in red cloth or poster. Put a metal bar in front of you and done. Want to make it gross wear a white shirt and splotch it with jelly. Gross yes but I’ve seen worse.

Drummer

A unisex costume grab a concert shirt, ripped jeans, and pots and pans. cover them with symbols of a band. It is simple yet avant garde. plus you get to rock out hard core at whatever Halloween party you go to.

Charles Xavier or Professor X

Beloved X-Men character Charles Xavier was paralyzed while trying to save the world from villain Sebastian Shaw. While he was successful it left him wheelchair bound. He has become one of the most famous character’ in a wheelchair. All required is a bald cap and a suit.

(who doesn’t love Patrick Stewart)

Cowboy

So I’m in Texas but this will be super cool. So get one of those stick ponies and stick it between you legs above your footplates. Button down shirt and cowboy hat and you are done.

In Conclusion:

There are so many creative ideas and it is like 1 am. Sorry for any bad grammar or poor spelling. I have been working hard but these costumes are just if you WANT to include your chair. Ideas are endless if you put your chair as an after thought. Poison Ivy I covered chair in fake leaves. I’ll post some old costumes but I’m signing out, thank you for reading.

I was in a bar tonight. Yes, I drank. Yes, I’m under 21. But my parents were there and in some establishments in Texas they serve minors while with their parents. The room was vibrating from the blaring music and the sound of laughter and voice strewn throughout the establishment. My drink didn't taste of alcohol but of some Whole Foods style lemonade. The food tasted right. Not too salty and not too bitter. Truffle mac’n’cheese for the most advanced pallet. Some fries had left crumbles of cheese across my lap. I have always been a messy eater. Why am I describing this...? Because a month ago I couldn't even remember what is was like to breathe on my own. I couldn’t remember anything from the previous two weeks. February 5th I got a sore throat. I thought I had just slept with my mouth open. 

Two days later I awoke to a cough that quickly turned dangerous as I struggled to breathe. By dinner I was in a hospital room feeling “-bleh.” They said they would keep me overnight for observation but most likely I’d be released by the next night. They were very far off. Seven o’clock is shift change and that is when it happened. I started coughing so they gave me an albuterol breathing treatment with a nebulizer. For those that don’t know the nebulizer turns the liquid medicine albuterol into a vapor you breathe in through a mask for quick access to the lungs. It didn’t help. I started coughing so much that I couldn’t inhale. That was when I coded. Tens of people rushed into the room (which was a miracle during shift change) started hooking things up to me and before I knew I was being rushed to get a MRI to check if I had a pulmonary embolism which is a blood clot in the lungs. I remember the warmth of the dye going through my body and nothing else.

Two weeks later I remember, although I was conscious for most of those two weeks a medicine with an amnesiac effect, versed. All I remember was a fun house. Walls were moving, pictures dancing, and a mystery nurse. It was all fake. Part of a drug induced coma. I had a severe case of pneumonia. I had tubes coming in and out of everywhere. I couldn’t talk and wrote word F--K on my whiteboard out of frustration. Even in my drugged state I insisted on writing full sentences, which ended with me falling asleep before getting to what I needed. My breathing was so bad I was put on a ventilator to breathe for me. I wouldn’t wake up one night because there was too much CO2 in me and not enough oxygen. Eventually I was put on a trach.  After more healing they took the trach out. Now I’m still recovering and there is still a scar. There will always be one.

In three days I went from fine to scary sick. My dad came in from out of state and it was the most time I had spent with him in 14 years, People sent prayers, stuffed animals, and love. I could barely move when I woke up and still to this day I am weak. But my doctor told me I an experiment was done where astronauts layed in a hospital bed for three weeks and not one of them could walk when it was over. At one point my mom made the choice for me to live with the trach because without it I would have died, because in the past we had discussed this and if I needed that to live I wanted to live. I believe people should make just in case decisions about those things like I did. That way your life is in your hands.

I felt death reaching for me and I pushed it away. I spent 25 days in a hospital bed. I missed Valentines day, Mardi Gras, Lent (Only catholic tradition I follow), and my daddy’s 60th birthday. I deleted all evidence of my hospital stay from Facebook. Now though I don’t cover my scar. It is a battle wound. But still I’m a survivor.

Life is a crazy thing. Within a month a baby as golden as Zeus’ throne itself was born, only two weeks later I had lost a woman of great importance (one of my caregivers). It was like a piece of the well oiled machine I called my life was missing and I couldn't play it right. I cried. A lot. I became severely depressed. While I had this beautiful new niece with blonde hair and blue eyes, I was raw still from the loss. I dropped out of school because of my grief. I hit some lows. Luckily I had enough clarity to not self harm again. It took me three months to finely feel normal. I tried different things. Therapy- still here today. Volunteer Work- Kept me distracted but it was too soon. Crafts- I sew for a hobby but with my small range of motion it can be hard.

>>lFast Forward >>l [8 Months Later]

One of my best friends I have known since I was 7 and other than family (blood or married in) I have known her longer than anyone else in the world. We've been there for one another since I can remember. Now sure we aren't as close as we used to be we still make an effort to keep in touch. Sometimes I would ignore her texts because there was nothing new to update her on or the news wouldn't have made sense. When we were in elementary school we were kind of bullies. I know... a bully in a wheelchair... that is ironic. There was a boy we told him this little snotty girl liked him. He got so excited and when he found out we lied you could see the joy draining out of  him. I remember how insanely stupid this whole thing was. Our first fight was one sided. She lied to me about something trivial and she would not give up the truth. We had a lot of arguments about her lying. I remember one time she got mad at me because she thought I told this tiny brat she wore thongs when really she had asked me a question. The teacher had to intervene because I was so incredibly upset.

But it wasn't all bad. We'd play jail on a baseball field on the far end of of the playground [I was her lawyer, lol] she visited me three summers in a row after I moved to Texas. She was even there the day I got my first period. 

In October she posted a picture of an ultrasound. I was utterly pissed. Why hadn't she told me she was pregnant before announcing it for Facebook to see? I talked it out with her and my anger faded... But I heard some poorly tasted comments that I tried to defend her but I was defenseless. She came from a slightly unwealthy home and was the daughter of a teen mom. She made it further than her mom though. She graduated high school and got in 2 years of college. But I have already had one friend have a baby... So what?

He was born exactly a week ago. He was 3 lbs. 14 oz. He has Jaundice and is 11 weeks a premie. Since he was born he lost over a pound. He needs prayers. Life is such a fragile thing, especially this early. She hasn't even gotten to snuggle him or feed him or change his diaper....

You never really noww how much you love someone until you feel the cracks in their broken heart. It feels like yours is broken in an identical way. I've never felt so sincere anguish from someone else's tragic circmstance. She doesn't deserve this.

1. To start off my mom has always loved everything I've written over the years. From poems to short stories to blogs. So as my gift to her this is a mother daughter love letter.

2. How she has supported every wacky hobby, idea, or dream with the love and grace needed to make it happen. Even if it wasn't probable or even possible.

3. Her devotion to me when I am sick is astonishing. She once had a flight booked to go to her aunt's funeral and found out I was sick and changed her flight to come be with me at a hospital across the state. She has promised me to never leave me alone in hospital room and I love her for so much for that.

4. She can turn anything into an adventure. Going to the store to make a new recipes is exciting with her.

5. Her intense love for all family and her heritage. From traveling to my grand mother's birthplace in France to the fact that one ancestor sat in a high place in government when Roosevelt was in office. 

6. Her appreciation for home and the nostalgia that surrounds it. New Orleans has a fleur-de-lis shaped place in my heart because of her although it was only my home for a small amount of time.

7. Her craftiness. She taught me how to bead when I was very young. She taught me to make strong bracelets that hold together well.

8. The fact that about almost everything I go through she can understand because she has been my age once and been there done that.

9. She always wants me to be independent [partially so I'll get out of her hair] but mainly because she knows it will benefit me.

10. She will always tell me the best possible outcome as if that is what is going to happen because she knows that is what I need to hear.

11. She doesn't sugarcoat things despite #10. She tells me how it is, how she feels about it and why.

12. When I was learning about the nitty gritties of life she told me that if I wanted to know anything at all that I should as her instead of asking my friends and get the wrong information.

13. She let my friends practically live with us because it was hard for me to get out and play or go sleep at other people's houses.

14. She let me stay home from school when we had field trips I wasn't physically able to go to for one reason or another. We would go see movies or shop. So much better than educational movies and nuisance assignment. 

15. How the first time snow stuck on the ground again she let me stay home. We drank hot chocolate by the fire, watched winter-y movies, and took Blackjack for a walk. Behind us was a trail of wheel tracks, shoe prints, and paw prints.

16. The fact that so much of me is her. Her looks, her brains, her creativity, her ability to overtalk...

17. Even things that don't make sense. Her love for detective stories, taste for good food, and love of the colorful.

18. That if I told her to just pick something out I'd like she would bring home something perfect.

19. And that perfect thing she would probably want to borrow because she'd love it just as much.

20. We know each other smells like. I know it sounds weird but it is comforting and unique.

21. The fact everyone knows she is my mom by just looking at us.

22. The fact she'd be willing to get or do anything for me even things I would even mention to others. Not going to specify on that one.

23. How she will gossip with me like we are two crazy teenage girls.

24. In school when I held my self to such high expectations she just cared that I was happy and at least trying my best.

25. She makes up these crazy jokes only she understands or thinks are funny.

26. She can make me laugh at my lowest point.

27. She makes me laugh at the most inappropriate times.

28. I swear she can read my mind with her crazy mom super powers.

29. We both agree that no movies is ever fully complete with some food with which you stuff your face.

30. Sometimes when I am in such a completely crappy place that she is the only one in the world who can bring me out of it.

31. The next few are frequently started phrases...

32. M- "Mom..."

33. I- "I need..."

34. C- "Can you..."

35. H- "Have you seen..."

36. E- "Eeek, I'm sorry..."

37. L- "Love you more..."

38. E- "Excuse me..."

39. My mom tries really hard not to lie to me about anything.

40. She survived my brothers so I know it is possible to live with men.

41. She tells me the sweetest stories from when she was a little girl.

42. When we were in France she stole a nail that held the train tracks in place in the front of the building her mother was born in.

43. She will occasionally steal a stuffed animal from my room because she still claims Blueberry is hers... wrong.

44. She still acts occasionally shocked at things I say sometimes....

45. And do.

46. She'll even be impressed over me telling her something ridiculous like a dirty joke.

47. Her favorite color (purple) is the mother of my favorite color (magenta). 

48. Her first birthday that we lived in Texas she spent with just me and my Uncle Barry(RIP). We had some amazing Italian food with him in Lafayette, LA and she was serenaded to from a man with a guitar to the song "Time in a Bottle" It was one of the last times I saw my uncle.

49. The next birthday we went to an MDA charity event and I was being immature because some friends of mine had gotten her a gift and I didn't get to until later that day. I had felt they were better daughters than I was. She just wanted me to be happy.

50. Her 50th birthday she wanted to go to Hawaii because it was there fiftieth anniversary of being a state that same day. We didn't have the money so Steve decided to take her to San Antonio for a night and not tell her where they were going. I knew and she kept trying to get me to tell her. She was positive it was Schliterbahn.

51. My gift this year is this very difficult and very disorganized list. That and I stole her gift to herself and told her it didn't come in so she would be surprised.

52. She is the kind of woman I would be proud to be when I'm older. Strong, caring, and tender. If she doesn't like you then you won't be treated like someone she cares for. If she does then you will be given a piece of her heart

53. To me she will always have all the answers in the world. She is and will always be my best friend.

54. If she was my age and we weren't related we would be best friends attached at the hip until the very end.