I Can Still Make A Difference

In light of everything that has happened this semester, I’ve been working to come up with ways I can make a difference in this world without a college degree. Here are some ideas…

  • Become a guardian ad litem
  • Establish a restaurant that feeds the homeless
  • Foster to adopt medically fragile children & teens
  • Fundraise to pay for surgeries for children whose families cannot afford it
  • Get my CNA license
  • Help runaway teens reunite with their families or become independent/emancipated from them
  • Make my home into a shelter for homeless women & children
  • Publish book about life hacks for tubies– for tubies by tubies
  • Start a nonprofit organization like Chronic Lifestyle Understanding & Education (CLUE)
  • Start an orphanage or group home in conjunction with an animal shelter so each child can have a pet
  • Start support groups for chronically ill teenagers & young adults
  • Throw birthday parties for children in the hospital
  • Volunteer and/or work at a nursing home
  • Volunteer for Crisis Text Line
  • Work as a missionary

To be continued… ūüôā

Crying Is Not Weakness

It’s been exactly 5 years since I wrote this piece & posted it on my old blog. It’s crazy how this feels like ages ago & just yesterday all at the same time. I’m not quite where I want to be yet…but I have truly come so far.. ūüôā

“A few weeks ago, I went to the movies with my friends to see Extremely Loud and Incredibly Close. Everyone around me was bawling her eyes out, yet sitting there watching this heartbreaking movie, I could not shed a single tear. I, too, felt sad…I wanted to cry…but regardless of how my heart ached and my thoughts raced for the little boy, my face remained dry and stoic.
Too many times when things were crazy at my house and the tears would fall down my cheeks, my mom would scoff and say, “I’ll give you something to cry about,” or push me aside with a, “Why are YOU crying, you little bitch? I’M the victim!” I grew up afraid to cry. And not only was I fearful, but resentful. I was angry at the woman screaming in my face- I didn’t want to give her the satisfaction of seeing me break down. I didn’t wanna let her win. I didn’t wanna show weakness. I would do everything I could to act like her actions didn’t bother me. But too many ‚Äúit doesn‚Äôt hurt‚ÄĚs, and “it’s all good”s can really affect a person…

This may sound a little crazy, but one of my most treasured memories is the night I ran away, one of God’s angels (let’s call her R) and I were having a heart-to-heart on the bench in her meditation circle. I had just hung up with my dad…who was yelling and crying and who basically told me life as I know it was about to be over. And of all of the beautiful, wonderful, comforting, inspirational things R said to me that weekend, one that sticks out most in my mind was when she put her hand on my knee that cold night on the bench and said, “Please let yourself cry.”

Please let yourself cry? Please let yourself cry! It finally hit me. I am only human! I am allowed to have emotions…I am allowed to cry. And so I did. I sobbed and sobbed into her shoulder until it was so dark outside we couldn’t see a foot in front of us. And you know what? As broken as my heart was and as embarrassing as it was to have trails of mascara running down my splotchy face, it felt good. It felt really good.

Do you, too, have trouble allowing yourself to cry? Has “crying is weakness” been drilled into your head one time too many? Well, guess what…whoever told you that was wrong. Crying is a sign of humanity, and regardless of what you are told or how you are treated, you have a right to express your feelings just as any other human would. Honest tears cleanse your heart and soul and relieve tension.¬†And crying is certainly not a sign of weakness. Someone really special to me once explained it like this: Nature gave us two ways of showing our emotions, laughter and crying. Crying is not a sign of weakness just as laughter is not a sign of strength.

So, grab the tissue box and let yourself break down once and while…you’re allowed… ‚̧

With Love,
xLiveOutLoudx”

(February 2012)

1 Year

It’s been 1 year since I got kicked out of my parents’ house. ¬†This year has been a wild roller coaster of ups and downs (more downs than ups, if we’re being honest here)…but I have grown so much. ¬†Getting kicked out was hard…and being guilt-tripped and begged to come back was even harder…but I made it. ¬†I didn’t give in and didn’t turn back. ¬†And now my relationship with my parents is better than it has been in years. ¬†Things were really rough for a while, but we’re¬†all 1 year stronger. ¬†Who would have guessed?

Ode To My Feeding Tube

Oh, my dangling companion

Precious link to my jejunum

Once enemies, now my closest confidant

Inseparable team

How I appreciate your friendship

Your quirks, clogs, spills and drips–

I’ve grown to love them all

Tube that makes me normal,

Tube that sets me apart.

Sustainer of life, my ticket to the future

Proudly protruding from my abdomen

Durable through the constant tug-of-war

Between inside and outside

Illness and wellness

Life and death

Warrior, bypassing paralyzed organs

Knight in plastic armour

Surpassing the traitors within

Reminder of a winding journey of ups and downs

Pain and triumph

Sign of strength yet revealer of weakness

Thank you for your service, you beautiful little paradox

(Written for ENG 289…lol)

My New Ride

In May, I was blessed to receive a power chair to aid with mobility. It is red and black (Go Pack!) and actually really cool. ¬†I’ll admit, I’m still not 100% comfortable being seen using it. ¬†Yes, I know that seems a bit shallow. ¬†It’s really not that I care about what people think of me or my disability– ¬†I am not ashamed to use it around campus or in class or downtown. ¬†I am, however, a bit embarrassed to use it on the always-crowded bus. ¬†There, I take up a full row of seats and, because of me, people must stand. ¬†I just feel guilty- as if I’m a burden. ¬†Not sure how to solve that. ¬†Anyway, here’s a little look at my new ride. ūüôā

Out Of Surgery!

IMG_2858

Officially a tubie! ¬†Started feeds a couple hours ago. ¬†Hard to describe what I’m feeling right now…this is certainly a transition. ¬†Surgery itself went well, but we have run into quite a few complications post-op. ¬†Will try to update later when I am not so sick.

Giving In Is Not Giving Up

This week I got my first ever wheelchair. ¬†We found it on Craigslist and it just so happened to be the perfect fit for me. ¬†Years ago, if someone suggested I’d need a wheelchair, I would have laughed. ¬†But now? ¬†It’s become reality. ¬†One of the major challenges of having Dysautonomia is that I never know when I barrage of unpleasant symptoms will hit me. ¬†I might think I’m okay, then a second later find myself lying on the ground. ¬†My blood pressure tanks and I faint, often without warning. ¬†Sometimes my legs are too wobbly to walk or I lose feeling altogether. ¬†Even on ‘good days,’ I can only walk so far before I am overcome with crippling fatigue and pain. ¬†As you can probably imagine, this makes going out in the ‘real world’ and doing ‘normal’ things pretty difficult…

My mother tells me that I shouldn’t accept this as my reality…that if I own it, I will never escape. ¬†At first, I really dwelled on her words…but now I can boldly say I disagree. ¬†Honestly, my using a wheelchair has been harder for others than it has been for me. ¬†People either pity me or feel uncomfortable seeing me using it. ¬†I wish I could tell people not to feel that way…I mean, I do not feel sad about it or feel sorry for myself. ¬†It’s a pretty easy transition, and has actually allowed for a better quality of life. ¬†I understand where my mother is coming from: to some, it may appear to be a step backward. ¬†But it is quite the contrary. ¬†It’s a step forward- an opportunity to regain some control over my life.

I am constantly embracing new realities and trying to adapt to them the best I can. ¬†I am learning how to continue living and thriving despite unfortunate circumstances. ¬†The past few weeks, I’ve learned that “giving in” is NOT giving up. ¬†Accepting new ways of life is not losing control…it is gaining it. ¬†Whether it’s standing, sitting, walking or rolling– I plan to live my life to the fullest.

New And Different, But Just As Beautiful

“I can really relate to your journey and having to let go of the person that you used to be. Something that has helped me is the idea of having a beautiful china vase on your mantelpiece. You accidentally knock it off, and it shatters into hundreds of pieces. You can either try to piece the vase back together, leaving it cracked and fragile, or you can use the bits of china to create a beautiful mosaic- new and different, but just as beautiful…”