It’s Not Their Journey To Make Sense Of

“Not everyone will understand your journey. That’s fine. It’s not their journey to make sense of. It’s yours.”

My life went to hell in August of 2012. It had been headed that way for years and years, but August 9th was the day that all was officially lost, with no hope of ever even returning to baseline…

And on that spiraling path to hell, I not only lost my family, my home, my belongings, many of my friends– I also lost my health. At a time in life where most were at prom, doing college tours, vacationing with family and friends, I became sicker and sicker with mysterious symptoms until I was completely disabled.

As time went on, I tried a multitude of medications, procedures, therapies and diets just to be met with more sickness, pain and fear.

I grieve who and what I once was. I used to be healthier and full of energy, able to eat whatever I wanted and do whatever I wanted. I was good in school. I volunteered. I dreamed big dreams and made strides toward making those dreams a reality. Despite a life of turmoil and inconsistency at home, I was able to push through and keep going. My friends remember me that way.

But now this body of mine is limited and thus my life is limited…

Every time life hands me a new limitation, I embark on the path of adapting to a new reality. Accepting new limitations throughout these years has been difficult for me and seems to be even more difficult for my parents.

I suppose I should not have been surprised that my peers and friends struggled with them too…

As I grew sicker, my friends became distant, one by one, until they eventually fell off the map altogether.

Their disappearance was due largely to my inability to keep up– physically, of course…but often mentally and emotionally, too, as life circumstances and the 24/7 nature of chronic illness wore me out so intensely…

I would often find myself feeling sad, guilty, even angry…and always very, very lonely.

Where were all those who I helped in their time of need? Those I had stayed up all night with, holding them as they cried? Those whose aid I rushed to at 3am, regardless of what was going on in my own life? Those who I defended, fought for, even lied for? Those whose children I cared for as my own while they tried to piece their own lives together?

It hurt for my friends to leave me and not support me through some of my darkest days, but I have slowly come to realize it’s really not about my limits but about their own.

We whose worlds are colored by chronic illness and disability are physically limited, but others are limited in their ability to understand and empathize.

At this point, the majority know I struggle with my health…my feeding tube and wheelchair use make it pretty obvious at times. However, when I am around others, I wear a mask I’ve perfected over the years: a smile, a laugh, a “pretty good, thanks, how are you?” I do my very best to hide the truth about the debilitating pain and discomfort I constantly endure. I do this for their sake, sure– but also because I have an EXTREMELY difficult time admitting things are not okay or that I need help (even to doctors and therapists). I am perpetually optimistic, at least outwardly. All of this to say, it is no surprise most have no idea the kind of impact chronic illness has on every part of my life and daily functioning.

Everyone has battles and struggles in this life, but for most, their difficulties do not reside in their bodies. They experience sickness and physical pain, sure– but not in the way we do. Pain is not their constant companion, always lurking in their shadow. They are unable to truly comprehend the realities of a life battling your own body, and therefore they easily dismiss it as an exaggeration, nuisance or simple idiosyncrasy.

I cannot help but feel annoyed, isolated or hurt by the gross lack of understanding at times…I am only human. But I have realized that it is not about me. It’s taken a long time to accept this, and many days I still struggle to…but I am finding strength in my fragility and lessons amidst my pain.

“Not everyone will understand your journey. That’s fine. It’s not their journey to make sense of. It’s yours.”

Keep fighting the good fight, guys.. ❤

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.. 🙂

“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 “it doesn’t hurt”s, 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?

I Excel In… (No Particular Order)

1.) Pretending to be happy

2.) Talking too much and too fast

3.) Smiling through pain that would cripple others

4.) Caring about and for others

5.) Over-analyzing like…everything

6.) Remembering things I should probably forget

7.) Forgetting things I should probably remember

8.) Isolating myself

9.) Staying up all night

10.) Navigating while blind (#MigraineProbs)

11.) Writing neatly

12.) Appreciating the beauty in the little things

13.) Mental math

14.) Holding back vomit while in public

15.) Adapting to my environment/life circumstances

16.) Making people think I’m crazy

17.) Getting concussions

18.) Swallowing my fears

19.) Getting overly-attached to people

20.) Learning and absorbing medical information

21.) Not texting or calling back for days on end

22.) Misplacing obligations

23.) Editing papers

24.) Losing everyone and everything I’ve ever loved…

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…”