Rest In Peace

As the morning light peeks through the window and you stir into consciousness, sometimes for a fleeting second, you forget.

But you are jerked back into reality as your heart begins to pound– head spinning, choking back acid, muscles aching, nerves burning.

Most days, you lie there for a while, trying to breathe through the pain and gather enough strength to go on about your morning routine.

But a big part of you wonders why you bother to get up at all.

You drag yourself from bed to fight the same battles each day. No end in sight, simply running on a treadmill uphill, hoping to maintain an unfortunate baseline.

It all just becomes so, so very tiresome.

Your physical health continues to deteriorate as your spirit is crushed under the weight of a crumbling sense of self.

You know there are people you would let down if you were to leave. There are those who would suffer if you were to suddenly cease to exist.

So you press on, trying to ignore the fact that you’re trapped– fake smile, one foot in front of the other.

As time passes, your increasing inability to keep up with the world pulls you deeper and deeper into the pit of isolation.

People grow up, get married, move away, retire, or simply forget your existence completely.

You watch as everyone you love fades away.

As night falls and you are left alone with your thoughts, your chest aches with the thought of how alone you have become.

You feel the sting of being unwanted, unneeded, outgrown, forgotten, abandoned.

But as the night turns to dawn, you realize there is no one left to let down. Or at least, there is no one who would have life ripped out from under them if you were to no longer be.

Your body is broken– your very being exhausted and worn– but you close your eyes and let out a sigh of relief.

Tears gilde down your cheeks and a smile slowly creeps across your face as you realize you may finally rest in peace.

 

[Just some musings from a brain and body currently consumed by painsomnia. No worries– I’m not going anywhere anytime soon. Keep fighting, guys.. ❤ ]

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Spoonie Party!

I had the BEST time with these lovely ladies today!  I cannot even begin to express how needed this get-together was…not just for me, but for all of us.  Spending time with people who truly get it– talking, laughing, commiserating, joking, and just BEING, no strings attached– is truly the best medicine.  No one flinched when someone whipped out a nebulizer or strapped on a neck brace or flushed their port or tripped over their tubing. Laughing, we raced up to help each other (usually just adding to the chaos…lol, but the thought was there).  It was the first time in a long time I felt genuinely happy.. ❤

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… 🙂

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.. ❤

To Mask Or Not To Mask?

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Just a casual “allergic to life” selfie. I had to wear my Vogmask today because the landscapers were spraying the campus grass with pesticides and the painters were finishing the walls in Dabney. I really should wear my mask more, (especially because it really does help in preventing anaphylaxis), but my pride often gets in the way. Maybe I’ll invest in some cuter ones in the future, we’ll see…but for now, off to chem lab.. 🙂

A Letter From A Doctor To Those With Chronic Diseases

But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.

You scare doctors.

Read more: http://www.degosdisease.com/patients/stories/letter-doctor-those-chronic-diseases-read-it-its-so-valuable

I truly appreciate this doctor’s honesty.  See next how my spoonie sister Catherine Richardson responds!

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)

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…