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I Am Broken: Life With Chronic Illness

I have Juvenile Idiopathic Arthritis.
I am severely anemic.

I am broken.

And yeah, maybe I shouldn’t think that way about myself but it has taken me 10 long years to be able to say those words aloud to myself and I have fought to proclaim those three words. I believe I have earned the right to speak about my pain. I wish I could be optimistic all the time and actually believe the things that I and others tell me when we say:

“It’ll get easier”.

“It won’t always be this way”.

“Just hang in there!”

No.

I am broken. I have an incurable disease ravaging my body and it has only gotten worse since I have started college and on Monday, I could barely get out of bed and almost passed out just going up a flight of stairs.

A couple of days ago, my boyfriend broke up with me and as much as that hurts, it in no way compares to the pain and turmoil I have felt in not only these past two months but these past 10 years. And it wasn’t until I started talking about all of this with my…I guess as of now ex-boyfriend, that I realized I had been trying to live as though my arthritis wasn’t a problem and I have spent most of my life trying to minimize that pain because I didn’t want my parents and friends to worry.

But now, I am ready, to be honest about my struggles, to speak up when I am in pain or having a horrible day. Even though I have not been officially diagnosed, I also show all the signs of having depression. There have been many days when I have wanted to die because certainly death was better than living in constant pain. And when I am having a flare up, I never want to eat. I have to force food down my throat and force myself out of bed because the physical and mental anguish is too unbearable. For so long I have hated my body. Not out of insecurity or because I hate how I look, but because of all the pain it has caused me.

When I am not in pain, I feel mostly empty. I am learning to do things that add meaning to my life and to be around people who encourage me and are there for me as much as I try to be there for them and everything I have created here on the Internet has helped me get better, but when I flare-up, I have tunnel vision. My future feels like it’s been snatched out of my hands, never to be returned. A lot of the time I feel trapped within my own body. It controls how much I can do each day and how much I can participate in my own life and that is something that I am still learning to accept. I hate limitations and I try so hard to fix everything so I can avoid thinking about the one thing I can’t ever fix.

Me.

Chronic pain is so hard to describe. When my Celiac Disease was a lot worse and when I was still unaware that I was allergic to gluten , I would get an intense pain in my gut. The best way I could ever describe it was that it felt like someone had taken a rusty, dull blade and not only stabbed me in the gut but then continued to twist the blade around until I could hardly breathe or cope with the pain. I would just be out, shopping with my parents or playing at the park or at church and then it would hit me and I would have to pull away from whatever I was doing and go to the bathroom and would be there in the stall trying to remember how to breathe so I wouldn’t scream.

Arthritis isn’t a stabbing pain. It’s more like lack of movement. Everything aches but it’s a deep down kind of ache, the kind that never leaves. There is no getting better. There are just varying degrees of stiffness and sometimes sharp pain. It is like being hit by a bus and still being expected to get up and walk around like everything is fine. It is that feeling when something is really high up on a shelf and you keep on straining and pushing yourself to just reach, but you can’t quite make it. Then you jump and try to convince yourself that if you try again, you’ll be able to grab the thing off the shelf. But you can never grab that thing off the shelf, you can just look up at it and come to terms with the fact that your arm is not 3 inches longer and never will be.

I have finally reached a point in my life where I readily bring up my arthritis. I have spent most of my life hiding the fact that I have JIA because I didn’t want to face the questions and the pity. But most of all, I didn’t want to face the fact that I am broken.

People keep on telling me what an inspiration I am and how incredibly strong I am and I want to believe them but when I am laying in bed trying to find reasons to get up in the morning or on all those nights as a child when I cried myself to sleep, I don’t feel strong. I fell lonely and shattered beyond repair. I feel as though all the pain in the universe is condensed into my fragile body and all it would take is a word or a touch to fracture me irreparably. And maybe strength isn’t being invincible, but admitting that you are not.

Living with chronic pain is beyond difficult because you are not living. Mostly it is fighting to survive each and every day. It is like being thrown into a sword fight without a sword and you do what you can to fight back but mostly you are just trying not to die and to surrender to the opponents sword because it reaches a point where getting killed is easier and less painful than continuing to fight.

Living with a chronic illness is waiting rooms and endless questions from doctors. It is needles and examination rooms that smell like rubbing alcohol. It is sleepless nights and loneliness.  It is having people look at you but not seeing you. It is knowing that even if people are there for you, they won’t ever be able to understand what it is like to be you. They will never know how many times they have been lied to when you said “I am fine” instead of:

” I feel like dying and I am not sure if I can make it through today, much less the rest of my life but if I tell you all of this then I’ll have to face the sympathy in your eyes  and have you ask what you can do to make me feel better when there is nothing you can do and we both know it and if I tell you all of this, I will just go away feeling like a burden to everyone in my life and I can’t help but feel responsible for that. So don’t ask me if I am okay because I will never be okay. I am trying my best but I feel my life slipping away. So let me say “I am fine” because I am still fighting even though sometimes I can’t remember why”

I am also a self-saboteur. I have always struggled to take my medications because I didn’t want to face what is wrong with me. Before my relapse on March 9th, 2014, I had been eating gluten consistently for a year and that is why I fell out of remission and I have had active arthritis ever since that day and it is all my fault. I just wish I didn’t have arthritis. I hate it. And I hate myself for not taking better care of my body. I know I should have been doing more to get better and need to continue with taking my medication consistently and the only reason I have for not doing so all these years is that I didn’t want to accept that I have a problem. That I am broken.

I wish I had an optimistic conclusion to this but I don’t because the world is not a wish-granting factory. All I can say that if you are living with chronic illness, I understand what you are going through and I would love to hear your story. Be honest about your pain and don’t minimize it like I have been doing. I cannot remember what it is like to not be in pain but on my bad days, I can remember what it feels like to be alive, and all the people who are rooting for me and that is what keeps me going.

So yeah, I am broken.

But I am also strong.

 I Am Human

I walk with a spring in my step
So you can’t see me limp
I smile with tears in my eyes
But you can’t hear me crying
I am broken but

I

am

human

Someday I will rise up
Out of the pit I’ve been in
And I shall be magnificent
Are these just lies I tell myself?
To reach the other side
Where I live without

pain,

fear,

strife?

I am crumbling but

I am

being

rebuilt

Day by day I am broken but made whole
And one day, (or so I tell myself)
I will rise up above the skyline
And in ruins shall lay the old me
Right now I’m in construction
The old living with the new
Because it is human to break
It is human to crumble
It is human to build and rebuild
I am not invincible
I am afraid sometimes of my own voice
But the building blocks of the universe exist in my bones
I am human
And someday
(though it seems far off)
I will be made whole.

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30 Things I Love About Being Alive

It has been awhile since I have made a long list. Actually, I think the last one I wrote for this blog was “10 Weird Things About Me”. I just don’t want to forget all the beautiful reasons for living and all the things I love so here goes nothing!

  1. Sunday afternoons
  2. The way the night sky looks in winter/summer
  3. Sleeping at Last’ songs. All of them.
  4. late-night conversations
  5. laughing so hard that it hurts
  6. making art
  7. writing
  8. road trips
  9. good books
  10. understanding complex things
  11. exploring new places
  12. and rediscovering old ones
  13. the smell of autumn
  14. the warm sun on my face after a long winter
  15. libraries
  16. learning something new
  17. a cup of peppermint tea
  18. wild blackberries warmed by the sun
  19. being able to help people
  20. smiling without caring how crooked my smile is
  21. listening to stories
  22. thunderstorms
  23. finding beauty in the simple things
  24. and understanding the complex
  25. Chinese food
  26.  bad puns
  27. changing my mind
  28. movies that add meaning to my life
  29. comfortable silence
  30. making lists

 

What do like most about being alive?

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Complexity

I am not sure where to begin. I almost wish I could hook my mind up to my computer and download my thoughts but

a.) That would be really weird.

b.) It is also not possible.

c.)That’s also kinda gross.

d.) Thoughts and wave patterns are too complex to capture with technology

e.) I am not fully aware of my thoughts so it would come out as cgdffgidhehqiqgwt1w (or some other equivalent.)

I’m also not sure why I just used letters instead of numbers…..weird.

So I’ve been thinking a lot lately about complexity and how I wish I had better depth perception. Like how cool it would be if I could look at a person and understand the level of their complexity instead of telling myself things like “No one understands what it’s like to be me!” and other nonsense like that. It seems to be so simple to write people off as being 1D. Like what you see is what you get because if we look at someone and see their complexities, then we’d have to address those same complexities within ourselves and accept that we can’t sum up people in mere sentences and confine them to being simple beings incapable of understanding us.

I’m also marveling at the fact that we are able to think thoughts in an infinite and complex multi-dimensional mind and command our fingers to press on buttons with little symbols as a feeble attempt to momentarily grasp a fragment of this complexity to share with others. Is that cool or what?!

And I keep on frantically trying to grasp onto bits of my mind and soul by momentarily capturing bits and pressing them into poems and blog posts and late night 2 am conversations and still I have yet to swim deep enough into the depths of my soul. And maybe I do all of this because I want to matter. I want to be remembered. I want bits of my soul to fly away and land in the hearts of others and to have people read my words and say aloud to the universe that “Yes. I understand. For a fleeting moment, one soul managed to burrow a bit of herself in the lines of a poem and I understand myself better because of it. I and bits of the world are better just because this person exists.”

And I am frustrated because I am but one. A speck of dust caught up in a whirlwind, unaware of how fast I am spinning, and being flung from one life event to the next with no control or sense of direction. I feel like I am a universe living as a human being for a little while.

I wish I had the ability to time travel. To skip about time, just as one would skip a rock across a pond. I wouldn’t change anything. I would just watch. And listen. To perceive all the little bits of humanity before they disappear forever.

A few weeks ago, I visited an antique store in my town And pushed into a corner was an old photo album. There were pictures of a little boy, playing on the banks of a beach. They were taken in the early 1920s. Almost a hundred years ago. And as I picked up the album, some old letters fell out. They were dated  1920 and 1922. The first was a letter announcing the engagement of a young woman named Ruth. There was also a picture of her and she was lovely. She must have been only 19? 20? And then I opened the second letter…it was written by an older woman who had known Ruth as a girl. It was addressed to Ruth’s husband. It said:

(roughly paraphrasing this..)

Dear Willam,

“I am so sorry to hear about the passing of our dear Ruth and I must offer my condolences. Ruth was such a lively soul, full of grace and wisdom well beyond her years. She will surely be missed. It is truly unfortunate that she will not be able to pass on her legacy and wisdom to your son. It seems so unfair that someone so great must die so young but surely God has a plan…”

And it went on and on about how beautiful and precious was the life of Ruth and I couldn’t help but cry. Everyone who ever knew and loved her is long dead and the only person alive to remember her is me. The life of Ruth spanned the bridge of time to me, in 2016 who stood in a musty store shedding tears for the long dead.

I don’t want my life to be reduced to a couple of old pictures and letters from a time long forgotten. Ruth was a complex human being who was constrained by time and hers ran out so soon. Too soon. And I don’t know why these things happen and I felt and understood the anguish of Ruth’s husband and friend as they tried to grasp onto bits of their loved one before she disappeared forever into the unforgiving vortex of time. But now, I have immortalized her. Now, from  this day forward, the world will have evidence of her existence. She will not be forgotten and as long as there exists those to remember her.

So please do not let yourself be reduced to an old photo album and a couple of letters. You are a complex human being and it is okay if you have trouble grasping your complexity. Just don’t ignore the complexities of humanity as you try to fleetingly grasp onto yours. And please, remember Ruth. A lively soul like you who left this world far too soon. -Kate.

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Looking Forward: What’s Next

You know how in super hero movies, towards the end, there’s also some bit of voice over where the now recently realized hero talks about what’s next and how unexpected his heroes journey was? That’s how I feel right now. Like I’ve come to terms and processed everything that’s happened and now I’m dramatically gazing out unto a city from the top of a skyscraper, wondering what lovely and marvelous things are in my future. And I wish I could hit a pause button and capture who I am in this moment because it’s all about to change.

I remember one of the last times I felt this way. It was the summer between 9th and 10th grade and I was in Louisville, Kentucky, on the balcony of a hotel, gazing out at the horizon as the sun set over the Ohio River. And I was thinking about how everything was going to change and wondering who I’d be in the summer between 12th grade and college. Well, now I know. I’m a little more sure of myself. I know who I am, and now I have more courage to pursue what I want. I’m not sure where 14 year old me went, she slipped softly into the night as my voice grew stronger, braver than hers.

I swear a lifetime has passed since I was gazing out at that river and now it’s come full circle as I’m now left wondering how much I will change in the future. Lesson learned? There is no end to the marvelous things that can happen, if only we are open to change.

The future is uncertain, yes, but at least this time I have a clearer view of what I want and where I’m headed. In just a few days, (June 20th) I’ll be launching a second blog called ‘Philomath Maniac’ where I’ll be blogging about tips to study better, good sites to learn and learning resources/books I’ve enjoyed. I have pretty big plans for that blog so all of that is just the beginning. I also may have an opportunity to give a TED talk so that’s pretty exciting! I should be hearing back about that in a few days.

And last month, I came out with my first poetry book called “Like A Lotus”!
Basically life is a lot different from last year and it’s been hard to wrap my mind around it sometimes. I look forward to seeing what continues to happen and what the rest of this year holds. I’ll be moving to college on August 18th and it wasn’t until freshmen orientation last week that this fact fully sunk in. And the funny thing is, I’m not afraid anymore. I’m just excited. I kinda got to see my room. Well….more like I pressed my face up against the glass door and was able to see the door of my room… but it was still an exciting experience regardless!

As a teenager, naturally I’ve heard a lot about how being an adult sucks. But maybe like everything I’ve experienced thus far, it’s not completely good or bad…it’s just different, and all we can do is learn to be okay with that and learn to take life as it comes. And maybe the scariest thing about being an adult is the uncertainty, the lack of control in the parts of our life that we’re taught that we should have all figured out by 18. So truthfully, all I have are plans. I’m not sure what comes next. But I’m learning to be okay with that because life is life. It’s exciting, scary, and full of change. But to me, that’s what makes it so great.


 

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