Words, Words, Words

[somewherehereiam-blog]

Chronic illness forces us to be physically dependent on others while requiring exponentially more mental and emotional independence.

[somewherehereiam-blog]

Life is a game where no one knows the rules, but everyone is trying to win.

[somewherehereiam-blog]

Answer: Struggling.

Question: How are you?

[somewherehereiam-blog]

When you try to sing “Happy Birthday” to your dad, but can’t remember the words.

[somewherehereiam-blog]

Doctors, emotions, surgery in the morning. 

bitch, I get my port back.

[somewherehereiam-blog]

He said I dream too much, so I closed my eyes and went to sleep.

[somewherehereiam-blog]

My days feel stagnant, something needs a change. 

I write “something” like I don’t know exactly what that thing is, but I’m pretty sure I meant everything. 

[somewherehereiam-blog]

She isn’t here.       9.16.16

My dog died today. I was sitting in a hospital bed with 22 EEG electrodes glued to my scalp, and there was nothing I could do. I couldn’t even talk to her over the phone; it felt silly. Looking back, I guess I didn’t believe it was the end. I assumed she’d perk back up. After all, she couldn’t die without me there, right? 

A few hours later, my mom arrived at the hospital. She sat in the vinyl chair like she had the past few days. “Your dad has an appointment for her in a few hours,” her voice was calm. I don’t remember if we talked or sat largely in silence, but her phone rang in the early afternoon and silent tears slipped down her face. “She’s gone?” My voice was eerily composed. Mom nodded. None of it felt real until I went home. I got released from the hospital two days later, a restless, tired version of myself. My parents took me home with them so I could be supervised. We pulled up and there was no barking ball of furry ferocity in the window. Well, she hasn’t been barking lately, my brain rationalized. I intentionally took as long as possible to open the door dividing the family room and garage, knowing in my head she wouldn’t be on the other side. My heart hadn’t quite caught up, though. 

I made it all the way upstairs, my dad set my bags beside the bed. I was exhausted and needed to lie down, but first I had to look in my old bedroom for some pills that had been re-prescribed - no such luck, I’d have to wait until the pharmacy filled the new scripts. Next, I went into the spare bedroom to acquire a more comfortable pillow. Then, I found myself in the office... What the hell am I doing in here? My world came crashing down. I was looking for her - searching from room to room - just waiting to see her sprawled across the floor. When I realized I wasn’t going to find her, I broke down. My feet were

My eyes stung with tears as I realized what I was doing, and worse off, that I wasn’t going to find her. The heavy pillow was still in my arms and my feet felt heavy as I tried to walk back to my parents’ room where I was supposed to rest. My bags are in her spot. I moved them to an awkward location nearly in the middle of the floor. Then, I collapsed. She isn’t here.

[somewherehereiam-blog]

9.21.16

I barely want to type. The words are stuck in my chest all twisted in knots, trying desperately to cut off my air supply. Every forced breath feeds the ache in my chest. Who knew a day could be so horrible? Especially one that started so well.

My neurologist laughed, confident that I was fine. He told me I could drive. All my plans were set back into motion. I could see my whole future laid out before my very eyes. I came home and chatted with the fella, bubbling excitedly about going back to school, seeing his face, and taking a trip to California in December. 

The second doctor is where it all went wrong. She told me that it was in my hands to get accepted to NYU’s Dysautonomia Center - that I received a message through the patient portal more than a month ago informing me that cardiology had done everything they needed to do. I searched my brain, but just couldn’t remember. She showed me the message. So it was my fault I hadn’t gotten an appointment yet. My heart sank.  

Then, more news: I didn’t need my doctor to sign off on a new port. What? My mind was reeling. “I could have had my IV fluids back by now?” the words spilled from my brain, out my mouth, into the sterile exam room, and hung in the space between us. “Well, yes,” was her reply. My dad chimed in and asked if the surgeon could write the IV order as well. She asked who had written it before, assuming it must have been cardiology. I told her the tale that ended with my primary doctor ordering them but refusing to renew it. 

I watched it all click in her head, like seeing two cars collide slowly in time. She was seeing the heartbreaking puzzle I’d worked on day in and day out for seven years. I could have a semi-normal life if only insurances and doctors would cooperate and be willing to see my complex case outside the narrow scope of their everyday practice. 

[somewherehereiam-blog]

Today, I woke up in a daze, light dimmed by slatted shades poured through the window. What time is it? Who knows. I reach for you. Nothing. Only the air. You’re on the road, I’m here at home. I’ll see you soon.

[somewherehereiam-blog]

Okay, tomorrow.

I was absolutely shattered, tonight. The weight of the past month crushed me. I cried until I couldn’t, anymore, and then I searched the chronic illness tag. Another girl is fighting the same battle. We will be okay, tomorrow.

[somewherehereiam-blog]

Personal: 7/12/2016

Yesterday, the social worker sat down in front of me and told me that there were no preventative services to help me live on my own. "You must be at a nursing home level of care," she said. I probably growled, "That's where I'm trying NOT to end up," as shock, disbelief, and anger filled my soul. I couldn't control my face, and I can't even imagine what kind of look I gave her, but for the first time all visit, she sat silent.  After offering up a few "clearing house" websites that I should investigate, she asked if I was seeing a counselor, because that is the answer to every un-fixable problem in the medical field. I smiled politely and explained that I had seen an excellent one; but he threw me out because I couldn't make it to my appointments. Her eyes looked surprised, then she stammered, "Well, we don't even have one. Just for kids." The lack of resources, passion, and competent humans to help those between the ages of 18 and 60 is absolutely appalling. The majority of people have all kinds of suggestions and no intention of helping you accomplish them, even when it’s their job.

[somewherehereiam-blog]

Were we meant to control one another, we'd have been factory-made and issued with remote controls. Hint: guns =/= remotes.

[somewherehereiam-blog]

Is what you're saying more valuable than silence? Does your OPINION really need to be heard all the time? What could you learn if you truly stopped to see a situation through someone else's eyes? What does it actually cost you to be quiet? Do you know how hurtful your words can be in an already inflamed situation? Do you care? How often do you know what you're talking about anyway?

[somewherehereiam-blog]

As suddenly as it began, it ceases. First the lights, one by one. Next the noise, beginning to trickle away with the people, then hushing all at once, like a wall of silence. One has yet to pinpoint the sequence of events that topples the wall, but the incessant beeping, buzzing, and chatter has dulled. Even your insides seem to stop buzzing. Here we are, a hospital at night.

[somewherehereiam-blog]

Can we try not to judge others for how they’re coping with existence? We’re all living very public, very media-drenched lives and none of us were actually born into this.