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Bring Anyone Who Wants to Say Goodbye

An invisible illness is one where people can’t see it. In this instance I’m not talking about mental illnesses - although they are very real for some people - I’m talking about a physical illness that is invisible. You may be curious as to how something can be both physical and invisible, but the truth is many people with life threatening, chronic diseases do not even look sick. Such as myself, if I want to look “normal” I can do so with very little effort. I may look tired or you may notice I breathe heavily if you look closely, but beyond that I don’t look very sick. Which is great in many ways, for example, I could hide part of myself from the world if I wanted to.. and for some time I did just that. Until everything changed.

- - -

I kept nodding off. Intermittently I could see the doctor pacing back and forth in front of my bed, my room was dark aside from many machine screens glowing and the light from the hallway. So basically it wasn’t dark at all, but it wasn’t bright either. He was a steady shadow, when striding left his face was illuminated by the light from the hallway, then shrouded in darkness as he turned back. He was talking on the phone and I knew he was talking to someone very important. I knew he was talking about something very important, something very serious, but I couldn't recall what. My memories were in and out, just flashes of pictures creating this very primitive slide show in my mind. Flash, he’s left and illuminated. Flash, he’s right and I can no longer see his face. Flash, he is looking at his phone frowning. Flash, he’s talking to me.

Damn! He is talking to me, what is he saying? I squeezed my eyes shut trying to make sense of everything. Wait a minute, something had happened to me. Something bad had happened to me, but what was it? I could see images but they fluttered around in my head loosely not in any order. I could hear audio but it didn’t match the images. Nothing was making sense.

Wait those are inside my head, memories! …but what is he saying right now? Flash, his head is tilted to the side and he looks concerned. Why can’t I hear him? Oh ya, that’s right.. I can hear too. Click!

Just like that my hearing was back, I was processing the input around me. The machines steady beeping, the oxygen tube’s gentle whistling, the constant humming of the machines. They were accompanied by the more distant sounds from the hall; sneakers squeaking, nurses talking, an ice machine rumbling. Then there was the direct voice of the doctor. All of those noises assaulted me at the same time. It was like how light illuminates a dark room, you just flip the switch. I could hear noises again, as if some switch had been flipped in my mind.

“Your mother is on the first flight out from North Dakota, is there anybody else you would like me to call?” My vision and sound didn’t match, I knew what he had asked now moments ago and while he stood there waiting for an answer, my mind was playing catch up. I sat up shakily. “What?” I asked. I heard what he had said but it didn’t make sense. My mother is coming to see me, on the first flight? Why? Where even am I?

I kept flashing images through my head with the sounds zooming quickly by. My mind had organized the pictures and I was ready to sift through the moments I had strung together to make a movie. A movie? No, this was my life. This was my reality. Think, Whitney. God, damnit. What is going on?! Flash, flash.. wait. Back up. I found it. Play.

The light was darker here. There were many people surrounding my bed, blocking the light and stopping most of it from reaching me. Everyone’s energy felt so frazzled, so stressed, so nervous. I felt panicked…Wait, sound! “She’s not going to make it, she’s too sick. We need to call someone. We need to notify her next of kin.” What the hell is going on here?!!? It was just a memory.

Focus Whitney, you can do this. Stay awake, you have to remember. “My boyfriend, call and tell him. He will be worried sick.” I reached out for my phone on the bedside table. Wow, I am dizzy! I swayed and the doctor passed me my phone, I found the number and he took my phone back, putting it up to his ear. He went back to pacing. Ok, good.. now we’re back where we started and I can think. Left face illuminated, right face dark, left and bright.. Focus! I was in a hospital, they didn’t think I was going to make it, why? What was he saying, he might remind me of why I’m here. “Ya, I think you should get in the car now and head down if you're going to.”

Darkness. My head fell forward hitting my chest and waking me. No! Do NOT fall asleep! Focus! Left and bright. Right and dark. “If you want to see her alive, you should hurry.”



“Bring anyone who wants to say goodbye.”


Flash, the doctor set my phone down and said something. He sounded like a muppet to me. With a frown he turned and left my room. So it was finally happening? I was actually dying? I guess I had a good fight, a good run. Better than I should have, better than I was supposed to.

For the first time I thought it might really be the end. I had heard it for years, knew the odds, knew the statistics, knew the lifespan of someone with Cystic Fibrosis. However, I also knew things weren’t always as you first feared them to be, I always knew that if I fought hard and was stubborn enough, I would live as long as I wanted. I truly believed my whole life that I was in control of my body. For as long as I can remember I don’t remember feeling like my life was a death sentence. That I was only alive to die, I couldn’t comprehend that and I wouldn’t either. I wasn’t dense and I wasn’t particularly naive, I just knew that living was in my future. My whole life all I can remember is living, I don’t remember ever being particularly afraid to die. It just didn’t seem like something I needed to worry about. There were a few times my family or my doctors didn’t think I would get better, but I was never afraid those times either - frankly, I didn’t believe them. I knew I was going to live for a long time, I never gave myself another option. To be afraid to die is afraid to live, I chose life instead. I had always chose life instead.

I don’t care what they say, you are not dying. I’m not done with this body yet and we are staying here for a little longer, ok?

Darkness. My head fell to the side making my body tilt.

I jerked awake, snapping my head up. No, Whitney. You will NOT die tonight. Not in this strange place. Not surrounded by all these strange people. Not when your son still needs you. Not yet. Stay awake! It was all I could think to do, I knew I had to stay awake or it would be over.


#terminalillness #cysticfibrosis #chronicillness #determination #strength #nevergiveup #organdonor

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