Scared isn’t even the word for whatever I’m experiencing right now

Scared is the word you use watching a horror movie. Or the emotion you feel right before you realize it’s all a prank.

I’ve lived most of my life in isolation. Having a serious immune deficiency, it doesn’t take a rock scientist to put together people = germs therefore the fewer people in your life the fewer germs, making isolation a higher chance of survival.

I was doing okay for awhile…I’ve been literally preparing for this moment my entire life. Once upon a time ago I was even making a movie about the 1918 flu virus for fuck’s sake.

I got this, I’m ready.

When people were rushing to the stores to ’stock up’, I’m already there. Having lived in the ‘gotta be ready for the apocalypse at all times’ for the majority of my adult life, I’ve always had 3+ months supply of medications and food and whatever on hand — including an industrial sized extra freezer — in my apartment!

I’ve been so prepared for this, I’ve even had a few weeks of extra dog food the moment I got a puppy. She got automatically godfathered into the apocalyptic preparations entrenched into ‘Tara’s World’.

So I was doing okay…”I got this, I always knew this could happen, I’m ready—“

Then Kenny Rogers died.

Kenny Rogers. The Gambler. One of my father’s heros. Same father who passed on to me whatever to be named in one future century immune deficiency that we have.

And I started bawling. And bawling. And I didn’t even know why I was bawling so much. So many people have helped me stay alive — so many, impossible to name them all — some of these people have had staring roles in the life of Tara, and others have made cameo appearances but without their brief appearance into the life of Tara, the life of Tara would have ended without their contribution.

And now I have a sore throat.

A really bad sore throat.

So now I’m scared, ‘am I going to die from this?’

Then I was bawling because I thought I could really die for this, then I started bawling because I’m so fucking grateful to be alive right now to die from this. If hadn’t been for so many people who helped me, I never would have made it this far.

So I put on the Gambler. Burning a few hearing cells in my ears along the way.

And boom!

Noah opened the door to the living room,

“MOM!! What are you mumbling about??”


I spun around, scissors in hand from cleaning up boxes.

“Mom, what language were you speaking?”

Half in a daze, I looked at Noah, “you could hear me? I didn’t even know I was talking aloud. I was listening to this song the Gambler and cutting up these boxes and—“

“Why are you cutting boxes at 1 in the morning?”

Noah was now starting to wake up completely.

“I’m sorry I woke you. I’m just scared Noah. I’m grateful and I’m scared. And you need to hear this song, Grandpa Bill loved this song, here, listen to it.”

And I started playing it on speaker.

Unimpressed, Noah shook his head,

“Mom, what is going on.”

So I told Noah about my sore throat…and how scared I was…and how I remembered I had been prescribed the malaria drug from a rheumatologist once a few years ago but didn’t take it, and now I’m upset I can’t find the prescription.

And like a good doctor, Noah says calmly,

“You need to focus on what you can do right now that’s constructive and can help you and not worry about ‘what if’ this and ‘what if’ that. Drink some hot tea with honey and lemon, and if you’re really convinced this medication may help you, call one of your doctors in the morning. You’re not going to call them now at 1 in the morning, so worrying about it now won’t help you so drink the tea.”

I stood there for a moment, staring at how absolutely brilliant and kind son I have, wishing to hug him but knowing I needed to keep a safe distance.

“And please put the scissors down and stop cutting up boxes. The boxes can wait. Especially if you think you’re getting sick, lay down and drink some tea.”

I mumbled something about ’what if I died and left you a big mess’,

“Mom, if you’re doing to die I can think of a lot more important things to do than to cut up boxes.”

Damn it he’s right.

“Drink the tea.”

So I went into the kitchen, made myself some tea while Noah waited in the distance. Once the tea was finished and he saw I was actually drinking it, then he turned around and went to bed.

My throat hurts really bad.

I can’t even remember the name of the rheum doctor who ordered the malaria drug. I remember he was a young doctor who seemed genuinely interested in my case, I just wasn’t interested in taking a malaria drug with potentially bad side effects so I never went back to see him again.

Now I want to take it.


I’ve seen so many doctors you’d think I would have developed some kind of organizational system to keep track. Maybe there’s been too many to keep track.

Damn it.

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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