A long, long time ago, I lived in a house of fear with great struggle and the wanting and willingness to believe.

Believe in the possibility of living without fear, without restraint, and without absence or a more affirming word, knowing.

Believe in “Donut.”

This is a story of two stories. One is tangible fear, and the other is invisible fear.

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Recently I traveled by car to a writing workshop near Woodstock, New York.

CF in real life when traveling:

Packing – tangible fear.

Enzymes about 40/day (give or take) with extra, just in case. I brought 400 – one never knows.

Mucomyst 2 vials/day with extra

Albuterol 2 vials/day with extra

Saline 1 vial/day with extra

One needle for mucomyst vial with one spare needle

Cayston 3 vials/day with 3 salines/day with extra

Neb cups 2

Cayston neb cups 2

Cayston machine

Extra batteries and charger for Cayston (the cord connection no longer works, and the insurance won’t replace it, so I have to use batteries. 4 AAs are good for only two weeks.)

Air compressor

Vest machine

Vest cord (one time, I brought my vest and left the cord at home. It’s medical grade. I couldn’t use my vest)

The vest!

The vest tubes

Trikafta and extra Trikafta

Vitamins (I forgot some of my daily vitamins this trip. I had to stop at Walgreens along the way and resupply. At least I realized before I got there).

Advair inhaler – it’s for my allergies and helps chronic obstructions in my lungs. It’s a great drug. I forgot to check the ticker! It ran out while I was there. I was a little SOB, and then I looked at the inhaler. It was empty. Check the ticker and bring extra!

Rescue inhaler – that worked as a temporary replacement.

Benadryl – never know.

Then the normal packing stuff, writing stuff, extra snacks, etc.

I know this is a long list. It’s a lot. When I pack, it is absolute concentration.

My friend Deb asked me on a trip last year, “Don’t you ever get sick of bringing so much stuff?”

Big sigh.

Oh well.

I am still here.

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I don’t fly with my vest. I’ve gotten my hand slapped for not doing so, but I still don’t. I fly with my percussion, use a treadmill, or jump around and do exercises. I take my chances.

I have a limit.

You have to push your limits. You do what you can and a little more, and a little more.

You plan you pack well, you pack extra well.

You push that steel wall of what you can and cannot do and make it malleable to what you want to do.

It isn’t always possible, but you try.

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Growing up, except for the novel trip to Disneyland, we traveled within a tight radius. We never ventured past Wisconsin in case I got sick.

My brother went to Canada for a music competition. Me, oh no. I was to stay right there at home, close.

Today, when I fly out of the country or take a longer trip, my hands shake from anxiety. I fear I may forget something (I have) or something will go wrong (it has as well).

There are so many intricate items to remember, even when I check my list two or three times: a needle, a battery charger, batteries, and a cord. I have had an air compressor die on a trip or my vest not pulsate.

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If I have learned anything in this life, you push, and you push some more.  

You believe in the possibility of living without fear, without restraint, and without absence.

You believe in knowing what you can do, what you have done.

Otherwise, you really haven’t lived.

Edit:

You allowed your condition to live for you.

Believe in “Donut.”

Believe in you.

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Part two – next time.

Many blessings to you and to you and to you.