Dear friends,

Thanks for reading this blog again. I hope the heavy rains of Northern California are treating you well and you are staying healthy. Tomorrow I head to Colorado for a Byrnes Family Reunion. I’m excited to see my niece, her parents and my in-laws. I’m not sure I’m ready for snow and freezing temperatures, but it will be nice to spend time together.

On Wednesday, Ana and I spoke for the Menlo Park Rotary Club, thanks to our friend Robin’s friend Tim Leary.  I’m always a bit nervous to speak to an audience that has no health connection, because I don’t know how relevant our message will be. Most of the people in the audience were a good generation or two older, and involved in business. But lo and behold, this warm group welcomed us and listened attentively about our story with CF and transplant. I think there’s always something in what we say that people can relate to, even if they are not personally touched by these issues. I have to quote our new friend here:

“I love Joseph Campbell’s recounting of the hero’s journey–the warrior (man or woman) who leaves the tribe, wanders in the jungle to eventually find “the magic” and with the new magic is able to slay the dragon. But what makes a hero is not just slaying the dragon. It is returning to the tribe to share the magic with others and make the world a better place.

When I think of a hero I think of Anabel and Isabel. You have battled illness ( and continue to struggle) but you are carrying the message and the magic of transplantation beyond yourselves, and to the world for the benefit of all those who suffer ill health. What a noble cause and what wonderful lives of service, in the face of severe adversity, you have chosen.”

I blush with the praise; I don’t think we are doing anything heroic here, perhaps because we know so many more heroic people who’ve struggled with much more than we have. But I do think the only strength we’ve shown is not being afraid to open up and tell our stories truthfully. And seeing that our lives are not our own; we belong to everybody who has helped us and vice versa. So we are ‘paying it forward’ in hopes others will benefit if we speak up.

Speaking of heroes, this week I met with Michelle Compton, a dear friend of 13 years. She has been my role model and mentor, as she is 12 years post-transplant for CF. Once again I could just stare at Michelle for hours, gazing to the point of it being freaky, because my love for her is so strong.  And I was reminded of three words, “We’re still here.”

Michelle created an amazing unique artistic project called “The Breathing Room”, where she collects photos and poems of people living with CF.  See www.thebreathingroom.org.  In just a picture, and perhaps a few words, adults with CF are able to convey their truest feelings and experiences with CF. This summer, Michelle and several other CF adults created a photo image together. I’m so excited, because it’s a one-of-a-kind shot, called “Lucky Seven”. It will soon be debuted, as will another one of mine. I’m just tweaking the poetry; a writer is never satisfied.

Speaking of which, I was browsing the Breathing Room website and found the poem below. I thought I’d post it, to mark its 6th year anniversary.  It is a testament to the power of the mind in controlling the happiness of the heart and soul. I wrote it on January 18, 2004, five days before being listed for a transplant. I was physically pretty miserable, but found solace in a mental escape.  I am actually grateful that my struggle with illness invited me to look inside to find a better place in the mind.

Anyway, I’ll cut this entry short so you can read the post, if interested. Have a wonderful weekend, as we hit the high altitude Rocky Mountains. Who would’ve thought , after getting listed for a transplant on 1/23/04, that I’d be able to so easily breathe six years later? Praise God!

Thanks for your care and interest, Isa

—-

Mental Travels

By Isabel Stenzel Byrnes

1/18/04

In my hospital room I am staring at the ceiling at night.

Two weeks here is enough and I yearn for the outside world.

Lonely but surrounded by people,

Free of responsibility but imprisoned,

In my fear I seek refuge.

My mind is my solace and I travel far far away from this place.

In the dark I hear the loud bubbling of my oxygen humidifier

And I embark on a captivating deep sea journey

Where I am scuba diving, looking for mermaids and bottom dwelling creatures

Colorful fish tickle my feet as I glide past them going deeper and deeper

The pressure of the deep water squeezes my chest

So I breathe quickly and heavily while tethered to my gear

And I gasp for air as I swim to the surface.

I open my eyes and am surrounded by metal and hard, artificial surfaces

There are no organic smells nor any life around

I hear the buzzing of machines and pipes in the walls

And I realize I am in a space ship

Traveling the galaxy for thousand of miles from my homeland Earth

The black box above my head is blank

“Houston, can you read me?”

I mutter with no response.

I am floating, disconnected from everything.

My bed is my command station with lights that blink and buttons that change my position

Finally I push the red one and hear from the Mother Ship, “Can I help you?”

And through the closed blinds at the window I see a bright light

I think it’s a star I must be approaching

The stars are brilliant from this vantage point

Then I remember it’s just another passenger in her spaceship across the wing with her lights on.

I open my eyes to a bright light overhead, the kind I saw once when my body almost left this world.

Its brilliance invited me to a safe place of comfort and peace

And I follow it with wonder.

Soon I am surrounded by this light

And I see Jesus and he comforts me and we smile at each other.

He reaches for me and lays his gentle hands on my chest

I feel tremendous warmth and healing

He says it will be okay.

I blink and I see him and it’s Charles, my wonderful respiratory therapist

And he’s laughing and I’m laughing and he’s laying his hands on me

I feel his healing.

My reality and fantasy are blended.

In my fantasy there is fear and loneliness.

In my reality there is goodness and refuge.

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