Recent Entries
Living Past the Expiration Date
Testing, Testing
I Am Not Immune To Cancer
Authorizations, Appeals, and Insurance Claims… Oh My!
Help Me Help You
The Terrible, Horrible, No Good, Very Bad Day
How I Melt Stress Away
Fast Recovery
It’s Not Always About the Cure
But I Drink Kale.
Search

Disclaimer

The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

Lost Horizon, Part 1

May 10

Posted by: ACHA
5/10/2013 9:11 AM  RssIcon

By Stephie Goldfish

Stories are told by my mom and older siblings that happened in the distant past—stories my twin sister and I were too young to remember, but are not lost. They are etched in memory, and are still fresh and vivid as yesterday.

One story is imprinted on my mind, like my infamous abnormal EKG, which will never read normal, unless I receive a combined heart and lung transplant.

The story:

***

My twin sister and I were only three months old when we all moved out to Southern California.

Our mom, stepdad, three older siblings, and us two small babies traveled by car out towards the horizon that never ends. It took five days to drive from West Virginia to California.

When we got to Albuquerque, New Mexico, our car broke down, so we got a hotel and waited for the repair.

In the hotel room, I started crying, vehemently—I stopped breathing, and I turned blue and black. My mom says it looked like I shriveled up, because my hands curled under. She thought I was dying.

An ambulance was called and they took me to an urgent care facility, but by that time I was back to normal, and the doctors just said I had colic.

***

Later, when we discovered my CHD at age 17, we told this story to my doctors, and they said there would have been low oxygen levels, not only because of my CHD, but also due to the high elevation in Albuquerque, which may have contributed to the incident.

My mom said a similar episode happened two months later in California. I imagine she felt helpless, not being able to do anything, not knowing the whys.

I know I'd feel helpless, too, and worried, if I had children and couldn't ease the cries and pains of my babies.

When I think back on this story and what happened to me there in New Mexico, I've always thought how I'd like to pick that crying baby up and cradle her in my arms and help the pain go away, get her warm, and just soothe her.

Over the past few years, the mother-in-me has had this urge to go back to that "place" and pick up that child-in-me and nurture her back to health and safety.

So, I've been on a journey, trying to go inward and quiet myself and try to heal my whole self.

A move to the ocean helped clear my thoughts, bring some clarity. I had big dreams to write and get enrolled in a creative writing degree.

I volunteered working with underprivileged children in the arts. I took a writing course online with my lovely friend, Maya Stein, which unearthed some creative work, including this poem:

***

Mistaken Identity

by Stephie Goldfish

Don't try to find the reasons for the gross neglect,
nor the exact moment you accepted your truth.
Don't spend time defining who you are,
by confusing your life with someone else's dream.
This new life you’re searching for won’t be found
turning over the ground, as if hidden somewhere
in earthenware vessels, lost deep in the ruins
of excavated lands. Look, the error is from the beginning,
the warning signal they chose to ignore. Yes, it’s been
disastrous, I know, and you are angry, but don't let
your mistaken identity cause you more uncertainty
to the transplant you’re seeking. Go inward. Open your
mind and eyes, listen to what your own heart is telling you.
This journey will lead you to where you’re bound.

***

I wrote this poem, also called “The Transplant,” during April, both poetry month and transplant awareness month, which was also when I felt a strong desire to physically take myself on a journey back to the physical place where the story happened in the beginning.

So, in the beginning of May, this mother-in-me decided it was time. I mustered enough courage to go ahead with my journey to the lost horizon.

Note: Stephie will share more about the next part in her journey in her blog post next month.

Stephie Goldfish, aka Stephanie Hodgson, was born with a large ventricular septal defect, but it wasn't diagnosed until age 17. Since her defect went unrepaired, this resulted in Eisenmenger’s physiology, and she has developed severe secondary pulmonary hypertension. Stephie is an artist who graduated at the top of her class from The Art Institute of Pittsburgh; she is currently pursuing her love of writing, and writes short stories and poetry, as well as nonfiction. Learn more at her website and her personal blogs here and here.

Copyright ©2013 ACHA

Categories:
Location: Blogs Parent Separator ACHA Blog

Your name:
Gravatar Preview
Your email:
(Optional) Email used only to show Gravatar.
Your website:
Title:
Comment:
Security Code
CAPTCHA image
Enter the code shown above in the box below
Add Comment   Cancel