11/2/2012 2:27 PM
By Stephie Goldfish
“What are you afraid of, Stephanie?”
These words keep playing over and over in my head lately. I was asked this question by my psychologist when I first sought out psychotherapy in 1991. At the time, I answered:
“Death. I’m afraid of death.”
And I was the little kid who wasn’t afraid of anything—not afraid when I found the big black cat whose eye had been shot out with a BB gun in the second floor bathroom, left bleeding; not afraid to sit in the first car of the biggest rollercoaster, laughing all the way, while my mom and twin sister in the car behind me held on like it was all over, were nearly crying after the ride; not afraid to do the first tumble flip on the trampoline in gym class, which sent the entire 9th grade into hysterics.
The list could go on, and it gets quite scary, when I think about it—like moving to New York City when I was just 20 years old, working there and providing for myself for quite awhile despite my CHD; having two major surgeries within four months of each other that would permanently dissolve my ability to get pregnant naturally, because I thought I could defy the odds; being married and divorced twice. These scare me, still.
What I am most afraid of these days, though, seems to be tied to the same reasons of why I am angry. And if anyone has been following me on Facebook or on my personal blogs, you’ll definitely know I have been angry.
Yes, I am angry. I am angry, it seems, at the world. And I have been angry for quite some time, at least a couple of decades.
But when I think about what is making me so angry, I keep coming back to the question above. What am I really afraid of?
I am afraid of not being able to accomplish my goals of getting my BFA in creative writing; I am afraid of not being considered a good person and friend to others, especially to those with my similar illness; I am afraid of being considered selfish or too codependent; I am afraid of failing in what I start out to accomplish; I am afraid of losing my independence and ending up in a nursing home; but mostly, I am afraid of dying, especially dying alone.
And really, and truthfully, what it comes down to is that I am afraid of living. I am afraid to live.
When I think of living, I mean living fully and having a more positive way of living than to always think of the opposite, on dying. Because I would much rather be going to school right now and at least getting one course a semester towards my bachelor's degree. I can also realistically be a better communicator with my friends, like visiting them in the hospital when I can, giving them a call, or sending a card or personal note.
I started a volunteer position just about two weeks ago, working in the arts with young children to young adults. This has given me some kind of valid purpose and a reason to stay stable at least through the specified commitment date, if not longer.
And if I happen to keel over while I am doing these positive steps for myself and others, I wouldn’t be the first one and I won’t be the last.
Sometimes I am afraid to open up my emails or Facebook to see who is sick or gone, but I realize that each of us play a part in the big stage of life. We can either have stage fright, flight or fight, or we can stand up and play our part in life we were meant to play.
As they say in theatre, “It ain’t over ‘til the fat lady sings.”
And, as one of my doctors, a psychiatrist, who was treating me while I was hospitalized and having a breakdown—and I thought for sure I was physically dying—later told me, “As long as you are breathing you’re alive.”
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 personal blog.
Copyright ©2012 ACHA
3 comment(s) so far...
By Jane Northrop on
11/2/2012 3:25 PM
Re: Afraid to Live
Oh my, how raw this is. I see so much of Nicole in this? I am going to have her read this because I think she could relate to it.
You are a good friend and have been wonderful with Nicole. You didn't have to reach out to her when I contacted you but you did.
I hope that you will see the wonderful person that you are just like I wish this for Nicole.
Jane ~ mom to Nicole, 18 yo, VSD, PAH, Eisenmengers, BHJS
"You're braver than you believe, and stronger than you seem, and smarter than you think."
By Gizzy on
11/2/2012 4:11 PM
Re: Afraid to Live
I can absolutely relate to that in almost every way. Thank you for sharing such close, raw emotions with such a wide audience.
I hope a lot of clinicians read this too. I've found they are often very focused on communicating the things we can do to keep us living/ out of the hospital and, if we don't ask, neglect to talk to us about the things that can optimize our health so we can achieve goals like these!
Let's remember to shoot for those goals everyday and remember to ask our doctors what we can do to keep ourselves healthy as we achieve them!
By Rachael on
11/5/2012 8:58 AM
Re: Afraid to Live
Definitely can relate to this post. Actually inspiring me to write my own blog on the theme - very well written, Stephie Goldfish!