Title: A Secret Life: Surviving A Rare Congenital Condition
Series: N/A
Author: Greg Ryan
Published Date: Aug 30th, 2017
Publisher: Self Published
Source: I bought it
# of Pages: 124
Format: Kindle
Genre: Nonfiction/Memoir
Days to Read: 1
Rating: 5 stars
My review on Goodreads: Youtube | Twitter | Tumblr | Goodreads | Instagram | Letterboxd | TV Time
Goodreads Synopsis
Detailing a journey through the trials of physical deformity and deep depression. A story of human courage, loneliness, enlightenment and joy.
"Greg Ryan was born without an Anal opening. Without surgical intervention he would have died within 24 hours. Two Australian surgeons saved Greg's life but inadvertently ushered him into a life of shame, secrecy and intense mental health difficulties. Amazingly Greg after years of surgical intervention and counselling has found a pathway out of his despair.
This story is for everyone who learns what Imperforate Anus, Anorectal Malformations or VACTERL means as words and as reality. It is also written as a reminder of the quiet courage of many who walk among us".
The proceeds of the sale of the book will be distributed to a non-profit organisation formed by Greg Ryan called ONE in 5000 Foundation.
My Thoughts
I wanted to have this on my blog as well. I copied it from my Goodreads review.
I can’t possibly do justice to what this book means to me. It’s a memoir by a man born with Imperforate Anus (also known as Anorectal Malformation- ARM). It means born without an anal opening. You know that saying “Opinions are like assholes, everyone’s got one?” Well that isn’t true. I mean the opinion part might be, but not everyone has an asshole. I wasn’t born with one either. No that saying isn’t in the book, that’s just me bringing it up. I was actually born with VACTERL Association (at the time called VATER Syndrome) which is an acronym where each letter stands for something different. You only need 3 letters, I have all 7. The A, is for Anus. Typically for IA/ARM.
I have a lot of medical issues, but the one that has affected my life the most? IA. Sure when I was a baby they gave me a colostomy and eventually made me an anus and took the colostomy away. But I don’t have a sphincter and nothing happens without force. I mean I literally can not have a bowel movement without forcing it to. Grew up doing an enema which i’ve come to learn is called a malone, though before that I did the “old fashioned” way, with knees on the hard cold tile floors. I was a young child though I still remember. I, now nearly 30, have a colostomy again and use prune juice and laxatives to stay alive.
I didn’t intend to write so much there but i’m not going to censor myself. My point is, I was born the same problem. And making an anus doesn’t solve the problem. It’s a lifetime of issues. Constipation, Incontinence, embarrassing accidents that cause shame. I grew up thinking I was the only one in the world with this issue, and i’ve learned many other IA adults grew up thinking the same thing. I mean I STILL haven’t met anyone else with VACTERL or even IA, though now with groups on the internet I can talk to others with it, others who understand and have the same problems. But growing up all I heard, from doctors included was “never heard of that” and looked at like I got 3 heads. And treated like a sideshow freak. Surgeries (which I need more of, I have another large hernia from the ostomy but I keep putting it off...and that’s just one thing).
This details one man’s struggles growing up with IA and it’s associated issues. TW for self-harm and depression. I’ve been there too.
I related to a lot of it. Obviously we are different people and have had different lives but having both grown up with IA there were plenty of instances of “me too” that hit me in the heart and had me crying. Me, a woman in NJ of the US, and this man my father’s age (literally, less than a month apart) in Australia, and we’ve had some of the same feelings and issues because of this. Growing up I thought it was just me. Now I know i’m 1 in 5,000, which seems rare. But IA doesn’t care what race or sex you are or where in the world and there are millions of people. Do the math, that’s thousands of people of IA and thanks to the internet I can finally connect with others who understand.
I am getting much more personal that I ment to, but oh well. The more voices speaking up the better right?
He goes into the struggles of trying to keep it a secret and be as normal as possible growing up. I tried to be as normal a kid as I could be too, but daily enemas (for me it had to be daily), no control and accidents made normal extremely difficult. I felt shame, anger and depression. And all alone.
This book also made me angry at times. People’s inability to care. He worked for years as an adult even though it was incredibly hard and eventually had no choice but to get disability. But was denied initially.
A quote “He mentioned that he hadn’t had any previous patient’s application for the DSP denied. He added that he felt my case was a lot more severe than many of his other patients who had applied successfully.”
I’m not surprised. He being the doctor (that had been with him his entire life and had become a friend in the process). People often think “can’t see it, it doesn’t exist” or “Don’t understand don’t care screw you” as if a disability must be stamped upon your forehead or it doesn’t exist. Invisible disabilities exist and many of them. IA is one. And one as rare and unheard of as IA? Well of course it doesn’t exist or can’t be that bad. Seriously? "Just try harder" It doesn't work that way Shannon. I literally don't have a sphincter and my intestines are basically paralyzed. (this is my review and feelings, not the book, please remember that)
The trauma as a kid that comes from the necessary medical procedures and routines, and the doctors bringing in student doctors or whatnot to show you off as some rarity that they all oogle over. I get that awareness needs to be had but as a kid, it just feels like you’re the sideshow freak. And of course not many bother to think of the mental and emotional affect it all has on the child. And then no one thinks of care as an adult, though the issues never go away. However thanks to Greg who has spoken out about IA in recent years more awareness and changes are being made and it’s freaking wonderful! One on hand it makes me wish I was younger but i’m still glad that kids growing up with it today and not yet born will have a better time in the world as more awareness and conversations with IA adults that have been there and live it are had.
It is ultimately uplifting, and an important conversation. If you have IA, are a doctor, have a loved one with IA, or are a parent with an IA child, please read this book! It’s not long, and it is uplifting I swear. He ends up eventually connecting with others with IA thanks to the internet and then meeting them in real life and speaking out. It is inspiring in a great way. If you aren’t the one with IA it’ll help you understand where those with it are coming from and deal with. Having a medically complex child is hard on everyone, I get that. So often though people fail to think of how the child is feeling or what they are really going through, and even if they try it's hard to understand what one isn't going through themselves. Please read this book, especially if you are a parent with an IA child. Please.
The quotes I made visible on Goodreads
"A journey through the trials of physical deformity and deep depression. A story of human courage, loneliness, enlightenment and joy."
"In that audience, I felt Greg's pain as he revealed that he had spent 50 years of his life thinking that he was the only person in the world with such problems, the whole time protecting his secrets."
"I was speechless and tears ran down our faces. It was the first time either of us had ever met another Adult with IA."
"He mentioned that he hadn’t had any previous patient’s application for the DSP denied. He added that he felt my case was a lot more severe than many of his other patients who had applied successfully."
"After he had gone through the original decision he was initially of the opinion it was the correct one, predominantly due to relative young age and my work history. But, as he had received such strong medical submissions, he chose to contact Dr. Hocking directly and after a lengthy discussion with Dr. Hocking that morning, he was convinced by Dr. Hocking that I was medically qualified to receive the DSP. Once again, Dr. Hocking had been my savior."
"The most transfixing part of the meeting for me was when Mr. Kelly admitted that rather than telling my parents I was "fixed" he and the other Doctors should have told my parents that I was as “fixed as I could be". This subtle word difference would have given us all so much better understanding. We had all felt that our efforts were inadequate and consequently suffered dreadful emotional torment that could have been avoided. I shudder when I think how much my parents must have borne trying to help me be normal when that was never possible."
"They acknowledged that this was a valid issue, but I sensed the doctors didn’t want to frighten them due to the topic of psychological health being addressed. I could tell by nods of approval from some parents that it was a real issue. I was glad I asked the question because I realised that this was why I was at the conference. I wanted to raise the mental health issues relating to IA with the medical fraternity and this was my opportunity."
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