Where were you when you first told someone about your Poland Syndrome?

If you are a parent of a child with PS that may seem an odd question, but for those with the affliction, it is a perfectly legitimate question.

When did you first come clean?

That’s what it feels like, anyway. “Coming clean” as if there is some big secret or some big failing needing confession. Unearthing a deep dark secret. Maybe even offered in whispered tones, in case someone else might overhear.

A bit dramatic, maybe. But not by much.

For me, Poland Syndrome was, and to a large degree still is, a very private struggle. I say struggle because there are physical challenges associated, but also challenge to not allow it to define me; challenge to not allow self-consciousness to dictate social interactions; challenge to not allow potential embarrassment to prevent me from trying new things or meeting new people.

In my early years I do not recall ever making Poland Syndrome a topic of conversation. I do not think I ever initiated a conversation about it. It wasn’t until my high school years that I took the initiative to tell someone else, and it wasn’t by choice so much as by circumstance. I was forced to.

Entering my sophomore year of high school I was facing my first of numerous surgeries on my chest. It was August and my club soccer team was attending a week long camp that our trainer put on at her university each year. We were there as helpers and received additional training in return. We were also expected to be there before camp started to run with a few of her university players, who were also coaching at the camp.

On Tuesday of the week I was going to miss the AM run; the longest of the runs we would do that week; 5 miles. I wouldn’t have been too sad to miss the run except the reason for my missing the run. It was a consultation with my surgeon; my last check in with him before surgery.

I arrived before the camp started but after my teammates finished their run and received some friendly chiding for “skipping out” on the workout. I knew that today had to be the day I tell them about my upcoming surgery because it would effect them — I would be out for about half of the season and they needed to know why.

As the jesting did not produce in my the expected response of either annoyance or laughter, my teammates knew that there was something up. After shifting from side to side for a moment I fumbled through my pre-rehersed explanation:

“In a week I’ll be getting surgery to correct a birth difference on my chest. I’ll be out for almost 2 months before I can play again.” A deafening silence followed as my teammates didn’t know what to say and, I’m certain, were totally unprepared to hear from me of all people anything so serious.

I survived the ordeal, and thankfully did not have to field any questions. But my task was not over.

Within a few days I was visiting my high school coach at his summer job to tell him the same thing. He offered some words of encouragement and it was left at that.

I’d have to go on and explain a few more times to friends and high school teammates who could not quite wrap their minds around Melissa not playing soccer for any length of time or for any reason.

I offered the same vague, surface level story and said it in such a way that did not allow for further dialogue or questions. I did not connect for them my hand and this surgery, although I’m sure some did that on their own. I did not explain exactly what the surgery would do or why it was necessary beyond, “fixing a birth difference.”

The 8 weeks of recovery could not go fast enough and I was thrilled to be back on the field no longer needing to explain myself.

Fast forward 3 years and I am a freshman in college. I am still just as self-consious about my hand and my chest. I have not spoken about any of it since that fall soccer season in high school and could be quite content to never speak of it again…except I couldn’t. I couldn’t ever be quite content not speaking of it.

For friends, they never seemed to give my hand much thought. For me, I never stopped thinking about it; how it made me different, whether people noticed and what they thought when they did. How they would respond when we exchange the socially standard handshake greeting for meeting new people. Would they be one of the “jumpers?” The folks that literally jump back in shock or disgust or whatever?

I used a 3-day weekend to schedule what I decided would be the last of my surgeries. It was marked on the calendar hanging in my dorm room. Never particularly close to my family and not the type to head home for a random visit, I’m sure this random trip back to New York was strange to my roommate.

When I returned to campus Sunday afternoon I did so with a limp. This part of the procedure required additional flesh to be taken from the inside of my upper leg and left me with an uneven walk until that area fully healed.

The limp in my walk, the clear struggle on my face combined with the “Surgery” written on my calendar for that past Friday — it did not require my roommate to use too many detective skills to surmise why I went home.

Later Sunday evening she hesitantly asked me, “Mel, did you get surgery on Friday?”

I gave her a similarly surface level response as I did to all my soccer teammates 3 years ago. She seemed somewhat satisfied and returned to her studies, but I was anything but satisfied.

I knew it was time to come clean. I didn’t want to, but at the same time felt compelled to. I needed someone to know.

I pulled up a website to let it do the talking instead of me. There was no way I could fully explain Poland Syndrome in a coherent way and not get emotional. So when I had the site pulled up I called my roommate over and said, “you asked me about the surgery. This is what I have. This is why my hand is the way it is and this is why I needed the surgery.”

She looked and read for a few minutes, knew me enough to know I didn’t want to field questions, said, “okay” and went back to her work.

There, I did it! She knows. She now knows the deepest darkest secret I’ve ever kept from anyone. And ever so slightly I felt a little less alone.

There have been a few times since then when I have told someone about my condition. Usually not the whole story — just the parts that were applicable to the situation and the conversation. It is never easy to talk about, but it is getting easier.

If you are a parent and your child has PS, please know that at some point they will feel alone. You may protest and say “but I’m here for them.” “They know they can always talk to me.” Or, “not my child, s/he is so strong.”

You can choose to either fool yourself or accept the reality that despite your best efforts, there will be times when your child feels alone. And until you accept that you will be unable to fully help them. Once you can accept this reality you are then able to talk to your child in those moments and say,
“I know you feel alone, but….”

“But, we are here for you.”
“But, I want to understand you.”
“But, I don’t want you to be alone, how can I help?”

I felt alone most of my life. I am certain that if you polled my family they would protest. They would likely give you the objections I offered above. No matter what their perspective, what they think they did or didn’t do, the reality was I felt alone.

I am so very thankful for friends along the way (largely in college) that helped to show me I wasn’t alone. I am thankful for the healing that writing has brought, which is a large reason why I started www.BirthDefectPolandSyndrome.info and why I wrote the book Surviving to Thriving.

I began that book while in college as a means to process my thoughts. And I recognized that if I felt this way surely others do too. So despite my innate introversion and desire to live a private life, if my experience can help someone else, I’d be immensely selfish to NOT share it.

Then I began having children and began to wonder, “if my child is born with PS, how would I do things differently?” And I began to think about all of you parents out there, wondering how to best help your child. If my experience can offer any wisdom or guidance for moms and dads, then I’d be selfish not to share.

I was born with Poland Syndrome. I have been given this circumstance in life. I can choose to shut myself in, and shut everyone out, feel sorry for myself, or make excuses for not aspiring to do anything meaningful because of the challenges. I could choose an every-man-for-themselves attitude or a ‘just deal with it, I had to’ posture towards others.

OR — I can humble myself and be very transparent. I can choose to share my experiences — both the flattering and the not so flattering ones. I can offer moms and dads a heads-up on what may come down the road so that they can be better equipped to meet their child in the struggles and hurts and help that child excel and achieve and overcome.

By nature I like to be left alone. But in doing so I would forfeit the opportunity to make a positive difference in the lives of others. A choose reaching out over selfish-preservation.

I am Melissa Amaya and I want to inspire you to live a tenacious life — regardless of external circumstances.