Graduation

So I graduated high school.  Big life defining moment, right?  I remember the day well.  My uncle Steven drove down to attend – that was fun!  He didn’t have his own children, and hadn’t been a huge part of my childhood, but when he came to my graduation it was pretty special!  Another very, very special memory involves my best friend, Eileen.

We had been friends for years, but the last year we had gotten extremely close.  Her parents had embraced me as another daughter, and we spent hours and hours together as best friends.  She was to be my maid of honor that fall, we were on the armed drill team together, everything.  I don’t know that I talked much about my MRKH diagnosis with her – I mean I must have at some level, confided in her and likely her mom too.  I don’t honestly remember.  But she knew of my surgery, and that I now knew I couldn’t have kids – but I don’t think I would have said anything else to her – or anyone.  I just pretty much didn’t talk to anyone about it.

So graduation day arrived, Uncle Steven was in the audience, and we were all lined up in the stadium alphabetically.  Eileen and I having the G-A-M and G-A-N last names figured we would get to sit next to each other.  Sadly…the line broke between us, I was at the end of one row, she was the beginning of the other.  As we filed up to the stage, each row heading to opposing sides of the stage…and as we came across the stage, our names announced, shake the principal’s hand, get your diploma, your family claps…and you walk down the stairs on the other side…Eileen was at the front of the line and waiting at the base of the stairs!  We gave each other a giant hug – held up the line a bit to the cheers and claps of friends and family…and she got her diploma, and with that – High School was a thing of the past.

The next few days are a blur.  I packed the last couple boxes of things and drove them over to my soon to be Father in law’s house.  I spent time with friends and wished Aaron well as he headed off to Marine Corps boot camp.  I was officially moved out of my parents’ house, packed and ready to fly to Florida, and nervous as hell as Eileen and her dad drove me to the airport.  It was a huge day on so many levels, and I was glad to have Eileen and her dad with me.  Back then, your friends and family could go all the way to the gate to wait for your plane and watch you climb on board…and wave at you when the plane pulled away from the gate.  It was not the first time I had flown, but it was the first time I’d been on my own completely.  I had a layover somewhere, had to change planes and all that – but I was determined…I could do it.

Eventually, I arrived in Florida and was met at the airport by my fiancé and a couple friends.  I met his friend and wife, and we rode back to their apartment.  Our plan was to spend a few days with them around Florida before driving across the country back to Washington state.  I was shy and nervous.  Meeting new people always made me anxious, and all these people had heard all about me yet I didn’t know much about them at all.  And they were all several years older than me.  It was totally awkward.

Add to this the fact that I had this totally awkward conversation I had to have with my fiancé about MRKH and no uterus and stretching and well…it was awful.  We had avoided a sexual relationship while I was in high school.  I just wasn’t ready to give up my virginity, and likely he didn’t want to be charged with statutory rape.  We didn’t really talk about it…we just didn’t go down that road.  But we both knew that when I got to Florida, things would be different.  I mean really…we were getting married in 4 months, I had moved all my belongings into his dad’s house it was kind of expected – and it’s not like we had agreed to wait for our wedding day or anything.  But I knew that I had to talk to him “before”…so that he would know that I was “different”. But how do you start that kind of conversation???  And we were staying with his friends…I was just lost.

Eventually, the friends excused themselves – it was late, they had to work tomorrow, nice to meet you, help yourself to anything you need, we’ll see you tomorrow evening, good night.  This was it…go time…I was scared to death.  I changed into a nightgown, and into bed I went.  We talked, we talked for hours about anything and nothing, but never about what I had to talk to him about.  We were both nervous and awkward I think. We talked until we both fell asleep.  I woke in the morning to the sounds of his friends getting ready and leaving for work.  We still hadn’t talked about “it”.  I was petrified.  He started kissing me and touching me.  I was stiff as a board, scared out of my mind about what was about to happen.  Stop.  Wait. No. Not yet…we had to talk.  What was happening?  I just shut down…frozen…eyes closed…crying silent tears…terrified.

After.

Pain.

Tears.

Words.

Tears.

When I could finally articulate words again, I attempted to explain that we were supposed to talk first so he would know that I was different and that things needed to be gradually stretched out.  I was so embarrassed when he said something like, “well that explains why I couldn’t get in…”.  It was a horrible day.  I was mortified by the fact that I was different, and that he had not given me the chance to explain – and I had nowhere to go.  I was all alone and didn’t honestly know all that had just happened to me.

I got up and went to the bathroom.  I was very sore.  There were some streaks of blood.  I found some panty liners in the bathroom, took a shower and got dressed.  I didn’t know what to do.  I didn’t know what I needed or who to ask for help.  I was lost and utterly alone.  I just had to survive – find a way to make it through the next few days.  Until then, I knew I just had to improvise – that was the first step.  Put on a mask and not let anyone see what was behind it – survive the next hour, the next day.

Fake It ‘Till You Make It

Getting through the months following my diagnosis was a challenge.  Some things I remember precisely, others I just powered through…did what I had to do.  I think this is probably true for many people when they receive a life altering diagnosis, not just those of us with MRKH.  The similarity, I believe, comes from the similarity of having everything you thought you knew and would do, ripped right out of your grasp.

Think for a moment of the proverbial table – perfectly set with exquisite linens, fine china, gleaming silver, sparkling crystal, and a vase of breathtaking peonies.  Perfect, right? On that day, sitting quietly in the doctor’s office when you are given your diagnosis, that pesky doctor just reaches up and yanks on that beautiful table linen…and everything on top of the table wobbles, teeters back and forth, and you wait to see – will it crash or will it settle?

tablesetting

The weeble-wobble – that’s what most people saw…me tripping over my own feet, but catching myself before the crash.  I righted myself and my life continued – at least in their eyes.  I think my teachers in high school – they saw that I missed a day of school, came back a little pale and extra quiet, but managed to get my work done and be back in my routine without much more than a little disturbance.  I could have been out with the flu for all the change in my behavior.  A few of my closer friends knew I had surgery and was sore, but they too saw me just pick back up and finish out the year.  I was good at the bluff.  The table setting teetered, but it righted itself with only the old table beneath it now.  Adjust the placement of the forks, and I was completely serviceable.

But inside…there was a whole lot of shattered life that I needed to deal with.  Some pieces could be super glued back together and returned to the table.  A few needed a couple doses of super glue before they really fit and could be used again.  And the rest just needed to be swept up and tossed away – unsalvageable.  Most of this repair work I just did on my own, silently making choices and just figuring out how to move on.  Some of the work hinged on the responses of others and what brand of super glue they had would determine if the repair would stick or not.

Let’s start by reviewing what I had planned for the next year or so, shall we?  So I was 18, a senior in high school, set to graduate in early June.  Following graduation, I was immediately moving out of my parents’ house, getting on a plane to Florida, spending a few weeks in Florida and driving back to Washington.  In October I was getting married and starting my “real life”.  I would get a job in a medical office, my marriage would be perfect, and probably in the not too distant future, I would find myself pregnant with my first child.  Life would be great and perfect and exactly how I had mapped it out!

The evening of my surgery, after having been told in my groggy state that I didn’t have a uterus, I had spoken on the phone with my fiancé.  I told him I don’t have a uterus and I can’t get pregnant.  I kind of expected that he would dump me with this news.  A part of me hoped that he would – but he assured me that he loved me, no matter what.  We had known each other for 4 years at this point, and had been more or less engaged for 2 years.  Our relationship was a safety net for me – with a boyfriend in the military, I didn’t have to play the high school dating game.  Handy since I hadn’t had my period yet and all that.  I loved the idea of being in love and planning to get married – but I don’t know how much I really loved him, and my diagnosis gave me an opportunity to look closer at that. And really, in my 18 year old brain, how could someone love ME when I was broken and missing parts?  I was unlovable – unworthy of love.

After my official diagnosis appointment, I talked to him again and he assured me again that he loved me, no matter what.  It didn’t matter if I couldn’t get pregnant, we could always adopt.  I did the whole, “yeah, but…” thing and tried to sputter out that we had to talk about “more” when I got to Florida.  I got a more or less reassuring brush off – no problem we would talk about it then…blah, blah, blah.  He had no idea…and I was soooo embarrassed with having to talk about the whole stretching thing…I was happy to put it off.

Whether by design or by default, as I grew up I learned to fend for myself pretty well.  I was pretty independent, not afraid to think out of the box, find a creative way to get what I wanted.  We didn’t have a lot of money as a family, and as kids my 2 brothers and I learned to work for what we wanted.  We were taught responsibility and that money doesn’t grow on trees, and sometimes we had to make choices and give up one thing in order to pursue another.  I got my first real job before I turned 16, if I participated in any activities outside of school, I had to arrange my own transportation.  Gas was not free, and I had to earn my own spending money.  I participated in my high school’s Junior ROTC program, and here I found my groove.  I liked the structure and the responsibility.  I liked being a part of something, and being rewarded for my hard work.  I was able to do things with the group that I never would have done otherwise.  I traveled, I learned to shoot, I learned discipline, hard work and precision, and I made some lifelong friendships.  And maybe most importantly, the lesson that stuck with me most was that things didn’t always go as planned, and so you had to “Improvise, Adapt, and Overcome”.

Those are words I came to depend on…base my life on.  And it’s those words that helped me the most to navigate the few months following my diagnosis of MRKH.

What is “Normal”?

I think this is one of the things that is hardest to grasp.  What is normal?  Who defines it?  What does it look like?  What does it feel like?

Miriam Webster defines “normal” as an adjective, usual or ordinary; not strange.  It goes on further to say: conforming to a type, standard, or regular pattern and: according with, constituting, or not deviating from a norm, rule, or principle.

Ok…so a standard, regular pattern – not deviating from a rule or principle.  Can relate to geometry, chemistry and all other subsets of science.  A predicted path, standard and regular, expected.

For fun, I looked up “normal” in the urban dictionary, too.  If you’re ever really bored, reading the urban dictionary entries can be entertaining.  But I wanted to see what, or rather HOW, other people would explain the term “normal”.  Here goes!

  • a statistic based upon a majority
  • A tool of conformity
  • A deception strewn about by society in order to coerce the public into believing they must conform to society’s standards so that they, in essence, becomes slaves to the sayings of those, corrupt and in charge, who in turn do not even heed their own advice.
  • Something no one is, but for some reason strive to be.

Well, somewhat predictable for the urban dictionary – but it does kind of align with Webster too.  Something that is perceived to be standard, regular, expected – and societies attempt to conform or to judge based on conformity.

Yes, that’s it…I’ll say it again…

Normal is simply societies attempt to conform and judge an individual based on conformity. A judgement.  An opinion.  A perception.  And yet, we tend to classify ourselves as normal/abnormal.

So think back if you will…did you have your life figured out at 18?  Did you unequivocally know WHO you were?  Some will say yes, but the majority I think will say no-way.  It’s part of being a teenager…stuck in between childhood and adulthood.  Trying out thoughts and beliefs…testing boundaries…learning about friends and frenemies.  Trying blue sparkly eye-shadow and a mullet hair style.  We are all trying to find ourselves and our identity in some way.  With every attempt, we learn something and that shapes us just a little bit more -guides us into the adult we will eventually become.  But there are societal and cultural pressures – big ones – and we may not even consciously recognize them.

For example, I always expected that I would grow up, get married, have a family and live happily ever after.  As I got older, I expanded on these plans with how many children I would have, and where the happily ever after would take place.  Because I was going to marry young and have children young, I didn’t have any “need” to go to college…my husband would have a career and maybe I would run a day care.  So…to make a list, I needed to grow up, find a boyfriend, get a diamond ring and a white dress, get married, have a house, and make babies.  Seemed simple enough, normal.

I had friends in school who wanted to be doctors and nurses and lawyers and musicians.  Their lists probably involved study hard, go to college, make a career.  Did they even want to get married?  I didn’t know – but I’m sure they had a plan.  Again, simple, normal.

My plan seemed normal.  Their plans seemed normal.  It was the expected path, standard and regular.  Normal.

When I was diagnosed with MRKH in 1989…I struggled mightily with the fact that I was now quite obviously ‘NOT NORMAL’. I didn’t have all the normal/expected parts, and the parts I did have weren’t quite right either.  But what did that mean really?  Was normal really what I wanted to be?  What did I want to be?  I didn’t know anymore, but I was pretty sure that it was different now that I had this label….I had this syndrome with a name that told the world I was not normal. Or was I?  What did this mean for the rest of my life?

I still don’t have all the answers, but I do think I have a clearer grasp of what is normal for me.  Over the years I employed different strategies and tactics to deal with life and determining what normal was.  I had a conversation a couple weeks ago with a friend and he asked me, “Obviously you have come through all of this and are a very strong and confident woman now, but where did you learn to be this way?  I can’t imagine getting a diagnosis like that, at that age, and being able to deal with it.  Is this strength and independence something your parents instilled in you when you were growing up?”  We talked about it a little more and in doing so, I realized I had a lot of material in there that would be good to write about.

I did eventually learn to be strong, to find my own path, to accept the path I was on, and of course, I learned to be Courageous.  Ultimately, I learned to define my own normal and not rely on what society might try and coerce me to believe is normal.