Making Plans

I think we all have those moments, when we sit back and think about where we are in life and where we want to be.  We look at our current situation and wonder, not only how did we get here, but how are we going to make it through?  What can I do to change my situation?

We inevitably have this assessment many times over the course of our lives.  We learn to read a situation, think of possible alternatives, make a plan, and move along.  Huh, sounds a bit like Improvise, Adapt, and Overcome.  I’ve talked about this a couple of times – because it’s been a sound mantra for me throughout my life.  It’s a trained response.  It’s a way of looking at a situation, knowing what kind of outcome you want, and figuring out how to get there.

So let’s go back to me…1989 heading into 1990.  I was 18, newly married, and trying to get a handle on my life.  So much had happened to me over the course of a year, and I needed to figure out the “what next” in my life – because clearly what I had planned for my life had not worked out the way I had hoped.  I couldn’t really un-do anything, so it was just a matter of figuring out my next steps.

Ultimately I ended up in an Army Recruiter’s office in Everett, Washington.  After 4 years in the high school JrROTC program, I knew that the military was a place I felt comfortable.  I knew I would be able to pass the necessary testing, but I wasn’t sure how the Army would feel about my diagnosis of MRKH.  I figured it would be a positive – a soldier who didn’t have a period.  One less hassle to deal with.  So I talked to the recruiter, scheduled my testing day, and waited for the follow up conversation.  The recruiter was going to check with the doctors and see if MRKH was a disqualifier or not.  I had to request copies of my medical records, surgical records, and all that, and send it to the doctors for review.  Eventually, they invited me to come down for an initial screening and after their exam they would make their decision.

In the mean time I did all the other things necessary when one wants to join the military.  I took tests, filled out questionnaires, talked to friends and family about my decision, and waited for the final decision.  The day came for my initial medical screening.  There were many other teenage women there that day, so as we all went through the basic assembly line process – height, weight, lungs, blood pressure, etc., I just plodded along with the rest of them.  We would all have to go through a pelvic exam too…standard procedure.  When it was my turn to go back to the private room, I took a deep breath and headed back.  This was what I had been waiting for.  This would be when my “other”-ness would be documented and based on the conclusion of the doctors I saw today…well, my fate rested in their hands.

It was fairly routine, as you would expect if you’ve ever been a woman in a doctor’s office.  Sit here on the table, just a few questions before we get started.  Name, date of birth, when was your last period?  Um…I’ve never had a period, they were supposed to have notes about that. “Oh, right, I see that here.  We’ve been expecting you, actually.  Hang on, let me get the doctor.”  She leaves, comes back with the doctor.  “Yes, yes, Heidi, so good to meet you.  We’ve reviewed your medical records and have a few questions.  Do you mind?”  Um…no, I guess not.  “How old were you when you were diagnosed?”  18. “And you’ve never had a menstrual period?”  No, I was born without a uterus, they call it MRKH.  “Yes, of course.  And have you experienced any side effects?”  Side effects?  Like what?  “Oh, anything really…abdominal pain?  Anything like that?”  Uh – no.  Not that I’ve noticed.  “And have you received any treatment for the underdeveloped vaginal canal?”  Um, no…everything stretched out through intercourse, it doesn’t seem to be a problem.  “Ok, well, are you willing to submit to a pelvic exam?  PAP smear?  Etc.?”  Yes, of course.  “Do you mind if I bring in another doctor and nurse team during your exam?”  No, I guess not.

He leaves, the nurse hands me a sheet, pulls out the stirrups and gets me situated. She is making small talk, trying to reassure me, make me less nervous.  This was the moment of truth I knew.  They would do the physical exam and the doctor would “see” what was and wasn’t there, and make an arbitrary decision on if the Army would accept me or not.  So there I am, poised, prepped and waiting.  Into the small room enters a whole slew of people.  Doctors and nurses.  “Your case is quite unique, and a few of my colleagues wanted to see as well.”  I was silent.  What could I say?  I knew I had to have this exam if I wanted to join the Army. The nurse patted my shoulder reassuringly and just talked quietly to me as they moved the sheet and the exam began.  I blocked out most of it, not wanting to hear their discussion.  The doctor poked and prodded and did the full pelvic exam.  I tried to ignore it all, knowing it would all be over soon.  The nurse stayed by my head the whole time.  The sheet went back into place and I was released from the stirrups, and helped to sit up.  I don’t remember the exact exchange of words, but generally I was told that all seemed as they expected – no cervix, no external abnormalities.  He was impressed by the vaginal depth I had achieved naturally.  He asked how I felt about having MRKH.  I said something about not having any choice in the matter, it’s how I was born, and eventually if I wanted to have children I would adopt.  He was satisfied with my answer apparently, and said to me, “I see no reason to disqualify you from military service.”

I let out a huge sigh of relief as he left the room.  I was allowed to enlist in the Army!!!

I was brought back to earth when the nurse said to me, “Wow, that must have seemed like you were the head cheerleader under the bleachers after a big game with the whole football team looking up your skirt.”

I just stared at her…utterly speechless.  I mean really, what could I have possibly said to that?

Talking about it

In case you haven’t figured it out yet, I’m very open about having MRKH.  I don’t try to hide it, I don’t deny it, and I do try and raise awareness with the general public.

To that end, I created the Courageous Project to help raise money for the Beautiful You MRKH Foundation.  If you don’t know much about it, I encourage you to check out both my Courageous page on the website, but also spend some time at the Beautiful You page too.

Courageous by Sunset Pines LLCSo now, I wear t-shirts, I have stickers on my car, I have signs that I put up in my craft show booth, and I have magnetic signs that stick on the door of my car.  They are all bright and colorful and have both the Beautiful You flower, and the words MRKH.  Inevitably, people get curious – and some ask questions.  Depending on the situation, I have a few stock responses.

For example, the other night on my way home after a long day at work, I took my car through the A&W drive through and ordered a large diet root beer.  I place my order, pull up to the window and hand the young teenager my money.  As I’m counting out my change to give him the exact…he asks, “What is M.R.K.H?”  I hand him my coins and smile and say, “Thank you for asking.  It’s a congenital form of infertility that affects 1 in 4500 worldwide and we are born without most of our reproductive tract.”  He looks a little embarrassed as he hands me my root beer and tells me to have a nice day.  I felt a little bad that I embarrassed him, but I also admire and respect the fact that he asked.

When I’m in my craft show booth all set up, with signs that highlight Courageous, different things happen.  Some people wander in and look at my display and read the small framed information flyer that sits above it.  It says something like “MRKH is a congenital form of infertility that affects 1 in 4500 women.  At the age of 18, I was diagnosed with MRKH.  On that day, my world quietly shattered.  My hopes, my dreams, my plans, everything I thought I would or could do with my life…shattered.  Yet, somehow my life continued.  As I look back on my young life, the things I did and didn’t do…I look back at a young woman who learned to be Courageous.”  And then it lists the products and prices.    I watch and gauge their responses.  Some just read quietly and walk away.  Some ask “is this you?”.  Some say “I’m so sorry”.  Some share their own struggle with infertility, or of someone they know.  Some say “Wow, I had no idea.“ I have a variety of responses to their comments of course – yes, it’s me.  Thank you, but please don’t pity me.  Infertility affects 1 in 8 couples in some form, and we should all be more compassionate.  I do this to raise awareness and reduce shame.  I don’t want one young women to go through the sheer isolation that I experienced, so I’m doing what I can to raise awareness.

People will often walk by my booth, see the big sign, but not read the flyer.  “What is M.R.K.H?”  They always draw it out…deliberate in their enunciation.  It makes me smile!  My response is usually, “It’s a congenital form of infertility.  I was born without a uterus, cervix, or the upper 2/3rs of my vaginal canal.”  Some people walk away, and some ask more questions.  I don’t do it for the shock factor…I’m just open and directly honest about it.  People are curious and want to learn.  Some bring up uterine transplants and surrogacy.  I would say that the overwhelming response that I get is admiration for what I’m doing.  Respect for my bravery – my courage to speak up.  Sometimes they ask if they can give me a hug.  Many thank me for teaching them something.  It’s all those responses that empower me to do more!

From time to time, when I’m in “Courageous MRKH” mode – I come across people who know me.  Acquaintances from work, students in the program I oversee, neighbors, customers from our winery.  All these are interesting interactions, as they aren’t used to seeing me outside of where they normally see me.  And of course, they ask – I respond, and they go… “wow…I never knew. I mean, I know you don’t have kids, but…wow”.  I smile and sometimes this leads to a pretty anatomically specific conversation.  After one such conversation recently, with specific discussion of hormones, vaginal depth and dilation, IVF, and all that, this friend said to me:

“I am just amazed.  I can’t believe we just stood on the sidewalk and talked about your vaginal depth, and you were just so cool and confident and answered all our questions as if we were talking about the weather.  I can only imagine how difficult it was to deal with all of this as a young woman, and yet somehow you are now able to talk so openly about this all?  I have so much respect for you now – not that I didn’t before – but wow.  I’m just amazed.”

I smiled and said thanks, and that all I’m trying to do is raise awareness and reduce the shame that so many young women feel when they receive their diagnosis.

“I can see that, but really, Heidi – I’ve got to wonder how you learned to be so, well, Courageous?”

I don’t think it’s something you learn, I think you just make a choice to set your fears aside and follow your heart.  I’m doing all of this not just for myself, but for every other woman out there who gets this diagnosis.  It’s not about me – it’s about all of us.

Courage is what it takes to stand up and speak; Courage is also what it takes to sit down and listen. – Winston Churchill

Learning to be an Adult

I think probably, that when anybody loses their virginity, there are inevitably some moments of reflection.  Questioning ourselves, questioning life, our loss of innocence, and realizing there is no do-over.  Whether you do this silently by yourself, confide in a trusted friend, call your parent, or even consciously recognize you are in fact questioning “it” and the implications that “it” might have on your life…I think we all probably think about “it”.

For me, I had a lot of emotions to process – and no one really to confide in.  I certainly didn’t have the kind of relationship with my parents to talk about a sexual experience.  I didn’t have any friends that I could relate to.  Sure, I knew some of my friends had sex – but we didn’t talk about it.  We weren’t prudes, we were just more “private”.  It was 1989, before the internet and social media.  Before cell phones and text messaging.  Long distance phone calls were rare and short, and you waited until evening when the rates were lower.  I felt alone, left to figure this out on my own.  Add to this, I was unquestionably different than every other woman I knew because I didn’t really have a vaginal canal – and just who could I talk to about what had happened and if it was normal and what else could I expect?  I had to forge this trail on my own.  No teenage magazine could have prepared ME for this experience.

I don’t remember much of my trip to Florida really…except for the anxiety – the overall emotional turmoil – and just trying to figure out the “what now” in my life.  Looking back at it, intellectually I can see that I wanted a few things:  I wanted to feel normal, to be loved, to be reassured that it would all be ok, that the path and plans I did have were, in fact, right for me.  But I was a mess.  I was lost, confused, scared.  I was surrounded by people who I didn’t know, and who couldn’t possibly understand what I was going through.  The only person I sort of knew was my fiancé…and it became clear to me pretty quickly that I didn’t really know him at all.

I cried a lot.  I hurt physically.  I hurt emotionally.  I tried to distinguish physical love from emotional love.  I wanted to be held and comforted.  I wanted to be the perfect fiancé and new lover.  But it hurt to be touched intimately, so when he didn’t touch me I felt rejected – like a freak.  Touch me but don’t – love me but leave me alone – hold me but give me space.  I was a mess – but tried to hide it.

By the time we left Florida and started a trip across the US, we had more or less settled into a routine I guess.  I had mostly regained control of myself and was ready to just get on with it.  No more feeling sorry for myself, just improvise, adapt and overcome.  We drove through many states, studied maps and highways (no GPS of course!) and made a trip through Nashville.  We spent a couple days there touring around and just “vacationing”.  We traveled across the southern states and to California.  We visited one of his brothers, a close friend of the family, and we stayed with my aunt, all before finally making our way back to our hometown in Washington.  That many hours in a car with someone, and all the hours of conversations, and all the quiet times of contemplation…left me with probably as many questions as answers in my life.

I came to realize that the man I flew to Florida to be with did not really exist.  I was in love with someone who didn’t exist outside of my mind.  And I wasn’t sure at all that I liked, let alone loved the man whom I’d been traveling with.  But I was trapped.  Stubborn.  Independent.  Prideful.  I had planned my entire adult life around a person who didn’t exist.  Who could I talk to?  What should I do?  I didn’t know.  I was on my own to figure it out – I was always on my own.  I had been planning and talking about this wedding for years.  The date was set.  The colors were set.  I wore a ring.  Everyone expected that we would get married in October.  What option did I have? None, besides marry him.  So I did my best to convince myself that this was the best thing, that I could love him, that we would figure it out…we just had to get married and then…well, I guess we would figure it out.

In my heart, I knew I shouldn’t marry him.  But I truly didn’t know what else to do.  My parents had told me I couldn’t live with them after going to Florida.  I hadn’t applied to college.  I didn’t really have any friends that I could get an apartment with.  I had to just figure it out.

I got a job. I cleaned the house.  I cooked dinners.  I planned a wedding.  I went to bridal showers – for friends and for myself.  My brother’s girlfriend made my dress.  We added peach flowers and pearls to my mother’s veil.  We ordered invitations, cake, and flowers, and rented bridesmaids dresses and tuxedos.  We bought rings.  We settled into a routine and got to know each other more and more.  I still wasn’t sure I was doing the right thing – but I kept my doubts and my fears to myself.  I would find a way through this.  Improvise, adapt and overcome.

We got married in October 1989.  I was 18 years old.  We lived in his dad’s house.  We were trying to figure out life and make plans.  This wasn’t the fairytale I signed up for, how would we ever survive?  Improvise, adapt and overcome.

We bought a used car.  We rented an apartment.  We changed jobs. We got hand-me-down furniture. I continued to wrack my brain to find a solution.  How could we ever get anywhere without anything?  Dead end jobs.  No education.  He had left the Marine Corps.  We were stuck – going nowhere fast.  We fought, we argued, we blamed each other and the universe.  We were unhappy.  We were trapped.

But Damn-it – I was stubborn.  I was independent.  I would figure out what to do next.  Improvise, Adapt and Overcome.  There had to be a way…there had to be!  And I would find it.