Lessons from Gram

Over the past several years I’ve made it a point to regularly send my Gram a card.  Every few weeks usually, but sometimes more sporadic.  As dementia slowly took hold, I knew that she we wouldn’t be capable of responding, but I wanted her to have cards and letters to read (and re-read).  While technology is “nifty” and digital pictures can be shared, having a card in your hands to read was the best gift I could give her.  I met a darling woman at a craft show who handmade lovely cards, and I made it a point to stock up on them every time I saw her.  She knew I bought them to send to my grandmother, and we shared many a hug as I picked them out and gave her an update.

My cards and short notes usually talk about the weather, the garden, the flowers blooming, the depth of the snow, or the height of the grass in the fields.  I would share about a special lunch with a friend, or a quick trip to the big city for errands.  Things that might be small and seemingly insignificant in my fast paced world, could be a glimpse at my life for her.  So I shared as often as I could.  I was always glad when I could tell her that I would see her in a few weeks, or when I could thank her for her hospitality and a great visit. As much as the cards were a newsy update in a format Gram would appreciate, they were also an opportunity for me to recount my blessings, and take pleasure in the smallest things in life, and the gifts and influence she has had on my life.

My Gram was 93 years old, and has been in hospice care since August of this year.  The past couple of years her health has declined and it was time to make the shift.  A couple of weeks back, Gram tumbled out of bed in the early morning hours and banged up her leg.  As these things go, that started the ball rolling as it were – a blood clot, bed rest, transition to a skilled nursing facility, and ultimately her passing from this life.

As you can imagine, I’ve been replaying scenes of my life the past few days, and thinking about the remarkable woman I call Gram, and her influence in my life.  Things I’ve shared with her, and things I haven’t.  Funny memories and life lessons.

She taught me to be frugal and thrifty – rinse and recycle tin cans, rinse and reuse plastic zip-lock bags, neatly fold and store grocery bags – both plastic and paper.  Dilute your shampoo by at least a third to make it last longer, and make and use compost for your garden.

She taught me to appreciate nature and the beauty around us – on hikes, in her garden, and while camping.  By putting food out for the birds, you get to enjoy their presence and beauty and song.  If you walk quietly and listen carefully you will see the birds, the fish, the chipmunks, and if you are really lucky the deer and even a bear or two!

She taught me to wish upon a star, a birthday candle, and a dandelion puff.  Dry the prettiest flowers between the pages of a book, and pick up the pretty glass on the beach.  We also had to pick up all the trash on the beach and the hiking trails and carry it out with us – to make it nice for the next people.

She taught me to love music and books, and that tea in special tea cups always tastes better.  When the table is set with beautiful linens, candles, special china, crystal, and silver – the meal tastes so much better…even take-out pizza! (oh yes we did!)

She was a nurse, and she inspired me to do a job I loved that had meaning, and not worry so much about the size of my paycheck.  As a nurse she also taught me that a jar full of cinnamon red hots could cure anything that ailed me.

She was also a woman of strong Faith.  As a child when I would stay the weekend with her, she would take me to Sunday School on Sunday mornings.  I didn’t know the kids there, but we learned about the bible and the stories within.  There was a big bible in the hallway in her home, and if I was very careful (and she supervised) I could turn the fragile pages gently and she would read a few verses for me.  When I was a young woman, there were many a Sunday when we attended church services together, and she helped to arrange for the pastor for my first wedding.  In times of struggle and challenge in my life I’ve found myself thinking about how my Gram may handle it, and how her example of strong Faith has guided me.  I have wished over the past few months that I could have an opportunity for a true conversation with her about my own Faith journey, and the path I’m on right now – but knowing that while her heart would understand, her mind might not let her participate in the conversation. So instead I prayed and asked God to share with her as only he can.  I have a picture in my head of God telling her about my upcoming baptism, and her rejoicing with silent tears and pure joy and love in her heart.  I hope she’ll tell me about it someday.

She was such a classic and classy woman – full of joy, grace, love, humor, and spirit.  Gracious, humble, and kind.  Trusting, loving, caring, and forgiving.  She was a beautiful woman through and through.  I am truly blessed to have her as an example of a woman I aspire to be.

As I both celebrate and grieve her passing, I share the following verses that I feel capture my beautiful Gram perfectly, and the lessons she has taught me.

 “It is not fancy hair, gold jewelry, or fine clothes that should make you beautiful. No, your beauty should come from inside you –the beauty of a gentle and quiet spirit. That beauty will never disappear and it is worth very much to God.”  1 Peter 3:3-4

“She opens her mouth with wisdom, and the teaching of kindness is on her tongue.” Proverbs 31:26

“She is clothed with strength and dignity, and she laughs without fear of the future.” Proverbs 31:25

“You are beautiful for you are fearfully and wonderfully made.” Psalm 139:14

 

Stages

In the MRKH community, we talk a lot about stages.  Not stand up on a stage and perform to an audience type of stages, but stages of acceptance, grief, treatment, development, healing, etc.  We also talk a lot about our journey as it relates to these stages.

From a purely physical perspective, MRKH affects us all a little differently.  It’s a genetics thing, and while Amy could explain all the science behind it, just know that every attribute about us as a human is controlled by our genetic makeup, and when there are little bumps in the road, different things happen.  We didn’t get MRKH because of something our mothers did or consumed, it’s not recognized as a side effect of some medication, and there aren’t any definitive environmental links either; it is simply that at a particular moment in development of the embryo, a specific gene didn’t get the message it was supposed to create a cervix, or uterus, or vaginal canal.  Generally speaking, women diagnosed with MRKH have an incomplete reproductive system – the organs just don’t form correctly or are missing entirely.  Often, there are also related complications with the renal system (kidneys), skeletal/spine issues, and other things.  In my case, I have both ovaries, fallopian tubes, and some uterine tissue – but the news never made it to the correct gene to fuse those tissues together for a functional uterus, create a cervix, and make my vaginal canal of typical length.  Apparently, my kidneys got a corrupted message too – my right one decided to just stay and hang out in my pelvis, since I wasn’t going to get a uterus in there.  I did however get a bit of a head start on the vaginal canal – a whole centimeter of depth!  As it turns out, that was quite handy for me in the “treatment” stage.

Again, because we all have MRKH a little differently, our treatment for the physical anomalies varies as well.  It even varies greatly by country and culture.  I’m in the USA, so I’ll just speak about options here – but if you are in other parts of the world, sometimes you have very different approaches to treatment.  Additionally, because medical biotechnology advances constantly, what treatments are widely used will vary as well from generation to generation.  I was diagnosed at 18 years old, and it was 1989.  It was a time of many advancements in medicine, with procedures changing as technology advanced.  It was also during a time when “test tube babies” and treatments for infertility were getting some news time.  But I was 18 and my primary concern was “how do I stretch out the vagina so I can have a more or less normal sexual relationship?”.  Well, my doctor said that because I already had a start at some vaginal depth, it would be pretty easy to stretch it out.  I could use plastic molds to do this, or I could just attempt sexual intercourse with a gentle and patient partner and stretch naturally.  I had a fiancé, I had a trip planned after I graduated high school, and you know, I was planning to lose my virginity…so…I went with the stretch naturally method.  It was much less embarrassing to me, and as it turned out – worked just fine to get me “custom fit” for my fiancé.  Other women in the USA chose to have a vagina created surgically.  There are several procedures offered to created, and generationally and regionally they vary.  McIndoe, Vechetti, and Davydov seem to be the most popular surgical options.  I really haven’t had or needed any other treatment for MRKH.  I get regular medical care and gynecological exams, and since I still enjoy an active sex life, my vaginal depth has been maintained.  I did go to a fertility clinic at one point to discuss options of IVF and surrogacy, but again, it was in the early 1990s, and not all the states had the same laws about it, and it was not generally covered by insurance, and with the estimation of costs – the option to pursue it was taken off the table pretty quickly.

So those are the physical stages of diagnosis and treatment for me.  I found out I had MRKH, I created a vagina, I couldn’t afford to pursue IVF and surrogacy, so my treatment was basically complete.  Clean and simple, right?

But the emotional side of things has a habit of sneaking in every now and then and shaking things up…again!  So I’m sure you’ve seen the 5 stages on the road to acceptance before:  Denial.  Anger.  Bargaining.  Depression. Acceptance.  Maybe you’ve even been able to apply them to areas in your own life.  But looking through the lens of MRKH and our lifelong journey, it is not just one loss or trauma we are dealing with, but many that are intertwined.  The trauma of diagnosis; the reality of infertility; the shame in being “not normal”; the sheer nature of creating a vagina – through dilation or surgery; the grieving for children you will never have; the effect infertility has on relationships; and I’m sure the list will continue to grow.  Many times I feel like I do the 2 steps forward, and 1 step back thing.  Different things set me off, and different things have bothered me over the years.  I’m well past the denial stage, and most often I sit at the acceptance end of the stages…but then I see a meth head youngster who is pregnant and destroying the child growing inside her – and I get MAD.  Or I see a beautiful and healthy young mother who is pregnant with her 7th beautiful healthy child (yeah…this is a true story), and I get a little depressed – happy for her, but yearning for the ease of pregnancy and wondering if she’s ever had a miscarriage and could maybe understand the struggle of an infertile woman.  I don’t usually linger in these thoughts for long…but they do come up from time to time and catch me off guard.  I try and get firmly back into the acceptance stage – because it’s here where I can be the best me!

When I am in the acceptance stage, I am strong and positive.  I’ve learned from my experiences, and I’ve healed…just a little bit more each time.  I can spend my energy doing what I can to make a difference.  To mentor.  To guide.  I can talk to a young woman considering treatment options, and give her the best advice I have.  I can be happy for the healthy pregnant mom of 7.  I can enjoy the adorable pictures of miracle surrogacy babies.  I can be strong and encouraging for my MRKH sisters around the world.  I can work hard and help to raise awareness and reduce the shame of having been born with MRKH.  I can talk about not having a uterus and having to “make my own” vagina to random strangers.  And I know that I am strong enough to not let MRKH dictate my life, and to get my butt back to acceptance as quickly as possible.   The more actively I work to promote MRKH, the more healing I do not only for myself, but as an example for all my warrior sisters!

Emotional Battles

There are a lot of battles going on in the world today.  Religious battles, political battles, legal battles.  Battles that involve nasty words and media campaigns.  Battles that involve border disputes.  Battles that are violent and bloody with innocent lives lost.  Battles stuck in the court system with no reasonable outcome in site.  But today, I want to talk about emotional battles.

A couple of weeks ago, I wrote a post about Patterns of Behavior.  I talked about some of my struggles, and how I go about getting to the bottom of what is really bothering me.  Last week, I talked about buzz words and how they can spark strong emotions, and strong desires to Pay It Forward and make a difference. In case you can’t really see the obvious here, I’ll just say it simply – I’ve been fighting some emotional battles lately, and trying to figure out just where these feelings are really coming from.  While I didn’t sit down and actually journal it all out, I did spend some time in focused thinking about what exactly was going on.  Pondering, searching for the answer – or at least the identity of what I was feeling.  Usually, once I figure it out, I can find a way to work through it all.  Yesterday it finally became clear….like an obnoxious flashing neon sign… and me saying “why didn’t I see this before?!?!?!”

Guilt.

Ugh…face palm moment – truly.  When I finally figured it out, I texted Chel as I often do…and when she asked “Guilt???” I emailed her a list:

I feel guilty about spending money on a new tattoo
I feel guilty about not spending the money on bills
I feel guilty about not taking any time for ME.
I feel guilty about taking time for me.
I feel guilty about not cleaning the house, doing the laundry.
I feel guilty about not spending time at the winery
I feel guilty about spending too much time at the winery.
I feel guilty about not eating right.
I feel guilty about wasting food when I do rotations and leftovers don’t get eaten
I feel guilty for doing things that make me happy.
I feel guilty about not doing “enough”
I feel guilty for stuffing my face with comfort food.
I feel guilty for being a bad daughter.
Her response…”OMG Its almost like I wrote it….ugh…the question is how to let go of the guilt, especially the contradictory ones?”  And that’s why I love Chel…we totally get each other! So back to the focused thinking I went.  Dissecting why I was feeling guilty, and what I might be able to do about it.  I had a conversation with Google about it too…and learned that often guilt is grounded in feelings of inadequacy and shame.  Yup, yup, and yup.  Long standing issues with me, and ones I have to tackle from time to time.  Also pair it up with acts of selfishness for good measure.  Sheesh…I’m a mess!
Ok…so picking apart my list…the main themes are money, time, and taking care of myself.
Money:  there is never quite enough, but gentle reminders to myself to live within my means, stick to reasonable budgets, and make do with what you have.  Take care of mandatory bills, keep food on the table, and if you want something not normally in the budget – save for it.
Time:  that one is harder, as you can’t make more time exist.  But make lists, prioritize what needs to be done, and sometimes it’s ok to say NO.
Taking care of myself:  the hardest battle of all…but can be manageable if I prioritize and say NO sometimes.    The trick here is to find the balance, and not induce more guilt, inadequacy, or shame.
Apparently, I need to be more assertive.  Make my own needs known if they are valid.  I have to take care of my own well being.
I need to not measure myself against others, and especially I need to not chastise myself for accomplishing less than – or more than whomever it is I’m comparing myself to.
And I need to just let stuff go.  I’m one woman, capable of doing the work of one woman.  I can’t MAKE time, but I can manage and prioritize my time.  I need to not feel guilty when I make a choice to take care of myself.  I need to ensure that I am well and whole and at my best in order to be of service to others.
As I’ve mentioned before, in the past few months I’ve walked a path to more thoroughly explore and engage my faith.  I’ve made a commitment to go back to church and have some wonderful women (and men) in my life and in the congregation that have embraced me with loving open arms.  In this journey I’ve spent quite a bit of time with my nose in my Bible searching for inspiration and contemplating what I find.  I’ve also returned to an active practice of prayer.  Not just asking for guidance in my times of greatest need, but in counting my blessings and praising what is good and right in my world.  God doesn’t just want to hear what I need help with, he wants to celebrate my joys too.  Through this process I am learning that through open dialogue I can embrace a more peace filled life.  While I used to only talk to myself, and ask myself for answers to my questions – now I ask and listen to what God might have to say about things.  Knowing I don’t have to fight this battle alone…well, that leads to a sense of comfort and protection I haven’t felt in a long time.
So, on Friday I’ll be spending some time with one of my dearest friends and doing what at first felt like a very selfish thing and induced some guilt.  I am scheduled to get my next tattoo.  This tattoo will symbolize my MRKH journey and how it’s wrapped itself around my life as a whole – and it will also serve as a reminder of all that I’ve been through and the Courage, Strength, and Faith that I’ve found.  Stay tuned for pictures of course – and probably some whining about pain and itching and lack of quality sleep.  😉