Freak of Nature

In the publishing wing of my current denomination, there is only a single title concerning infertility.  Just one.

Moreover, the spiritual advice in this single title is almost entirely about enduring IUI and IVF and other treatments.   There isn’t a line anywhere in the book that confronted the primary question in my mind when I was diagnosed as infertile:  what, under God, are my moral and ethical boundaries for treatment?

I want to follow Christ, and His calling on my life.   I thought this meant marriage and motherhood.  If it doesn’t, however, I’m willing – however painful – to bend to His yoke, to follow His path.  This perspective has left me even more lonely on the already-isolating journey of infertility.  I’ve begun to feel like a freak of nature, since I am constantly philosophizing about my plight rather than getting on with “treatment” or adoption.   All of the infertility books I’ve seen start with the question of how “women” in general yearn for motherhood.   The only question is what a woman wants – and what she can do to get it.   It’s a valid question, of course, but where am I going to go for support and encouragement if I’m making the difficult choice NOT to pursue my own ends – to do nothing?

The only place I have found real spiritual comfort is in Thomas Kempis’ Imitation of Christ. It is not trite, it is not simplistic; it reminds me that my goal is to love and follow God – everything else must be subordinate.  I may be totally alone in my pursuit of non-pursuance.  I may be a freak of womanhood.  It doesn’t matter.   Only my obedience counts.

Oh, how great peace and quietness would he possess, who should cut off all anxiety and place all his confidence in God!”   — Thomas Kempis (1380-1471)

 

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Surgery

A week and a half ago, I *finally* had surgery to remove endometriosis.   I had to travel four states away to get to a doctor who was willing to do this surgery.  I had endometriosis excised; I had a fibroids removed; my appendix was taken out; and the presacral nerve on my uterus was cut in an attempt to reduce pelvic pain.   I was also diagnosed with adenomyosis, whose only cure is hysterectomy. 

This “recovery” is…difficult.  I’m in some physical pain but substantial emotional turmoil.   My hormones have been turned upside-down and inside-out.   I have no emotional equilibrium right now; I’ll cry at the drop of a hat.  And of course, no support network.   I’ve had two or three people say “if you need anything let me know”, but no one says “I’ll come over and just talk to you so you’re not alone.”  

In three or four months, my husband and I can try again for children, with possibly a greater chance of success.   In the meantime, I just have to keep myself from falling apart again.   Right now, that seems like a Herculean task. 

 

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On Suffering Alone

Today I came across this blog post:  Don’t Struggle Alone.

Now, I’m struggling to find words that summarize my response to a post that seems to want to give a universal message without considering universal experience.   Part of me reacts with condescension:  “You’ve been sick for two months?   Oh honey, please wait until you have over a decade disability and chronic pain under your belt before you try to tell people how much great insight you’ve learned from this ‘season.'”  The other part of me wants to laugh:  “All your many friends are super eager to ‘walk’ with you through your struggle?  Wow, what’s it like to HAVE friends?”

I know that both these responses expose my own prejudices.   I know that my experience with suffering isn’t any more universal than hers.   Yet I can’t kick the feeling that such blithely cheery posts undermine the very real isolation that things like chronic pain and infertility bring with them.

As I’ve mentioned before, it felt like my support network evaporated when I was diagnosed with infertility.   Suddenly, I was struggling very much on my own to find doctors and options that were both helpful and within my belief system.  It’s still an ongoing struggle.   But no one wanted to share it with me.   Family I had relied on my whole life were exasperated by any mention on illness or bad health, telling me that I just needed to “drink more water” or “try harder” to get out of depression.   The few budding friendships I’d made in this new city shriveled up and disappeared as I found previous activities to be more and more difficult with pain.   People at church stopped praying for me, as my “immediate” problem became a “chronic” one.   No one remembered that I was still suffering.   The isolation and the loneliness bred depression which, coupled with my natural introversion, sank me deeper into alone-ness.

Even after a year of being treated for severe depression, that alone-ness remains.   In my experience, human beings – even Christians who pride themselves on their desire to “care for others” – aren’t emotionally equipped to deal with long-term problems.   We are all willing to help people through short-term problems: moving, a new baby, a brief hospital stay, a major injury, etc.  But after about three months, we lose interest in the problems of other people.   We assume that everything is “fixed”, that problems have easy solutions, that a person in chronic pain has learned to deal with it.   We stop caring.

People cared in the short-term when I lost my hearing.   I experienced an outpouring of love, support, generosity, and compassion.    After a few months, however, I was left alone.   Then I was diagnosed with endometriosis and infertility.   No one came running back.   It seemed like I’d used up my compassion-quota among people I knew.   How could I expect more support, especially long-term emotional support, when they’d had enough?   I found it extraordinarily difficult to make new friends.   Who wants to start a new relationship with someone who is already a burden?   Best leave her alone, to suffer alone.   And infertility…the epitome of loneliness, to have an empty womb.

In theological terms, I know I am not alone.   God is with me; and in so far as my suffering is united to the suffering of Jesus, I know it is not purpose-less.   I am suffering in communion with Christ and His saints.   My character is being refined, and His strength is made perfect in my weakness.

In practical terms, though, I am wrestling with this deep jealousy of people like that blogger who “know” what it’s like to have a community of support.   I’m jealous of the extroverts who remain popular even when they’re sick, who can garner love and compassion without any effort.   I’m jealous of the people who suffer and are cared for, who have doctors who acknowledge their suffering, families who rally around them, communities and churches who care deeply for their well-being.   I’d love to be one of them, to feel like I have people in my life who love my husband and myself despite our neediness right now.   I’d love to NOT struggle alone; but sometimes we are not given that choice.

 

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Easter Gladness

Job 19:25 For I know that my Redeemer lives,
    and at the last he will stand upon the earth.
26 And after my skin has been thus destroyed,
    yet in my flesh I shall see God,
27 whom I shall see for myself,
    and my eyes shall behold, and not another.
    My heart faints within me!

This has long been one of my favorite passages of Scripture.   In the midst of acute suffering, Job proclaims his belief in the Redeemer and the Resurrection.  Job’s flesh was being destroyed, and yet still he knew that one day healing and wholeness and full consolation would be his.

Last Sunday, my pastor used this text to introduce his sermon on the resurrection of Lazarus.  I spent most of the service choked up, trying to hold back tears of grief and joy as I renewed my faith in the God who enters our sorrows, who weeps with our grieves, and then changes our ashes of mourning into the adornment and beauty and gladness of a bride.  It was a bad day for me; I spent four hours at a baby shower for a friend, watching other women play with their perfect babies and bask in the glow of approaching motherhood.   I fought to hold back the tears over my own infertility, my own physical brokenness.  I was in crippling pain that day, from endometriosis.   And I struggled, as always, simply to hear through my deafness.

In all of that pain, I needed to be reminded of the Resurrection.   It sometimes feel as thought I am daily walking through “the valley of the shadow of death.”   My body fails me, and then tortures me.   I am barren, with no life growing within me.   There is nothing to contradict the idea that I am a desert, an “owl in the wilderness, an owl among the ruins”.  And yet – there is the Resurrection.   Jesus has put death to death; He has removed the sting of the grave.   He wept with Lazarus’ sisters, sharing in their grief, but then he removed its cause.   He called Lazarus to come forth – and Lazarus came, healed of his illness and restored to his life.   I yearn with every atom of my being to hear His voice calling me forth, out of death and grief and sterility, into the joy of His presence.

This is the hope that I cling to: the promise that I can drink from the rivers of living water.  That my desert will become a garden.   That my suffering has meaning, I don’t have to endure it in fatalistic futility, because not only Christ’s Passion has given meaning to all suffering, and Christ’s Resurrection has given us the sure comfort that death and pain are NOT how it was meant to be, and NOT the state that God will leave us in.   Someday, my body will be healed, the tears will become laughter, and I will bask in the fulfillment of the promises in Isaiah:

“Sing, O barren one, who did not bear;
    break forth into singing and cry aloud,
    you who have not been in labor!
For the children of the desolate one will be more
    than the children of her who is married,” says the Lord.

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Still No Positives

My period’s late.   I’ve always been irregular, but with Clomid the past few months, I’ve actually been able to tell the exact day it will begin.   Now, it is three days late. I’ve got all the “normal” symptoms of approaching menstruation, like extreme fatigue and the feeling that white-hot ice picks are stabbing me in the uterus, just no bleeding yet.  I wish it would hurry up and get it over with; anticipating the Killer Menstrual Cramps of Doom is sometimes almost as bad as the cramps themselves.    I also have guests coming for a long weekend, and it would be so much more pleasant if I could entertain them rather than lie in my bed whimpering. This morning, I started to wonder if there were a “good” reason for the late period.   Maybe the Clomid actually helped this month!  Maybe these pains are symptoms of implantation!   Maybe, just maybe, this month will finally be THE month! It isn’t.   I tell myself every month that I’m inured to the hopelessness and the sadness of a negative pregnancy test.   But I’m not.

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Endometriosis Awareness Month

I have endometriosis.     

Endometriosis sucks.    Sometimes I like to imagine the disease as that machine created by the six-fingered Count Rugen in The Princess Bride – you know, the one where it uses a water wheel to suck years of your life away through pain.   For eight or so days a month, Prince Humperdinck storms into my uterus every day and cranks that thing up to fifty.    You remember Westley’s screams?   Yeah, I recognize those.   They’re the ones I try to stifle with my heating pad.     

Worse, endometriosis is, in my personal experience, minimized by health professionals and dismissed by many family members as a psychological attention-seeking gesture.   I’ve been through four ob/gyns in the past three years, because the first three insisted I was “exaggerating” or “making up” the pain — because I only saw them when I was not in pain, since the pain is so bad when it hits that I can’t drive to a doctor.   My sister has told me that I “just need to change [my] perspective”.   They don’t see what I experience:  crawling to the bathroom to throw up from the pain because I can’t stand up; going to bed at 8pm, completely exhausted; physically, emotionally, mentally drained from fighting my uterus; crying over the children that I will never have. 

Endometriosis isn’t just “period pain”, and it isn’t “just” infertility.    Unlike breast cancer, endometriosis is a woman’s disease that receives very little research and funding.   There are only a handful of endometriosis specialists in the entire United States.   And yet, millions of women have this disease.   

It’s time for us all to have a conversation on why we let this disease continue to slowly suck our lives away.  

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Twelfth Night

Twelfth Night already!  Happy New Year!

What a start to the year it’s been….we had a happy Christmas and celebrated our tenth anniversary.   Ten years.   Amazing, wonderful, sad, crazy, loving, depressing, happy, through-sickness-and-health, ten years.

Immediately on our return home, however, one of our cats died.  Our favorite, oldest cat – the most intelligent, bossy, dignified feline I’ve ever met.   We rescued him a year after we were married, and he’d become my husband’s inseparable companion.   A little like our oldest child….and he died in my husband’s arms.   He had good life with us, but we miss him dearly already.    We have two other cats still, but no one will ever be quite able to take his place.

And now I’m down with the flu.   Nothing worth blogging about — for once it’s a nice normal illness that anybody might have and that I know will resolve in a short span of time.   It’s rather nice to have something normal wrong with me!  So much easier to explain to other people!

I’ll take both good and bad this year…to remember my blessings even while struggling on with the ongoing problems of infertility, of endometriosis, of doctors, and of course, of my dissertation.

Christus
Mansionem
Benedicat

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