Recently I was thinking about the death of one of the richest 56 year old men on earth to a deadly disease. And my thought was …” all the kings horses and all the kings men couldn’t put humpty dumpty back together again.”
If anyone had the means to beat this always fatal disease-it was him. Yet all the money in the world and all the brain power of the best oncologists couldn’t help him beat it.
It’s a staggering thought really.
I simply can’t imagine what he must have thought having the firepower he did, the moment he realized no matter what he did, or how hard he worked he couldn’t beat cancer.
And then I realized, I can imagine EXACTLY what it feels like. There is a disease (yes ladies and gentleman-despite the fact that the vast majority of insurance carriers would say otherwise) of my reproductive system. Which at this point I think we can all agree, is clearly not functioning as it’s supposed to.
What we are struggling with now is so oddly similar to that mans’ fight that it shook me to my core when I realized it. In an attempt to gain perspective from his fatal battle with cancer I said aloud to myself…
“See self?? It could be much worse, you could be in a fight with a fatal non curable disease.”
However, as soon as my lips stopped moving, my brain and heart started screaming. And that’s when it hit me. One of the most profound realizations about why we are so destroyed right now came to light.
That is what makes struggling with the failure of your reproductive system so crippling. This disease is every bit as fatal as cancer, only with one horrible caveat-at the end, you physically remain alive and will spend the rest of your days on earth mourning the death of the life you always wanted.
Even someone who isn’t infertile might be able to understand why this disease is so crippling to us if they could wrap their mind around that-and perhaps try to live that reality in their mind for a few minutes.
Our life, while going through this battle, has ground to a screeching halt. We have already experienced the death of the “old” us. That happy, ignorantly blissful us who got married, bought that big family house with the yard, in the burbs-then proceeds to spend 3 years and lose 6 pregnancies while trying to turn one of those damn empty spare bedrooms (that currently mock the “new” us) into a nursery.
This “shell” of the old us is is in the middle of the battle with infertility-we know we can never go back and we are scared to death (literally) about looking forward- because if we lose this battle, we are faced with the fact that we have to go on living our lives even though the future life we were supposed to have is also dead.
Infertility is fatal…to your life long dreams.
Becoming Parents 
It’s hard to answer you truthfully because everyone will admonish me for saying such things. Because the chipper people of the world always hush you when you dare to be dark.
When I was in the hospital and they were trying to get me to realize the gravity of my situation, they kept telling me I was going to die. And I kept telling them that I didn’t care. They really did not get it through their heads that the thought of dying along with my girls had absolutely zero emotional impact. What finally scared me into allowing them to save my life was when my doctor looked at me and said “if you don’t do anything until after their hearts stop, we might still be able to save you, but we’ll have to remove your reproductive system in order to do it.”
The thought of surviving with no hope of ever being able to get my kids. That was the fate worse than death that allowed me to consent to having the doctors save my life. Had they kept insisting that I would just die, I would be dead right now, and it would be easier.
I haven’t been through as much as you’ve been through, but my cousin has. She went through 12 variations of IVF, and lost 8 pregnancies. Most of them in the second trimester. One of them was through a surrogate. I never really spoke to her until after her struggle, but she admitted to me that she had reached the point where she was done. The hope was gone, it wasn’t worth the struggle anymore, she had reached the limit of what a person and couple could endure. But they still had one embryo on ice. She decided to go ahead with that last FET and let that embryo die inside her body instead of dying as medical waste in a lab. That’s what she firmly believed was going to happen and she was fine with that.
THAT’s the baby girl she took home a year ago.
I’m not being chipper and telling you it will turn out ok because we both know that I have no authority to guarantee that. I can’t guarantee you’ll ever get what you want, I can only guarantee that if you don’t continue to do what’s hard by surviving every day and keeping up the fight, you most certainly won’t. We feel most hopeless when hope still exists. When hope is truly, really, totally gone, we are washed with peace and acceptance. You’re in the hard part now. And damnit, even those of us in the club with you can’t hold a candle to what you’ve already been through. But in those darkest moments when you’re upset and feeling hopeless, remember what I just said. You can only feel hopeless when hope still actually exists. That’s why it was one of the evils contained in Pandora’s box.
“Doubt is a pain too lonely to know that faith is his twin” –Khalil Gibran
I’m not sure that I can believe that I will ever be washed with peace and acceptance if I am left to live in a childless life. Perhaps robbed and mift?? Ive read too many blogs of women who have no children and no hope and they all seem pretty bummed out by it still. I suppose because in your childless life-you can never get away from the constant reminders? Its a dark place to even really hang out too long and think about 😦
Wow.
I came across this site after looking up “miscarriage” (my sister just had one for the third time).
I had never thought about infertility in this way. I cannot imagine that I will ever have the right thing to say to someone who is going through your heartbreak and struggle, but this blog entry really gave me some food for thought (with a large side order of tears).
I appreciate you for sharing this perspective. Like (I would imagine) most people who are not in your shoes, I wish I knew what to say, but that level of wisdom eludes me.
Thank you for taking the time to respond after stumblingupon!
When we were kids (please know my entire neighborhood was boys and I was the middle sibling between 2 brothers)-we would play this game-it really had no name but I guess it would be called “would you rather” where you would come up with 2 scenarios…”would you rather slide down a razor blade slide into a pool of rubbing alcohol or jump off a roof and land on a bicycle with no seat??” Of course you would rather do neither-but if you had to pick one-which of the evils would it be?? The challenge of that game would be to make the kid next to your squirm and not be able to pick one because they were both horrible. The question I posed was very similar, there is no right or wrong thing to say-just one thing that would suck less in someones mind than another. But yes, while at it-certainly an “aha” perspective moment as to why this truly sucks as much as it does.
This is the most amazing perspective on IF I’ve seen. It definitely is an illness that robs us of our ability to live normal, healthy lives. The choice you’ve presented is an impossible one for me. After 4 losses, I’ve definitely had moments when I think I cannot go on, but living out the rest of my life with no family is devastating. It’s a decision I pray that I never have to make.
Exactly. On all accounts!
HI Brooke! I would choose living the life I wanted and having it cut short. My step-children’s mother died at the age of 33 of brain cancer. I actually knew here ( it’s a long story but no, we weren’t friends) All she ever wanted was kids and she got them. Dommie was 5.5 when she died and Andrew was 1.5. She enjoyed every moment of her dream with her kids. I could never imagine her life with out kids in it. I, however, always felt being an infertile was my destiny. I felt it. I couldn’t see it. But anywho, I would choose unconditional love and having someone call me mom even for a short time than always try to reach for that carrot that I am not gonna get touch.
-Jacqueline ( lilyfritz)
Me too Jacqueline, me too.
I just saw your post linked on the Stirrup Queens website. What a resonant post for me. If I could make people – my family, may partner – understand that one sentence. That this is not just a disappointment. I’m not be a spoiled brat. This is me, beginning and terrified that I will have to, mourn the death of the life I always imagined for myself. Thanks for writing this post – and sharing it over at the Stirrup Queen site.
This is such an incredible post that recaps the way I feel right now. I will link to your post from my blog – but will take it down if you wish. I wish family/friends could understand this notion. Thank you for articulating it so beautifully!
What a great, beautifully written post! I’ve never really looked at IF that way, but you’re absolutely right! And even if we do manage to come out of it with a baby (or maybe even two), we will never be the same – our careless selves will have “died of infertility”.
This really resonates with me. I feel like it is so great to be able to give myself permission to feel some of the crappy emotions that I face. One of the hardest parts of infertility for me has been not feeling “free” to feel not okay. Thank you for writing this. Thank you for releasing me to a greater freedom to struggle in this difficult situation.
Wow! Is all I can really say. I remember feeling so hollow, so empty and scared to death of not being able to grasp onto the dream that everyone else around me were able to achieve so effortlessly. And now that I have my family, there’s still a piece that misses the blissfully happy life I was supposed to lead without struggle. I have an almost 5 year old and 2 year old b/g twins, so my life struggles take on a whole new meaning. But, I am still immersed and feeling like there was a purpose for it all. Like, today, looking on the Creme de la Creme list and reading this. We are all in this together. Looks like your dreams are coming true according to your newest ticker. Congrats!!