Don’t You Wish Your Girlfriend Was a Freak Like Me?

When I was eleven years old, I went on a school skiing trip in the Sierra Nevada mountains, a few hours’ drive from where I lived in Spain.  Already tall for my age, skinny, and knobbly-kneed (my mum used to call me “Olive Oyl” or “Baby Giraffe”) I was unused to my higher centre of gravity.  Skiing was, putting it mildly, something of a challenge.  But I was determined to give it my best shot.  Besides, the thrill of the wind in my face as I snow-ploughed my way down a hill was intoxicating. I fell down a lot. After a few days, I tried a more ambitious slope. My shorter friends happily sped down the mountainside.  I, on the other hand, somehow ended up veering to my left and onto a frightening new slope.  It was icy and textured, like thousands of little rocks were beneath the ice. My skis shuddered as they glided over the ice, and I had a hard time stopping. Soon, I fell. I tried to move, but each time I slid further down the slope. At the bottom of the slope, not so far below where I was crouching, there was a flat, round patch of ice.  I got it in my head that it was a glacial pond, and that if I landed on it, I would be dragged under and quickly drown. I kept trying to get up but kept slipping further towards the pond. After several attempts, I clung to the mountainside and wept, terrified.  Some time later, a Spanish man with a look of kind determination on his face, confidently skied over to me and put out his hand.  He towed me back to safety, and together we skied slowly to the bottom of the slope. I only remember saying Gracias and he was gone.

♥

The elation of being matched with a fabulous donor has worn off and the reality of what we are about to do has set in.  This has been aided by several things.

First, learning that, allowing for the attrition rate of

1) number of eggs retrieved (say, 16), that then
2) are mature (13), and then
3) fertilise (10), and then
4) survive to Day Five (8), and finally
5) test genetically normal,

we end up with just six embryos. Six! That might sound like a lot to a regular Fertile, but to me that means we have a total of three chances of having a baby. Three, because we would transfer 2 embryos at a time — the success rate is far higher when transferring two, even though there’s a good chance (30%) of having twins. There’s also a 30% chance that each of these three transfers could fail.  Put another way: I have as much chance of having twins as I do zero children from six embryos.  Those are stark numbers indeed.

Of course I’d rather have twins than nothing, that should go without saying.  But everyone seems so excited by the prospect. Twins are a novelty.  Twins are two-for-the-price-of-one. But a high-risk pregnancy, on bed rest and a caesarian delivery where my babies are whisked away at birth and put in the NICU for a month or two, is not exactly what I had in mind.  And don’t even make me think about the higher risk of birth defects twins can have — the very thing we are trying to avoid by using donor eggs.

Second, I have moments where I’m living in the future.

Oh, we must be careful to slowly introduce tomatoes to the kiddos — what if they inherit my allergy?

**FAIL BUZZER**

They won’t inherit shit from you, Lauren, remember?

Another day, when DH goes for a blood test to see if he carries the gene for Cystic Fibrosis.

It doesn’t matter if you do, babe, because it’s a recessive gene — meaning both parents have to carry it — and I tested negative.

**FAIL BUZZER**

Hey, Lauren! You’re forgetting that your genes don’t matter! Remember? Cheer up, Nellie tested negative, so you’ll be fine!

Oh. Yeah.

Third, at least DH has a normal male karyotype — 46,XY.  It broke my heart when he asked if that made me feel worse.  Of course it doesn’t — I am so relieved that he is genetically normal.  But I understand why he felt the need to ask.  I am truly alone.

Fourth, my genetic truth is beginning to sink in.  What do I look like to a genetic counsellor? When I say alone, I mean this:

THIS: 46,XX,inv(8)(p21.1q23.14)

If you’re female and reading this, chances are you’re simply 46,XX without all that extra ugly shit at the end that is absolutely unique to me. I look at that string of letters and numbers and think, Ha! that would make a really good password, and then my face darkens. If only I could rub out the ,inv(8)(p21.1q23.14), maybe everything would be alright…

Fifth, in the meantime, I emailed our Egg Donor Coordinator to see if she could match me with a woman who, like me, has a genetic anomaly and proceeded with donor eggs.  Her response? There is no one. No one. Of all the reasons why a woman would need donor eggs, there is no one in this clinic’s database who has a genetic anomaly. There are men and women for DH and me to talk to about the egg donation process, challenges, emotional rollercoaster, but there is no one who understands what it feels like to learn that there is something seriously fucking wrong with you at a fundamental genetic level.  I am a freak of nature.

Six, I applied for membership to — and was fucking accepted by — Unique (www.RareChromo.org). I joined the pericentric inversion of chromosome 8 section and saw there are only SIX (that fucking number again) individuals listed.  I will be the 7th.  Only one other person has similar breakpoints (the two parts of the gene’s “barcode” between which the genetic information is flipped 180˚) but not identical.

DH tried to put a positive spin on it. He said I am the only one who gets to have this experience — if you’re going to experience infertility, isn’t it more interesting at least to be the astronaut stuck on Mars instead of the moon?  I can see his logic, but as I said to him, I didn’t choose to be catapulted into outer space.  I want to stay on earth. I want to be conventional. At least the astronaut on Mars can have a little fun walking around. There’s nothing fun about this.

Meanwhile, DH came up with a theory that chromosomes become inverted when nature is trying something new — it’s how we split off from the rest of the ape kingdom, he surmised. And you know what? My brilliant husband is absolutely right.  I am living proof of the evolution theory. Don’t I feel so special?

No, I don’t. These days I feel like I have more in common with the specimens in jars at the Mütter Museum (trigger warning: don’t explore the site if you are squeamish). I am what geneticists call ‘underdominant’ (i.e. someone who is likely to miscarry over and over again). I am the experiment that didn’t go completely wrong (because here I am, living and breathing and outwardly ‘normal’) but didn’t go completely right (I cannot reproduce).

So, DH is genetically normal and has good sperm.  I am abnormal, but have a good uterus. We’ve both tested negative for HIV, HLTV, and a host of other pre-IVF tests. We’ve been matched with a fabulous donor. Full steam ahead with DEIVF. Next stop, mock cycle in as early as 3 days to a week. I should be excited, right?

Wrong.

I feel like I’m clinging to the side of the mountain at the bottom of which I can see there’s a pond covered in thin ice.  It’s a slippery slope I’m on, and I can easily see myself falling into the icy waters of depression. I’m fighting it, but it’s so hard when all around me people are pregnant or have young families, blissfully unaware of what it’s like to struggle and make tough decisions.  And I know I have to fight, even though I’m exhausted, because I know there’s no man with a kind and determined expression who will come and save me.