A few weeks after the second retrieval Ellen calls again, congratulates me as if I've won a gold metal in ovulation, and asks if I will do another cycle.
Again, I don't consider it. I just tell her, No.
She asks why and I say I'm busy. She asks what my schedule is, tells me that she can work around it, but, really, I just don't want to do another round of hormones, to push my luck with the retrieval surgery, to feel like a luxury guinea pig, to be a part of the creation of another mystery child, to feel somewhat criminal when I deposit 8,000 dollars that could have been better spent on adopting a child instead of this elaborate luxury operation that may cost less than a handbag this mother could conceivably own and that I've become complicit in all this and why didn't these people just adopt because it obviously wasn't the money and yes, maybe the mother really wanted to experience childbirth and who am I to tell a stranger that she shouldn't want that but is being a parent really about giving birth and if I say that it isn't about giving birth, does that make me, somehow, a parent?
I don't tell the nurse any of this. I just tell her I don't want to take the risk right now.
She says she understands but that I should call if I change my mind. When she asks if they can keep me on file I just say, That's fine.
* * *
For the next year I used a chunk of the egg money to live on while I do an internship and work on a second draft of a book, then another couple thousand to buy plane tickets to New Zealand where I spent almost no money, hitch-hiked, wrote, and worked on farms in exchange for food and a place to sleep. When I get back to America I end up starting a bed and breakfast with a few friends. Between working on another draft of the book and renovating our eventual B&B I didn't have time to earn any significant amount money aside from an odd tutoring gig. Everything that year was an act of faith in the eventual success of the business and selling a manuscript, but nothing was guaranteed.
I thought, immediately, that I needed to Google "Fragile X" (Seriously, could they come up with a scarier name for a gene sequence?), but I knew if I started Googling then I'd fall into an Internet wormhole and start assuming the worst.
I was three hours into refinishing a hardwood floor -- Did I actually know how to do this? No -- when I got a call from the agency. Another perfect couple had come around -- would I reconsider?
I had been steaming a questionably toxic glue off the floor of a building that was last renovated in the era of asbestos. The hormones, in this context, didn't seem like much of a risk and the $8,000 would have been a gigantic relief to me, as would a free health exam since I was without insurance. The long-suffering boyfriend was no longer around.
I didn't need to consider anything. I said, When can I come in?
Tomorrow, she said. They'll need to do some basic blood work and one more new test. No big deal.
A week later I got a call about when I am supposed to start the Lupron except the nurse doesn't say anything about Lupron. She says, Well, I'm afraid I have some bad news. You know that new blood test we had you do? Well, as it turns out you are, in fact, a carrier of Fragile X.
I'm a what?
Fragile X. It's a gene. And you carry it. It's a low positive, but it's a positive.
What does that mean?
Well, there's not much I'm trained to tell you about it, honestly. Just that you're a low positive carrier for Fragile X. I can refer you to a genetic counselor if you like.
No, that's OK.
Good luck, she said.
I thought, immediately, that I needed to Google "Fragile X" (Seriously, could they come up with a scarier name for a gene sequence?), but I knew if I started Googling then I'd fall into an Internet wormhole and start assuming the worst, so I laid on the floor of my room and thought of millions of tiny, crumbling, fragile Xs twisted in my DNA, doing some mystery to my body or the future of my body or the future of any children I could ever have. I thought, again, that I should get up and Google it, find out what it really means, but also that I shouldn't play the part of my own, uneducated, alarmist genetic counselor.
I won't Google it.
I might Google it.
I could just see what it is, quickly?
No -- I shouldn't start. I knew I shouldn't start.
* * *
Being a carrier of Fragile X, or any genetic mutation for that matter, isn't as simple as having it or not having it. Mostly, genetic testing can only reach broad conclusion: you carry an ignorable amount of mutation, you carry a little bit, you carry a lot of it, or you have a full-blown permutation. Whether or not it is expressed or passed on is up to chance and epigenetics, which is the whole other way that genetic traits are expressed or not due to methylation or other factors that affect the transfer of genetic information into corporeal symptoms.
But the scary reality about Fragile X syndrome (which is distinct from simply being a carrier) is that it is the most common known cause of autism and other cognitive disabilities. Though the syndrome rarely affects women, being a carrier means about a 20 percent chance of early menopause and premature ovarian. As a woman entering her late 20s who couldn't conceive of becoming a parent before 30-something, I was floored. Even if donating my eggs hadn't caused some kind of unseen damage, I may have to eventually face the unnervingly modern predicament of not being able to have my own children while knowing that someone else already did.
* * *
A few weeks later I got another call from the agency and I feared the worst. Maybe they're offering me free genetic counseling out of pity or breaking their own rules to tell me that my ova produced a child with autism or maybe they've discovered it's even worse than previously thought.
Nope. None of the above.
They're asking me if I want to donate again.
We have a couple here that doesn't think your low positive for Fragile X is really a risk.
Instead of answering, I stammered out a confused questions about what being a Fragile X carrier really meant. Slowly, after a series of emails I got some critical information I didn't have when I fell into that Google blackhole:
I am an intermediate carrier, meaning that somewhere I have between 40 and 55 CGG repeats on the FMR1 gene. Technically, this made me not a "Fragile X carrier" (they have 55-200 CGG repeats) but an intermediate or "gray-zone" carrier. The main risk an intermediate carrier faces is that the permutation would be passed down the line, resulting in a grandchild or great-grandchild with autism. The chances of this are murky, but not exceptionally high.
But the difference between an intermediate carrier and a regular carrier is a single CGG repeat, the tiniest sliver of information on a gene. Knowing that I was less than hair's breadth from early menopause (which carries unpleasantries aside from just making childbirth difficult) didn't make me feel fully exempt from it. Genetics and epigenetics are new and not entirely exact sciences and having way more information about my own DNA was now stirring up more worries than the original test back in 2008 had calmed.
The agency called me a few more times before I finally told them to take my name off their list.
* * *
It's hard not to wonder how those possible kids turned out, but of course I signed away the right to know. I used it to buy time, to finish a book that I did finish, which an agent is shopping around now. More often I just imagine my presence as a running joke in those two families, the perpetual scapegoat for anything the parents didn't want to rise out of their mess of DNA. She's always picked last for softball teams -- blame the donor. She has ADD -- blame the donor. She caught a cold, has a pimple, doesn't like pineapple -- blame the donor.
The mother will laugh every time, maybe a little too long, after her daughter has already left the room. You didn't get that from me, she'll say. Nope, not from me.