The fictional autobiography of conjoined twin sisters Lily and Rose continues, as they juggle marriage, parenthood, and career ambitions while living in a world not designed for them.
Part 5 includes the following chapters:
Chapter 14: World Conjoined Twins Day, part 1
Chapter 15: World Conjoined Twins Day, part 2
Chapter 14: World Conjoined Twins Day, part 1
Since we’d more-or-less become public figures in our own state and our TV ads were now on YouTube, one of the major television networks discovered us and tracked us down and invited us to New York to appear on their morning talk show as they recognized World Conjoined Twins Day on November 24, a few days before Thanksgiving that year. We discussed with them what they had in mind for us to do, and we had no objection. Since we were between jobs, we accepted their invitation. This was another example of the kind of publicity we were willing to receive. Rather than being the main attraction at a freak show, we were being asked to provide our personal perspective and insight on a matter near and dear to our hearts.
Nick wanted to come along, and since we’d be in their part of the country, we invited our cruise friends Austin and Megan to join us as well. We and they arrived in New York a couple of days early, and so we saw the sights and dined in a few of the famous Manhattan restaurants and took in a Broadway play. Nick, Austin, and Megan were all in the studio audience during the airing of the morning show.
Host: Welcome back, everyone. In 2024, the United Nations proclaimed November 24 each year as World Conjoined Twins Day. In recognition of that, we’re going to raise awareness about this condition and discuss some of the challenges that conjoined twins and parents of conjoined twins commonly face, including medical, ethical, social, moral, and legal dilemmas.
Now, if you’re not familiar with the term ‘conjoined’ twins, you’re not alone. Conjoined twins are twins who were born physically joined together in some way. In the past, such twins were called ‘Siamese’ twins, but that term has fallen out of favor. In some cases, conjoined twins can be surgically separated and go on to lead normal lives. In other cases, any attempt at separating them would be fatal to one or both twins, and so they live their lives permanently attached to their sibling.
With us in our studio today are a pair of conjoined twins who could not be separated, here to provide some insight into the challenges and dilemmas they’ve faced and continue to face, and to advocate for all conjoined twins everywhere. To protect their privacy, they’ve asked us not to disclose their last name. Please give a warm welcome to conjoined twins Lily and Rose.
For everyone’s benefit, ladies, please first explain the significance of your names, and then tell us a little about yourselves.
Lily: Certainly. Our parents gave us the names Lily and Rose to try to make it easy for people to know which of us is which. As you face us, I’m the twin on your left and so I have the ‘L’ name; my sister is the twin on your right and has the ‘R’ name.
Rose: Conjoined twins can be attached to each other in a myriad of different ways. Most are joined at either the head or torso in some way. Lily and I are a specific type called dicephalic parapagus twins, which means that we have separate heads and necks but have a single torso that’s joined along its entire length. Inside our body, we each have our own spines, hearts, lungs, and stomachs, but we share a single liver, intestines, bladder, reproductive system, and so on. Because we’re so extensively joined and share so many organs, there was no possible way to separate us.
Host: Would one of you explain to our audience how twins can become conjoined in the womb?
Lily: Well, first, twins who are separate can’t become conjoined. It’s actually the other way around. All identical twins start out as a single embryo, and in nearly all cases, that one embryo fully divides into two separate, identical embryos shortly after conception, and becomes two separate, identical babies. For those of us who are born conjoined, the embryo division process started but didn’t finish for some reason. It’s not possible for fraternal twins, or non-identical twins, to be conjoined, because they were always separate embryos from the very beginning.
Host: I see; that’s very interesting. So conjoined twins are always identical. I suppose that means they’re also always the same sex as well.
Rose: That’s correct. Another mystery about conjoined twins is that about 70% of us are female, unlike the general population, which is close to 50% male, 50% female.
Host: In the spirit of the UN resolution, let’s talk about some of the challenges and dilemmas you face as conjoined twins.
Lily: Well, first, it’s important to realize that despite sharing a body, we are two distinct people. We are not a woman with two heads; we are two women in a single body. Our minds are completely independent of each other. We have different personalities and hang-ups and likes and dislikes. We can’t read each other’s mind or communicate telepathically. We communicate with each other by talking. Sometimes we’ll disagree about something and we have to work it out between us, just like anyone else would do. We each have our own birth certificates, our own Social Security numbers, our own driver’s licenses, and our own passports.
In a nutshell, our society always assumes that two people will have two separate bodies, and a single body will only be occupied by one person. Those assumptions are obviously incorrect in our case, and we constantly have to battle against them. An easy-to-understand example is when we go to book a flight. We only need one seat, but we have two sets of IDs, each with our own names on them. Try getting a single airline ticket with two people’s names on it. The system isn’t set up to accommodate that.
Host: Yes, I can see how that would be a problem for you.
Lily: It’s a problem for us every single time. And that’s just one out of an endless number of examples we could provide.
Host: I understand you had a similar issue when you wanted to get married.
Rose: Yes; that’s probably been our biggest battle to date, and it still isn’t completely resolved. We doubt it ever will be.
Host: Please elaborate, if you will.
Rose: As I mentioned earlier, we have one shared set of reproductive organs and lady parts. Because of that, it was a dilemma for us whether we should marry one man or two. We thought long and hard about it and concluded that marriage would only work for us if we had a single, shared husband. By the way, there was a big moral dilemma involved there as well, but I want to focus on the legal roadblocks. We fell in love with a wonderful man we wanted to spend the rest of our lives with. But nowhere in the world is it legal for one man to be married to two sisters, not even in Muslim countries where multiple marriages are otherwise allowed.
Legally, our choices were to stay single for the rest of our lives, or for one of us to marry while the other remained single, or to each marry different men. None of those choices were acceptable to us.
With a lot of help from some influential people, and a lot of effort on our part, we obtained an exemption from our state’s marriage law, and we were able to get separate marriage licenses and later, separate marriage certificates, each with the same man’s name on them. Our state legally recognizes that we’re both married to the same man.
The problem remaining is that our marriages are only valid within the boundaries of our own state and only as far as our state government is concerned. The federal government will not recognize both marriages, and neither does any other state or country. Mostly that means that only one of us can file our federal income taxes with a status of married and get the lower tax rate; the other of us must file as single and pay the higher rate. But we can never live anywhere else without the risk of our husband being arrested and charged with polygamy. We’ve been told that our chances of ever getting an exemption to federal law, or of getting the law changed, are exactly zero.
Host: So it’s the same kind of problem that gays and lesbians had when only a handful of states allowed them to get married and the federal government didn’t recognize their marriages.
Rose: Yes, it’s the very same problem, except that they had strength in numbers and were able to shift public opinion and eventually get the law changed. There aren’t enough conjoined twins to ever do that. Ironically, it was the very law that made gay marriage legal throughout the land that expressly prohibits federal recognition of plural marriages like ours.
Host: That’s unfortunate.
Rose: Tell us about it. I want to also make it clear that not all pairs of conjoined twins want to marry the same person. We’re all different, and it makes a huge difference exactly how a set of twins is conjoined. For twins joined at the head, for example, they might want to marry two different people, which the law allows. Exceptions really need to be considered on a case-by-case basis.
Host: I know you want to protect your privacy, but some of our viewers may want to know which state allows conjoined twins to marry the same person. Would you be willing to share that with us?
Rose: To be clear, our state didn’t pass a law allowing conjoined twins to marry the same person. It passed a general law allowing an exemption from an existing law to be considered and granted on a case-by-case basis, if it could be shown that that law was inherently unfair to someone with unique or unusual circumstances. We went through the process of getting an exemption from the law prohibiting polygamy, but that exemption only applies to the two of us and our husband. If another set of conjoined twins in our state also wanted to marry the same person, they’d also have to go through the same process to get an exemption that applied to them.
We’re reluctant to say on the air what state we live in, but if anyone watching is in a similar situation and really wants to know, could they contact the network and have you forward their message to us?
Host: Yes, we could do that. We’ll get an e-mail address for them to use and will put it on the screen shortly.
Lily: I want to speak for a minute about why we don’t want to give out too many details about ourselves, if I may. We were once physically attacked and injured and came close to being killed because we’re conjoined. The man who did this thought he was doing the world a favor by eliminating what he called a freak of nature. So we have to be careful.
We recently became fairly well known within our own state, but we only stepped out of the shadows because there was a looming political crisis that we were uniquely positioned to make the public aware of. The crisis was averted, and if our actions made a difference, it was worth the risk.
We’re now going even further out on that same limb by appearing on national television, but the rights of people who don’t fit the mold, whether conjoined twins or anyone else who’s different in some way, are very near and dear to our hearts.
Host: I’m glad you’re both all right after that, and I’m truly sorry it happened. I hope the man who did that was put away for a long time.
Lily: He was found not guilty by reason of insanity and is in a federal institution for the criminally insane. But that means that if they ever decide he’s no longer a threat to anyone, he could be released at any time.
Host: Oh, my. It’s no wonder you want to keep mum about your whereabouts. I want to circle back now and ask about the moral dilemma you alluded to, Rose, if I may.
Lily: If you don’t mind, before she does that, I’d like to elaborate on something I just said about the rights of people who don’t fit the mold. In the United States, it’s perfectly legal to discriminate against us because we’re conjoined. It’s legal to discriminate against other people who don’t fit the mold in any number of other ways. You see, existing civil rights laws include a long list of categories of people that cannot be discriminated against. You can’t discriminate based on sex, race, skin color, national origin, religion, being handicapped, and a bunch of other reasons. But if you’re in a category that isn’t on that list, then it’s legal for you to be discriminated against due to being in that category.
We realize that the list can’t include every conceivable category, and we’re not trying to get conjoinment added to it. What we’re passionate about is advocating for all people who can be and are legally discriminated against. It’s our desire that society wouldn’t discriminate against anyone, on the list or not, simply because it’s the right thing to do. That is why we agreed to appear here today, to get that message out.
Sorry for interrupting. Rose, you were going to talk about our moral dilemmas.
Rose: Thanks, Lily. This is going to be somewhat risqué, but I’ll try to keep it suitable for television. Morally, the two of us sharing a husband is still considered polygamy, despite that we’re doing it legally. Keep in mind; we have one shared set of private parts, and so we both feel what goes on down there. Therefore, if we had different husbands, or if only one of us were married, it would be considered adultery. If none of us were married, it would be considered fornication. If one of us pleasures herself, it’s considered incest. There is no way morally for us to ever be intimate with anyone, including ourselves. That would be fine if we were nuns, but I assure you, we’re not.
Our collective cultural morality doesn’t allow for the possibility that two people might share a single body. There’s no way to get an exemption granted for that, either. No matter what we do, short of being celibate our entire lives, we’re going to be thought of as being immoral by some subset of the population. That’s inherently unfair to us, but there’s nothing we can do about it except to try to educate people about it.
Host: What would be an example of an ethical dilemma you face?
Lily: I’ll take this one. We go to a theater to see a movie. Should they let us in with a single ticket, or make us buy two? Their computer can’t handle letting us pay for one-and-a-half tickets, so that’s not an option. You can easily make a case for either one or two tickets. There will be two people watching the movie, but we’ll only be occupying one seat. We can’t occupy more than one seat.
Are they selling the right to have a seat or the right to see the movie? Both, really. They wouldn’t sell a ticket to watch the movie if it were standing room only, nor would they sell a ticket to occupy a seat if the projector were broken. So, either we have to pay for a seat that can’t be used, or they have to let one of us watch the movie for free.
Host: Okay, but how is a movie ticket different than an airline ticket?
Lily: With an airline ticket, they’re clearly selling seats going to the destination, not the flying experience getting there. An infant who sits on his parent’s lap flies free, but the same infant secured in a car seat must have a ticket. An obese person who can’t fit in a single seat has to pay for a second one, with exceptions made only if the flight isn’t sold out. The same with sporting events and concerts where the seat number is printed on the ticket. Obviously they won’t let two people share a single seat, but we’ve always been able to convince them that one butt in one seat isn’t sharing.
Host: One more personal question, if you don’t mind, because I’m sure our audience is curious. Are you able to have children the normal way?
Rose: We’re not only able; we’ve done so. We have two children, a boy and a girl.
Host: And they’re… uh… normal? They’re not conjoined or anything?
Rose: They’re both perfectly normal and healthy. Conjoinment isn’t hereditary.
Host: So how do you know which of you is the biological mother to each of your children?
Rose: It’s impossible to know that, since they were conceived naturally and we share a single womb. Lily and I, being identical twins, have identical DNA. A DNA test performed on our children would show that one of us is their biological mother, but it can’t say which one. But we both had the full experience of pregnancy and childbirth. As far as we’re concerned, we’re both their mothers.
Host: Well, Lily and Rose, thank you both for making time to be with us this morning. If you’d like to send a message to them, you may do so via the e-mail address shown on your screen. Next, we’ll hear from the parents of conjoined twins who’ll discuss some of the medical dilemmas they’ve had to consider with regard to their children. We’ll be right back after this message.
Chapter 15: World Conjoined Twins Day, part 2
Since we would already be in Manhattan for the morning show broadcast, we tried to find out what the United Nations had planned to mark the day, and whether we could also be a part of that. It took some effort to identify and reach the person coordinating the observance at the UN, a woman named Zahira. They were planning to hold an hour-long mini-conference which would consist of people giving speeches. The topics already scheduled were mostly discussing the medical and ethical aspects of separating conjoined infants.
We asked if the entire hour was already booked with speakers, and she replied that there still was a small amount of time yet to be claimed by anyone. We then explained that we were conjoined twins who would be in Manhattan that day and would like to participate if at all possible. “Do you mean participate by attending, or participate by speaking?” she asked.
“Participate by speaking, if possible,” we replied. “We could not be separated, and we’re now adults. We’d like to bring some firsthand perspective on some of the legal issues we’ve had to contend with as two individuals sharing a single body.”
Zahira asked us some questions about ourselves and took down our contact information. “You’d bring an interesting perspective that’s not already being discussed. I can give you five minutes at the end,” she finally said. “Possibly ten minutes if no one else claims the remaining five.”
She then explained that they didn’t allow people to just walk in off the street and speak. We’d have to go through our country’s UN diplomatic mission to be screened and approved to speak. She could only pencil us in until we’d gone through that process. She explained who we should contact and what we should tell them. “Also,” she said, “I’ll need a printed transcript of your speech at least two business days in advance so it can be translated into other languages.”
We hung up with Zahira, each took a deep breath, and contacted the U.S. Mission to the UN and asked for the person who cleared speakers to address a UN audience. We were then connected to a woman named Ariel. We explained that we wanted to speak at the mini-conference being held for World Conjoined Twins Day. “Okay. What are your credentials?” she asked.
“What do you mean, credentials?” we asked back.
“What makes you an authority on conjoined twins? Are you doctors who’ve performed separations?”
“We are actually conjoined twins ourselves,” we replied.
There was a long pause; then Ariel replied, “Uh… I see. Usually on medical topics like this, the speakers are all doctors or other professionals. It’s not customary to have, uh, patients speak,” she explained.
“Conjoinment isn’t just a medical issue,” we explained. “For people like us who have actually experienced it our entire lives, it’s a sociological and legal and political issue. If you need credentials for that, we each have bachelor’s degrees in sociology and master’s degrees in public administration.”
“You would seem to be qualified, then,” Ariel stated flatly. No shit! we thought to ourselves. Just being conjoined should have automatically qualified us. “I’m going to need a reference or two, though,” she added. “A letter from someone who can attest that you’re qualified to speak on the subject and are articulate and stable enough to not embarrass the United States on the world stage.”
“Would the attorney general and governor-elect of our state be a sufficient reference?” we asked.
“Yes, that would do nicely,” she replied. “If you can get a reference from someone that high in state government, we’d just need the one. Oh, and please submit the text of your speech at least five days before you give it so that we can review it for any classified information or other information that would be damaging or embarrassing to the United States.”
Based on the way we were being screened, we realized that a scholarly analysis of the difficulties we faced would be much better received than an anecdotal account. That wasn’t what we’d planned to do, but we were certainly up for the task. Perhaps it was just as well; we’d always wanted to be taken seriously for what we knew and could do.
And so once we finished at the TV studio, we, Nick, and our friends made our way across town to the UN. We were early, but we knew we’d need time to go through security and find where we needed to be. At the mini-conference, most of the speakers spoke in other languages, particularly Arabic. We were able to don headphones and hear the translation into English. We learned that Saudi Arabia and some other Persian Gulf countries were doing pioneering work in successfully separating conjoined twins.
Then it was our turn. As usual, we managed to turn a lot of heads, even among people obviously used to seeing conjoined twins. But the ones they dealt with were infants who they were usually able to separate. Even for them, it was quite rare to see adult conjoined twins in public, especially any that were obviously successful professionals, as they could discern from our dress and demeanor.
Our speech, though dry and boring to the people we came with, was exactly appropriate for the setting. We had double credibility discussing the issues of adult conjoined twins, for living it firsthand as well as for having the education and work experience to address it in a professional manner. We were very well received, and afterward, several of the other speakers and attendees confessed that they’d never considered the issues that we’d raised and that we made excellent points for the need to address the legal challenges of those who were not able to be separated. We were pleased that we might have accomplished some good by jumping through all the necessary hoops in order to be there.
Nick was immensely proud of us that day, both for appearing on national television and for making the speech at the UN. We had to admit, we were quite proud of ourselves.
As soon as we finished at the UN, we hightailed it to the airport to catch our flight home. Thanksgiving was only a couple of days away, and everyone and their uncle were all trying to get somewhere else for the holiday.
Chapter 16: Celebrities
Between the political ads and appearances we’d made and appearing on national television that day, our lives were never quite the same. Now the entire country knew we existed, and even the people in our own state were finally convinced we were real. No matter where we went, there was now a good chance that someone would recognize us and possibly even remember our first names. Usually that meant nothing more than someone approaching us and telling us that they’d seen us on TV or a YouTube clip, or a stranger greeting us by name. In Manhattan, this began almost immediately after we left the network studio that morning.
In the past, when people noticed us, often they either appeared startled or horrified, or they openly stared at us. We’d endured that our entire lives, and expected it and knew how to ignore it. Now, in addition to those reactions, we were also getting smiles of recognition. It took some getting used to.
On our flight home, it seemed that everyone within earshot wanted to chat us up about our TV appearance or about conjoined twins in general. Of course, not everyone had actually seen us on TV, but those who had filled in the others. For some reason, people who knew we’d been on national TV, whether they’d seen us or not, now considered us to be approachable. But they were all being kind and respectful, and so we had no reason to ask to be left alone.
A few people asked us whether we were headed home or elsewhere, or whether the flight’s destination city was our final destination or just a layover, trying to figure out where we lived. We declined to answer those questions, and the other people heading home, who’d seen us in the political ads, were discreet enough to keep their mouths shut, which we appreciated.
Frequently, people try to compare and contrast us to conjoined twins Abby and Brittany Hensel, who’ve been featured on television and in documentaries on numerous occasions over the decades and so are fairly well-known. Of course, we’re quite familiar with them, but we’ve never actually met them or been in contact with them.
Abby and Brittany seem to have a love-hate relationship with the media and the public. They’ve been in and out of the public eye since they were six years old. They’ve repeatedly said they resent intrusions on their privacy but then star in reality TV shows, which to us, are nothing more than modern-day circus sideshows. They refuse to answer questions about their personal and romantic lives, enabling rampant rumors and speculation to flourish in the tabloid press and online.
Our parents, and later we, learned from what we perceive to be the Hensel family’s mistakes and have been determined not to repeat them. We stayed completely out of the limelight until it was on our terms, as established adults, married and with children of our own. Then, we only chose to be on TV discussing serious topics that we were knowledgeable about, rather than as freaks on display for the morbidly curious.
But nevertheless, the morbidly curious now knew of our existence and wanted more. Almost immediately we began receiving several requests per week to discuss staring in our own reality TV shows or to appear as guests on other programs where they would clearly be putting us on display as the ‘freak of the week’ (our words, not theirs). We flatly refused all such requests and asked them to not contact us again.
Our political ads made it pretty obvious what city and state we lived in, and we’d made the mistake of uttering our last name at the beginning of the first one. There were now online groups devoted to reporting other personal details about us, including public sightings, past and present. It was common knowledge that we’d been on that transatlantic cruise. Before long they’d know that we were back working at the Human Rights Commission, and probably figure out our home address. We, including Nick, were all concerned that we’d soon have creeps and/or paparazzi knocking on our door or following us around. After all, we had two young children to worry about.
The good news was that we knew the governor personally. He was sympathetic to our plight, as he also had to worry about the security of himself and his family, but he had a dedicated state police detail to protect him and we didn’t. He gave us a number we could call any time 24/7 and have police at our side in a matter of minutes. We were very grateful for that gesture. He probably thought it was the least he could do, as he knew we were a contributing factor to his successful election.
Chapter 17: Goals
During his first week in office, Governor Holmes kept his promise and appointed us as co-commissioners at the Human Rights Commission, meaning that we’d share the position and have a single vote.
On our first day back, as soon as they saw us, the entire staff stood and gave us a standing ovation, and people came up to us and expressed their gratitude almost the entire time we were there. This included our fellow commissioners. As far as they were all concerned, we’d single-handedly saved the HRC as well as their jobs. Many of them were as passionate about their work as we were, and didn’t know what they would have done if they’d had to give that up.
We’d been in a unique position to speak out about the plot to abolish the HRC. Current government employees are prohibited from discussing or being involved in partisan politics while representing themselves as such. If they’d done so, they would have been fired. We were free to talk openly about it since at that point we were former employees, and we took full advantage of that fact, even though it was risky in multiple ways. We didn’t really think we’d single-handedly saved the commission, but we took pride in having a role in saving it. Now we were about to help run it.
We weren’t quite 30 years old, and it seemed that all of our life’s goals had been accomplished. We were happily and legally married to a wonderful man. We had two beautiful and amazing children, and their birth certificates said that we were both their mothers. We were financially secure. We were well educated. We had a job we loved. We had the confidence and skills to make things happen. We’d become well known, but on our own terms and in a good way. We were respected. We were influential. We were making a tangible difference in the world.
It was time to set some new goals.
THE END