CHAPTER 8

“Will you still love me?”

From coming out at the end of my term as student body president, to the experience at the White House, to the gender identity nondiscrimination bill in Delaware, it had been an eventful year. Honestly, I was exhausted. But as ready as I was to move back to Delaware and settle down, I also felt compelled to continue the fight.

In Delaware, I had seen the power of our voices to make change when they were matched with resources and institutional support. But throughout that effort, and particularly in the aftermath, I couldn’t stop thinking about the people still denied the basic rights we finally had at home. Until every single LGBTQ person is protected by the law and treated with fairness, our fight isn’t over.

A person’s safety or dignity should not depend on their state or zip code. Equal means equal. But a majority of states still lacked the same basic yet critical protections from discrimination that we had just fought so hard for in Delaware. Arkansans and Texans and Virginians deserve these protections every bit as much as Delawareans and Californians and Minnesotans.

As has been the case in every effort for basic equality, there is only so much progress that can be achieved by going state by state. National laws, such as the Civil Rights Act and the Americans with Disabilities Act, are necessary to ensure equal protection from discrimination regardless of whether you live in the most conservative rural county or the deepest blue city.

With the Delaware bill passed, I felt much more comfortable coming back to the state I love, but it was too soon. I didn’t want to “get mine” and then go home, ignoring the widespread problems that remained. I wanted to help, in any small way that I could, to bring the change I worked on in Delaware to the nation. I knew that we could make strides at a national level, and I wanted to be a part of this important moment of change.

In D.C., there were hundreds of advocates spread across dozens of organizations doing just that at places like the Human Rights Campaign, the National Center for Transgender Equality, and the Center for American Progress. Andy, who was one of those advocates in D.C., was a big draw for me to stay in town. Throughout my work on the gender identity bill, we would spend weekends together, alternating between Delaware and D.C., where he was still working at the Center for American Progress on LGBTQ equality in health care. While we could have maintained a somewhat long-distance relationship—after all, Delaware and D.C. are only about two hours apart—both of us were ready to begin the next phase of our relationship under the same roof.

Delaware would always be there for Andy and me in the future, but for now we both wanted to be part of what was shaping up to be a historic moment in the movement for equality. With more and more states passing marriage equality bills, and the decision by the Supreme Court in June 2013 striking down the nationwide act that barred federal rights and benefits to legally married same-sex couples, the momentum on that issue was picking up steam.

Trans visibility was also increasing at a rapid rate. Laverne Cox burst into the mainstream consciousness with the premiere of Orange Is the New Black on Netflix. That year, 2013, was eventually dubbed the “transgender tipping point” by Time magazine. And D.C. felt like the center of it all.

I applied for a job on the same team as Andy at the Center for American Progress, the Washington-based think tank that has been called the “brain of the Democratic Party.” CAP worked on every policy issue, from the social safety net to national security to immigration to LGBTQ equality. The offices are located two blocks from the White House and the four floors of roughly two hundred employees were filled with both past and future Obama administration and White House staffers.

Always a conscientious employee, Andy notified HR of his relationship with one of the applicants. They didn’t see it as a problem; he wasn’t a part of the hiring process and wouldn’t be managing the role I was applying for. And after an interview with the incoming director of the LGBT Research and Communications Project, I was hired for my first full-time job as an advocate.

The team I would be working with was small, only about seven employees. I was the most junior, but given my experience in Delaware, my focus would be on our work advocating for LGBTQ nondiscrimination protections. The federal effort at the time centered on a bill known as the Employment Nondiscrimination Act, which everyone called ENDA. In Delaware, and in most of the states that had passed nondiscrimination protections, advocates had pushed for comprehensive laws that would protect LGBTQ people throughout life, from the workplace to housing and public spaces. But for the previous two decades, what was once a comprehensive civil rights bill had been whittled down to just protections in the workplace, the area of life with the most public support for passage of a law.

The theory was that because employment protections were the centerpiece of nondiscrimination laws, we’d focus on achieving those protections and then build out other protections incrementally, one bill at a time. First employment, then schools or housing, and then, down the road, public accommodations, which would include the dreaded discussion on bathrooms.

The approach had its drawbacks. First, access to a job does not begin and end with the application process; it also includes access to shelter, goods and services, and a quality education. For LGBTQ people to be able to live and thrive without fear of discrimination, it’s not enough to be protected from nine a.m. to five p.m.

The strategy also presented a practical dilemma. Yes, employment protections are arguably the most important area of life, but if we pass the most popular part of our agenda by itself, the more controversial parts that we leave for later become even harder to pass. I wasn’t inspired by this approach, but it was the strategy I was joining, and I was just one junior member of one team in one of a handful of organizations working on these issues. And in the end, I was thrilled to be able to continue to work on something that I was passionate about at one of the nation’s leading advocacy organizations.

As I prepared for my first day at CAP, Andy and I moved into a new apartment together. Our new place was in the same building as his old apartment, but in making the decision and signing the lease together, it truly felt like our home. I had fallen in love with the apartment because of its gorgeous views of a park across the street. The large windows in our living room looked out over stately trees that parted in the middle to reveal a long grassy stretch frequently filled with picnickers and, on Sunday, a drum circle.

When I told friends that I would be going to work with Andy, several questioned, “Don’t you think it will be hard to work with your boyfriend?” We’d now be living together, commuting together, and at CAP, our desks would be only about twenty feet apart. For some, it would be a recipe for disaster.

Both of us loved every minute of it.

Some of our colleagues didn’t even know we were dating. We kept it as professional as possible at work, relegating our more coupley talk to Gmail and Facebook messages. Between calls with coalition partners and researching and writing on issues of equality, Andy would message me his traditional greeting of “Hellllllllew! Is a bean there?”

We did a pretty good job of keeping our professional lives separate from our home lives, focusing, as we always had, on cooking together and watching mindless reality shows to unplug at the end of the day. Other days, though, we would vent to each other about something outrageous or hilarious that had happened. After all, our jobs were a big part of our identities, and our work was inherently personal for both of us.

We squabbled and bickered, as any couple would, but the fights were always mild and quickly resolved. We were happy together and each inspired by our work. We capped each week with Andy’s signature sangria on our rooftop and views of the Washington Monument and Jefferson Memorial.

It was a pretty good life.

Throughout the summer and early fall of 2013, as two young transgender people falling in love and fighting for the community we love, it seemed like we had a world of possibility and potential before us. I was twenty-three years old and I felt more fulfilled and happier than I’d ever imagined. But that all changed when Andy went in for a doctor’s appointment in September.

Back in March, while we were on vacation in Barbados, Andy had started to complain about a sore on his tongue. Months went by, but the sore remained. By August, I was getting a little annoyed with him. The pain was beginning to sour his mood and I was agitated by the mood swings.

“Go see a doctor. You need to do something,” I said, probably not fully grasping the pain he was in.

Eventually, I joined him at a small surgery center in suburban Washington for a short outpatient procedure to get rid of the sore. We had assumed that it was just a benign growth on his tongue, uncomfortable but easy to fix. It never occurred to us that the situation would be more than just a nuisance. Even after the doctor stopped the procedure early, saying that the growth was a bit larger than he’d anticipated, we were still completely unfazed.

“Young invincibles” is what they call people like Andy and me. The thought of illness for young people like us is so abstract that many don’t even bother to purchase health insurance. While we were insured through our employer, the obvious never occurred to us. In retrospect, our obliviousness feels absurd.

A week after the aborted outpatient procedure, Andy went in for a follow-up that quickly crushed any feeling of invincibility. I was home in Delaware visiting my parents and we didn’t expect it to be anything but a simple follow-up. Driving back to D.C. on my way to work, I got a call from Andy.

“Are you in a place to talk?” he asked me, his voice a bit shaky.

“I’m pulling into the garage at the office right now, but what’s up?” I nervously asked.

“Um, just call me back when you aren’t driving,” he replied.

If the thought of serious illness had been nonexistent before, it all came rushing into my head at once. I immediately knew where this was headed.

“No, no, what’s going on?” I pushed.

He paused for a moment and cleared his throat. “I have cancer…”

I have cancer. Three life-changing words you never want to hear.

He sounded completely defeated. Still driving down into the lower levels of my office’s garage, I could barely say anything before my cell reception started to go. I got out of my car and ran upstairs to my boss.

When I reached her office, I was out of breath. My knees were weak and I felt like I was going to throw up. I told her I needed to leave. I was hesitant to share Andy’s information, particularly since my boss was also his boss and I felt like it was his place to share that information, but I also needed to explain why I had to leave.

“Andy, uh…Andy, uhh…” It felt surreal to say the words myself. “Andy just found out that he has cancer.”

I felt like my world was upside down. I felt like I was propelling forward without any idea of where and how Andy and I would land.

“Go!” my boss responded, immediately understanding my need to be by Andy’s side.

I raced back to our apartment. It felt oddly still and calm as I burst in; the juxtaposition of my racing and cluttered mind and the deafening silence of the apartment was jarring. I walked through our small front hall and found Andy sitting on our couch, deep in thought, staring straight ahead. I ran over to him and gave him a big hug, interrupting an almost trancelike look on his face. He told me that the doctors had explained that the tests of the cells from the growth had come back and that it was malignant oral cancer—specifically, tongue cancer. They weren’t entirely sure how much there was, but it was possible it had spread to the throat and the lymph nodes in the neck.

I think for anyone, when they hear that they or a loved one has been diagnosed with cancer, their minds almost immediately jump to the ultimate fear: death. I know mine did, and I’m sure Andy’s went there as well. But we didn’t talk about that possibility, at least not yet. Still, a dark conversation we had just a few weeks before was at the front of my mind as I tried to comfort Andy. Driving around doing errands, we had started talking about our biggest fears, and both of us had expressed just how scared of death we were.

“No, you don’t understand, Bean,” he told me as I drove us to Target. “The degree that I’m scared of death is unique. Some people are resigned to fate, but I’m not. I think about death a lot, more than most people.”

Sitting on the couch in our apartment a few weeks later, he didn’t have to remind me of that conversation or verbalize that fear. It was self-evident.

As Andy called his parents and stepparents in Wisconsin to tell them the frightening news, I stepped out of the apartment and called my parents.

“Oh my God,” my mom exclaimed, and began crying. “Call Sean,” she said. My older brother had recently begun working as a radiation oncologist at Memorial Sloan Kettering in New York City, one of the nation’s premier cancer hospitals. Of all the focuses Sean could have decided on, he happened to be specializing in head and neck cancer: the very kind of cancer Andy had just been diagnosed with.

Pacing outside our apartment building’s back door and under a bright, flickering orange fluorescent light, I peppered Sean with a million questions—some heavy, others more superficial.

“Uh, will Andy lose his hair?”

“Probably not.”

While he couldn’t provide me with too many specifics because he hadn’t seen Andy’s records, he told me that the likeliest path forward would be surgery, followed by radiation and chemotherapy. He described the surgery, a likely significant dissection of Andy’s tongue, which would require a graft from his arm to rebuild the removed part.

“Is he going to be able to talk after that?!”

“Most likely, but it depends on how far the cancer has spread and exactly where it is in the tongue.”

Most likely, I thought. Jesus Christ.

I was scared to ask the question that was at the front of my mind. I was afraid of the answer. All of my questions danced around the central issue. I couldn’t ask, “Is he going to die?”

What if I ended up knowing more about Andy’s future than he did? What if the prognosis wasn’t good? My role now was to be the moral support for Andy as he underwent treatment. And I knew that if I appeared pessimistic in the least, he would be able to sense it.

“I don’t know what to do, Sean!” I felt completely overwhelmed, a feeling that I’m sure paled in comparison to the fear that was consuming Andy.

“Have Andy’s records sent to me. I’ll take a look and I’ll see if I can get him into Johns Hopkins,” he reassured me, referring to the major hospital in Baltimore that, like Memorial Sloan Kettering in New York, was known as a leader in cancer treatment.

The next few days were oddly normal as we began to scout out treatment options. Andy and I went in to work. We cooked and watched our shows. But throughout everything, the cloud of cancer hovered, both of us bracing for an impending storm.

Sean managed to get us into Hopkins. As we drove the thirty minutes up to Baltimore for our consultation before surgery, we knew how lucky we were to have access to the resources and skills that would no doubt aid Andy’s chances at a successful treatment.

“This is already so scary. I can’t imagine having to do this without Sean’s help and guidance,” Andy told me.

Just like with my coming out two years before, Sean had rushed into the situation as a reassuring voice of support. Now he was helping to shepherd my boyfriend through what already seemed to be very serious cancer. Almost no one has an ally like Sean to help them get the best possible care available; many do not even have access to health insurance, something that took the cost of Andy’s treatment down from well over a hundred thousand dollars to a few copays.

Fortunately, by the time of our appointment, we were feeling optimistic that with aggressive and competent treatment, Andy’s cancer was curable. I had finally mustered up the courage to ask Sean, who by now had seen Andy’s records, what his chance of survival was.

“Eighty to eighty-five percent,” he cautiously offered.

I felt good about our odds.

Through our work, Andy and I were keenly aware of the discrimination and mistreatment that transgender people often face in medical settings. In one survey, 70 percent of transgender people reported experiencing some form of discrimination in a health-care setting, including health-care professionals refusing to touch patients. Not every health professional knew we were trans, but some figured it out, and others needed to be told.

We were also cognizant of Johns Hopkins’s deeply troubled history with trans people. Once a leader on gender-affirming treatment, in the 1970s and ’80s the psychiatric department had come under the control of a right-wing extremist, Dr. Paul McHugh, who, while having no expertise in gender or sexuality research, harbored strong negative feelings toward LGBTQ, and particularly trans, identities. He would not only close down Hopkins’s work on transition-related care, he would also go out of his way to advocate against the rights and dignity of trans people, calling us “caricatures” and “mad.”

While McHugh, now much older, was no longer the head of the department, he was still teaching at the institution and a towering figure in its work. What if our providers had been acolytes of Paul McHugh’s? What, if anything, might that mean for Andy’s treatment?

So while stressing and worrying about all the typical things patients and their loved ones must deal with when facing such a serious diagnosis and invasive surgery, with each new doctor, and later with each new nurse, we wondered, What do they think of transgender people? Will they treat us differently if or when they find out?

As burdensome as these worries were, we decided that the risk was certainly not large enough to give up on the generally superior care that Andy would likely receive at Hopkins. After all, even without the Hopkins history, every interaction at any hospital would carry with it at least some of the fear we felt as we walked into the waiting area for our appointment.

After an hour’s wait, we were finally taken back to meet with Andy’s lead doctor, a surgeon and the chair of Hopkins’s head and neck department. As he began talking, he immediately put our nerves at ease. Like Sean, he was a confident and reassuring figure.

He informed us that Andy would undergo the extensive surgery we had already learned about. The left half of his upper tongue would have to be removed and replaced with skin from his forearm. The cancer had, thankfully, not spread to his throat, but it had spread to some lymph nodes. The surgeon would have to remove a decent number of lymph nodes from Andy’s neck, although the total number would be up in the air until they were actually in surgery.

“Will I be able to speak?” Andy asked, concerned with the ramifications that not being able to talk would have on his career prospects as an advocate.

“You may have a small impediment, but I think you will regain approximately ninety percent of your current speech abilities,” the doctor told us.

Again, 90 percent was better than the alternative.

The surgeon also informed us that the neck surgery would make Andy’s neck cave in a bit, and it would appear skinnier than it did now. And there would be a large rectangular wound, and later scar, on his forearm. Both of us were less concerned with the cosmetic outcomes than we were with the questions about his speech and, of course, his life.

“We can get you in for surgery in about two weeks. We don’t want to wait much longer,” the surgeon told us.

Andy took a deep breath. “Okay.”

Over the next several days, Andy began to prepare for his extended absence from work. After surgery, he would be out of work for his recovery and then, again, for the six weeks of extensive daily radiation and weekly chemotherapy infusions.

He didn’t like the idea of missing so much work. He didn’t want to be left focusing solely on his cancer. He wanted, needed, distractions. So in the lead-up to surgery, I tried to give them to him. We went out to dinner most nights, knowing that he would be relegated to Ensure and milkshakes for a while after surgery and would have to relearn how to eat with his “new tongue.”

Just a week before surgery, we went out for our last big date before our lives would be consumed with treatment. Sean and I had been asked to speak at the Human Rights Campaign’s National Dinner, a three-thousand-person gala for the LGBTQ civil rights group that had helped us pass our gender identity bill in Delaware. The organization was excited for our family to be able to talk about the good work HRC had done on behalf of trans rights in Delaware. And the image of an out trans woman and her openly gay brother onstage together provided the perfect metaphor for the larger movement for LGBTQ equality: gay and trans people standing as one family.

Sean and his husband, Blake, came down from New York. I invited my ex-girlfriend Jaimie, the one who, in breaking up with me, had initiated the chain reaction that led to my coming out, as well as one of my best friends since childhood, Read. And, of course, Andy.

Andy and me at the Human Rights Campaign’s National Dinner. Andy put on a brave face as he prepared for major surgery to remove his tumor.

It was a big deal for us to be asked to speak at the dinner. It was the biggest LGBTQ equality event in the country and it would be my first time on a national stage of that kind. I had attended the dinner the year before with White House staffers during my internship but had only dreamed that one day I would be able to stand onstage at the Washington Convention Center.

Even though I knew Andy wanted distractions, I still worried that the dinner would be too much. I feared that I was being selfish.

“Are you sure you are okay doing this?” I asked him. “I can cancel.”

“No. This can be our last hurrah before, ya know…everything,” he responded.

Maybe he genuinely wanted to go. He certainly wanted to get out of the apartment. But I also got the feeling that he didn’t want to come between this opportunity and me. He was always so supportive of my goals.

“Plus, it’s a great opportunity for me to wear a bow tie,” he added with a wink.

Sure enough, that Saturday night, he sported a dapper tux and a bright green bow tie. We were led to our table, near the front of a room that stretched at least two football fields across. I was seated between Andy and a personal inspiration of mine, civil rights legend Julian Bond. Bond had been a leader of the Student Non-Violent Coordinating Committee with John Lewis during Selma and later helped found the Southern Poverty Law Center, the nation’s leading hate watchdog group. He was speaking that evening as well.

Attorney General Eric Holder, a staunch defender of LGBTQ rights in the Obama administration, opened the evening. Chad Griffin, HRC’s president, gave a rousing speech. And finally, it was time for Sean and me to go onstage. I was excited but could feel the butterflies building.

The crowd was fired up from a mix of our movement’s success and the evening’s remarks, along with some help from alcohol. We waited backstage as Chad finished up his remarks and the “voice of God” came over the loudspeaker.

“Please welcome Sarah and Sean McBride.”

Music started playing and we walked out onto the stage. As I stepped up to the lectern, I could hear the song behind the applause. Purely by chance, it was “Safe and Sound,” the same song Andy had played for me in the car on our first date.

I had never addressed such a large audience. The general assembly in Delaware paled in comparison. My legs were shaking from nerves. I began my speech, consciously trying to speak slowly and clearly as I recounted my experience coming out at AU and the love and support my family had given me. I talked about our fight for legislation in Delaware and the historic year we had just experienced, with both marriage equality and gender identity nondiscrimination protections passing.

I could hardly see anyone in the audience. It looked like I was speaking to a sea of black except for the occasional light that reflected off glasses, jewelry, or some of the shinier clothing. And just to my right, a few tables back, my eye caught Andy’s green bow tie.

The tone of my speech was triumphant. I talked about how excited I was for the future. I spoke about how fortunate I felt. But in reality, in that moment, I didn’t feel any of those things. And I knew Andy didn’t, either.

The words rang hollow for me that evening. I wasn’t excited. I wasn’t feeling particularly fortunate. I worried that my positive tone on the stage would make Andy feel even more alone in his struggle and sadness. And I couldn’t shake the feeling that this might be the last night of its kind for the two of us.

When I returned to our table, Andy greeted me with a kiss. He squeezed my hand and said, “You were so fantastic. I’m so proud of you, Bean.”

His eyes were warm, but I could see the anxiety lurking behind them. For both of us, the end of that speech marked the beginning of a new chapter, one neither of us were fully prepared for. We were focused on the first step, surgery, but we knew that would be only the beginning of a grueling several months at best.

Ten days later, at five a.m. in a dark hotel room in Baltimore’s inner harbor, we woke for Andy’s surgery. Or, more accurately, I woke up. Andy hadn’t slept a wink the night before, and as I rolled over to say good morning, I saw him sitting up and staring blankly into the darkness.

“What if I can’t talk anymore?” he asked. Clearly, he’d been crying. “Will you still love me?”

“Of course, my love,” I told Andy in the darkness. “But it really doesn’t sound like that will happen.”

I was hopeful it wouldn’t come to that, but the possibility had been on my mind. Our boss at the Center for American Progress and I had already started discussing the possibility. “If it comes to it, we’ll all learn ASL,” she had suggested, referring to American Sign Language. “We probably should, anyway.”

We met my mom; Andy’s mom, Ardis, and stepdad, Richard; and his aunt Carolyn in our hotel lobby and made our way to the surgery center at the Hopkins hospital campus. For the whole drive, Andy never stopped holding my hand. His palms were sweaty and his grasp tightened as we got closer to surgery. By six-thirty a.m. we were all sitting around Andy’s bed in the surgery prep center. Carolyn and I exchanged jokes with Andy, who seemed to be in surprisingly good spirits. Soon enough, the jokes ended when the surgeon entered and approached Andy’s bed.

He asked Andy how he was feeling, then swiftly changed course to share some developments.

“Based on scans from yesterday, it looks like the cancer has spread to parts of the other half of your tongue. So we are going to have to remove more than we anticipated.”

Andy’s eyes widened at the news. “Does that change the prognosis for my speech?”

“I’m afraid it may. We won’t know for sure until we are in surgery, but it’s difficult to say”—no pun intended, I’m sure—“what your speech will be like at this point.”

Andy looked at me with tears welling in his eyes, clearly shaken at the sudden realization that these few moments might be his last with the ability to speak. But there was no time to digest the news. Almost immediately, he was wheeled into what would be a ten-hour surgery. The surgeon had just dropped a bomb on us. As we watched the back of Andy’s bed turn the corner, we knew we couldn’t do anything to calm him.

The next ten hours felt like an eternity. I tried to do some work. I texted his friends and posted updates on his Facebook page per his instructions, but it was nearly impossible to focus on anything as we waited in a bright semiprivate alcove in the larger waiting room. I knew Andy was in skilled hands, but my heart was in my throat the whole time.

Halfway through, the surgeon came out to give us an update. He was confident they had gotten all of the cancer in the removal of the tongue and lymph nodes. He was now turning Andy over to his colleague, a reconstructive surgeon, to take skin from the arm and rebuild the tongue.

Another four hours went by. Ardis played on her iPad. Richard slept in his chair. Carolyn and my mom chatted. I could only send the occasional email as my eyes kept wandering to check the time and I wondered when we’d get the next update. Finally, the reconstructive surgeon came in and informed us that the surgery was complete.

“How does it look, Doctor? What do you think about his speech?”

Ardis, Richard, Carolyn, and my mom looked up anxiously.

“I think he’ll regain, functionally, his ability to speak, just with an impediment.”

Thank God.

This was the first moment when the potential news felt more positive than negative. Despite my concern that everything that could go wrong would go wrong, the news about Andy’s speech was a welcome alternative to my sneaking pessimism.

They wheeled Andy into a room in the intensive care unit and the five of us were taken up to see him. Anyone who has ever visited a loved one in the hospital knows the feeling in the pit in your stomach as you prepare to see someone after an accident, illness, or surgery. I wasn’t quite sure what to expect, but I was anxious to see him.

He was just waking up from the anesthesia as we entered his room in the ICU. The lower half of his head and his new tongue were significantly swollen. He had staples up the side of his neck and a large bandage over his left arm. He was hooked up to a million machines and tubes, including a feeding tube through his nose and a tracheostomy tube that went up his windpipe and exited through his lower neck, allowing him to breathe as his still-swollen, rebuilt tongue blocked the airway in his mouth.

“You look great, Bean,” I told him with a smile. “They say they got all the cancer, and the doctor says that you should get pretty much all of your speech back.”

He couldn’t change the expression on his face, but he managed to lift up his right hand and give me a thumbs-up.

We had made it this far. The recovery would clearly be long and intensive, with the torture of not really being able to communicate through his swollen tongue exacerbating his frustrations. But there was certainly a light at the end of the tunnel.

Hopkins would keep him for about a week, first in the ICU and then, later, in a private room in a more general recovery wing. We got him a whiteboard so that he could communicate with us, and he had me send pictures of him with messages of love and thanks to a few friends and family, including Sean. He didn’t want anyone to worry.

Over the next seven days, with the help of a stream of dedicated nurses, Andy’s physical activity increased as his tongue decreased in size and he attempted a little labored speech. Some days I’d sit by his side doing work: Over the previous month, the Employment Nondiscrimination Act had begun to move through a committee in the U.S. Senate and had made its way to the Senate floor.

As he watched daytime television, I’d sit by his bedside on my laptop, crafting memos and research papers for senators debating many of the same issues we had just forged through in Delaware. ENDA had never passed the U.S. Senate, and while the prospects for passing the House were slim—very slim—we hoped we could at least push the bill through the upper chamber of Congress, building momentum for eventual passage down the road.

A few days after surgery, Andy’s family returned to Wisconsin, but in their place came friends and colleagues making pilgrimages to Andy’s hospital room to hang out, something that made the days bearable for him. The extended stay meant a nearly constant rotation of nurses. And with each new nurse, the fears that surfaced during that first visit to Hopkins came back. Every time a new nurse would walk into his room, Andy would glance at me with a simple look that said: “Can you tell them?”

For practical reasons, it was helpful for them to know that he was transgender. In the split second after I told them, I’d study their facial expressions for even the subtlest sign of discomfort. Discomfort can, even subconsciously, lead to mistreatment. Fortunately, every nurse was a consummate professional, and while we were nervous each time, they all offered no suggestion that they had a problem with who we were.

A week after surgery, I got the call that both Andy and I had been hoping for: He would be discharged, probably that afternoon. I left work, which I had returned to the day before, and hurried up to Baltimore to meet Andy in his room in the general recovery wing at Johns Hopkins. He would be released from the hospital in stable condition but still with the feeding tube, the large, shallow wound on his arm, and the tracheostomy tube. The tube had to be cleaned with an ominous gray suction machine every few hours to ensure air could pass through and he could breathe.

Afternoon came and went, and we still waited to be discharged. The hospital eventually told us that the supplies for Andy’s home care were not yet available. Yet they were ready to discharge him, so a nurse gathered up as many supplies as possible onto a cart and wheeled it into Andy’s room.

“This should hold you over until the rest of the supplies arrive and are shipped to your apartment,” he told us.

Andy and I both looked in terror at the cart, overflowing with clear plastic bags and containers filled with replacement tubes, food bags, wound dressings, and more. The nurse, clearly overworked and trying to do his best for us in an unfortunate situation, quickly ran me through the steps to clean Andy’s tracheostomy tube, dress his wound, and change his food.

By now it was dark outside. Andy was giddy with the prospect of getting out of the hospital. I felt woefully unprepared but knew how badly he wanted to get home. And admittedly, I did, too. So I packed his bag and helped him dress.

In total, Andy had four tubes coming out of his upper body: the feeding and trach tubes, plus two drainage sacks coming out of his neck and collar, which presented a challenge in getting him fully dressed. After a few tries to get his arms through the sleeves, I draped his button-down shirt over his back, clipped one button closed, and attached the drainage sacks onto the shirt with pins. He looked disheveled, but it would do.

Pushing the cart of supplies down the hallway, I looked back at Andy, who was a pace behind me, and noticed a small amount of light red blood coming from his mouth. I panicked, ran and got the nurse, and brought him over to Andy.

“Don’t worry,” the nurse reassured us. “A little bit of blood is normal. Only be concerned if the blood coming out of his mouth is thick and dark.”

We both exhaled and made our way slowly down to the waiting car. I drove excessively slow on Interstate 95, like a brand-new parent with her baby in the car. Eventually, we pulled up to our apartment, where we found one of Andy’s best friends, Wesley, waiting for us. He helped us carry the supplies to our apartment, which Andy greeted as though he had been gone for years. He was finally home and ready to begin his recovery on his own terms.

Except now the constant light-red blood had turned into dark, thick blood, softly gushing from his mouth.

Fuck.

I called the resident-on-call at the hospital, who could, understandably, provide little guidance based on my description. I then called Sean, who recommended, as a precaution, that I take Andy to the emergency room.

Wesley and I hurriedly helped Andy back down to our car, and I drove the short distance to George Washington University Hospital, a central D.C. hospital known as the primary emergency location for the president. We were home from Johns Hopkins less than fifteen minutes and now already on our way to another hospital.

As we pulled up to the entrance, Andy was covered in blood, still partly shirtless, and overwhelmed with tubes. The guard at the driveway was clearly shocked by the sight of Andy and urgently told us, “LEAVE THE CAR. GO STRAIGHT THROUGH.”

We waded through the crowd in the waiting room, hundreds of patients and family members staring at this young man and wondering, What the hell happened to this kid? His weakness was evident in his walk. It was more shuffling his weight from his left to right foot and back again, lifting each foot about an inch off the ground and forward slightly as he waddled through the crowd. A nurse who saw Andy’s condition pushed a wheelchair behind him just in time for Andy to collapse into it. Still conscious but very weak, Andy was ushered past the waiting room and sent straight into the emergency room.

A cancer patient being treated by an emergency room doctor is like a criminal defendant being represented by a corporate attorney. The cancer patient’s experience and needs are so far outside of the ER doctor’s wheelhouse that urgent care and oncology might as well be two different professions. Each of the young emergency room doctors, working the night shift, had a deer-in-the-headlights look as they saw Andy.

Since hospitals do not share records, we explained every aspect of Andy’s recent medical history to the doctors to provide them with all potentially relevant information. Andy’s tongue was so swollen, and half of it so new, that I mostly spoke for him. Several hours went by as the doctors monitored his condition. Eventually, the bleeding stopped and they were able to determine that his new tongue was just so swollen that his teeth had lacerated it, causing the bleeding.

By now it was one a.m., and Andy’s tracheostomy tube hadn’t been cleaned since the early evening—significantly more time than Hopkins told me was okay. We asked for help. The doctors and nurses looked around but could not find any suction equipment, which was strange, considering we were in a hospital. His breathing still seemed okay, and, eventually, at three-thirty a.m., Andy was discharged and we returned to our apartment, where we went straight to the bathroom to try to suction his tracheostomy tube. I unpacked the equipment as he sat down on the edge of the toilet.

The suction machine looked like something out of the late 1980s. It was a dark gray plastic machine with a small motor and a clear plastic container. Coming out of the container was a long translucent tube that was meant to be stuck down the pipe coming out of the makeshift hole in Andy’s neck. I tried to push it down, but it wouldn’t go.

I tried again. Nothing.

I finally pushed it in a little, but the suction tube wouldn’t go very deep. I was clearly doing something wrong, but I couldn’t remember all of the instructions. It had been a stressful whirlwind of a week, and I had been awake for nearly twenty-four hours. I was just out of college, and it felt like this entire person’s life was in my hands. No nurses. No doctors. And it was becoming slightly harder for him to breathe.

I kept worrying he would stop breathing entirely. That he would die on me right then and there in our bathroom. What if he stops breathing because of me? I thought. He was clearly scared and beginning to get worried.

And then I lost it. My vision became tunneled, like it had when I’d first found out about his cancer, and I was pulled into a panic attack. I was so excited to have him home, but it was now hitting me just how hard this was going to be. I leaned back against the wall in our bathroom, fell to the floor, began to cry.

“I can’t do this! I can’t do this!”

I had tried to be strong for Andy, and I knew his plight was much worse than mine, but it had become too much. The stress of the last twenty-four hours, of the last week since his surgery, and of the last few weeks since his diagnosis was too much. I didn’t know what to do.

In his desire to be independent and in control, he had expressed a desire to not ask his parents or family to help take care of him. Initially, I hoped to honor that wish. Maybe I could have, but during this crisis, my fears and stress took over.

“I need help, Andy. I can’t do this on my own,” I said still sobbing.

Sitting on the edge of the toilet, covered in blood, Andy looked at me with tears in his own eyes and just calmly said, as clearly as possible, given the state of his tongue, “It’s going to be okay, my Bean. I’ll do whatever we need.”

We sat in silence for a little while as I caught my breath. We messed around with the suction equipment and his tube a little bit more and eventually figured out, through trial and error, the proper way to keep his windpipe clear.

I helped Andy to the bed, where we had placed six or seven pillows so he could sleep sitting up. I walked into the living room and fell asleep on the couch. By now it was four-forty-five a.m.

I slept, fitfully, for a few hours. Every so often, I woke up just long enough to listen to make sure Andy was still breathing.

I figured Andy had gone to sleep, too. In reality, he was up writing a note. Just as the sun came up, he took out a pen and three pieces of orange, brown, and tan construction paper and began writing a letter he never actually gave to me. I found it several years later.

“My darling,” it started. “Yesterday was so hard. God, if every day were like that, who would want to do it?! But, all days won’t be like this.” He went into the logistics of how we’d make it all work, from the help of friends and family to bathing. “I can also have help from whoever to wash my hair and then I can clean my little tush,” he wrote about washing himself. He talked about radiation treatment and his food intake. And then he closed with:

Probably your biggest burden now is emotional. And that is living….But most days will be good ones.

This is my way of saying that I know this is horrible and has been a disruption. But we will have more normal days and I believe this will not need to strain you too far beyond my emotional support needs.

I can’t repay what you already gave me in kindness, support, worry, hope, strength, or love. But I will try with every bit of me to reply with love, generosity, kind gestures, and support.

This is, has been, and will be hard. But we will thrive by calling in our forces and not just being a two-player version of our lives for 2013 through 2014. Please don’t give up. Please don’t think you aren’t already always giving yourself to others (especially me)—because you are succeeding! And we will come out of this stronger, happier, and more in love than ever. I really believe that. I adore you with every one of my nonsquamous cells.

—Andy Bean

The note was his plea for me to stay with him.

I had never thought, for an instant, of leaving his side while he went through this. When I said, “I can’t do this! I can’t do this!” I had meant “I need help.” But he had heard “This relationship is too much for me.”

So on his first night home from the hospital, sitting up in our bed at sunrise, in pain and still scared, Andy worried that his best friend, girlfriend, and caregiver was about to leave. I shiver at the added fear I must have caused him. Yet he responded with patience, love, and understanding. That was Andy.