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 Be
an
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.
CHAPTER 9
“It hasn’t taken away my voice.”
Our apartment was now littered with medical equipment. Bandages and ointments spread across the kitchen table. Cans of liquid food for his feeding tube. Suction equipment for his tracheostomy tube. And without a home nurse, Andy’s recovery was a full-time job for both of us.
I don’t know how parents, let alone single parents, do it, I routinely thought to myself.
Because of the relative newness of both our relationship and my job at CAP, I didn’t qualify for family leave. As flexible as they were, I still had to go to work most days. Fortunately, our family and friends came through in a big way. Andy’s aunt Carolyn, a nurse by trade, flew back to D.C. for a few days to lend a hand. My mom came down from Delaware one weekend. And the community of friends that Andy had amassed over the previous few years took turns staying at our apartment with him while I went in to the office.
Many of our chosen family in D.C. were gay or trans themselves, and their support exemplified why we so often refer to LGBTQ people as the “LGBTQ community.” It was a structure of mutual support and care that became a hallmark of “the community” during the 1980s and ’90s, the height of the AIDS epidemic.
Ignored by their government, often rejected by their families, in the closet at work, and faced with a rapidly spreading deadly disease, LGBTQ people had stepped up for one another to provide support and care while, in many cases, multiple friends within the same chosen family passed away from complications due to AIDS. We were seeing just a glimpse of that rainbow of support that helped so many in the community get through such a tragic time.
Even with the help, I shudder to think what would have happened had we worked for an employer that did not offer employees like Andy paid medical leave and had not been so flexible with my own schedule. Most Americans are not afforded similar benefits, and they may not have the network of friends able to step in, either. An illness should never mean the loss of an income, even temporarily, but in many cases it does.
The days after surgery were a blur of anxiety. I’d wake up several times each night to listen for Andy’s breathing.
“I worry something will get stuck in his trach tube and he’ll stop breathing,” I told my mom after a particularly fitful night of sleep.
Every two hours, Andy needed a certain cocktail of medications and his tube suctioned. We’d change and dress his arm wound. I’d help him dress and bathe.
“Can you wash my tush?” he’d sheepishly ask me while sitting in the tub, laboriously saying each word with his now-shrinking but still-swollen tongue. I could tell he felt bad that at twenty-seven years old he was asking his twenty-three-year-old girlfriend to bathe him. I think he worried that it infantilized him and removed the romance from our relationship.
But honestly, his strength and humor through it all only made me fall in love with him even more. We were going through life-and-death battles most couples our age never imagine, but it brought us closer, binding us together in unique ways. It felt like we had been together for decades. And the experience aged both of us.
Our spirits lifted each passing day as he regained his strength and made progress toward feeling like his old self. A week after coming home, his feeding tube and tracheostomy tube came out. Three days after that, he gained the strength and dexterity to finally put a shirt on himself. Jubilant, he posted on Facebook:
I really didn’t want my next few months to be too much of this, but it will be. Sorry y’all. I just put on a shirt for the first time since surgery, after feeling so embarrassed about being unable to dress properly for Dr’s appointments and a visit to the ER. I am so incredibly happy I cried and scared Sarah. Oops!
Our eyes were always focused on the next step of recovery, and for someone as autonomous as Andy, each step toward independence felt like reaching the highest mountaintop. But we also made sure to marvel at the smallest victories. For instance, Andy was incredibly proud of himself when, on medication that made him drowsy, he managed to stay awake at the movie theater on our first date night since surgery.
Or the time we went out to our favorite neighborhood restaurant for his first solid-food meal with his “new tongue.” Always in the mood for breakfast food, he conquered a plate of eggs, bacon, hash browns, and, his favorite, pancakes. I’ll never forget the smile on his face when he finished. The simplest pleasures became moments of personal triumph, but more than anything else he was just excited to be gaining his independence back.
I can’t help but wonder what role his trans identity played in his disdain for feeling dependent. I know I personally hate to ask for help, in part because I want to prove to society that I can be strong and independent. And while dependency is not a sign of weakness in the least—in fact, it can be a sign of strength—I’ve talked to other trans folks who avoid asking for help for that very reason: the fear that asking for or needing help will reinforce the prejudices and negative stereotypes many people have about those of us who are trans. I know I find myself overcompensating to show society that anything they can do I can do, too.
Andy, it seemed, was doing it at home as the patient. And as the caregiver, I was doing it at work, diving into my job to prove that I could do it all. Fortunately, there was a brief break in treatment before Andy would begin radiation and chemotherapy, giving him a bit of a respite, physically and emotionally. The break also happened to occur at the same time as the Employment Nondiscrimination Act reached the U.S. Senate floor. ENDA had failed by one vote in the mid-1990s, back when Ted Kennedy was the prime sponsor. Since then, Kennedy had passed away and handed the torch to a progressive senator from Oregon, Jeff Merkley.
Even though it was already an incremental, piecemeal bill—focusing only on employment—it was watered down even further with an overly broad religious exemption that would provide religiously affiliated nonprofits (which, in many cases, provide lifesaving services to the public) with a special license to discriminate.
It was an exemption not afforded to those same nonprofits for discrimination based on race, sex, or national origin. Even if you are affiliated with a religious institution, when you go into the public marketplace, even as a nonprofit, you shouldn’t be able to discriminate. A nurse at a Catholic hospital shouldn’t fear being fired from her job because she marries her wife. A custodian at a religiously affiliated senior center shouldn’t lose his job because he comes out as transgender.
Due to changing attitudes and the political makeup of the Senate, 2013 was the first year in decades that ENDA had any chance of passing. CAP, the Human Rights Campaign, the National Center for Transgender Equality, and other organizations led the charge with the public, while Merkley masterfully shepherded the bill through the archaic rules of the Senate. The bill was dead on arrival in the Republican-controlled House, but passage through the Senate would help build momentum and demonstrate the bipartisan support for LGBTQ-inclusive nondiscrimination protections. It would be a symbolic victory, reflecting the often-glacial pace of progress in Congress.
While the Democrats controlled the Senate, a supermajority of sixty votes was necessary for passage, meaning we needed at least five Republican votes to reach the sixty-vote threshold. Still, when the Senate passed the watered-down ENDA by a vote of sixty-four to thirty-two, the bipartisan result reflected a sea change
in popular opinion, particularly on trans rights. Six years earlier, gender identity had been stripped from ENDA in the then-Democratically-controlled House of Representatives. It was an offensive decision, throwing trans people under the bus through a compromise that singled out a class of people—trans people—for continued discrimination. Compromise is often necessary, but entire marginalized identities are not expendable chess pieces.
The fact that an inclusive ENDA had now just passed the U.S. Senate without any consideration for removing gender identity demonstrated the increasing political voices of trans people, the firming up of our allies in and out of Congress, and the public’s growing embrace of our rights. It also helped that organizations such as the Human Rights Campaign, which had made the mistake of continuing to support ENDA in 2007 after gender identity was stripped out, had made clear that they would never support a noninclusive bill again and stood firmly with the trans community. Their commitment, much like I saw in Delaware on our gender identity bill, was absolute.
I joined with my colleagues around a flat-screen TV mounted on the wall at the office to watch the vote. And as the votes ticked up on C-SPAN and the gavel slammed on the Senate dais during the final vote on ENDA, I was proud and excited for the advancement. It was the first time either chamber of Congress had passed workplace protections for transgender people, and over the preceding weeks, my colleagues and I had been working overtime to make it happen, drafting memos and talking points and making visits to Capitol Hill to assuage nervous Democrats and even more anxious Republicans.
Tomorrow Will Be Different Page 18