Tomorrow Will Be Different

by Sarah McBride

  The vote was a long time coming and a lot of work. But the ‘‘victory” paled in comparison to the feeling of pride and hope that I had felt after Delaware’s Gender Identity Nondiscrimination Act was signed. Since the Delaware bill actually became law, it had a tangible impact and real protections that would help people. That the symbolic victory in the Senate on ENDA came on such a watered-down piece of legislation only added to the feeling of an empty victory.

  Still, in this work you have to acknowledge the advancements, no matter how small. As quickly as we need change to come, the race is a marathon, not a sprint. And as we celebrated in our downtown office, my mind was also on Andy, wishing he could be in the office with us, watching the historic moment.

  That night, as we prepared for bed, Andy and I sat down and talked about ENDA.

  “We win when we ask for what we need rather than what we think we can get,” I vented to him, feeling emboldened by the win but uninspired by just how limited it was. “People can tell when you aren’t advocating from a place of authenticity. We need to excite people, get them behind something big.”

  “And we need protections in all areas of life, not just employment,” Andy added, alluding to his work on nondiscrimination protections in health care.

  We both hoped that someday the national movement would shift toward a bigger strategy, that we’d find our courage on the issue of discrimination and demand full federal equality. That night, we talked of a bill that didn’t just include employment, but also shelter and public spaces, schools and hospitals: protections in all areas of life in all parts of the country. Little did we know that similar conversations were happening in other places around town as well.

  It felt good to talk about something beyond cancer. With his treatment moving along, I could see Andy itching to get back in the ring, but we were still only halfway through his treatment. And while we tried to always look ahead with positivity, the darkness of cancer always loomed in the background. Everything felt drenched in it and the air always felt heavy with it. We never talked about the elephant in the room. “Death” was a word we still never uttered. But I imagine it was on his mind as much as it was on mine.

  The brief interlude between surgery and the grueling schedule of radiation and chemotherapy was the calm in the eye of a hurricane that would come back in full force in just a few weeks. And when it returned, it did so with a vengeance.

  After a few weeks, the radiation on his mouth and neck started to cause so much pain that it hurt him just to breathe.

  “It feels like I’m being stabbed in the throat,” he told me.

  It seemed like the progress we had enjoyed was backsliding. He lost, again, the ability to eat solid foods. But through it all, we were determined to live as normal a life as possible. And with the holidays approaching, we were intent on celebrating as best we could.

  We returned to Delaware together to spend Thanksgiving with my family. A week later, his mom and stepdad came out to spend some time with him during his daily radiation treatments. Andy and I both loved Christmas, so his mom and stepdad took us to Target to buy a fake tree and ornaments. We purchased A and S ornaments and decorations that reflected our favorite shows and jokes. Finally, the medical equipment was largely gone, replaced now with holiday decorations. Donning Santa hats, we danced around the apartment and filled it with ornaments.

  When Andy’s dad and brother were set to fly to D.C. to spend Christmas with him, I asked Andy if it would be all right if I went back to Delaware to spend Christmas Day with my parents.

  “I want you to stay with me,” he said, almost pleadingly.

  I had always spent Christmas with my family. With his dad coming to town, I thought it might be a good opportunity for me to recharge a bit. But I could tell he was hurt that I wanted to go home.

  “Please stay, Bean,” he pleaded.

  We went back and forth a few times. I wanted to be with my parents; he wanted me to be with him. Each of us was beginning to grow frustrated with the other.

  “I need a break,” I blurted out, regretting almost instantly the choice of words and emotions. I had avoided expressing any exhaustion to Andy, not wanting to make him feel like a burden. I had always tried to honor the “grief circle,” always complaining outward, never inward. But I felt that I needed to rest in order to better care for him.

  He glared at me. I could see the anger and indignation brewing under the surface. “You need a break? You need a break?! What about my break?! THIS IS MY LIFE,” he shot back, bursting into tears. “THERE IS NO BREAK FOR ME!”

  It was a release of all his pent-up frustration and exhaustion, emotions that I needed to let him vent. He needed the release and certainly deserved it. Almost immediately, though, he relented.

  “I’m sorry, Bean. I’m sorry. You should go,” he told me.

  “You never need to apologize,” I told him. Part of me wanted to meet his reversal with a complete reversal of my own, committing not to leave at all. But his dad was coming to town. This would be my one opportunity to get some rest.

  I said I was sorry for what I had just said and how I had said it. “How about I just go for two days? I’ll go up on Christmas Eve and come back the day after Christmas. How does that sound?”

  * * *

  The trip back to Delaware for Christmas was helpful, but it wasn’t the escape I thought it might be. My mind was always on Andy. I constantly checked in, texting him every few hours. The Christmas two years ago when I had come out to my parents felt like a world away. And after my family opened presents, I looked at my phone and saw a text from Andy.

  “I can’t talk. I’ve lost my voice. I’m scared,” it read. Since surgery, he had mostly recovered all of his speech. A slight impediment remained, like he had a few cotton swabs in his mouth. But it had largely returned.

  “It hurts to talk?” I texted, realizing I couldn’t call him to get more information.

  “When I open my mouth to talk, nothing comes out,” he replied.

  I called Sean, who told me that it was a possible side effect of the treatment, but that it generally comes back.

  “Generally?”

  There was always the small risk that the radiation would permanently damage the vocal cords. Merry Christmas, Andy, I thought.

  The next day, I met him in Baltimore, halfway between Delaware and Washington. Andy’s voice had mostly returned when we met outside the hospital where he was getting his radiation treatments. Over the next few weeks, as we rang in the 2014 New Year, his voice would go in and out. Each time he’d lose his voice, he simultaneously hoped and worried, for different reasons, that it would be the last time. Fortunately, it always came back, and eventually for good.

  And as we entered 2014, for the first time in a while, the news for Andy was all good.

  Early in January I went with him and his mother to Hopkins for what would ideally be his last radiation and chemotherapy session. On most days, Andy had gone by himself, but he had company for the final few weeks, as his dad and, later, his mom were in town. Since I had to work, I had gone to only his first several sessions.

  Walking into the waiting room now, six weeks after the start of treatment, Andy was greeted like the most popular kid in school.

  “Hey, Andy!” one patient called out.

  “Andy, how are you doing?” asked a nurse as she walked by.

  “Andy, my man!” an older man yelled.

  He had clearly made an impression on the other patients and nurses. His charm, wit, and charisma were infectious even in a cancer treatment center.

  As he went in for his final radiation appointment, Andy’s mom and I waited with other patients and their families in the waiting room. The average age in there had to be seventy. Looking around, it was clear that at twenty-seven, Andy was by far the youngest patient getting treatment. That is, until I heard the voice of a young woman fr
om around the corner.

  “Alex, it’s time to go!” the woman yelled, not unkindly.

  A little boy, no older than five years old, walked around the corner in a hospital gown and grabbed her hand. The little boy was smiling and laughing as he made his way toward a door that read CAUTION: HIGH RADIATION.

  Any feelings of self-pity washed away. My eyes filled with tears. I sat there watching the grace of both this little boy and his mom. I knew how important insurance had been to potentially saving Andy’s life. I assumed the boy in front of me likely had insurance, too. And watching the door close behind him as he walked into the radiation center, I couldn’t help but wonder how anyone in this country could believe that someone, let alone a child, doesn’t inherently deserve treatment for a disease that would otherwise end his life. How could anyone think that children with cancer deserve to live only if their parents are financially secure?

  My train of thought was interrupted when a nurse came out smiling. “He’s finished,” she informed us.

  Andy’s mom and I waited by the exit until Andy emerged, clearly relieved, with a big smile on his face, knowing that the treatment was now in the past. Next to the exit was a small bell with a mallet attached to the wall. It was reserved for patients finishing their (it’s hoped) final treatment, a celebratory routine that exists in cancer clinics across the country.

  “Ring it,” the nurse suggested.

  Andy picked up the mallet and gave the bell a light tap.

  Ding.

  “Come on, hit it!” I said.

  He tried one more time.

  DING.

  Everyone in the waiting room erupted in applause. You could feel the love and energy in the room. All of the patients and their loved ones were going through a similar experience. The mutual support was genuine, and you could tell they were all happy for him. Andy smiled again and bowed.

  “Ah thank you! Ah thank you,” he joked through his hoarse, soft voice.

  He was ecstatic to be done with treatment. He was ready to move on. We were ready to move on.

  Even before treatment ended, he had started working again, beginning at home, and then, more and more, in the office. Before his medical leave, he had been working with local and national advocates in D.C. to push the Washington mayor to issue guidance on transgender inclusion in health care, policies that he envisioned would be the most comprehensive in the nation. As a transgender person, he understood just how necessary it was for transgender people to be able to access all the care we may need, including transition-related care. It was the issue at the heart of his advocacy of health-care access for LGBTQ people.

  One of the most common forms of discrimination faced by transgender people are blanket bans in health insurance plans that forbid the coverage of any treatment related to a gender transition. Most people think that if a trans person transitions medically, whether through hormone treatment or surgeries, they are utilizing care that is only ever accessed by trans people. That couldn’t be further from the truth.

  Practically every single medical procedure someone might utilize to transition is also offered for other reasons. The hormone treatment transgender people may utilize is also offered to people with hormone imbalances or to women after menopause. The different reconstructive surgeries some transgender people seek are also offered to others for various reasons, including, for example, a person with a damaged vaginal canal after childbirth or a mastectomy for someone with breast cancer.

  In each instance, insurance covers every one of those treatments and more. But despite the fact that every major medical organization deems transition-related care to be medically necessary, insurance plans across the country often ban any coverage of this care for transgender people experiencing gender dysphoria, the diagnosis that refers to the mental anguish caused by having one’s gender identity not seen and acknowledged by society.

  To put it simply, a service is being provided to everyone but trans people. That is a textbook example of discrimination. And it’s pervasive.

  As a lawyer and policy expert at the Center for American Progress, Andy had led the charge nationally to remove the discriminatory bans. It was his legal reasoning that had become the nationwide model, and so far, almost ten states had forbidden insurance exclusions for coverage of transition-related care.

  Throughout the last few weeks of treatment, even as his voice went in and out and it sometimes hurt to breathe, he had worked with a handful of advocates on D.C.’s new policies.

  “It would be the gold standard,” Andy had told me of the new insurance guidelines.

  And now, a few months after concluding his cancer treatment, he stood with other activists as the mayor of Washington, D.C., announced the new rules to the press. Standing before cameras in a formal wood-paneled room, Mayor Vincent Gray announced, “Today, the District takes a major step towards leveling the playing field for individuals diagnosed with gender dysphoria. These residents should not have to pay exorbitant out-of-pocket expenses for medically necessary treatment.”

  Andy was thrilled. The policies that he had worked on in other states were typically announced with a press release, not a public ceremony. Used to working exclusively behind the scenes, Andy was empowered by the public celebration of the policies he had dedicated his short, but eventful, professional career to advocating for.

  He returned to our apartment from the ceremony fired up like I had never seen him. He was recharged and ready to fight.

  “I feel like I have a story to share,” he told me. “I understand firsthand the need for people to be able to access health care that is both lifesaving and life affirming. I want to do more public advocacy.”

  It took a lot for the chronically humble Andy to fully grasp that he had something to say that was worthy of being heard. And it took losing the ability to talk temporarily—and facing the risk of losing the ability to talk permanently—for him to fully comprehend the power of his voice.

  With the 2014 deadline to enroll in health care under the Affordable Care Act approaching, Andy began his public advocacy by writing an op-ed in The Advocate, one of the larger publications within the LGBTQ community, urging LGBTQ young adults to sign up for health insurance.

  “I was once invincible. Or so I thought,” he opened.

  “Like many young people, I was convinced that worries about my health were a world away. That is, until my whole world came crashing down around me last September.”

  He talked about his diagnosis and the grueling treatment regimen. And though his treatment had ended in January, he wrote that “even now my body is still aching and tired.

  “So it might not seem like I’m very lucky—but I’m certainly fortunate,” he explained, always looking on the bright side. “That’s because my employer has offered me high-quality health insurance that kept a bad situation from spinning out of control. Had my employer not provided me this coverage, I may have made the same potentially deadly mistake too many young people make: I would have chosen not to get health insurance….

  “Without health insurance, I would not have been able to afford treatment…without bankrupting myself and probably my parents,” he continued. “Without health insurance, I may not have even gone to the doctor who diagnosed my cancer, and I could be living in ignorance about the fast-spreading disease that was inside of me.”

  Andy went on to bring in the big picture. Despite the stereotype that the LGBTQ community is made up almost entirely of wealthy gay men, Andy explained that most LGBTQ people are not as fortunate as he is. One in three LGBTQ people making four times the poverty level or less had no health insurance. Nearly two-thirds of people in our age bracket, eighteen to thirty-four years old, had delayed health-care decisions because they could not afford the costs of health insurance or care.

  The ACA, which Andy admitted was not perfect, provided critical support for LGBTQ people. In addition to
the subsidies that help lower-income Americans purchase coverage, the law also provides critical protections from discrimination in health care.

  “Our LGBT community is resilient and strong, and particularly for those of us who are young and have our entire lives in front of us, it may feel like we are invincible. I’ve learned the hard way that I’m not. Cancer has taken a lot from me physically and emotionally,” he confided. “But it hasn’t taken away my voice, and it hasn’t taken away my hope.”

  No, it had not. Even in the face of significant cancer, he remained as hopeful as ever. His attitude personified what Barack Obama called “the audacity of hope.” And even in the face of losing his speech—even when he literally could no longer talk—Andy’s voice was helping to expand access to health care and improve lives. I know because I was one of the many people who benefited from Andy’s advocacy.

  After coming out to my parents in 2012, I began taking hormones in consultation with an endocrinologist. And in March 2014, just as Andy regained his strength, I underwent surgery myself.

  For me, just like the steps I had taken earlier in my transition, surgery was a step I knew was necessary to bring me peace. Surgery isn’t what makes transgender people the gender we are, but it can affirm us in that identity and further alleviate that pain I had felt so strongly throughout my life.

  Sometimes vaguely called “bottom surgery,” but more formally called gender affirmation surgery, I had been anticipating the step for two years and had to schedule it a year out. The doctor I chose, a trans woman herself, is one of the world’s leading surgeons when it comes to transitioning and one of only a handful within the United States who focus on it.

  I don’t usually talk about this aspect of my life publicly. Too often transgender people are reduced to our body parts, a phenomenon that dehumanizes us and simplifies our identities. I have been asked in the media and by total strangers intimate details about my body. Some of the questions came from people who were misguided and curious, while other people, like the angry woman in Delaware who threatened me, asked from a place of hate.