(Not) Turning 26 Today

Sometimes love just isn’t enough.

Those were the only words I could manage to write the day after Rivena died. In the numbness of a long flight back home, I pulled out a pen and the new journal that my kids had given me for Christmas a few weeks earlier, and those 5 words were all I could muster.

As those of you who know us are aware, our sweet daughter Rivena lost her battle with depression on January 28, 2018. While we had been very cautiously optimistic, she died by suicide despite our best efforts to love her, support her, and get her the help she most desperately needed. Like I wrote in my last blog, Rivena had been in a residential treatment program following a rather horrific suicide attempt last September. And while we worried every day, we held out some hope that she had found the ability to manage through her depression and stay safe. We could not have been more wrong.

A thought about what follows

This is not a piece that is designed to solicit empathy, pity, or any form of sympathy for our family. I am writing this for two reasons: one, because there is something very cathartic for me in talking about Rivena, and two, because there may be something in here that resonates with somebody else who has had similar experiences. I apologize in advance for the disjointed nature of this, but such is the stream of consciousness for a grieving parent. I invite you into our lives to make the point that we need to do whatever possible to help those we love, even if in the end, that love itself is not enough.

Our fears about depression

When I first penned my “Unlikely Advocate” blog, my intention was to be an advocate to and for the transgender community, a segment of our population I was just beginning to become familiar with through Rivena’s own transition. One of my greatest fears upon learning of our daughter’s gender identity was in the alarmingly high rate of suicide among people who identify as transgender. Because Rivena had a history of depression that went back as far as age 8, my sensitivity to what that might mean for her was already off the chart.

Rivena came out to us in January of 2017, the same night she graduated from an intensive 7-month long coding program. At the time, she seemed to have an enormous weight lifted from her shoulders. She started a great new job as a web developer in February, the same month she began hormone therapy to begin her transition to her true self. And she appeared to be genuinely happy for a couple months. She seemed to enjoy her job, enjoy the freedom to live, work, and present as Rivena, and enjoy being able to donate to some personally meaningful causes with her newfound income. There was an outward happiness and energy about her that gave us hope and began to calm some of my fears.

But with time, there began to be a dark side. For years before coming out, Rivena had essentially been able to suppress many of the more difficult thoughts and feelings she routinely had. And while there is no way I can know this with complete certainty, I believe that as her hormone levels increased, she was forced to feel her emotions in a way that was new, powerful, and completely unfamiliar. This became starkly clear when our family was all together in New York for our youngest daughter’s college graduation last May. Rivena had a complete breakdown while attempting to spend a day working remotely from our hotel room; we had left her alone for the day and returned to find her wrapped in a sheet from the bed, huddled in the corner of the room, crying and incapable of even the smallest action. Her depression was back (not that it was ever truly gone), and back with a vengeance.

The terrible state of mental health care

For anybody who has experienced depression themselves, or anybody who has been close to someone who suffers from depression, you know how all-consuming it can be. And for all the efforts to eliminate the stigma of mental illness, and to encourage people to ‘just talk to somebody,’ I can tell you without question that our mental health treatment system is completely broken.

The challenge of finding someone to ‘just talk to’ is so much harder than it needs to be. And even with help from others, once inside the system, there can be so many stipulations and pre-requisites that getting appropriate care is nearly impossible. Even worse, we found out in the worst possible way that some of those who put themselves out as experts often don’t know how to treat patients who don’t fit into a neat, tidy, pre-defined guideline treatment program. But I digress here – this is a separate topic for another day.

Finding long-term mental health care that goes beyond the standard ‘stabilize and release’ protocol of most inpatient treatment facilities is near impossible. In Rivena’s case, she required long-term residential care. Unfortunately, and despite our best efforts, we could not find a single facility in our home state of Colorado that would accept a patient without a dual diagnosis – in other words, they required both a mental health diagnosis and either a substance abuse problem or an eating disorder. And even those who purport to carry the banner of mental health as advocates don’t always want to take on the tough stuff.

I reached out to Andrew Romanoff, President of Mental Health Colorado in early May to talk about the lack of resources in the state that led us to take our daughter to what we only now know is a deeply flawed facility in Utah where Rivena ultimately died. After a couple emails back and forth, he passed me on to a staffer, who then asked me to fill out an online form to be part of their advocate community and call if I had any questions. All I wanted was a conversation, and even the advocates wouldn’t engage.

Transgender health care

The subject of health care in general for someone who is transgender is even more challenging. I will never truly understand what it feels like to be in someone else’s skin – to feel like I am in the wrong body. But the gender dysphoria felt by those who do is only exacerbated by the black and white binary coding that is baked into every single treatment chart. Every state has certain unique requirements for getting legal identification that matches gender identity, and in almost every case the process is a rigorous endeavor. That said, Rivena had not yet managed to legally change her name or gender when she found herself fighting for her life in an ICU last September.

As a protective father, it was all I could do to make sure the teaching rounds conducted for the hospital residents were done outside of Rivena’s room, because every conversation started with “patient is a 25-year-old male…”. For someone in intensive care, following an attempted suicide, who has been clinically diagnosed with gender dysphoria, the harshness of the treatment protocol was one more way of saying to our kid, “you are wrong, and you don’t fit in.” I found myself increasingly losing my patience with doctors and nurses who were simply reading from a system-generated chart, and continually tried to educate those who were good enough to listen. For her part, Kim placed a sticky note on Rivena’s chart with her chosen name and reminder of pronouns – and I should note that many of the staff were very willing to adapt. We found people in health care to be incredibly compassionate. We found the systems they used to be very unforgiving.

Ultimate slap in the face

Once inside the mental health treatment system, insurance coverage is spotty at best. In Rivena’s case, she was fortunate to have decent employer coverage that we were able to continue through a COBRA election after she lost her job; with multiple inpatient treatment stays starting last August, she simply couldn’t keep her position in a 15-person media company. But even good coverage from a well-known insurance company can have glaring, impersonal, and unforgivable holes.

Using their own formulas for determining what appropriate care should look like, Rivena’s insurance company sent her a notice – after the fact – that her residential care coverage had been discontinued as of about ten days earlier. The letter was authored by a board-certified psychiatrist from the insurance company – someone who had never spoken to, let alone met, Rivena. In his letter, this psychiatrist literally stated, “You are doing better now.” This letter was dated January 31, 2018, three days after Rivena’s death. We received this in the mail about a week later, just before her memorial service.

Worst experience of my life

Rivena’s death came while my wife Kim and I were visiting our youngest daughter Madison in New York. We had planned a special trip to enjoy a weekend in the city with her. On Saturday night, while waiting for Maddie to finish her shift at work, Kim and I talked to Rivena. We had what seemed like a particularly good conversation, with her telling us about her new apartment, an outing to a used book store she had planned for her treatment group, and we talked about an upcoming family visitation weekend; she sounded modestly upbeat – something of a rarity for her. At the end of our 45-minute call, she took the time to say a separate goodbye to both Kim and me – again, a rarity when we were both on the line. Did she know something then?

The next day, we had a great time with Madison and her boyfriend. It started with a gospel brunch in Harlem, included drinks at a swanky Midtown hotel, our first ever 4-D movie near Times Square courtesy of Maddie, and ended with a nice dinner together. We parted ways, with Maddie going home uptown, and Kim and I back to our hotel. It was about 10:30pm, while sitting in the lobby of our hotel when Kim received a garbled voicemail from a Utah area code… with Rivena in a Utah treatment facility, our fears were immediately on high alert. We took the elevator to our room before returning the call, and by the time we were inside, we both instinctively knew.

Being unable to make the call herself, Kim handed her phone to me. My hands trembling, I put it on speaker and dialed the number back that had just called us. The tenor of the voice on the other end told us immediately without saying a word – it was the program director from the treatment facility where Rivena lived. Before saying anything, she asked us just one question: had we spoken to the police? Everything else was a blur. I shook so violently I could hardly hold the phone (and I shake now again just thinking through this memory).

The next 48 hours exists in my head like an abstract painting, with shards of harsh clarity and cloudy visions interspersed randomly together. I remember getting a car up to Maddie’s apartment in Harlem – we had to tell her in person. I remember the three of us going back to our Midtown hotel, where we lied awake all night, alternatively crying, screaming, muttering senseless things, staring at random art deco patterns on our shoebox size hotel room walls, and having foggy conversations with family, police, staff from the treatment center, an organ donor organization, and the morgue. The next day, I managed to get United Airlines (thank you for your kindness) to squeeze us on a flight back home, Kim and I like zombies shuffling through LaGuardia, then sitting and staring at nothing through silent tears on a four-hour flight trying only to get back to the relative comfort and newfound pain of being home.

And so, the next chapter of our lives had been set in motion.

What it means to be a survivor of suicide

The actual impact on our family has been profound. Losing a loved one, especially a child, in any manner is a tragic, sad, and soul-crushing experience. Losing a child to suicide is absolutely devastating. As parents, we are hard-wired to protect our children at all costs. We dedicate hours that turn to days that turn to years that turn into entire lives toward helping our children grow to be happy, self-assured, thriving adults. To know that my daughter’s depression has taken that opportunity away is something we will forever have to live with. The questions we are left asking are too numerous to even begin to comprehend. The hole left behind is real, it is deep, and something I don’t see going away.

One of my aunts lost her son, my cousin, many years ago. She talks about her life existing in two parts, one before his death and one after. I am finding this to be painfully accurate. For our immediate family, each of us has been forever changed. Without getting into specifics, Kim and Madison have both seen their lives turned upside down in the months since Rivena’s death, including Maddie making the difficult decision to leave New York and move back to Colorado.

As for me, I still struggle to find solid ground, and have seen my grief manifest itself both mentally and physically. I had taken a new job just prior to Rivena’s death (largely to cover the out-of-pocket costs of her treatment), one that was a perfect match for my background and skills, and I had the opportunity to build a new business for a consulting firm I deeply respect. Unfortunately, I found quickly that I lacked the emotional bandwidth required to put the necessary creative energy into building a new business and had to step away. (Many thanks to the team at FUSE Research Network for your understanding.)

Physically, I have been unable to maintain the routine I worked so hard to build over the past decade. As a triathlete and coach, I stopped regularly riding, running, and swimming – my motivation has simply flat-lined. I’ve struggled through two marathons but have not actually raced at all this year. At the same time, the additional stress of grief has exhibited itself in a couple of ways; not only have I put on weight, but my immune system has been weakened to dangerous levels. As a result, I’ve spent the last 3 weeks on oxygen thanks to a serious case of bacterial pneumonia. I have plans to return to race triathlon again in April 2019, something that today seems so far out of reach. To say that I am starting from square one is not in any way an understatement – my first test back on my feet will be to simply walk around my neighborhood.

One of the harder challenges to navigate for us has been social. We are blessed beyond belief to have a very large circle of friends and family who care deeply about us. They have been there to help us through the darkest days, and they continue to regularly check in. For those of you in that camp (and you know who you are), know that we remain eternally grateful. Our challenge comes in the form of not wanting to be ‘those people’ who are always bringing things down. We don’t yet have much desire to laugh, play, and socialize. And we fear that even the best of friends begins to fatigue after a while. I should know… I don’t want to be in such a dark place, and I certainly don’t want to continually drag others down into this hole with me. But it’s also our reality for now.

A note for people who are transgender and their parents

We are still working to find a positive way to honor the life of Rivena. At this point, I don’t have any real answers on what that will ultimately look like. But I will say this – my daughter opened my eyes to what it means to be a person who happens to be transgender. As I have written before, my personal views were uninformed before Rivena came out to us (see my “Unlikely Advocate” blog from November 2017 for specifics), and I am thankful to have learned from her the importance of kindness and acceptance.

One thing that breaks my heart is to know how many parents of transgender individuals have turned their backs on their own children. I absolutely understand the concept of feeling like you have ‘lost a son’ when that son tells you ‘he’ is a transgender woman. But I also know all too well the debilitating, all-consuming grief of actually losing that person.

I would give anything to have my daughter back today. To be able to hug her. To tell her we love her. And to watch her grow into the person she was meant to be. Gender doesn’t matter. I would give anything to have my kid in my life.

If you are a person who has had a parent turn their back on you, know this: Even if you don’t feel it, you are cared for. You matter. You matter to me, and you matter to the memory of my daughter.

Sometimes love just isn’t enough

Back to those words I scribbled on that long flight home from LaGuardia on January 29th. Today would be Rivena’s 26th birthday. Our love for her burns brightly, even in death. And while that love will never be enough to bring her back, we will never stop trying to carry her memory forward.

Happy birthday, kiddo.

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