Apr 8 2020 A different kind of reflection

Thanks to everyone who’s been reading and sharing my musings. I’m genuinely humbled. I like to think of myself as private and introverted, which mostly I am. But here, I’ve been sharing the highs and lows of my heart and mind. I wanted to explain a little about my situation, for those who don’t know. I share this with some trepidation, as I do not want to break anyone’s confidence, or tell stories out of turn. What I share here is entirely factual, and entirely my perception. I apologize in advance if my perception differs from any reader’s.

In December 2018, my husband and I visited our loved one, who was moving very, very slowly, looked different than previous visits, and when they spoke, we didn’t understand what they were trying to say. We took them to the hospital, where they were kept for observation, and eventually held for 5 days on a ‘mental health hold’. We were not living in the same town at the time, so we left them at the hospital.

Five days later, we realized they’d been released, when they’d posted information on social media. The following week was Christmas, and we visited them. Their behavior, language and appearance remained concerning, so the following weekend, I returned to take them back to the hospital. They were given a diagnosis that is a persistent, significant mental illness, with no known cure. To be clear, I am not stating they have this disease. Diagnoses like these are just a way to describe and contain a bunch of symptoms, and they may help narrow down treatment options.

This time, they were held for 14 days, at the end of which there was a painful court hearing, to determine whether they should be ‘committed’ to the State’s care. The standards for such commitment are very high, because people’s civil liberties are taken away – something our Constitution takes very seriously. To be committed, someone needs to be a serious risk to themselves (think suicide), to others (think homicide), or unable to meet basic needs (think likely to die within 24 hours on their own). Our loved one was committed for 6 months. All that means is that the State makes decisions.

After another week, or for a total of 21 days, they were released to the care of my husband and me, with all of the oversight and requirements still retained by the State (think medical parole). For the following 5 months, we cared for our loved one, and got them to appointments, and dealt with temporary setbacks.

When the commitment was over in July 2019, compliance with the now-not-required treatment plan waned. Some of the treatment requirements significantly affected their previous life choices (think about what 22 year old’s do for fun). Some of the other treatment requirements left them feeling badly, as the medicine that had been prescribed wasn’t entirely effective, and had crappy side effects. Add to this a complicating side effect of the disease which is an absolute lack of awareness. The disease actually affects the part of the brain that gives us understanding of our own behavior, thoughts, and relative normalness. For more about this symptom, I’d encourage you to look at this fantastic Ted Talk, by Dr. Xavier Amador. All of this created an increasingly stormy summer and fall.

By December, our loved one wanted desperately to move out of our home (like any 23 year old would). Shortly after Christmas, they ran away, and eventually were picked up by the police for erratic behavior downtown, and taken to the hospital, where they remained for nearly 2 months. Since that release in the end of February, they have been in and out of the hospital three times. Currently, they’re living with us, and extremely dissatisfied with the arrangements, and my heart breaks for them. 

One of the complicating factors, I believe, is social media. Currently, my loved one has nearly 80,000 followers on Instagram, and videos of them have circulated on Facebook, one reaching nearly 3 million views. They desperately want to be rich and famous, and through social media, they’re approaching famous. I don’t anticipate riches will come, but stranger things have happened. The comments from, and influence of these social media followers and fans is significant, uncontrollable, and wildly varied.

In response to the illness, and in attempts to care for our loved one, we’ve cancelled vacation plans, moved 5 times, and bought a house. I say this not for sympathy, but because their illness affects us all. What I share is my story, not theirs.

For everything I’ve experienced, for all the emotions I’ve had, for all of the questions and fear about the future I’ve voiced, I am certain they pale in comparison to their experiences, emotions, questions and fear.

This morning, I’m thinking about story telling. About how we all have stories. Our stories influence everything we see and think. Scripture is full of stories from people who had a particular perspective and experience. And interestingly, our stories overlap with others’ stories. We can look at the same event from very different perspectives so our stories about that same event will be very different, just like the various recounts of Jesus' life. Stories are powerful, and speak a new thing into the world. 

Today, I want to remember that I have a story, and so does my loved one. Our stories about the same events may not look or sound the same. I have no business telling anyone else’s story, and I hope I have stuck with telling my story, not theirs. And I hope that others who know their story refrain from judging anything – about their behavior, actions, intentions. Their story is solely theirs to tell. I honor and support that. And in a strange and exhausting way, I’m genuinely honored to be a bit player in their story.