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What do you want people to know?

Note: the below includes reference to managing mental health challenges. 

What do you want people to know?

On the outside, you see a 21-year-old boy. Handsome and fit. He likes to surf, walk his dog, and ride his bike. He likes to be busy; to have purpose. 

"You don't look like you should be in the ICU. When are you going home?" said the harried nurse, stopping in when the red call button was depressed accidently. He is not our nurse. Our nurse understands. She is kind and funny. She likes to sit with us and talk about dogs. This guy does not sit. He is not funny. 

On the inside, what you don't see is a war. Screaming. Voices. Some familiar; some less so. Urgent and angry. They are heavy and yet there is no way to drown them to the bottom of the ocean right now. The meds are not helping. The voices demand more meds to put an end to things. More and more. He demands more meds to stop the voices' demands for more. That's how we ended up here. Too much. Too much gets you a first-class ride in an ambulance. 

"Who are you?" asked the discharge doctor who swung by on our last day in the ICU. "I am his aunt. My name is Robyn." I have been here at his side since admittance, sleeping on the couch in his room. My job is to translate and to keep him safe.  She turns to look at J. "Where is your mother?" He and I exchange glances, silently negotiating who will take the question. It's my turn. "His mother died several years ago." "Oh. I'm sorry," she mutters and then quickly confirms that his heart is no longer at risk, and he should call the numbers on the discharge documents---the documents he is unable to read---to follow up in a day or so. A new med will be available in the pharmacy shortly. Stop taking all the other ones. The document includes the wrong med history. She did not listen. I correct her again. A new document is created. It is incorrect in new ways. Someone forgot that the mind is part of the body, too. It is not enough to fix the heart alone.

We start over. Again. 

We are sad. Again. 

But we are hopeful. Always. We have one great resource, and we are going to meet with her in five minutes.

"What do you want people to know?" I ask. This was his idea. He wants to share his story so that others won't feel alone or embarrassed. He wants to be seen and heard. He doesn't want people to think he's seeking attention. His mind quickly cycles through the layers of symptoms and emotions of the week. "I want people to know that they can't give up. I want to give up, but you just can't. I want people to know that joy is important. If you have joy, don't lose it. I want people to know that the person you see is different from the person on the inside." 



Schizoaffective Disorder Bipolar Type

Schizoaffective disorder affects 0.3 percent of people in the United States. It affects men and women equally, and men may develop the disorder earlier in life. It can involve extreme mood swings in combination with hallucinations, delusions, disorganized speech, and disorganized behavior. Although not curable, medication helps with symptom management. 


Since sharing this post, we have received such a beautiful outpouring of support. Thank you to the many who reached out. Justin was very touched. It was helpful to be able to share in this way so that his very personal story could be viewed in a larger context amongst our greater, loving community; that it could simply be known rather than a whisper or in a one-on-one conversation. Individual conversations can be more difficult to navigate, as it often means someone is pointing the finger at cause, offering well-intentioned but ultimately unhelpful suggestions, or attempting to shoulder guilt for the past. As you can imagine, he is not in a place to manage others' emotions---nor should he. We are very focused on the present so that we can carve out a meaningful future.

During this hospital visit, we were so struck by our team of nurses— how optimistic we both felt when we were greeted by understanding and kindness. They understood our version of normal, planting the seed for sharing in this way, as it confirms when we take a beat to simply take a person in without judgement, it creates hope and possibility. I’ve written a lot about quality of life recently. In other words, how we go about our days, which are on a constant scale, measuring our interactions and choices. It’s easy to get caught up in the heaviness—-the crises; the dramatic—-or wishful thinking of a different life. But what happens when you tip the scale and focus on the incredible intricacies that connect us; that stir our interests and imagination? These outweigh the hardships every time, but it requires taking the time to look and to actively attempt to understand. No small feat.


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