"She is made up of depths even the ocean couldn't fathom."
As many of you already know, Hope is in the hospital again. This is the second time since I last updated here. She was also hospitalized in late January, but it was just for a few days, and we thought it was just a brief hiccup. Right now, we are processing the fact that things are very different than we believed them to be.
Have you ever seen a movie where you watch everything unfold, think you know what's happening, and then late in the movie, they throw something at you that tells you that nothing was what you thought? You have to think back and apply what you now know to everything you saw, and understand what happened now that everything is completely different than what you thought it was. That's where we are right now.
I've written before about different categories of symptoms -- positive, negative, and cognitive. I've explained that while negative and cognitive symptoms affect Hope's quality of life, and ability to care for herself, the thing that matters most is that we control her positive symptoms. Those are the things that can make her potentially dangerous, and those are the things that could force longer-term hospitalization. The good news is that positive symptoms are usually the ones that respond best to medication. If you look back at my most recent update, I said that the positive symptoms were responding well, and while it's not all we'd hoped for, it was the thing that mattered most.
And now we arrive at the turn-everything-on-its-head moment that I told you was coming. Hope has just admitted to us that the voice she hears has never been gone, nor have the homicidal thoughts, though they vary in intensity. No medication, including the current one, has affected those hallucinations or psychotic symptoms at all. If you look back at her story, you'll see that we didn't know she heard any voices until nearly a year after the onset of her illness. If you remember, she said the reason she didn't tell us is because she didn't want it gone, and she knew we'd use meds to take it away. What we now know is that she immediately regretted telling us, because she really didn't want it to go. So, as soon as her meds were changed, she told us it was gone, and led us to believe that the meds were doing their job. She says she's always known that telling us is the right thing to do, even thought it doesn't feel right to her, and so she's always felt guilt about living a lie and hiding symptoms. That's why, a few months later, she told us that the voice and thoughts were back. She couldn't quite make herself tell us that they'd always been there, but we thought it had broken back through, and that we needed another med tweak to get it back under control. She's done that same routine, where she tells us it's back again, several times now. The guilt builds up and builds up until she eventually says she's hearing those things and having those thoughts again. This time, though, she fessed up to the fact that it's been a charade all along. For nearly two years, through half a dozen different medications and seven hospitalizations, this voice has been constant, and the homicidal thoughts, while varying in intensity, have been there.
Some of you may be wondering why this is such a big, catastrophic deal, rather than just the latest bump in our ride. Well, basically what has happened here is that we are becoming aware of the fact that we may not be able to fix this. She failed to respond to multiple atypical antipsychotics, and to combinations of those with mood stabilizers and antidepressants. Once she had failed multiple drugs, we were told that the chance of her responding to anything else in that class was very, very low, and that we had to make the move to the one thing they can use in med-resistant schizophrenia. We knew there was a chance she wouldn't respond to it, but more than half of people who have failed to respond to anything else do respond to Clozapine. We were cautiously optimistic. When she told us early on that the voice had completely disappeared, we were ecstatic! We had finally found something that would help our girl! When she told us a few months later that she was hearing it again, we just thought that we probably hadn't quite hit the right dose initially, and that it just needed to be tweaked. Sure enough, a quick adjustment was all it took for her to report that it was gone again. Except that we now know it was never gone. Even the last-chance drug that we were hanging all of our hopes on didn't work.
We're not done trying to help her with meds yet, but there are few options left. Going back to a regular atypical antipsychotic would be senseless. The options are to go higher on the Clozapine, or add another med in the hope that the combination would be better than the one alone. The admitting doctor we saw yesterday was not comfortable increasing the Clozapine any higher, and recommended adding a second med. That's as good an answer as any, and the med he recommended was one of the few that we might expect to be suggested, so that's what we're trying. This med happens to be one that she's taken before, and it didn't seem to help, so we know it's a long shot. But the way it interacts with the other one she's taking could be different than before. We know our chances of managing with meds are getting slimmer, but we always have hope.
I'm sure at least some of you are wondering what happens if the meds don't work. The specialist we saw last fall told us that some people just don't respond to meds. Sometimes, all they can do is take a person off of all meds, and because they can't eliminate the symptoms, they use therapy to teach the person to live with the symptoms. Even the most well-controlled schizophrenia is difficult to live with, and if you're a person who has to ride out uncontrolled schizophrenia, life is very hard. It's a disease of remission and relapse, and there would inevitably be some very hard times. With the severity of Hope's illness, it would be incredibly hard to just have to live that way. We've already seen cycles where she's gone completely flat and withdrawn, and been barely functional cognitively. If she is unable to be stabilized with meds, her life will be heartbreakingly hard. Unfortunately, it gets worse, though. Hope is a rare person whose voices are homicidal and who has homicidal ideation. If we have to teach her to live with her symptoms, it's not as simple as just teaching her to ignore a voice that narrates her actions, or to pay no attention to the two CIA guys that follow her around. She is now in her eighth hospitalization for being potentially dangerous. How can she ever live free, with a voice urging her to kill someone, and her brain telling her that it would, in fact, be fun to do so? She's never actually tried to harm someone, and maybe she never would, but it's a scary prospect. We've always known that our best bet is finding a way to make those symptoms go away with medication. Facing the fact that she just has to live with them would be crushing. I don't know what that might mean for her future.
I'd love to be able to let you all know what our plan is, but honestly, we don't have one. Her therapist believes that a longer-term hospitalization may be necessary. We're not talking forever, but a few weeks to a few months maybe. The case can be made that since she is sicker than we thought, more resistant than we thought, and less honest about her symptoms than we thought, we do need to do something bigger than we've done in the past. On the other hand, our insurance company can say that med changes and therapy can be done outpatient, and that she's not imminently dangerous enough to require in-patient. I mean, yes, her brain keeps telling her to kill someone. However, it's been saying that for a long time, and she hasn't harmed anyone. That may be a gamble they're willing to take. Right now, she's in the hospital. There is a possibility they'll say that despite this new information, she's not currently dangerous enough to need to be there, and send her home soon. There is also a possibility that they'll look at the bigger picture and decide that since we've never been able to get her stable, despite two years of our best efforts, and because she is telling them she's feeling homicidal, she needs to be in-patient somewhere for a bit. As strange as it sounds, those incredibly different outcomes are both quite possible. We're in a really uncomfortable limbo at the moment, as we wait for the doctors at the hospital to decide what to do. After they come up with a plan, we take that plan to her outpatient providers and decide if we agree, and if not, we regroup and figure out the best way to help her.
I know this is very long already, but I want to address one more thing. I've mentioned quite a bit here about Hope's homicidal ideation, and that's not something I address very often. It's really, really hard to put that out there. While I want people to know what we're dealing with, and understand exactly why her illness is such a uniquely big deal, I don't want people to judge her. I don't want anyone to think less of her. Our Hope is an incredible person. Her heart is kind, but her brain is sick. These thoughts are not her own. I know that's hard to grasp, but it's true. A comparison that might make more sense is how a person with Tourette's might yell obscenities or racial slurs that they would never say otherwise. It's not proof of a closeted racist, it's proof that a malfunctioning brain is a very strange thing. Our sweet girl has a beautiful heart, but her own brain has turned against her and started telling her all kinds of strange things, one of which is how fun and amusing it would be to kill someone. It is important that people understand that she has never harmed anyone. It is important to me that people understand that they don't need to be afraid of her. No one who treats her is afraid that she's just going to publicly attack someone one of these days. Her thoughts of hurting someone are very specific, and she's been very clear that she would not just pounce on someone in public, where she'd be immediately stopped and apprehended. I promise you that I am not endangering you or your children if I bring her to a class or activity where you are, or if you see us at the mall. She is never left alone, even at 13 years old. She lives in a house where anything that could possibly be used for harm is kept in a locked closet. She sleeps in a bedroom with an alarm on the door, so she can't open it at night without alerting us. We spend every moment of every day thinking about and planning for her future, so that we can be sure that she, and those around her, are safe. Right now, though, we don't feel that there is any risk in letting her do the few well-supervised and well-structured things that she does. I wouldn't gamble with the possibility of her doing something I'd have to live the rest of my life with, and I promise you that if I thought she was unsafe to even interact in public, I'd keep her away. Please don't fear her. Please don't shun her. Her mind is doing so many very strange things, but her heart is good. Her life is a nightmare, and her illness is unfamiliar to most, but ultimately, she's just a 13 year old little girl. My heart is raw from discussing details that I know will make some of you recoil and some of you fearful, but I ask you to please try to tune your hearts to compassion, because that's what she needs most.
As always, thank you all for the prayers, texts/calls/emails/messages, and offers of help. We appreciate each one more than you know. Sometimes it's hard to just keep breathing and moving forward, and we know your prayers are carrying us. Every kind word strengthens our battered hearts, and we are thankful for every single person who God has placed in our lives.
