"I've been traveling in the desert of my mind. And I haven't found a drop of life. I haven't found a drop of you. I haven't found a drop... I haven't found a drop of water." Addict With a Pen, Twenty One Pilots
Those of you who know us in real life know that our sweet girl just spent another nine days in the hospital. I know people come here for details, so here we go. It's been a long time since my last update, so I'll take you through the happenings since last summer, and then tell about the current situation. Settle in, friends, this may take a while. Also, I'd like to state up-front that I will be touching on self-harm and suicide. If these topics may be triggering for you, please skip this post. <3
The last time I updated, Hope was undergoing ECT. Having exhausted med options, we were looking for anything that might help, and it was worth a try. We ended up doing 20 treatments (well above the six to twelve average course) and didn't see much benefit, if any. ECT works best for depression, and we do think there may have been a little effect on that. We didn't expect it to help psychosis or anything else, and it didn't.
For really the entire time since that last discharge, things have been unstable. We've had to talk frequently about whether or not it's time to go to the hospital. The self-harm has continued; the longest stretches without cutting have been just a few weeks. We're not talking about a few cuts on the wrist, either. She often makes hundreds of cuts at a time, covering entire sections of her body. As dramatic as that sounds, we've been dealing with it on an outpatient basis. What might send someone else to the hospital, or what might have taken us there earlier in her illness, may not mean the hospital for Hope. We strive to keep her at home as much as possible, and that means saving hospitalizations for only when we're fearful for her life. Cutting is a terrible coping skill, but not life-threatening. Still, we've had to talk many times over the last number of months about the hospital, as she's struggled with suicidal ideation as well. More on that in a bit.
Those of you who know us in real life know that our sweet girl just spent another nine days in the hospital. I know people come here for details, so here we go. It's been a long time since my last update, so I'll take you through the happenings since last summer, and then tell about the current situation. Settle in, friends, this may take a while. Also, I'd like to state up-front that I will be touching on self-harm and suicide. If these topics may be triggering for you, please skip this post. <3
The last time I updated, Hope was undergoing ECT. Having exhausted med options, we were looking for anything that might help, and it was worth a try. We ended up doing 20 treatments (well above the six to twelve average course) and didn't see much benefit, if any. ECT works best for depression, and we do think there may have been a little effect on that. We didn't expect it to help psychosis or anything else, and it didn't.
For really the entire time since that last discharge, things have been unstable. We've had to talk frequently about whether or not it's time to go to the hospital. The self-harm has continued; the longest stretches without cutting have been just a few weeks. We're not talking about a few cuts on the wrist, either. She often makes hundreds of cuts at a time, covering entire sections of her body. As dramatic as that sounds, we've been dealing with it on an outpatient basis. What might send someone else to the hospital, or what might have taken us there earlier in her illness, may not mean the hospital for Hope. We strive to keep her at home as much as possible, and that means saving hospitalizations for only when we're fearful for her life. Cutting is a terrible coping skill, but not life-threatening. Still, we've had to talk many times over the last number of months about the hospital, as she's struggled with suicidal ideation as well. More on that in a bit.
In mid-November, we found out that my husband's contract job would be ending soon. (While I have pseudonyms for the kids on this blog, I've never named the two of us. For purposes of this story, we're just mom and dad, so from here on when I say Dad, you'll know I mean Hope's dad, not mine.) For the last five years, Dad has been working as an independent contractor for a large corporation, but the functions he performs are being brought in-house, which means his contract is ending. The one positive is that it wasn't an immediate end; the hours decrease over several months, giving some time to find something new. Still, it has been an incredibly stressful situation. From the time he was informed of the coming change, he had just two weeks before the first reduction in hours. We were heading toward a very slow time for everything, including hiring, as we approached Thanksgiving, Christmas, New Years. That stretch of holidays is a really bad time to be looking for a new job. Meanwhile, our life is very expensive. Health insurance premiums alone were just under $2,000 a month through the end of 2017, and $2,500 a month now. (That's just the premium, of course. Monthly costs for copays, coinsurance, prescriptions, etc. are on top of that, and we're now at the beginning of the year, so deductibles are reset.) It's a huge financial burden in any situation, and even more stressful when you're looking at shrinking hours and unsure what comes next.
Dad has been killing it when it comes to searching for new jobs while still working the old one. He's had essentially no downtime in months, spending hours each evening looking for and applying to jobs, talking to recruiters and potential employers, interviewing, etc. Despite the slow time of year, there has consistently been movement. The odds aren't in your favor for any given job, though. They see so many resumes for each position (one recruiter said it's over a hundred per listing in our area in his field,) and even if you get to the point of being interviewed, there's always a good chance that someone else has experience or skills that more closely match what they're looking for. For the job he was most interested in so far, with a huge company that's known for having great benefits, he got through three rounds of interviews -- the third round was just him and one other person -- and they ultimately chose the other candidate. We were both, honestly, pretty crushed. It happens. It was great that he got that far. But man, did it feel horrible to hear that they'd gone the other direction.
Meanwhile, right at the end of December, Dad got a job offer. I don't want to sound bratty or ungrateful; we are very thankful for it. Some of the details are less than ideal, though. He's not excited about the specific duties of the job (he's a CPA with a master's degree and a part of it is essentially bookkeeping,) it's a very small company with nowhere to go from this position, and the pay is not great. Our biggest concern is always health insurance, and while the company does have benefits, the health insurance will be expensive to use, with a higher deductible, copays, etc. than our current plan. Additionally, this employer does a 90-day probationary period, and health insurance won't kick in until after 90 days. That means that despite a much lower salary than Dad's previous job, we'll still have the expense of paying our current, very expensive private plan for the next three months. We'll be way in the hole, pulling thousands of dollars from savings each month. We'll also be paying a ton out of pocket because of the new year and new deductible, and then when we get on the employer plan, we'll have a brand new (and high) deductible, and continue to pay pretty much everything out of pocket. *sigh* So yeah... there's a lot about this job that isn't ideal. We hoped another offer would come before he had to accept or start this one, but that didn't happen, and we couldn't turn down an offer. Dad started his new job a couple weeks ago. He still has the contract job, with its decreasing hours, on the side. We can't afford for him not to work out the entire time available to him, so he's working a pretty exhausting schedule right now. Hours will get lower over time, though, and he'll be totally done by the end of March. That will mean a more relaxed schedule, but it'll also mean that our monthly income won't cover our expenses. Obviously, he continues to pursue other opportunities. No one wants to be the guy who only stayed at a job for a short time, but he had to accept the offer, and he also has to keep looking for something that's better suited to our needs. We continue to hope that the right thing comes along soon.
I'm still doing some freelance stuff on the side, mostly editing, but also occasional research projects. The amount I work varies widely. In December, I did exactly one small project. So far in January, I haven't had a week when I worked fewer than 25 hours. Honestly, that's more hours than ideal. My life is structured around being a full-time parent, which means I should have plenty of time to be involved in every activity under the sun, and I am. There's no way to disengage from any of it, because I'm not just a regular volunteer anywhere, I'm on the board of this, or I'm coach or manager of that. I wouldn't want to give up any of it anyway. I love it, and while it is tiring sometimes, staying engaged is good for me. When life is "normal," I can balance all of these engagements with taking care of the family, all of Hope's appointments and needs, and working on the side. When things are as stressful as they've been the last few months, and especially right now, it's hard to work the number of hours I currently am. I'm really thankful for freelance opportunities, though. I can work when I can fit it in, and not have to miss anything else. And realistically, next month will be slower, and then I'll be frustrated not to have much work... while simultaneously enjoying the slightly slower schedule, because life keeps me busy enough already.
Enough about family updates, though. Let's talk about Hope. You're here to find out how she's doing, and the answer is that she's been really struggling. Aside from the continuing, and extreme, self-harm, she has expressed for a long time that she often wishes she were dead. We've avoided the hospital only because what she's saying is passive. She's not saying she wants to, or plans to, kill herself. She's saying that she wishes she would die because her life is so painful that she doesn't want to have to keep living it. She has insisted, though, that she wouldn't actually try to kill herself, mostly because she's scared to die. With all of the safety measures we have in place, and with her insistence that she doesn't intend to make an attempt on her life, we've kept her at home. There have been frequent conversations about the hospital, and even a couple times where her psychiatrist said she felt most comfortable going that way but trusted that I'd know if it was time and let me make the decision. So what pushed us over the edge now?
Hope told us that she was terrified that she was going to kill herself. She doesn't want to but feels like it's inevitable. There are several factors at play. The voice has been urging suicide more frequently, and she says she doesn't know how to not do what the voice tells her; she often does what it says even if she doesn't want to. She can't explain why, but she feels powerless against it. She said she's resisted so far, but is afraid that she won't be able to for much longer. On top of that, she's been feeling less afraid of dying, and more indifferent about it. She doesn't always feel indifferent, though. She is at least sometimes connected enough to recognize that she's sometimes feeling indifferent, and sees that that indifference would make her more likely to do it. While fear of death has kept her safe in the past, the only thing that has stopped her recently is thinking about what it would do to the people who love her. Sometimes she's pretty disconnected from her emotions and rational thoughts, though, and that alone may not always stop her. * Here's where it gets a little more detailed, and you may want to go ahead and skip the rest of the paragraph if you're worried that it may trigger or upset you. * The most alarming thing is that she took a few steps toward carrying out a plan. She made a noose. She figured out where she could hang it. She put it there and tested whether or not it would hold her weight. (This was why her previous attempt failed.) She measured to make sure her feet wouldn't be able to touch the ground when she did it. Basically, she did everything she needed to do, stopping only before the actual act. There aren't words to express how all of that feels, and I'm not sure I'm ready to even try to get into it, so I'm just going to move on with facts here. Suffice it to say that this news is heartbreaking and terrifying. She still had the noose; she'd resisted using it so far, but kept it.
Obviously, the detailed plans and even steps she carried out alarmed us. When she told us that this had been going on, she was sobbing and begging me to help her, because she was terrified. We went straight to the hospital. As you know if you've followed us for long, we've exhausted med options, and even tried ECT. Her case is severe, as very early onset schizophrenia tends to be, and she doesn't respond well to treatment. We're fortunate that a majority of her 14 hospital stays have been in the same hospital, and the staff knows her well. She's treated well there, and we don't have to go through the huge backlog of history to figure out what to do next. However, everyone agrees at this point that there's not much we can do beyond keeping her safe and hoping the break/change of pace helps her move into a better place, at least for a while. She has never been stable for long, and she may never be. Things will always get bad again. But if we can ride out the worst times, we can hope for periods of relative stability before we're at a crisis point again. Ultimately, her best support system is at home (at least she has that; it's sadly not true for everyone) and the best thing we can do for her is to keep her at home as much as possible. There are always hard conversations about whether or not we have to consider keeping her safe by using a longer-term hospital, but we always arrive at the decision that she would be beyond miserable like that and that we have to give her the quality of life she desires and deserves. You can protect your kids by never letting them do anything, but you also have to let them live and have experiences that make an enriched and fulfilled life. Her case is a really extreme version of the same struggle all parents go through -- we make decisions where her life is literally at stake if we choose wrong -- but like everyone else, we're doing the best we can.
We leave this inpatient stay feeling happy to have her home, and also scared. I've been transparent before about my fear of losing her. Many of you know that Dad opens her door in the morning to spare me having to do so, because we feel fear/uneasiness every single morning until we see that she's okay. Many of you know the statistic that one in ten individuals with schizophrenia dies by suicide. Bringing her home today brought mixed feelings, as is often the case. There is a painful emptiness when she's not here, but it's hard to have to spend all day every day assessing how she looks and managing everything that comes with her illness, and it's hard to wonder all the time if you're making the right decision. Still, I'd choose her a million times over. I'd rather walk through every difficult moment with her than ever have to know a moment without her.
As for how Hope is right now, it wasn't a great evening. She is usually giddy when she's discharged, but it's only a short time before everything else pushes that feeling away. She commented on the drive home that the world seems really overwhelming after she's been in the hospital. There are so many sights and sounds at once. She sometimes struggles to process it all anyway, and this is definitely true after coming from a stay in a place where everything is so quiet and uniform and under-stimulating. She was sad and quiet this evening, and if this is how she feels in the honeymoon period of being newly home, I expect she'll continue to struggle. It's not that we expected big changes, considering that all we did in the hospital was increase the dose of one med that we don't think is helping at all anyway, but we held out some hope that spending a little time there would somehow reset her perspective a little.
If you're looking for specific prayer requests, or wondering how you can support her or hold space for her, here are some thoughts. One of her heaviest burdens is that her self-esteem is so low. It's so hard to be a teen girl in the best of circumstances, and when you add in that her rare and extreme illness makes her feel so broken and so different, and then pile on top of it that her auditory hallucinations tell her horrible insulting things about her all day long, it's just so much. Please pray that she somehow learns to see how precious and incredible she is, and help us to remember to focus on reminding her rather than feeling frustrated at the ways in which her illness makes things difficult. Please pray that we are able to properly assess safety concerns, and act appropriately to keep her safe. Please pray for provision, that a more suitable job/benefits situation comes along soon. Please pray for these exhausted, overwhelmed parents. Please pray for the little brother who endures so much. (She loves him more than anything, and told her hospital therapist that the hardest thing for her is knowing how much it all must hurt him. She says that she'd find it agonizing to see him do things like make cuts all over his body, or have to fear losing him, and she imagines he must feel that way as well. Honestly, it is hard for him. And it skyrockets anxiety issues for him, and makes him struggle in ways he shouldn't have to. But none of it is her fault, and she never asked to have to struggle this way either.)
Lastly, I just want to thank all of our family and friends who continue to love her so perfectly. She expressed to me that she doesn't understand why she feels the way she does when she is fully aware that she has the absolute best support system in the world. She knows that so many people struggle alone, and while she sometimes feels alone, she does know that she is incredibly loved and that if she'd just reach out, there is always, always someone there for her. I wish I could express how deeply touched I am by every single word of encouragement and every kind gesture. My heart overflows with gratitude.
Dad has been killing it when it comes to searching for new jobs while still working the old one. He's had essentially no downtime in months, spending hours each evening looking for and applying to jobs, talking to recruiters and potential employers, interviewing, etc. Despite the slow time of year, there has consistently been movement. The odds aren't in your favor for any given job, though. They see so many resumes for each position (one recruiter said it's over a hundred per listing in our area in his field,) and even if you get to the point of being interviewed, there's always a good chance that someone else has experience or skills that more closely match what they're looking for. For the job he was most interested in so far, with a huge company that's known for having great benefits, he got through three rounds of interviews -- the third round was just him and one other person -- and they ultimately chose the other candidate. We were both, honestly, pretty crushed. It happens. It was great that he got that far. But man, did it feel horrible to hear that they'd gone the other direction.
Meanwhile, right at the end of December, Dad got a job offer. I don't want to sound bratty or ungrateful; we are very thankful for it. Some of the details are less than ideal, though. He's not excited about the specific duties of the job (he's a CPA with a master's degree and a part of it is essentially bookkeeping,) it's a very small company with nowhere to go from this position, and the pay is not great. Our biggest concern is always health insurance, and while the company does have benefits, the health insurance will be expensive to use, with a higher deductible, copays, etc. than our current plan. Additionally, this employer does a 90-day probationary period, and health insurance won't kick in until after 90 days. That means that despite a much lower salary than Dad's previous job, we'll still have the expense of paying our current, very expensive private plan for the next three months. We'll be way in the hole, pulling thousands of dollars from savings each month. We'll also be paying a ton out of pocket because of the new year and new deductible, and then when we get on the employer plan, we'll have a brand new (and high) deductible, and continue to pay pretty much everything out of pocket. *sigh* So yeah... there's a lot about this job that isn't ideal. We hoped another offer would come before he had to accept or start this one, but that didn't happen, and we couldn't turn down an offer. Dad started his new job a couple weeks ago. He still has the contract job, with its decreasing hours, on the side. We can't afford for him not to work out the entire time available to him, so he's working a pretty exhausting schedule right now. Hours will get lower over time, though, and he'll be totally done by the end of March. That will mean a more relaxed schedule, but it'll also mean that our monthly income won't cover our expenses. Obviously, he continues to pursue other opportunities. No one wants to be the guy who only stayed at a job for a short time, but he had to accept the offer, and he also has to keep looking for something that's better suited to our needs. We continue to hope that the right thing comes along soon.
I'm still doing some freelance stuff on the side, mostly editing, but also occasional research projects. The amount I work varies widely. In December, I did exactly one small project. So far in January, I haven't had a week when I worked fewer than 25 hours. Honestly, that's more hours than ideal. My life is structured around being a full-time parent, which means I should have plenty of time to be involved in every activity under the sun, and I am. There's no way to disengage from any of it, because I'm not just a regular volunteer anywhere, I'm on the board of this, or I'm coach or manager of that. I wouldn't want to give up any of it anyway. I love it, and while it is tiring sometimes, staying engaged is good for me. When life is "normal," I can balance all of these engagements with taking care of the family, all of Hope's appointments and needs, and working on the side. When things are as stressful as they've been the last few months, and especially right now, it's hard to work the number of hours I currently am. I'm really thankful for freelance opportunities, though. I can work when I can fit it in, and not have to miss anything else. And realistically, next month will be slower, and then I'll be frustrated not to have much work... while simultaneously enjoying the slightly slower schedule, because life keeps me busy enough already.
Enough about family updates, though. Let's talk about Hope. You're here to find out how she's doing, and the answer is that she's been really struggling. Aside from the continuing, and extreme, self-harm, she has expressed for a long time that she often wishes she were dead. We've avoided the hospital only because what she's saying is passive. She's not saying she wants to, or plans to, kill herself. She's saying that she wishes she would die because her life is so painful that she doesn't want to have to keep living it. She has insisted, though, that she wouldn't actually try to kill herself, mostly because she's scared to die. With all of the safety measures we have in place, and with her insistence that she doesn't intend to make an attempt on her life, we've kept her at home. There have been frequent conversations about the hospital, and even a couple times where her psychiatrist said she felt most comfortable going that way but trusted that I'd know if it was time and let me make the decision. So what pushed us over the edge now?
Hope told us that she was terrified that she was going to kill herself. She doesn't want to but feels like it's inevitable. There are several factors at play. The voice has been urging suicide more frequently, and she says she doesn't know how to not do what the voice tells her; she often does what it says even if she doesn't want to. She can't explain why, but she feels powerless against it. She said she's resisted so far, but is afraid that she won't be able to for much longer. On top of that, she's been feeling less afraid of dying, and more indifferent about it. She doesn't always feel indifferent, though. She is at least sometimes connected enough to recognize that she's sometimes feeling indifferent, and sees that that indifference would make her more likely to do it. While fear of death has kept her safe in the past, the only thing that has stopped her recently is thinking about what it would do to the people who love her. Sometimes she's pretty disconnected from her emotions and rational thoughts, though, and that alone may not always stop her. * Here's where it gets a little more detailed, and you may want to go ahead and skip the rest of the paragraph if you're worried that it may trigger or upset you. * The most alarming thing is that she took a few steps toward carrying out a plan. She made a noose. She figured out where she could hang it. She put it there and tested whether or not it would hold her weight. (This was why her previous attempt failed.) She measured to make sure her feet wouldn't be able to touch the ground when she did it. Basically, she did everything she needed to do, stopping only before the actual act. There aren't words to express how all of that feels, and I'm not sure I'm ready to even try to get into it, so I'm just going to move on with facts here. Suffice it to say that this news is heartbreaking and terrifying. She still had the noose; she'd resisted using it so far, but kept it.
Obviously, the detailed plans and even steps she carried out alarmed us. When she told us that this had been going on, she was sobbing and begging me to help her, because she was terrified. We went straight to the hospital. As you know if you've followed us for long, we've exhausted med options, and even tried ECT. Her case is severe, as very early onset schizophrenia tends to be, and she doesn't respond well to treatment. We're fortunate that a majority of her 14 hospital stays have been in the same hospital, and the staff knows her well. She's treated well there, and we don't have to go through the huge backlog of history to figure out what to do next. However, everyone agrees at this point that there's not much we can do beyond keeping her safe and hoping the break/change of pace helps her move into a better place, at least for a while. She has never been stable for long, and she may never be. Things will always get bad again. But if we can ride out the worst times, we can hope for periods of relative stability before we're at a crisis point again. Ultimately, her best support system is at home (at least she has that; it's sadly not true for everyone) and the best thing we can do for her is to keep her at home as much as possible. There are always hard conversations about whether or not we have to consider keeping her safe by using a longer-term hospital, but we always arrive at the decision that she would be beyond miserable like that and that we have to give her the quality of life she desires and deserves. You can protect your kids by never letting them do anything, but you also have to let them live and have experiences that make an enriched and fulfilled life. Her case is a really extreme version of the same struggle all parents go through -- we make decisions where her life is literally at stake if we choose wrong -- but like everyone else, we're doing the best we can.
We leave this inpatient stay feeling happy to have her home, and also scared. I've been transparent before about my fear of losing her. Many of you know that Dad opens her door in the morning to spare me having to do so, because we feel fear/uneasiness every single morning until we see that she's okay. Many of you know the statistic that one in ten individuals with schizophrenia dies by suicide. Bringing her home today brought mixed feelings, as is often the case. There is a painful emptiness when she's not here, but it's hard to have to spend all day every day assessing how she looks and managing everything that comes with her illness, and it's hard to wonder all the time if you're making the right decision. Still, I'd choose her a million times over. I'd rather walk through every difficult moment with her than ever have to know a moment without her.
As for how Hope is right now, it wasn't a great evening. She is usually giddy when she's discharged, but it's only a short time before everything else pushes that feeling away. She commented on the drive home that the world seems really overwhelming after she's been in the hospital. There are so many sights and sounds at once. She sometimes struggles to process it all anyway, and this is definitely true after coming from a stay in a place where everything is so quiet and uniform and under-stimulating. She was sad and quiet this evening, and if this is how she feels in the honeymoon period of being newly home, I expect she'll continue to struggle. It's not that we expected big changes, considering that all we did in the hospital was increase the dose of one med that we don't think is helping at all anyway, but we held out some hope that spending a little time there would somehow reset her perspective a little.
If you're looking for specific prayer requests, or wondering how you can support her or hold space for her, here are some thoughts. One of her heaviest burdens is that her self-esteem is so low. It's so hard to be a teen girl in the best of circumstances, and when you add in that her rare and extreme illness makes her feel so broken and so different, and then pile on top of it that her auditory hallucinations tell her horrible insulting things about her all day long, it's just so much. Please pray that she somehow learns to see how precious and incredible she is, and help us to remember to focus on reminding her rather than feeling frustrated at the ways in which her illness makes things difficult. Please pray that we are able to properly assess safety concerns, and act appropriately to keep her safe. Please pray for provision, that a more suitable job/benefits situation comes along soon. Please pray for these exhausted, overwhelmed parents. Please pray for the little brother who endures so much. (She loves him more than anything, and told her hospital therapist that the hardest thing for her is knowing how much it all must hurt him. She says that she'd find it agonizing to see him do things like make cuts all over his body, or have to fear losing him, and she imagines he must feel that way as well. Honestly, it is hard for him. And it skyrockets anxiety issues for him, and makes him struggle in ways he shouldn't have to. But none of it is her fault, and she never asked to have to struggle this way either.)
Lastly, I just want to thank all of our family and friends who continue to love her so perfectly. She expressed to me that she doesn't understand why she feels the way she does when she is fully aware that she has the absolute best support system in the world. She knows that so many people struggle alone, and while she sometimes feels alone, she does know that she is incredibly loved and that if she'd just reach out, there is always, always someone there for her. I wish I could express how deeply touched I am by every single word of encouragement and every kind gesture. My heart overflows with gratitude.
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