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I Just Want the World to Be Better for Her

Ever since my daughter was first hospitalized, the thought about what happens when she re-enters her world has been nagging at me. Will she get the support from her friends that she needs? Will she be ostracized? Will someone say something mean that will send her spiraling again?

As a society, we tend to treat mental illness as something that needs to be hushed up instead of the legitimate illness that it is. Whether the mental illness stems from trauma or from a genetic component, the fact is that there are measurable changes in the brain that make it nearly impossible to recover from mental illness without help. It's this very tendency - to hush things up - that leads to more isolation and generates a fear of reaching out. This is the exact opposite of what someone dealing with mental illness needs. It's this fear and isolation that can make the patient feel that they are alone and that there are no options, and yes, it can lead to suicide. Patients dealing with depression need to feel like they are not alone, that other people care about their problems and their recovery, and that they will stand by the patient while they recover.

Recently, I saw a video of a sweet 6-year-old returning to school after beating leukemia. His entire Kindergarten class gave him a standing ovation while he walked the halls for the first time in months. It was a tear-jerker. Why don't we do this for patients dealing with a serious mental illness? What they are dealing with is devastating to them and those around them who are watching them suffer. In the 15-24 age group, suicide ranks as the second leading cause of death*. In fact, since the pandemic, the suicide rate for ages 10-24 increased 60%**. This isn't something that should be swept under the carpet or ignored. It's a serious issue in our society, and we do not have adequate resources to help those who are suffering.

When this journey began with my daughter, it immediately became clear that there weren't enough emergency beds available for teenagers, staff turnover at the facilities was high, and in some cases, training for staff was inadequate to the point where it puts additional stress on the patient and their family. In one particularly stressful event, we needed emergency care for my daughter. We waited in a waiting room for over 6 hours before I checked to see how much longer it would be. I was told that there were still 5-6 people ahead of us and because of staff limitations, it would be another 5-6 hours or more before we were seen. It was already well after midnight, and sleeping with a thin blanket on hard waiting room benches seemed like too much to ask someone who was already dealing with clinical anxiety. I asked the receptionist if we would loose our spot in line if I took my daughter home to sleep in her own bed for a few hours and then returned with her first thing in the morning. She called a nurse up to speak with me. The nurse barely looked me in the eyes as I repeated my question and then angrily told me that if I even thought of leaving, she would call the police and they would speak to her (the nurse) first and if the police determined that my daughter needed to stay, they would take custody of her. Further, if I managed to leave with her, they would send the police to my home to arrest me and take custody of my daughter, and is this what I wanted? I felt like I could barely breathe. I had never been threatened with arrest before, but this didn't feel like a helpful environment for my daughter. I walked outside the facility and called my husband to tell him what had just happened. We decided that as difficult as it was, that it would be more upsetting to our daughter to see me arrested in front of her, or to have our parental rights revoked. It also might prejudice staff against her once she was finally admitted. None of it felt right, but we also felt like there was no other option but to wait it out. All told, we waited over 14 hours to be seen and admitted. When she was finally brought back, they separated us while they took her to a room across the hall and strip searched her. I could hear what was going on, but I couldn't do anything to help her. I felt horrible and guilty for brining her to this awful place that I no longer felt could help her. After she was searched, she was brought back to me to say goodbye. We were given less than 5 minutes. They took her, and I was given instructions for brining her the clothes she would need for the next few days.

During this process, one of the many papers I had to sign was a detail of all her current medications. I signed papers authorizing them to continue dispensing these to her. I also signed paperwork to allow her pediatrician and her therapist to call and ask about her progress. The paperwork stated that we would receive a phone call later that day to tell us how she was doing. We never received that call. Our pediatrician tried to call, but no one was able to give him an update. He felt like, given everything we had gone through, and the lack of update on her status was malpractice. I felt even worse for taking her there. We were allowed two phone calls per week, so we had several days before we could talk with her. We finally got our first phone call from someone on her care team more than 35 hours after her admission. Apparently, due to staff shortages, she was taken back to her room to set her belongings down, including the one book she had brought with her. She was then told to leave everything in her room while they cleaned it. She was told to sit on a bench in a common area until someone came to get her. She sat there all day and no one saw her and no one gave her any of her medication. She also didn't eat at all. We were furious. She was being treated more like a criminal than a patient suffering from depression and anxiety. Their actions and how they treated her during and after her admission made these feelings worse, not better. Our pediatrician called again the next day to ask to speak to her doctor and requested that he look into the medication she was currently taking and evaluate whether or not it needed to be changed. This was finally done three days into her stay. They requested to keep her over the weekend to observe how she handled the new medication. We refused and demanded they release her that afternoon. Having her medication re-evaluated by a psychiatrist was positive, but it didn't need to happen the way that it did. The day I demanded they release her, I had one of my few phone calls with her. She was sobbing and begged me to get her out. I may not be a psychiatrist, but I do know that causing additional stress and treating someone dealing with mental illness like a criminal is not the way to help that person get better.

After we got her home, we were able to get her admitted into a local partial-hospitalization program for eating disorders. This facility would allow her to receive the help she needed during the day, teach coping skills, and she would be able to spend evenings with us. For a while, she seemed to be making good progress. Her urge to restrict her eating was getting better, her weight was stabilizing, and she was learning skills to help her cope with her anxiety. Then, she crashed again. Her anxiety ramped up because she was eating more than she was used to, so to punish herself, she wrapped a shoelace around her neck while she was in the bathroom. She told me about it when I picked her up that evening. I talked with her about what had preceded this action and how she was feeling when she did it. Thankfully, she was honest with me and I was able to explain to her that I needed to let her therapist know what had happened. She agreed and the next morning, I waited until her therapist arrived to talk with her. The therapist explained that what my daughter had done is what is considered a suicidal gesture - an act towards taking your life without the full intent to follow through with it. A suicidal gesture is considered an escalation in behavior, and it warranted my daughter's admission to yet another facility, because despite the fact that eating disorders and mental illness go hand in hand (rarely is an eating disorder present without a mental illness factor), these are treated as two separate pathologies. There is not a facility in this country that will treat the two issues as the same pathology, even though in her case, restricting her eating is another form of self harm. We discussed options with her care team, and the only facility that could help her with coping skills and that had some tolerance for her eating disorder (meaning that they wouldn't kick her out of the program if she restricted her eating while she was there), was 3 states away. I was floored. How, in a state the size of Texas, where we live, was there not a residential facility for teenagers facing mental illness? Texas has outpatient facilities, but the escalation in her behavior meant that she really needed full-time care. Within the group that we felt would be best able to treat her (again, the only one that could tolerate her eating disorder, too), there were only 2 facilities in the entire country - one in Chicago and one in Denver. We chose the one in Denver. We waited nearly a week for a bed to become available. Meanwhile, my husband and I had to monitor her constantly at home, which if you have any experience with teenagers, doesn't go over well with them. She tolerated the constant monitoring better than most, but it was exhausting for everyone. She slept next to me in my bed while my husband slept on the couch. I had to watch her, or be close by while she dressed, showered, and did anything else. When we had our admission date, I drove her from southern Texas to Denver. The trip was nearly 15 hours of driving, but the combination of the pandemic and her anxiety made flying out of the question. I decided to take 2 days to drive so she would be relaxed and I wouldn't have to drive through the night. She also had to be at the new facility by 9:00am, so if I hadn't stopped, I would have been driving through the night. Luckily, I have both friends and family in Denver and we were able to stay with familiar people the night before her admission.

I am immensely grateful that she is finally doing better through her participation in the program in Denver. She is hitting her milestones, and we are looking forward to seeing her soon when she is released to the partial hospitalization program. When she makes it to partial hospitalization, she will be able to stay with us at night, and part of the weekend. She will likely be in the partial hospitalization program for 3-4 weeks, then she will be in an extended program, or go back to the local center that treated her eating disorder. I've told my other kids what is going on and that we would all enjoy Denver together as a family as long as my daughter needs us to be there. Her siblings are just excited to see her.

That brings me back to what the world will be like when she goes back to school in the fall. After many months of treatment, I am hoping that her school, her friends, and her church family will welcome her back and be supportive. I hope that she will have gained the skills to answer the questions she wants to answer and deflect the ones she doesn't. I pray that no one makes her feel bad for her ordeal. I wish the world dealt with mental illness the way that little boy with leukemia was welcomed back. She deserves no less for all the hard work she has put into her recovery.

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