Not My Circus, Not My Monkeys

Fall and winter are hard. They’ve been difficult for years because I have both the shorter days to deal with and the holidays. Holidays have been awful for years, really ever since I left home, because if my family isn’t directing manipulation and abusive behavior towards me, they’re directing it to my siblings. This Christmas was the first time I’d gone to visit my parents and both of my younger siblings since I was 18. Which, god 18 was a long time ago. Anyway, the older of my two younger sisters flew into Boston the Saturday before Christmas and the three of us, (my sister, my partner, and myself) took Greyhound up to northern Vermont to celebrate with my parents and my youngest sibling (who lives ten miles away from my parents).

There were good moments in the three days that we were there. It was great spending time with both of my siblings at the same time because it’s pretty rare we’re all in one place at the same time. It was nice to remember little family traditions and share them with my partner. It was good to spend time with my mother in the mornings when we both woke up before every else. There was snow, which always makes Christmas seem more real. There were some really bad moments there too, and they kind of crushed the good things. The bad parts… They’re pretty bad.

Both of my sisters and I drove someplace where we could take a long walk the morning of Christmas Eve. We didn’t wind up walking very far because my youngest sister slipped on the parking lot of her building and landed on her knee and elbow. We wound up walking a bit into the center of town and getting coffee and just hanging out for a bit. It was really nice, minus the part where my sister’s knee hurt. But on the way home, my other sister burst out crying because she didn’t want to go back to my parents’ home because she didn’t want to be around our father. He had apparently come up behind her that morning, put his arms around her, and tickled her stomach that morning. She was afraid to be alone with him. We wound up taking the long way back to my parents’ house and promised her that we wouldn’t let him get her alone again if we could help it.

So we got back and my youngest sister asked if we wanted to watch a movie with her. She’d started Die Hard (best Christmas movie ever, if you ask me) the day before and I said yes because it’s awesome. Then we asked my other sister if she wanted to watch with us, which she did, but my father had been trying to talk her into playing a game with him just the two of them. So my sister agreed to watch it with us, the three of us on the futon with my partner sitting at the counter. My father got really pissed that she had chosen to do something with us instead of him and stormed off, slamming the door behind him. It made me anxious and I’m sure it made my sister anxious because she had “caused” him to be angry. Anyway, we watched the movie and eventually moved on from worrying about what he might say or do next. I was definitely on edge the rest of the evening, but we all got through it.

Christmas started out fine. I hung out with my mother again early in the morning because I was waking up at 5:30 again for no reason. When everyone was awake and downstairs and properly caffeinated (minus my sister and myself), we opened stockings and my sister played the Christmas elf (don’t ask, it’s a family thing from long before I was old enough to understand Christmas at all) and handed out presents from under the tree. Everyone was having a good time together, which was nice. My father was kind of an ass. My partner went out of her way to make a batch of hot sauce to give him, and I’d gone to two different stores to find appropriate peppers. He basically unwrapped it, asked what it was and what he was supposed to do with it, and set it aside. No thank you, no acknowledgment of the effort we put into it. Then he opened a card that my sister had given him and made a big deal out of how wonderful and thoughtful it was. So I was already pissed at him and decided not to bother with a gift for him again, because clearly he didn’t give a shit about anything from me.

Later that morning, my mother was in the kitchen cooking and roasting vegetables for dinner, and we were hanging out in the living room with my partner. My sister was in the rocking chair that my mother has had pretty much since I was a baby, rocking. My father came up behind her and leaned on the back of the chair so she wouldn’t be able to rock anymore. She slid as far forward as she could in the chair. After it became clear that he wasn’t going to leave the chair alone, she said something about how she couldn’t rock anymore and his response was that she should lean back in the chair. So my father is standing there, ignoring her very obvious discomfort and she is sending pleas for help from the rest of us. I told him that it looked like she didn’t like him hanging on the back of her chair. He ignored me completely. I waited a minute and then said “I think she’s asking you to stop. Please stop.” which apparently was not appropriate or reasonable in my father’s mind, because he left the room muttering “for fuck’s sake” as he left the room. So everyone except my partner was panicking over what he might do, because he had obviously been pissed off at my sister trying to communicate a boundary with him and had ignored her completely and then was pissed at me for interfering.

This is a pattern with my father. He doesn’t tolerate us setting boundaries with him, especially when it involves my sister. She’s his favorite and I think he has some fucked up notion that she’s not her own person and he can do what he want to and around her. (Side note: it took years of her telling him not to touch her ass and my mother kind of telling him to stop before he actually stopped. When she was 25.) She just basically is not allowed to have bodily autonomy with him. She’s just a pawn for him to move around. And for the most part, my mother doesn’t do anything to discourage him from this behavior. She might speak up on occasion, but usually it’s in a way that everyone else can tell has no chance of being effective at all. And she was giving my sister a guilt trip to spend more time with him, alone, in a way that feels obligatory, like she owes him that.

I don’t know if I’m going to go back for the holidays after this. It basically stirred up a lot of childhood trauma and I’ve spent the last few days with varying levels of dissociation. It’s not okay. I know it’s not okay. And I can’t do anything about it because my father acts like a fucking child anytime someone dares to tell him no. Actually no, that’s an insult to the children I know. I know he’s an abusive asshole. I’m pretty sure everyone except my mother knows this, but somehow we get dragged back into his shit every time. I texted my therapist the day after we got back to Boston to see if she had any free time before the weekend. She wound up calling me to check in even because she wasn’t working that week and I think she could tell that I couldn’t wait until my next appointment. My sister left Friday morning and I’ve been trying to get back into life at home. It is good to be home, but it’s been really challenging because most of the trauma that I’ve been struggling with this week didn’t really hit until after we got back. It’s like I went back into that childhood mode of just doing what I had to to survive until I got back home and now that I’m back a whole bunch of stuff has been coming up. Trauma over being around my parents, grief over it not being safe emotionally for me to be around them, sadness that the hopes I had that things could be different were dashed pretty quickly, and feeling like I was stupid for getting my hopes up in the first place.

I’m trying to stay grounded. I had TMS Thursday and Friday and overall felt like I was coping well and listening to the parts of me that are needing attention. I’ve been taking long walks again, something that was very much lacking in Vermont, listening to music, and drinking a lot of tea. I’m gradually getting back to where I was before Christmas. And that’s probably all normal, even if it feels horrible. We will all get through this, one way or another.

Finding Tolerance Inside of Despair

I feel sometimes that the only time I write any kind of update it’s either in the throes of emotional distress or following it. I started feeling more depressed again in late September. I tried to power through and when that wasn’t working, I met with my psychiatrist about it. When I was in the hospital in February they made med changes, and the big one was taking me off of desvenlafaxine (generic Pristiq) and started me on valproic acid (generic Depaote). I was kind of surprised that they had chosen an antipsychotic that wasn’t really known to be used for depressive episodes, but when I asked the psychiatrist at the partial hospitalization program I was in before/after the hospitalization she said that it was probably to level me out some, so that I wasn’t having severe lows. Something seemed to be working though, because I did get better and my mood was sustained until August or so.

When I met with my psychiatrist in September, I asked if it might make more sense to take me off the valproic acid since neither of us really agreed with my having been put on it, and change that out for lamotrigine (generic Lamictal) instead, since that is actually used off label for depression. She agreed that that made sense, so she had me stop taking valproic acid for two weeks before starting the lamotrigine because apparently the combination of the two increases the risk of Stevens-Johnson syndrome which in severe cases it basically results in a severe rash and your skin to slough off your body. Which, no thanks. I like my skin where it is, please. So I stopped the valproic acid and two weeks later had my first tiny dose of lamotrigine. (Lamotrigine is a medication that alone can cause Stevens-Johnson Syndrome, so you basically have to start at a very low dose and taper up very slowly.) I took the first dose in October, just before Halloween, but by the time I was able to start the lamotrigine, I had already gotten a lot worse. Whether that was because of stopping the valproic acid or if it was just the usual seasonal changes who knows, but the evening after the first dose, I felt like I needed to go to the emergency room. My partner was doing everything she could to have me be okay at home, but I had been having suicidal ideation for a few days and had moved from just passive thoughts into a planning stage and it just felt unsafe to not be in a non secure environment. So we both decided that I would go to the ER that night because the weekend was approaching and beds are really hard to find on days where no one is being discharged (which basically doesn’t happen at all on weekends and holidays). So off we went.

I don’t remember getting to the emergency room in Cambridge or most of the time that I was there, but I do remember psychiatry coming down to evaluate me and agreeing that I needed to be in the hospital. There were no beds available that night. The next morning came and afternoon started to pass and there was still no bed available. One briefly opened up in Everett but about an hour before the ambulance was due to come pick me up, they cancelled it because a more violent patient needed to be put in that single. I was starting to panic that I would be in the ER for another night. My partner had spent the day with me, working by my bedside, and that was helping keep me grounded and mostly calm, but the thought of another night with no sleep sucked. A couple of hours later, the psychiatrist came back and said that I had a bed at McLean, which was fucking amazing because there are never any open beds at McLean. I don’t really remember going or getting to McLean other than it was by ambulance. I got up to the short term unit (south) around 10-11:00 and crashed out in the quiet room. They moved me the next day after other patients were discharged and that was that.

It was definitely necessary for me to be there. I really struggled the first couple of weeks as they increased the lamotrigine (which was a faster process than if I’d been at home, but still felt intolerably slow) and I started TMS (transcranial magnetic stimulation). I had no appetite. I spent my time going to groups and worrying about potential discharge dates, since my secondary insurance was trying to get me discharged a week after I arrived. My partner visited almost every evening. I made connections with other patients. Gradually I started to feel better. I was told that with TMS I would start having good periods of time would occur but not last very long, then as I progressed, those good times would gradually stretch out into longer and longer periods of time, until it was being sustained to feeling good a lot of the time. I don’t know what made the most difference. They got me up to a therapeutic dose of the lamotrigine and I started progressing just how the nurses at TMS told me about. I think it was likely a combination of the two, but I do think the TMS helped, and is still helping. I strongly connected with a handful of patients and a couple of the staff members there. I’m in touch with some of the patients I met, though I have only seen one of them outside of the hospital so far. It’s hard not having the constant support of staff, especially the two that made the most difference while I was there. I miss them a lot and knowing that I will likely never see them again is hard emotionally. I make such strong bonds so quickly in the hospital because everyone is there for similar reasons and they just get it better than most people outside.

I had multiple discharge dates planned by myself and my social worker and psychiatrist but they kept getting cancelled because they wanted to see how I did on the weekend first when time is less structured, and I kept backsliding because I got really anxious about discharge looming over my head. Tim, one of my favorite staff members, worked with me to stop thinking so far into the future. He took time out of his schedule to meet with me even when he was not assigned to work with me. He was really honest about his personal struggles and advocated for my needs when I couldn’t do it myself. Ben, my other favorite staff member, would let me walk with him on rounds and talk about what was dark stuff was going on in my head. He taught me how to use ice diving to control my severe anxiety and self harm urges. He found a way for me to be able to do it with just supervision and eventually alone both in the hospital and now that I’m home. Both of them kind of kept an extra eye on me to help keep me safe more frequently when I was struggling a lot. Not having the two of them in my life anymore has been really difficult. I told them both goodbye before that I left and thanked them for all of their help, because it really made a difference. It was so clear that the both of them were in this job because they cared about the patients. Ben told me to give myself credit for the hard work that I’d done (which I am struggling with) and gave me a hug the last night he was on shift before I left. I wrote both of them letters to say the things I wanted/needed to say and didn’t get a chance to say in person.

My psychiatrist was gone the last two weeks of my hospitalization so I had four different doctors in that time period. Things were better then, but my anxiety was still really high a lot of the time and what I was being given to help make it more manageable was not sufficient. My psychiatrist had mentioned gabapentin (generic Neurontin) for the anxiety but had not ordered it for me. The first three covering doctors said no (the first saying that because it can have “dependency issues” which okay, but so does my clonazepam (generic klonopin)), but with Tim’s urging I asked the last doctor if we could try it and she didn’t see any reason why not because neither myself or my partner have substance abuse issues. I started on it that afternoon and evening and by the second day of it, it was like a switch had flipped in my brain. The anxiety was either not noticeable or at a low enough level that it was manageable. It was amazing. I’m still taking it now that I’m home and it’s continuing that be really helpful.

Home is good. I’m feeling so much better. People were telling me the last days I was at the hospital that I looked like a completely different person. One patient who had come, left, and come back while I was there told me that she almost didn’t recognize me because when she had come in originally I was just so down and depressed and then she came back and I was stable and actually happy. I’ve had fluctuations in my mood and anxiety, but I know that is normal and no one is happy all the time. I talk more now. I’m more engaged in things. I make eye contact with strangers when I’m out walking and actually talk to them at times! My psychiatrist and therapist both noticed a drastic difference in my demeanor. My partner said it was like I was present in myself in a way that she maybe had never seen before. Overall I was in the hospital for five and a half weeks, but I learned a lot during those weeks and know it was necessary.

I’m still going to McLean twice a week (used to be five days a week) for TMS treatments. I am nearing the end of what insurance has agreed to cover. The TMS doctor wants me to continue doing maintenance beyond that and will be requesting more coverage but my insurance mandates that there have to be three months before they’ll consider covering me more. That’s daunting and scary, but I’ll do what I have to. In the mean time though, I’m doing what I can to stay stable outside of treatment. I walk a lot now, aiming for 10,000-15,000 steps a day. I have met that goal every day, minus the time I spent in Vermont with family (that’s a whole other post altogether). The walking helps me stay grounded, it’s actually kind of meditative in a way walking while listening to music, and helps keep my mood stable. I’ve been really enjoying it. I’ve gone back to Tai Chi after about a two month break since before the hospitalization I was too depressed/anxious to go to class. I haven’t missed any classes for this month, which is a big change for me. I’m actually looking forward to class. I sometimes keep feeling like I’m tempting fate with feeling this good and like maybe the other shoe is going to drop on my head, but I’m continuing with life anyway. Things are good and I’m enjoying the good and trying not to fixate on things in the future that I can’t control. (Thanks Tim!)