I am currently sitting at a table in terminal one at LAX, waiting for it to be time to board my second flight back home after a week in the Bay Area visiting my sibling and their family. The last time I saw my sibling was two and a half years ago when they were on the east coast for a family wedding. We spent almost a week with them and their partner and seven year old daughter who I had never met before. (A is such a delightful, amazing kiddo and I am so very glad that I will get to know her in the following years as they grow up.) The distance between the east coast and the Bay Area feels impossibly large at times and I feared up as the first of my flights pulled away from the jet way. I know I’ll be back, but I wish visiting were simpler.
We spent a night in San Francisco visiting a good friend who moved a few months before the pandemic started. Again with the distance being cruel. Her apartment overlooks the financial district with a view of the bay bridge which is quite a view at night when the city is lit up. We spent a morning exploring three floors of exhibits at the museum of modern art and she made one of the best pizzas I have ever eaten.
If California weren’t so expensive, and if it wasn’t on fire every fall, I feel like I could learn to love it enough to live here. But then I think about my cozy little home four blocks from the Atlantic harbor and the little community of friends that I have made in the past few months and suddenly that feeling vanishes. I love my home, I just miss my family, both blood born and chosen, when they aren’t nearby.
I leave you here with a picture of the night sky from downtown San Francisco, looking out over the city with the bay bridge in the background. I’m grateful travel exists, even if visits are infrequent.
How has an entire year gone by in the time since I last posted anything here? When I left off last, my partner and I had just closed on a home in a new city where we knew almost no one. Moving proved to be life changing in more ways than one. The first was that we moved, obviously, but we didn’t plan that I would get covid the week after we officially started living in the new place. The only people I’d come into contact with in the past two weeks before symptoms started were a Lyft driver from our old home to the new one, our movers, and the Comcast cable installers. At my worst I was pretty sick. I spent a night in the emergency room after the nurse that my PCP’s office sent out to evaluate me conferred with the on call doctor who was concerned that my O2 was starting to drop and with how labored my breathing had gotten. I did not have a severe case, but I can tell you that lying on that gurney so tired I couldn’t pick up my head was probably the most seriously ill I have ever been since the time I was admitted for two days with pneumonia eight 9 years ago. Anyway, covid left me with lasting symptoms of severe fatigue and brain fog, and also massively escalated the symptoms of what has now been diagnosed as Mast Cell Activation Syndrome (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS). If I had been able to wait three and a half months, I would have been fully vaccinated against covid, but we don’t get to choose these things. Amazingly, my partner either never was infected or had an asymptomatic case which was really freaking lucky considering I was in no shape to care for myself at that time or in the following weeks and honestly the following months.
Life carries on. We’ve found ways to adapt with the limitations that long covid and the assorted issues I’ve had. MCAS has changed things significantly. For four months I struggled with uncontrolled allergic-like reactions to foods, environmental triggers, hygiene products – almost everything. I’ve had one trip to the ER after having a full blown anaphylactic episode where the back of my throat and uvula swelled to the point that I couldn’t swallow and needed two doses of epinephrine and probably a dozen other episodes of more mild anaphylaxis that I was able to get under control with the help of antihistamines. I carry two epi pens with me at all times along with OTC Benadryl capsules, liquid children’s Benadryl, and a compounded liquid famotidine suspension. For ten months, anything I ate had to be single ingredients or food prepared from scratch at home. The first six months of that I had a list of probably 15-20 safe foods with a handful of spices that we could cook with. My partner has been a godsend finding ways to combine those limited foods in many different ways. I’m at the point now where I can eat some things at restaurants and a limited number of pre-prepared foods at the grocery store. I still have a lot of dietary restrictions though. My safe food list is probably about 35-40 different foods and a greater number of spices and some condiments. How my body reacts to foods that are not on my safe list varies in severity. Sometimes it’s more mild with severe nausea, stomach pain, lower abdominal cramps, and diarrhea. Sometimes my face will get really flushed and I’ll break out into a rash. Sometimes, like when I last accidentally had maybe a 1/2 teaspoon of toasted coconut, my throat will start swelling, I’ll get really flushed, and get extremely dizzy. Finding safe topical products – soap, shampoo, shaving cream, laundry detergent – took months. We went through four fragrance and dye free laundry detergents until we found one without any coconut derivatives. Every time I used hand sanitizer, which since we are mid-pandemic was very frequent, my hands turned bright red and burned for at least a half hour. I couldn’t use conventional toothpaste without getting ulcers in my mouth and let me tell you, tooth powder is disgusting and the sensation was awful. Things are definitely better. I can use regular tooth paste again, and I’ve found shampoo and soaps that work.
Due to everything going on with my body, I have spent a lot of time in hospitals. I had surgery to repair a broken bone in my left foot in October after a stress fracture that had never had become a full fracture. I spent three months recovering after my surgeon removed the broken pieces of bone, took a graft from my heel, and then put everything back together with a plate and screws. I developed gastroparesis and had an endoscopy and colonoscopy right after Thanksgiving. Every three weeks I make a trip into Boston to the hospital infusion clinic for a set of injections that has majorly reduced my reactivity and given me parts of my life back. I am really grateful for having decent insurance that covers this – each set of injections costs $7500 and there is no generic. I check in with my PCP once a month, either in person or by video, to go over anything that has come up in the past few weeks and to make sure nothing is slipping through the cracks. My list of medications and supplements is hilariously long and the cost without insurance (though I would not be on some of these medications if I didn’t have health insurance) would be almost $350,000 a year out of pocket. I have a rant about the cost of medical care in the US but that’s a post for another day.
My partner has been a rock through all of this. I’ve had days where I am so fatigued that holding my head up off the couch is overwhelming. Those days are becoming less frequent, but I still have them every now and then. My partner has cared for me in ways I could never express enough thanks for in the past year and a half – making sure I am fed, clothed, able to get to appointments, able to access the care I need – all with love and never any guilt. I don’t know what I would do without her. I start specialized physical therapy in two weeks to try and help regain what I have lost over the past year and a half. The doctor I saw at the long covid clinic told me things will continue to improve, painfully slowly, but there will be improvement and each backslide will be less severe than the last. Life is feeling more manageable with time and with the gains I have made. There are definitely times where everything feels like too much and I don’t know how to keep going. My friend C, who has many similar issues as me, is always a text or phone call away. We have grown even closer as we both manage our numerous health issues, supporting each other and holding each other up when needed. I don’t know what I would do without her.
My hope for the future is something that I would not have had several years ago. It’s been hard one but I am so very grateful for so many things.
It has been an unprecedented year, or at least it feels like it has been. In some ways it feels like the universe’s cruelest comedy. As if COVID and the way it has ravaged the US and the rest of the world weren’t bad enough, after I tore my plantar fascia early in the year, I then wound up with a stress fracture in the same foot, started having debilitating, daily migraines, and then stepped on an iPhone cable with my opposite foot and snapped my fifth metatarsal which after nine weeks of it not making any process towards healing needed to be surgically repaired with an internal fixation and bone graft. Being so isolated the past eight months has been a lot. It’s a lot to go through eight months having no physical contact with people other than my partner and a handful of doctors. It’s a lot to exist on immune suppressants in a world where people don’t seem to understand or care how to wear a mask properly, including on public transportation. It’s hard not being able to see people, especially now that the weather is growing colder and outdoor socially distanced hangouts are becoming less of a possibility. But this post is not about all of that, believe it or not. This post is about starting a new phase in life with my partner, creating a new home in a new city. This post is about excitement and anxiety and fear of the unknown and sheer joy.
A little more than two months ago, my partner and I took the plunge to start looking for a new home of our own. We’ve lived in the same apartment in our city outside of Boston for the past nine and some years, ever since we moved here from Colorado, and we love the area and the community that we have built here but the residential retail market has continued to rise and while our landlords haven’t actually been charging us an outrageous amount in rent compared to other apartments in the area, it’s still a lot of money to be paying to someone else when you have no idea if they might decide to sell your building or raise the rent again the following year. The idea of home ownership has always been something that I found pretty terrifying. The amount of money and responsibility involved just seem immense. But my partner keeps reminding me that we’re going to be building equity and the idea of being able to do whatever I want to my living space (within reason) without having to ask someone else permission first? Yes, please. And I keep trying to remind myself that we’re not still living in Colorado struggling to pay rent and buy food sometimes and running out of fuel for heat and the stove at least once a winter anymore.
Our real estate agent came on the recommendation of a friend’s local mom’s group and she was fantastic every step of this process. We went on our first trip out to view properties and got really excited about a quirky single family home with a really great yard and back porch. The layout was funky but we were willing to take on the home renovation projects in the coming years. Unfortunately the entire foundation was awful, what foundation the house did have. We stopped the inspection after just the exterior and the basement because as much as we loved the outdoor space and as excited I had been about my plans for gardens and chickens, there was no way we were going to buy a house that needed at least $80,000 work just for the foundation. It was really disheartening and disappointing, but we mutually decided we had to back out of the sale. I was pretty jaded that afternoon but there were a couple properties that we thought we might like and we wound up going back up the next day to see two more. The first one we both hated. It was a nice space but it was very much not us. We wanted someplace where we could spend time outdoors and when we pulled into the parking lot with our agent, there was literally a woman sitting in a parking space in a lawn chair reading a book. But the second condo…
We fell in love. I fell in love very cautiously and insisting on not getting any hopes up (as if that ever works) because we knew there were going to be multiple offers and I couldn’t take another huge disappointment two days in a row. The thing I hate the most about trying to find a home is the whole offer process, which they should just call a bidding war since that’s what it is. The whole game of trying to figure out what is the right price to offer so you don’t offer too much but also not too little so that someone else outbids you… God, it sucks so bad. We got lucky though. After two rounds of offers, the sellers accepted ours even though we weren’t the highest offer! I think the personal letter we included introducing ourselves and talking about all the things we loved about their home and how we could see ourselves being really happy living and making a life for ourselves there played a part in that. The home inspection went well, we signed our contract with them at the end of the September and I started the mountains of documentation for our mortgage. Which was probably the ultimate worst part of this process.
For anyone who has read much of these posts, you probably already know that I am not a person who handles high stress particularly well anymore. I managed when I was working in EMS, but those days have been long over. If you don’t fall into that category, well, I’m not a person who handles high stress situations well. I had a to-do list of things we needed to prequalify, a to-do list of things for our application, a to-do list for the underwriting. It was a lot and it just kept coming and coming and while being able to check things off my list felt good, there were documents that weren’t available until really close to the deadline and I started having pretty severe insomnia where I was sleeping maybe 3-4 hours a night. I would lie down at night feeling exhausted and then as long as the light turned off, my brain would start spinning over all of the moving pieces and how many there were and what if something fell over the side. I’d sleep for a few hours and then I’d wake up again and not be able to fall back asleep because the whole process would start again. If I was really lucky, I’d get some unrestful sleep for another hour or so, but most days I was getting up around 3:30 and just starting my day super early.
We closed on Friday and I’ve got to tell you, after two months of constant, increasing levels of stress and anxiety, it’s literally like a weight has been lifted off of me. We had met the sellers the day of our home inspection and they are a very sweet, elderly couple. They left us a really beautiful note about themselves and their reasons for moving – they’re in their 70s and the stairs just aren’t manageable for them anymore – along with all of the manuals for every appliance, linens for the table, and butterflies throughout the apartment, because one of them really loves butterflies. It was incredibly sweet and it makes me wish we could have had more than a meeting in passing, but I feel really grateful to be moving into the home they have loved and shared and that we will now get to call our own.
Not all of the stress is gone, of course. We are spending the next couple of weekends doing some floor changes in the bedrooms and small landing to remove the carpet and put down some other kind of flooring because the carpet will definitely try to kill me. Our movers come on the 24th and there’s still a lot of packing to do. But my main point is that it no longer feels like this insurmountable amount of stress that is going to consume me. I’m so excited both to be moved in and also having this space of our own!
The condo we bought is on the second and third floor of a two unit building, with another building of five units behind the driveway. The laundry is in the basement, which isn’t ideal, but also not a problem and gone will be the days of waiting for our neighbors to be done with the one washer and dryer in our current building, and especially the neighbor we have who uses incredibly strong scented detergent. We have a large storage area in the basement. The second floor has a bright and sunny living room with a sliding glass door that opens up onto a large private deck with a gas grill that is plumbed into the house, so no more lugging propane tanks! The kitchen is similarly sized to our current one, with no pantry, but it has a dishwasher! I’m going to have a dishwasher for the first time in my adult life! There’s a large dining room and hilariously the sellers’ real estate agent wrote in the e-mail that they’d accepted our offer that there was one “caveat” – they didn’t want to move their dining room furniture, so we would have to take it! It’s really nice furniture. There’s a dining room table that seats six, a side board, hutch, nice rug, and a matching clock on the wall. Coming from an apartment where we have no dining room, starting with beautiful furniture already supplied as a gift just was a really nice bonus. There’s a very small but bright office space off the dining room that we’re planning on turning into a crafting space. Upstairs there are two decent sized bedrooms. My future room has a huge closet on one side of the room and a short but deep closet on the opposite wall which I have dubbed the “hobbit” closet. My partner’s room has an even larger walk in closet. And there are so many closets throughout! Coming from an apartment with two bedroom closets and a small coat closet, I am ridiculously excited to have storage for things. And gaining more than 500 square feet of living space is really great and the fact that we’ll be saving hundreds of dollars per month on houses expenses even with the addition of condo fees, property taxes, and home owner’s insurance feels kind of unbelievable.
I don’t want to discount how horrible this year has been or the lives that have been lost, many due to the cruelty and incompetence of our current administration. This has been a truly horrific year, with multiple hundreds of thousands of deaths just in the US alone and when I think of the trauma that first line health care workers are enduring and the effects this is going to have on them for the many years to come, the trauma of the families who can’t be with their dying loved ones because of visitor policies, tragic doesn’t begin to describe the situation. I don’t want to discount the effects COVID has had on the people I love or the people my people love – the loss, the grief, the fear, the terror. And I hope that this post doesn’t come across this way. It feels strange to feel such excitement and joy in a time where there are so many deaths on a daily basis and hospitals are overflowing again, not to even mention what’s happening politically in the US. But I feel at least for my own sanity, I have to let myself focus at times on the good in my life because otherwise I will go crazy. It has been two years since the last time I was admitted, for six weeks, and my mental health has had it’s ups and downs, but the reality is that I’m learning what I need. And sometimes that means spending time getting excited and filled with joy briefly, and not reading Facebook for weeks at a time, and avoiding any media outlets. Sometimes just unplugging from social media, aside from baby pictures ,and the news is a necessity. So I guess what I’m trying to say is, I’m trying to find and celebrate my joy, even if these terrible times and I hope that if you are able, that you can do the same.
Please stay safe, hug the loved ones you are quarantined with, and if you can, try to find something, anything that isn’t just absolutely terrible every now and then because you deserve to feel something that is not horror and terror.
I am apparently really bad at updating on any sort of regular schedule. Does this make the occasional random post special or more just a “God, he finally got his shit together again” sort of situation? At any rate, I am still among the living, even if my life has been almost one trash fire after another. I’m currently sitting on the couch, icing my partially ruptured plantar fascia and feeling what my therapist might call proud, though I won’t go that far, to have just graduated from physical therapy for my last malady. And honestly, while my body and my brain have been doing just about everything they can to try and wear me down to nothing, it hasn’t succeeded, and that’s probably worth feeling proud (shhhh) about too. I’m not going to list off all of the health shit that I’ve been dealing with in the past year because I don’t want to turn this into a total bummer of a post, but I’m actually doing pretty well right now. Sure, life isn’t perfect and my left foot is busted and while I just graduated PT for my back I’ll soon be starting over for that, I’m still here. You hear that universe? I’m still fucking here! And that’s certainly not nothing.
It was recently the two year anniversary of a friend’s suicide, and I have been thinking a lot about my life and the course it has taken over the almost 37 years (I know! WTF?! Who ever thought that would happen?!) that I’ve been on this planet and how much pain has been involved in surviving. When I was in the hospital at the end of 2018, the main reason I agreed that it was time to go was because I didn’t want to be a bomb that went off in our community, which is what it felt like when my friend died. I didn’t want to cause my partner that kind of pain, or my family, both blood and chosen. And so I spent 6 weeks at McLean and during that time I learned a few things about myself. One was that life needs connections with other people who share lived experiences and encourage you to challenge yourself and you encourage them to challenge themselves. I’ve been doing a lot of work lately around cultivating who it is that I want to spend my time with and how I want to spend my time and I think a lot of that stems back to this. Which seems really simple and obvious now that I’m thinking about it, but it wasn’t at the time and hasn’t been in the past. Connections with people that you make and keep simply because people are there and willing to spend time with you isn’t good enough. Life needs more than that.
Another was that I need to do things that bring me joy! It’s good to go to therapy and doctor’s appointments to take care of my health, but I need to find things that I look forward to! Again, this sounds so incredibly simple, but I’ve spent so long spending my time going from one appointment, one therapy session, one group to the next that I forgot that I need more in my life. People, hobbies, getting out on my bicycle and riding until I’m exhausted and grinning from endorphins while my legs feel like jelly climbing the basement stairs to my apartment. I started knitting again, abandoning a project that I felt like I “should” finish because I’d spent money on the yarn and had put time into but that wasn’t bringing me joy. I made my friends’ newborn a baby hat with ears on it, I knit myself an infinity scarf, I started and am close to finishing a sweater for said niece even if it is several months late for a Christmas gift. I started reading again and discovered why I’ve always loved being curled up with a book that I am eager to devour! I rode my bike for the 40+ mile route during Hub on Wheels, an organized bike trip that follows the Emerald Necklace in Boston, which I love because it takes me to many different parts of the city that I never see otherwise and is full of people who are doing something they love doing because they love doing it. It’s not a race, there are no prizes for participating. It’s just a fun way to spend a day outdoors doing something I love that makes me feel strong and capable and proud (there’s that word again) in what I am physically able to do. I went back to my chorus and performed in the 2019 winter concert. I pushed myself to go back to Tai Chi.
I think the other major things I re-learned was that I need to push myself. I need to encourage myself to change, to grow, to learn. I need to challenge myself in ways that let me see growth. And whether this is the people I keep around me, or the things I engage in, I need do so regularly because when I stop, things grow stagnant, and this causes so many problems that then become seemingly insurmountable. One of the things that I started a couple years ago and have continued is taking trips to Virginia one to two times a year to go camping with a great group of guys, some of who I met online back in my late teens, which has been one of the most affirming things that I do for myself these days. I took the train down in October and spent a long weekend in the woods of West Virginia camping, the sound of the river that was maybe 20 feet from my campsite lulling me to sleep every night. The weather was great, even if it did get down to 28 early one morning, but it was beautiful and quiet and away from the bustle of the city and I loved every minute of it. There’s an upcoming trip to Virginia Beach in June and I have literally been counting down the days until then to pull myself through between now and then because sitting around a campfire with people I love and spending time with my chosen family means so much and I’m so glad that I’m in a place where I know this and am able to enjoy it.
So yeah, I guess if I have one thing to take from all of this past year is to live life as best I can, as cliched as that may sound. Find the good moments in all of the bullshit and live for those, and if you can’t find the good moments in a particular point in time, I need to remember that there will be good moments in the future and I just need to take life one step at a time until I get there.
My partner and I were walking home one night a week ago and when we passed the guitar store, she pointed out a bright pink ukulele in the window. The store was closed for the night, but I joked that I should buy it. I walked by on Tuesday by myself and it was still in the window and decided I was going to buy it. I walked into the store and was about to ask if I could try the pink ukulele but then I looked up and there was a whole row of them on the shelf in difference colors. I had been sold on the pink one but I noticed one in a really great shade of royal blue that I couldn’t pass up.
Anyway, I’ve been playing around with it a lot lately and really enjoying it. I spent hours today trying to make a decent recording of myself playing it. I finally got one but it had mistakes in it that my perfectionist self wanted to try again and again to do better. In the end, I settled on a video I had made hours before I stopped. It has flaws, and they feel realy glaring to me, but I’m posting it anyway, flaws and all, because trying to get it perfect a) wasn’t happening and b) is a ridiculous thing to hold myself.
The video is too large to upload directly here but I’m posting a link here to Youtube where I uploaded it earlier if you want to watch it.
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.
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!)
For years I couldn’t feel anger. I was so used to stuffing it down inside myself, that I only ever took my anger out on myself. At the partial hospitalization program I’ve been attending, they talk about how anger is a secondary emotion, how it is usually the result of some other emotion. And that makes sense to me, because I think for me anger is usually secondary to hurt. For years I couldn’t feel anger, I just felt the hurt and at times betrayal. Then I went through a lot of trauma specific therapy and all the anger that I’d suppressed for years came flooding out. It took a lot more therapy, but I eventually got to the point where I can feel anger without being afraid of losing control. I began to be able to experience big emotions or fluctuations in emotions without them taking control of me. And then this past autumn happened.
I knew my partner was polyamorous when I met her. I was aware of this but kind of filed it away because we were living in a really rural town for years where dating prospects were pretty slim. Then we moved back to the Boston area, but my mental health was such that she didn’t seek out other romantic partners. But over the summer and early fall, it became clear that she was interested in potentially dating other people outside of our marriage. I had a lot of fears about going forward with her dating, mostly the usual things like “What if she decides she likes this new person better than me? What if she leaves me?” that came up many times in therapy as I processed this. And over time I began to believe that she meant it when she said she wasn’t going anywhere. But then she told me who she wanted to try dating and I just had a bad feeling about it not just because of the worries I mentioned above, but also because the person she was talking about, I’ll call her C, had given me a bad feeling when we met.
I love my partner and I wanted her to be happy, so I said okay, even through these bad first impressions and neither of us could really tell if I was uncomfortable with Miss Insecurity because she generally sent off warning signs in my head or if I was just going to be uncomfortable with anyone my partner was dating. So I said okay and their relationship began. And it was awful. For six weeks, C managed to not just manipulate my partner but also acted in ways that were borderline abusive towards me. She continually started conversations with me online and then ghosted on them after I responded, sometimes not replying for a full week. She tried to make me help her process her feelings of jealousy and upset when I tried to set boundaries with her. She patronizingly tried to explain to me how relationships worked and how I was being a bad partner. She used guilt to try to manipulate my partner into spending more time with her when my partner genuinely couldn’t due to scheduling constraints that didn’t work with C’s constant travel plans. C had jealous fits that I wouldn’t expect out of someone who’d been having polyamorous relationships for twenty years. When my partner had to occasionally turn down invitations for dates, she got upset that I got to see my partner all the time when in reality there were weeks where my partner and she spent more time together than the two of us did living together.
I spent the first few weeks of their relationship feeling very isolated and alone. I tried to set boundaries as a way of protecting myself and C took my setting them out on me. She made everything about her feelings and told me I was bad at relationships. I felt like I couldn’t tell anyone what was happening because C made me feel like the only reason I was struggling was because I was bad at polyamory. She told me that I shouldn’t talk about the issues that she and I were having with my partner, essentially trying to take away the one person I could talk to. I felt like I couldn’t reach out to mutual or non mutual friends because I was internalizing her message and was afraid they would judge me harshly. I spent the last few weeks of their relationship an anxious wreck every time my phone vibrated because I was afraid it was C trying to start shit with me again. I had trouble sleeping and meeting obligations because I was trying to deal with this alone.
But then I just couldn’t do it anymore, not alone. I started talking to friends who were also in polyamorous relationships about what was actually happening and they were horrified. One friend who knew C through other channels responded by e-mail that they’d heard that my partner and C were dating and that they felt “a moment of both horror and deep love for” me because they had also had bad experiences with her as well. Other friends told me how they were horrified by the way that C was talking to me because being polyamorous themselves they would NEVER had talked to their partner’s partner this way. Person after person, friend after friend share their horror stories of dealing with C. I finally started to feel less alone. I wasn’t happy that my partner was still in this relationship because of the ways it was affecting me, but at least I wasn’t alone in my feelings anymore.
I had refrained from talking about any of my problems with C because I didn’t want other people to have to pick a side and I didn’t want to damage her relationships with mutual friends. I tried to be the bigger person. I continued to treat her with respect even though she didn’t extend the same back to me. Even months after the breakup, I limited my discussions with mutual friends to protect her. And really that was the thing that made my partner finally end this toxic relationship. She was contacted by a mutual friend who said they wanted nothing to do with me anymore because C was trash talking me behind my back, lying about things I had said or done and framing them as her feelings so no argument against them could be made. That was the last straw. My partner met up with her to break up. C failed to mention she was drunk and the breakup took until after 3 AM because my partner had to wait for her to sober up enough that she’d actually remember the conversation in the morning. Yeah, it was a three hour breakup.
So why am I bringing all of this up now? Because C is still, unsurprisingly, bad at boundaries. And this is still, perhaps just as unsurprisingly, affecting my life. I am angry at her behavior, I am anxious of the way she may treat me after the next conversation that she and my partner have about respecting boundaries. I’m anxious that she’s going to try and turn our mutual friends against me as she has in the past. I’m angry that months after my partner broke up with her, that boundaries are still continuing to be violated. I was talking to a mutual friend last week and her reaction was that it sounded like we had both been hurt by this relationship. And I wish I’d had the strength to tell her that it wasn’t just that we’d both been hurt. That C had been actively manipulative and toxic and abusive during the six weeks she and my partner were dating and that it went beyond not inviting us both to the same gathering. I wish I’d had the strength to not just shrug and agree. I don’t know where to go from this point, but I need to figure something out because right now every time I see her face, I’m a ball of fury and hurt and recognizing that anger is a secondary emotion doesn’t make me feel any less angry by the situation.
After Amelia’s death in January, the depressive episode I was in got worse. I waffled about going back to the partial hospitalization program (Triangle) that I attended in June because it felt like maybe my depression wasn’t bad enough to warrant me being admitted to it and besides what if there were other people who needed the services more than I did. Yeah, I apparently have imposter syndrome about accessing mental health care. But that was what I was thinking, distorted or not, and after some gentle pressure from both my psychiatrist and my therapist, I gave in and got my therapist to call and schedule an intake for me. That was about a month ago.
Even though I felt shitty about taking up space in Triangle, I went in for my first day on February 19th. I was trying to push those thoughts aside and just focus on recovery when I read a statement online that wound up being the destabilizing event that my brain had apparently been waiting for. I wound up not really sleeping much that Monday and felt pretty crummy heading into the PHP the next day. I couldn’t stop thinking about what I’d read and the implications for what could happen and my thoughts just spiraled into despair. I made it through the first couple groups that morning and then just couldn’t make my brain stop. I asked one of the clinicians if she had a minute and followed her through the back hallway into her office. She was so kind to me and all I could think was what if it was me this time. What if the thoughts running through me took control and I didn’t make it home that night. We talked for maybe ten minutes. Well, she talked and I sobbed. I wound up meeting with the psychiatrist I’d been assigned to and she wound up sectioning me to a nearby ER to be evaluated for an inpatient bed. The irony of being terrified of taking someone else’s much needed spot in the program and winding up being transported across the city by ambulance to spend a week on a locked inpatient unit was not lost on me.
The hospital was okay. They were really lacking in structured activities, so I spent most of my time hanging out with other patients and playing with art supplies. I started another journal and probably filled half of the notebook before I left, mostly to get thoughts out of my head and also because I was just bored. The hospital psychiatrists made a bunch of changes to my meds. There were some not great moments, patients having meltdowns and breaking furniture, the guy who tried to commit suicide on the unit minutes after I’d been taken to my room, the guy who literally ignored me all week but who would sit at the table across from me and flirt with the women there as if I were invisible if I tried to continue being involved in conversation with the women I’d just been talking with. He’d go so far as to talk around me, change the subject of the conversation, or depending on who was around, switch into Portuguese so I couldn’t interject. But things were pretty okay. I found camaraderie in some of the other patients. I burrowed under the occupational therapy department’s weighted blanket that they loaned me. I gambled with the hospital kitchen, trying to order as many non-water beverages on my meal trays as possible and seeing what they’d cross off. (I think my max was one cup of hot water for tea, one cup of hot water and no sugar added hot chocolate mix, a cup of diet ginger ale, and a diet cranberry juice.) I felt pretty safe and supported.
I wound up celebrating my 35th birthday while hospitalized. I wasn’t really looking forward to my birthday because Amelia’s memorial was scheduled for the following day and it just felt weird to celebrate something after what had happened. My partner came by for a visit that night and brought me a slice of cake, with two other friends which I was not expecting at all. I missed the memorial, of course, which was felt complicated. I tried to distract myself that day, reading over the pamphlets on grief that the interfaith chaplain had given me, hanging out eating way too much no sugar added sorbet and playing games that I continued to suck at and lose. We marked the passing of time by waiting for our next meals, having long forgotten what we’d ordered by the time it arrived. I drank a lot of tea. I was discharged after a week, and referred back to Triangle the next day after spending a night getting much better sleep in my own bed.
The meds change has been interesting so far. The psychiatrist I saw in the ER increased my evening antipsychotic dose because he felt that would help with the ruminating thoughts that were keeping me up at night and added a sleep med. The inpatient psychiatrist I saw discontinued one antidepressant I’d been taking and lowered the dose on another because she though it might be making me more anxious. She also started me on a mood stabilizer which has mostly been making me drowsy during the day. I hear this side effect most likely will pass with time and I’m starting to feel a bit more alert this weekend, so I’m hoping it will eventually be fine. I am noticing that when my mood drops during the day it isn’t dropped as fast or as low so hopefully the med will do what I need it to do after we figure out the right dose for me. I actually woke up feeling really good this morning, even if it didn’t last throughout the day. It’s way better than I felt three weeks ago, or even a month ago. I’ll just have to wait and see what comes to pass.
Fifteen and a half years ago, I got my first tattoo with my ex. It was a very simple design, a Japanese kanji for courage, based on a tattoo my ex had in the same location on his wrist. I don’t remember much from getting the tattoo except that it was relatively painless and quick and I began telling people that it was a reminder to myself that I had courage.
Fifteen years was a long time ago. I’ve grown since then, though I might still need that reminder, but I’ve had regrets for a long time. I didn’t like that I had tattooed myself in a language that I didn’t speak, in a style that was appropriated from a culture that I’m not a part of. I regretted the reminder of my abusive relationship on my body. I just couldn’t figure out how to turn the kanji into something else though, since it was black ink in a pattern that I couldn’t draw into something else.
I’ve had a great appreciation for dinosaurs for a long time. And I’ve identified with them strongly for the past years, especially with Tyrannosaurus Rex. What started as an inside joke about how I am really a tiny dino blossomed into my adopting this as part of my identity. No, I don’t think I am actually a dinosaur, but I enjoy playing the part sometimes. So when it came to trying to figure out what to cover this tattoo with, I decided that it would be great to put a dinosaur in it’s place. I couldn’t figure out how to design it myself though, so I reached out to a local tattoo artist to see what he could come up with.
I was a little nervous going into the shop yesterday for my appointment, because I hadn’t actually seen the sketches he’d drawn yet and had no idea what things might look like. I knew that I could walk away without getting the tattoo if I didn’t like what he had come up with, so I wasn’t worried about getting something I didn’t like, but I was really hopeful that he would design something I’d fall in love with. He did not disappoint.
The dinosaur snakes its way from the outside of my forearm, covering the old tattoo seamlessly, and branches out around the outside of my arm. My only complaint with this tattoo is that it’s impossible to get all of it in one photo. The shading work is brilliant. I can’t express how much I love this tattoo. It feels appropriate to have something that fits in line with my identity rather than a foreign symbol that made me cringe every time a stranger asked me about it. It feels like a reset in some ways.
I’ve been so engulfed in depression lately that laying on a table feeling that familiar stinging sensation as the tattoo artist transformed my arm was comforting. In the same sense that self injury has been comforting in the past, the pain felt like a release that I had long been needing, except this pain didn’t come with feelings of shame and regret as self injury often does. My partner who came with me kept commenting that I just looked blissed out for the most part, probably because I was high on endorphins. But it was good. I needed this.
I’m starting again in the LGBT partial hospitalization program that I went through over the summer tomorrow morning. I have a lot of feelings about getting help, mostly shame for needing help, for not being strong enough to get through this on my own. I know that this is my own internalized shit and that it’s actually a strength that I’m not giving up and fighting this, blah, blah, blah, but it sucks all the same. However, there is one brilliant thing* that does not suck that is easy for me to see and since it’s still really sensitive, it’s easy for me to feel. That is a thing that I can bring with me tomorrow when I go to my program, which will be with me the entire time. And I love it. I guess what I’m trying to say is that even though things really suck right now, this experience has been a light in the dark and I really needed that right now.
Image – Four photos stitched into one, showing four different angles of my right forearm with my new dinosaur tattoo
*I just want to mention that another brilliant thing in my life is my close friends and family and partner who have all been providing me with a lot of necessary support