I made a decision that I’d like to get on testosterone injections, temporarily. I’ve thought on-and-off about it for a while, and I think the idea solidified over the summer, like, once I’m back to normal after recovering from surgery, I’m going to look into it. Unfortunately I knew I couldn’t just get this from my Primary Care Physician – she had been OK with maintaining my androgel dosage, but not comfortable with changing / increasing anything.
On September 26, I called the local LGBTQ+ health clinic and explained what I’m looking for. They said they could get me in on January 25th. I said, OK set the appointment, but in my head, I was thinking, this is a ridiculous amount of time to wait. (And, I know, I know, relatively speaking, it’s not at all, especially looking at it from a global perspective. But, if I think I can do better than that, why not try?)
From there, I looked up endocrinologists in my area and what types of care they covered. I found one that hypothetically seemed like a good fit, and I posted about it on the local transmen Facebook page. I got one comment that yeah, she and her staff are good, and a few more comments agreeing with the inefficiency of the clinic. In terms of vetting, that seemed good enough.
I called her office on September 27th and was told I’ll need a referral from my Primary Care Physician, and then once that’s in, I should hear back within a week. I called my PCP’s office, and they said they’d send that over right away. I then waited 10 days before calling. I was told the referral didn’t get received, huh, not sure, can you have them send it again? Got that done, this time with a confirmation plus I got a copy, and waited another few days. I got a call from my PCP’s office, saying that the endo needs an additional referral, from a psychiatrist. GATEKEEPING at its finest. I would have been super pissed, and probably would have stopped trying to go this route, if it weren’t for the fact that I actually do have a psychiatrist right now. So although I hate that I had to do it, it wasn’t actually much of a hassle.
I emailed my psychiatrist (she was already aware that I was pursuing this), summarized the nature of the referral from my PCP, and asked her to also write a letter. I said that including pertinent information, like the fact that I’ve been on a low dose before, that I’ve had top surgery, and/or that I identify as non-binary would be great. She replied that she could write the dates she’s seen my, my diagnosis (meaning my mental health diagnosis), medications she prescribes, and mental stability status. “OK?”
I replied, “OK that’d be great, thanks.” Guess I didn’t want to argue or push it.
I then waited another 8 days (by this point, it was Oct. 25th, a whole month later and I still hadn’t secured an appt.) and called the endo’s office again. I was given a wishy-washy answer by the administrative assistant. That the endo is still in the process of finding more information, and she is currently booking out till January – they can get me in for January 10th. But at the same time, she can put me on a waiting list to get me in sooner. I asked, if I were to call and check my status, would that help me “jump the line”? (I didn’t actually use this phrase.) She implied that sure, that could help.
At this point, I took a step back and thought about what’s happening. So far, the endo got a referral from my PCP, and that didn’t include any history of care: just Female to Male transgender person (F64.1), chronic. In addition, they got information from a psychiatrist that I am bipolar, that I have been seeing her for 9 months, and that I’ve been stable during that time (relatively, this is such a short amount of time; it’s kind of implying that the rest of my “bipolar disorder” time is a wildcard.) I don’t want to get too paranoid, but this collection of information is not working for me at all. That plus the fact that it’s straight up inaccurate.
Feeling like the system is working against me, I decided to pull from my bag of tricks and email my therapist. If there’s anything that could help this stalemate, it’d be her. I relayed this whole series of events and asked her if she could also write a referral, actually filling in the background information. She replied in 10 MINUTES – such a refreshing change! and said crazy that this is so hard, and sure she’d write a letter, and is there anything else I’d want to make sure she includes?
So she’s writing a letter. My intent is, essentially, that this is not a new diagnosis, coming out of nowhere. That I’ve already been on T in the past, I’ve had top surgery, I’m in the process of legally changing my name, etc. So, this should be a continuation of ongoing care (timely, please!). I’m not starting from square one here. I imagine this endo has access of my medical records (?? not sure how that works), so if she looked into it, she’d find this stuff. I’m just having my therapist bring it to the forefront, which will hopefully change something?
Because, I feel like if it went the other way – my doctor sending the referral first on my behalf, instead of me going backwards to get this stuff covered, I would have been given an appointment within a more reasonable window. Not sure if that’d be true or not – there could be dozens of reasons outside of my control – maybe she’s just really busy. But, I gotta try…
I never before realized that these days are consecutive! Oh hey, these are the two most frequent topics of this blog!
In the past, I haven’t observed either through writing here, but I currently have a lot to say about both; this’ll probably end up being one of my more personal posts, at least as of lately.
First just real quick – a little bit of background / information about both:
World Mental Health Day (Oct. 10th) was first celebrated in 1992 at the initiative of the World Federation for Mental Health, a global mental health organization with members and contacts in more than 150 countries. This year’s theme is “psychological first aid.” My first thought was that it refers to how to handle someone who is in a mental health crisis, but it actually refers to being a support to someone who just witnessed or experienced a terrible tragedy. There is a world of difference between the two, even though there’s also overlap; of course, learning about both types of situations is going to be important.
Nat’l Coming Out Day (Oct. 11th) was founded in 1988 by Robert Eichberg and Jean O’Leary. Oct. 11th was chosen to commemorate the anniversary of the 1987 Nat’l March on Washington for Gay and Lesbian Rights. It is observed in the spirit of the personal being political and the idea that homophobia cannot thrive once people know someone personally who is LGBT+.
(Information is coming from the World Health Organization website and wikipedia.)
Last night, I saw an amazing documentary called Strike A Pose, which just came out last year. It’s about the seven young male dancers from the NYC underground (the origins of voguing) who were personally selected by Madonna for her tour. They also ended up starring in a behind-the-scenes documentary at the time, called Truth or Dare. Madonna was very outspoken about AIDS, gay rights, safe sex, and of course, Expressing Yourself! [Spoiler Alert:] What was most interesting though, was that at the same time these young men were embodying those messages on her behalf, they were not all on board or comfortable with it. Three of the men had been diagnosed with HIV prior to the start of the tour, and they all were silent about it to the extreme, not even telling friends or loved ones. Also, one of the men sued Madonna after the tour, for forced outing, partially spurred by a coerced kiss with one of the other dancers in the Truth or Dare doc. He was not ready or willing to be that person, to be making that statement.
So, I guess what I’m saying with all that is that Nat’l Coming Out Day is great and celebratory and everything, but in order to actually be empowering, it has to be on each individuals’ own terms. Once I outed a friend (about something totally unrelated to being LGBT) as part of a joke, and then I felt really crummy about it. I just let time wash over that one, but it’s still a prominent memory.
So where am I at? I still have a fair share of coming out to do. I’m not doing any of it today. It does feel imminent though – I’d say within the next 6 months. I look forward to the day that my driver’s license, signature, little plastic rectangle on the custodial office, Facebook page, the words out of teachers’ and co-workers’ mouths, and everything else, all say the same thing! As of now, I have 5 different names going on in different places, and none of them are the full name I actually want to go by!
Here’s something I wrote that really captures this feeling (I wrote it almost exactly 2 years ago. Dang, that is a long time!): Fractured identity and fragmented feelings
Moving on to mental health:
My mental health has improved by leaps and bounds within the past 9 months, and I have not written about it. Actually, the most recent thing I did write was 9 months ago, here: A full year later / Making major changes. I was hopeful but tentative. I had had 23 good days in a row (an anomaly), due to starting yet another drug. I am still on that drug, and I am still having good day after good day after good day (other than not so great days due to a cold, a handful of really bad days during the stress of surgery).
Overall, I am more stable and happy than I ever have been before, BY FAR. And I feel certain that I can attribute that to a drug, something I never would have thought possible before (I’ve been on lots of drugs over a span of many years, and did not have a good experience with any of them. I had gone off medications completely for 10 years because I thought it was hopeless. I always downplayed the usefulness of psychotropic drugs. When I was younger, I thought I was the only one who had this reaction; now I know it’s fairly common to have to go through a trial and error period, searching for something that will actually be a good match.
During those 10 years I was not taking medications, I focused on other things to improve my well-being. Most of that was social in nature – focusing on not isolating, focusing on positive connections with people, focusing on emotional intimacy. It worked. To an extent. I started to think that getting back into therapy would probably help. That worked too. It felt miraculous for a while at first, actually. But as the years went by, kinda only to an extent. I found myself in a situation where I HAD to get back on medications, and I was not happy about that at all. In fact, I recall thinking a lot about when I’d be able to get off of them (maybe 6 months? I was thinking…)
In the end, it has worked out better than I ever could have imagined. I am neither pro-med nor anti-med. It’s way too personal, and different for each individual, to have a general feeling about it. But I can say that I used to be anti-med, and now I feel that, for some people, it can be that one game changer that makes all the difference.
Two states down, 48 to go!
I am starting to work toward getting in on this!
In June, I posted about Jamie Shupe, the first person in the US to successfully petition for the gender status of “non-binary.” Now as of September 26th, Sara Kelley Keenan is also legally non-binary. Here is a full article about it: Californian Becomes Second US Citizen Granted ‘Non-Binary’ Gender Status.
I want to be the third! (Or the fourth, or the fifth, or the sixth, etc. The number doesn’t matter to me at all; just that I get to do it, eventually.)
I’ve been stalling about changing my name legally, for a long time now. It’s been a year and a half since I socially changed it, everywhere except for work. Part of the reason for waiting is because I don’t know what I’m doing with my last name. And if there’s a chance I’m going to change it, I don’t want to go through this process twice!
And yeah, work is the other reason. I mean, I can legally change my name without coming out at work, but it would be great if the two goals aligned.
And now I’m wondering if I can change my name and also request the status of “non-binary” all at once. I’m in the process of finding this out. There is a social justice group called Transgender Legal Defense & Education Fund (TLDEF) that partners with lawyers and law firms for pro bono work on issues including the Name Change Project. Luckily, I fall within their geographical range, so I filled out their form, and should hear back within two weeks!
I also am fairly close to feeling good about moving forward with a new last name. I had one idea a long time ago but was unsure. Over time, I stopped thinking about it entirely, until just last week. I went to a therapy appointment for the first time in a few months, and that jump-started some thought processes that had been calcifying in the corners of my brain. Things got shaken up, and I’ve been feeling consistently euphoric ever since.
A little more about Sara Kelley Keenan: She is a 55 year-old retired paralegal who was born intersex. According to the article,
Her court petition was a quiet, unannounced test case for a group of California people who also seek to change their legal genders to non-binary rather than female or male. About five people—all working with the Intersex and Genderqueer Recognition Project—plan to petition courts in the counties of San Francisco, Alameda, Santa Clara and Sacramento over the next few weeks.
How awesome is that?! I’m picturing a floodgate opening and people just pouring through. First five more people. Next fifty!
… “I’m 55 years old, this doesn’t really change my life very much. But I want to leave the world a better place for younger intersex people. This represents a huge opportunity for acceptance and awareness for young non-binary and intersex and trans people—and for their parents.”
There are still more barriers, though, of course. The DMV. Getting a passport. Other documents. Things are changing though, slowly but surely. Just last week, Shupe’s attorney got an email from the Oregon DMV, stating,
“[the Oregon] DMV received the okay to move forth with forming an advisory committee and drafting administrative rules regarding the capturing of sex on the driver license. The rules will allow DMV to capture and print an identifier for sex other than M for male and F for female on the driver license, permit, and ID card.”
Hassles! But, things are moving…
Content Note: vanity.
When I first saw my chest, looking down while everything was being unwrapped, I was pretty happy. Everything looked good, except for the fact that the left side was larger than the right. I was assured it was due to swelling, and everything would even out.
Now that another week has passed though, I’m not feeling it. I am more and more skeptical that there is much, if any, swelling going on. My spouse agrees. Regardless, I’ve been taking arnica and bromelain… using ice packs a little bit.
Right now, there is not enough symmetry, in multiple regards. The areolas are different shapes, and they are too large (not “nickle sized,” like we discussed). The nipples are also too large, but it’s kinda hard to tell what’s going on there (they’re currently being smooshed flat, and will continue to be for another 2 weeks.) The biggest thing, though, is, I have different sizes going on, which contributes to the areolas/nipples being not in the same place, on each side. I don’t like that!
All these differences are fairly subtle, but definitely noticeable. I know it’s way too early to be coming to conclusions about how things look, but, so far, not so good.
I’ve been in a pretty negative space. I’ve felt so negative at times, in fact, that it was hard to feel motivated to do all the showering and “nipple care” stuff. This has gotten better over time. Everything could change a lot, as I heal; I do recognize that. It’s not all bad. Every time I have the sterile pads and binder off for a little while (to let things air out), and I put on a t-shirt (carefully!), I think, “This could work!” Excitement is there, somewhere. Sometimes I push down the good stuff, and remain guarded and reserved.
There is something here though: When picking a surgeon, I wasn’t going off of a whole lot. I mean, I pored through what was available on transbucket, for sure, and searched resources, youtube, and the like. But I didn’t really entertain all the possibilities very much, in my head. I had a gut feeling about one route, and kind of just stuck with that.
This isn’t the first time I’ve made huge, life-changing decisions in this manner. But I kind of hope it might be the last time. (I know it won’t be, haha.) There are better ways to go about narrowing down all the options!
There is one resource that I just learned about a couple of days ago, because a fellow blogger pointed the way. Gabriel wrote a post called Getting Started With Top Surgery. He mentioned “top surgery Facebook groups where people share their results and stories with their surgeon as well as the price quotes they’ve paid.” Oh yeah! Facebook. That had not even crossed my mind, unfortunately. So I just joined an FTM top surgery group, and wow, this is where all the good stuff is. Wish I had known about it 6 months ago.
Edit: My spouse suggested I stop looking at the FTM top surgery page for a while. That sounds like a good idea – I was starting to get obsessive about it. She said wordpress is good. Stop going on facebook. Haha. I agree.
I feel torn about whether I will post pictures or not, and if so, where. Before surgery, I was sure I would not post pictures on this blog, but I would post them on transbucket, when I feel ready. (They can be accessed if you create an account on transbucket). This still sounds like what I’m going to want to do. I do not plan on ever being shirtless in public. So, in regards to aesthetics, the most important thing is how everything looks while wearing a t-shirt. Other than people looking up pics as a resource, the only people who are going to see my chest are my spouse and me (and medical professionals, when necessary). So is it important what it looks like? Ultimately, yes. But for right now, as long as I can wear whatever I want, I will be happy enough…
During my most recent therapy appointment, right before surgery, I had said, “I’m worried my chest won’t look as good as it does now.” As opposed to saying, “I’m worried my chest won’t look as good as I envision.” That, to me, says a lot.
In other news, I had a great time in Philadelphia with my mom, after my follow-up. We went to a brewery and record store. We met up with friends at the Philadelphia Trans-Health Conference and went to two workshops. Wish we could have stayed longer!
Also, my spouse and I went to a wedding this past weekend, and it was a lot of fun! Their ceremony reflected who they are, a lot, and everything was casual and laid back. After the ceremony, I was asked to sign the marriage certificate, as one of the witnesses. This was a total surprise! I felt honored. I asked the officiant if it had to be my legal name, and she said it didn’t matter. Awesome!
About 10 days ago, my breast tissue started to feel inflamed and tender. It wasn’t in line with my menstrual cycle, and it hurt way more than that would, anyway. As it got worse and not better, I wondered if it was some strange manifestation of a psychological reaction to my upcoming surgery. I wasn’t feeling stressed or anxious about it, but was this psychosomatic? Then a patch of skin below my left armpit started to really burn and sting, as well as the skin around my shoulder blade.
Then 3 days ago, I broke out into a rash in those areas… and my boooobs still hurt a lot. I was able to get in to see my doctor yesterday, and… it’s shingles. She said that would also be causing the breast tenderness, because of where it is. Shingles flare up along a line of nerves starting at your spinal cord, and wrapping around to the front of your body – so that you only get it on one side, within a range of area. It’s like chicken pox, redux. Everyone I’ve mentioned this to says, “You’re too young to get shingles!” All I know about it really is that Carrie Brownstein got shingles while on tour (from reading her memoir, Hunger Makes Me A Modern Girl,) so I guess I’m in good company.
I got 2 prescriptions to help with the pain and the duration. We’ll see – it should start clearing up within a week… I’ll be going back in 2 weeks for my doctor to take a look. If this had happened close enough to my surgery, it would have had to have been postponed. That would have made me really upset! According to this timeline, I should be OK. It’s just so mind bogglingly coincidental that this suuuper painful inflamation occurred right in the area I’ll be having surgery. I’ll let you know which ends up being more painful – this or surgery!
Other than that, I feel relatively prepared. I just had my pre-op appointment via phone call a week ago, and that has put things into motion for getting everything ready. I got a huge packet in the mail of things to sign (informed consent), directions for when to do what, etc. I made a checklist to make it easier.
Pay surgeon – I still have to do this. I exhausted all info about my insurance plan, and there is no way insurance would pay for any of it. I expected as much all along, so, no big blow there…
Get parking permit – In process. My spouse and I will be in Ardmore, PA for close to 48 hours, and we need a temporary parking permit to park in the municipal lots.
Get therapist letter – In process. My therapist just sent me her draft last night, and it looked good to me, so she should be faxing it at some point today.
Get prescriptions filled – Done. This could be done well in advance, so your meds are ready for you when you need them. I needed to get a pain med and an antibiotic.
Get lab work – Done. I did it yesterday morning.
Go through a pre-op appt. with primary care physician – Done. I did it yesterday morning. I killed 2 birds with one stone – this plus shingles diagnosis all in one. She will be filling out a form to clear me, despite the shingles, and faxing it in.
Send in consent forms and everything else that needs a signature by me – I gotta get this together. I think I need to re-print certain pages and figure out what I still need to read through.
Take photos of chest – I did this for the surgeon already, but I might want to re-do it. Not while I have these shingles though!
I feel ready for surgery, mentally. Emotionally, I’m wondering if something is going on (shingles are brought on by stress, which I’m not actually feeling). I set up an appointment to see my therapist (who I haven’t been seeing lately), just to cover all my bases. It can’t hurt!
Around this time, 16 years ago, I voluntarily admitted myself to a psychiatric unit, but then I got stuck there for 19 days without knowing what was going on. The lack of communication was horrendous. I suffered a psychotic break and left with a diagnosis of bipolar disorder. I accepted this for years, and I internalized that I have a mental illness in some pretty detrimental ways. This has always stayed with me, always felt like something I needed to work through and get past.
Two years ago, I wrote about how I came to finally acquire my medical records from my hospital stay, and how I started to process things differently with the help of my therapist:
Continuing to work through a specific trauma
Last year, I wrote about finally bringing that record into therapy and how it felt to have her go through it. I was starting to realize that maybe I didn’t need to pick it all apart; maybe my perspective was shifting naturally, over time.
That specific trauma is still there
This year, although I’m acknowledging the anniversary, it feels like just the slightest emotional blip on my radar. I talked about it in therapy yesterday. I finally got my hospital records back from my therapist (she had been holding onto them for me for a whole year!) I looked through them again last night – there was always one page I skipped over. It was handwritten by me, explaining what had been going on in my social life that led me to feel like I needed to be hospitalized. I read it and felt OK about it.
Although this seems counter-intuitive, I think it helps that I was hospitalized in January. Where everything went wrong the first time around, everything went right(?) (maybe not right, but it went smoothly) this time around. I can overlay this experience on top of my shitty traumatic experience, and things make more sense.
I resisted the diagnosis of bipolar disorder for a long time, I’d been off all meds for 9 years; I felt relatively stable. When it was re-affirmed that I have bipolar disorder by the psychiatrist I was assigned, (“Once a bipolar, always a bipolar.”) I bristled at that. Actually, I bristled at him in general every step of the way. Appointments with him lasted a mere 2 minutes. He was inflexible and adamant I stay on meds forever. He forgot pertinent information about me. (At one point he told me I needed to stay on meds because I had been hearing voices.) After 6 months, I just stopped making appointments with him. With all his intensity toward me staying on meds, it was surprising how easily he let me just get away. Maybe he didn’t even notice I left.
My therapist helped me find a new psychiatrist; she’s awesome! She’s willing to follow my lead on what I want to do about drugs, and she’s willing to dialogue with me instead of ordering me what to do. I still don’t know what to do about drugs, but at least I have the space to feel supported with whatever I do choose to do. For now, I’m staying on them, but I can’t pinpoint why.
I respect this new psychiatrist. When she (also) told me I fit the criteria for bipolar type I, for the first time in a very long time, I felt like I could accept that. I don’t need to incorporate that in any particular way into my identity; it doesn’t need to mean I view myself differently. Personally, it’s not a core part of who I am. It just is an aspect of me that can just be, and I can leave it at that.
And I can finally integrate the difficult journey toward mental health as parts of myself, rather than things that happened to me.
Yesterday was World Suicide Prevention Day. I didn’t know this till today, but looking back on yesterday, unknowingly, I was thinking a lot about the idea of suicide – something I don’t think a lot about. It’s been an annual day on September 10, since 2003; this year’s theme is Preventing Suicide: Reaching Out and Saving Lives.
I’ve been thinking about this book that Kate Bornstein wrote called, Hello Cruel World: 101 Alternatives to Suicide for Teens, Freaks, and Other Outlaws. I haven’t read this book in its entirety, but the gist is that there are so many things you can do other than suicide – some of them might be extreme, some might be unhealthy, some might be even self-destructive. But if it gets you through the moment, and you’re still here, that is good enough for the the time being. I think that’s a great message. Sometimes when someone is in so much psychological pain, nothing sounds appealing. But if you just try something different, something way out there, it might be enough to even just temporarily jump-start you out of the mode you’re in.
When I was in high school, one day I heard an after-school announcement for a “yellow ribbon club.” I really wasn’t doing well, and I decided to see what it was about. It was run by school psychologists, and there were maybe 5 students who showed up. We went around the room stating why we came. I basically said I came because I was worried I might attempt suicide; I came to get help. The other students had come for other reasons – either they had been affected by the suicide of someone they knew, or they just wanted to help. After I said why I was here, one of the psychologists reiterated what I had said. I remember feeling embarrassed and selfish. I didn’t go back to any more meetings. No one ever followed up with me. I did not end up attempting suicide, but things did get worse, and I ended up in the hospital not that much later on. I partially blame the psychologists for never checking back in with me.
This is a hard post to write because suicide is such a loaded subject. I’ve never attempted suicide or had an actual plan or had serious suicidal ideations. But there’s another way to feel suicidal – just kind of vaguely feeling like you cannot go on. Like you cannot keep living your life. Like you want to just stop existing, or just sleep forever. I’ve definitely felt that. With all the rough mental health – related stuff I’ve been through lately, I’ve felt that even recently. It’s a dull, nebulous, insidious, recurring, empty heavy veil, a lens to see the world through – a hindrance for sure, because there’s not much to be able to see, through all those layers. I don’t really know how to address it, other than to hope it will pass.
I think that what I’m learning is that rather than fighting those types of thoughts and feelings or trying to distract or re-route, it is possible to just give them less emphasis, to live with them, and to just focus on doing what you want to do, despite them. Just let them cycle through your brain, acknowledge them, but don’t give them any more power than what they are – just thoughts and feelings that come and go…
Kinda easier said than done, but I am trying to adopt this practice…
I could easily write a 5,000 word essay on this topic; maybe one day I will. This is an abbreviated version:
Over night, my brain became a frenzied jumble of free associations. Every system I could imagine (friendships, technology, routines) opened up, and I was in the center of all of it, connecting all the dots.
I thought that Leelah Alcorn, the trans-teen from Ohio who committed suicide, was an elaborately staged message created by a group of people on Tumblr. Meaning, I thought she was not a real person – more of a call to action, one more thing to add to “The Transgender Tipping Point,” and finally really make some changes happen.
But I thought a lot of things right around this time period, for a couple of days. I believed I’d been chosen for amazing things, I was choosing my own adventure, and the further I could get before running into a dead-end setback, the more rewards I would gain. If I made it to my therapist’s office, she was going to give me this new phone I’ve had my eye on. If I made it through the entire day, I’d be going to a party thrown by everyone I know. I briefly had the thought, “My partner wouldn’t like that; that’s too much.” So my logic led me to believe I shouldn’t make it through the day at this rate. I should definitely get the new phone, but I should see what my therapist thought after that. Maybe.
Some things were already in motion, and there was no stopping me! My social media outlets were blowing up! My blog was going to get huge at this rate, and I was going to get a book deal out of it. Should I quit my job? I kinda like working there, as a janitor, so I’ll keep my job. I better write a note so that everyone will know I wanna go back to work. I pulled out one of those Mr. Sketch scented markers – it was Blue Raspberry – and scrawled out really big and doodle-y on a piece of artist’s paper, “I will want to go back to work.” It was barely legible. When I showed my therapist a few hours later, in fact, she couldn’t read it, so I just had to tell her I want to go back to work. I wouldn’t want to be someone who sits around all day, writing their book. I would get bored!
I called my therapist at 2AM and asked her, “Can you just come over?” I called her again at 7AM, just to see if she’d drop by instead of me meeting her at her office at 9. I was making some really cool displays in the house, and I wanted her to come check them out. I was playing a record – The Days of Wine and Roses by The Dream Syndicate, and everything was clicking into place. (Actually, the record is still on my turntable, untouched 4 months later – I’m playing it right now.) The lyrics were making perfect sense and informing me of things I should write down. “You say it’s a waste / not to learn from mistakes.” “Textbook case.” “It’s Halloween.” “She remembers what she said.” These messages were of utmost importance. This record was THE record to end all records.
By 8AM I was so bored and fidgety from doing stuff all night long, that I decided to take off for my therapy appointment early. I had everything I needed packed – My toothbrush and toothpaste, notes from work, and 6 bottles of hoarded Androgel (my prescription allows me to get more than I need, so I just collect them). I had no clue what would be happening next or how long I’d be gone after therapy (I might be put up in a hotel!), but I could figure out clothes and other stuff later.
Driving was a bit tricky. I was relying on intuitive cues, more than the rules of the road. Fortunately, my gut was telling me to slow way down and put my hazard lights on, rather than try to drive at the speed my mind was racing. I still got there early; when I arrived, I slammed my backpack into the corner of the waiting room, above the door. To alert the security cameras that I knew all about it. A man briskly walked past me and out the door. He was planted there to exit when I arrived. I proceeded to be loud and messy. I dumped out a bin of toys. I knocked over a chair. I said, “I’m borrrred!” I talked loudly about a Mazda advertisement on the back cover of a magazine. I finally understood how advertising worked – they weren’t fooling me! In fact, this whole magazine was rigged. I should just take it with me – I’ll need it later. I stuffed it into my backpack. One other therapist was there (this was a Saturday) and she tried to gently corral me until my therapist got there. She picked up the toys. She said she’d call my therapist for me. She talked to me in a steady and soothing voice. She wasn’t patronizing me.
Finally, my therapist arrived. We engaged in a delicate dance around each other. I knew on some level that I was going to the hospital. But I also knew that wasn’t necessary, and she was totally going to come over and check out my displays and then I’d be reunited with my partner to proceed with the most fun day ever! In reality, my partner was on her way to North Carolina with family (I’d successfully convinced her everything was fine / I believed she was just out with friends and I’d see her in a couple hours.) My therapist started calling hospitals for availability, and I conveniently went to the bathroom to shield myself from that stuff. I came back and dumped out all the contents of my backpack. This would be more fun. She immediately sorted things into piles to make sense of it. She called my partner and left a message. She asked me what my best friend’s phone number was and I told her. I left the room again while she talked on the phone. Before I knew it, my best friend was there! Magic! Everything was going my way.
I talked to my friend about the displays and we played Rubix cube. Suddenly we were all leaving. They led the way, and I went into the bathroom again. I wasn’t so sure anymore. I yelled out, “I set some things in motion, and I don’t know if I want it to go this far.” We were still just going to my house, right? My therapist replied, with forced enthusiasm, “Come on!”
I got in the car with her; my best friend went separately. I curled up into a ball and shielded my eyes from the world. I started to feel sad; I verbalized what I thought about Leelah Alcorn. I said, “I don’t know much about it. I know her name, where she’s from, and that’s about it.” She had been on the news. That was big. What I was trying to convey was that no one knew much about it. If everyone just saw her picture, her name, and her suicide note, maybe she wasn’t real. And maybe this kind of stuff happens all the time. What is real in the media? Scattered thoughts breaking down. My therapist said, “I don’t actually know where you live.” I replied, desperately, “Yeah, but you can find out.” She had a smart phone. People with smart phones seamlessly glean information all the time.
We weren’t going to my house. When we stopped and I uncurled myself, we were at the hospital. But it still wasn’t too late. If I just told her this is where it ends, and we go to my house from here, everything could still be OK. I looked her straight in the eye; I put my face two inches from her face. I said, “This is where it ends.” This had worked with my partner a few hours earlier. I looked her straight in the eye and said, “Everything’s going to be OK.” I gave her the green light to go on her trip. This time was different. My therapist probably interpreted that as, “The journey ends here, at the hospital.” I meant here in the car. Still though, I complied and followed her. After all, my best friend showed up here too, so it probably was all OK.
Five hours later, I was on the psych ward. I’d been in the emergency department. My mom had shown up. I had talked to my partner on the phone – it finally sunk in she was 6 hours away, and she and her family were turning straight around. My best friend had been with me. My therapist had left at some point. I’d peed in a cup. I’d gotten blood drawn. I’d signed some papers by drawing big loops over the entire page, not knowing what I was signing, exactly. But now, it was just me, and suddenly my choose your own adventure had come to a dead halt. There was no more choosing. I started yelling, panicking. “I NEED MY VITAMIN D PILL AND ELDERBERRY SUPPLEMENT!” I needed to maintain my body’s delicate homeostatic state. I was given a pill and took it; it was Haldol. It knocked me out for 18 hours. Before I faded out, the nurse was talking to me really sternly. She was really butch. “Do not start shouting on my unit – we don’t do that.” “I know I know it’s not like me at all…” “Also, you smell really strongly bad so I’m going to shut your door.” Then she started yelling. “He gets whatever he wants!” And I was out.
It’s been three months now since I was hospitalized. I was out of work initially for 2 weeks, then I went back for about a month before being out for another 2 weeks. I started to feel like things were improving – it was starting to be spring, time was on my side, and I would have moments where the crushing depression was lifting.
Then I had a really rough few days last week. I had 2 nights of disturbed sleeping in a row, and that really made the difference in whether I was OK enough or not OK. I called into work one of the days, but that started to not feel like enough. Things at work were starting to really trigger my anxiety, and this just got worse and worse over the weekend.
I had an idea about the trajectory of my recovery, but my brain is not following along. I thought, “OK, I just went through a manic episode with delusional thinking. This was followed by about 2 weeks of hypomania and then some mixed symptoms. I thought I could get away without sinking into depression, but it caught up to me. I should be in this depression for a few weeks and then things will start to lift and I’ll feel like myself again.”
Those few weeks have been stretching into 2 months so far. Like I said, a couple weeks ago, it started to feel like things were improving a little bit, but then I fell again, fast and hard. That wasn’t part of the plan. My therapist suggested going out of work for even longer, to give myself some time to heal. So, I am currently out of work for a month. It feels like defeat/relief. I started taking Celexa in the hopes that it will help.
Some of those nights when I haven’t been sleeping well have been agony. There were nights where I didn’t actually sleep at all – just kind of dozed only to be pulled out of it by some thought attached to an anxiety-reaction, over and over and over again. Does anyone else go through periods of insomnia? I kept trying to go to sleep in the guest bed, then switch to the couch, then back to our bed, then the guest bed, the couch, our bed, the guest bed… The night stretched out to infinity. I started getting agitated. Pacing. Swearing at myself. Punching a soft chair. I could have done worse, so I’m glad it was just that.
I’m at a new low. When I thought recovery was on the horizon, I sunk lower. In my past, I have been more depressed than I am right now, but who’s comparing? This feels pretty fucking bad.
When my feelings were so bad I didn’t think I could even be with myself, my partner helped me arrange to spend the day with her mom. We went to the bank, got coffee, ran an errand at the mall, she brought me to my therapy appointment, and then we had lunch at her house. That helped.
When it wasn’t any better 2 days later, I called a friend and she picked me up on her way to doing a bunch of deliveries for work. We ate lunch at an Indian buffet. That helped.
When I couldn’t imagine being home alone anymore, I went to yoga with my partner. That helped.
When I couldn’t fathom what I would do with these unstructured days, I looked into a place called the Creative Wellness Center. They have a bunch of art workshops and support groups, and it’s all free. I went to a jewelery making workshop just because that was what was being offered when I got there, and I went to a support group. That helped, momentarily, but I would have to say the social element was super taxing, and I’m not sure if I will go back.
When I expressed extreme despondency in therapy today, she suggested a partial hospitalization program. She looked into it and they do currently have openings. It runs weekdays from 9:30-3:15. I think this is what I need right now. She is going to fill out the paperwork and get back to me – I may be able to start next week.
In brighter news, my partner and I adopted 2 cats two weeks ago. Their names are Joan (after Joan Jett) and Jarboe (singer in a band called Swans). Normally, getting new pets would probably be exciting and fun. There are elements that are nice – it’s fun to watch them play together, and I like when they are cuddly. But to be honest, it has been stressful, just because of the state I am in. They are cats, doing their cat things. They get into stuff and knock things over. They eat things they shouldn’t. We’re containing them to the first floor right now, and Joan keeps getting through to go to the upstairs or basement. They are a whirlwind of motion; they are creatures being alive.
I keep hoping that they will save me from what I am feeling, but the best they can do is distract me momentarily. That’s a lot of pressure I’m putting on them!
Today is the 2nd annual World Bipolar Day, an event that strives to educate the public about bipolar disorder and encourages an open discussion to end the stigma associated with brain illness. There’s a facebook page where people can share stories, and there’s lots of links to different organizations. It was chosen to fall on this day because it’s Vincent Van Gogh’s birthday. He is said to have suffered from bipolar disorder, and he committed suicide at age 37. Bipolar disorder is fairly rare – roughly 1% – 2% of the population are bipolar. Some estimates say up to 5%, but there is this sense that it’s over-diagnosed. When I have questioned in therapy whether I am bipolar, she has replied something to the effect of, “That was a very popular diagnosis then. A lot of teens were being diagnosed.” Sometimes people think they have it because their moods are extreme; really something else might be going on.
I thought I’d take a minute to reflect today about whether I am bipolar or not. I mean, I did just go through a delusional manic episode 2.5 months ago, no doubt about it. And I am currently sinking through a rebound depression – definitely a clinical level depression. But I strongly do not think I am bipolar. It’s been 15 years in between episodes, and I’ve only ever had 2 episodes. Much of that time I’ve been off all medications. I can accept that I have bipolar-like tendencies (and I’m hyper-sensitive to stress levels), but I don’t think I fit the criteria, nor do I think I need to be medicated long term. In fact, I plan to go off my medications in a couple of months once this passes and I feel like myself again.
My new psychiatrist told my partner, “Once a bipolar, always a bipolar.” Meaning, I’d been (mis?)diagnosed already (at age 17), and there’s no taking that back. ??? He thinks I need to be medicated forever. He doesn’t get that I’ve been stable and have managed issues in my life in other ways for a long time. I’m pretty sure someone who is really bipolar doesn’t get to do that.
I can’t imagine what it would be like to actually be bipolar. To have to balance a medication cocktail indefinitely or suffer the consequences. Because when you’re actually bipolar, you can have an upswing or downturn without much prompting, if you’re un-medicated or if the medications are not right for you. If I was pretty sure I would be going through more mania and more depression in the near future, I would be living in fear of that. I honestly do believe I am prone to going through mania and depression again, but to a much lesser extent than someone who actually has bipolar disorder. And that’s scary enough.
One other factor that makes me think I have bipolar-like tendencies has been my reaction to SSRIs. I took Paxil for a few weeks about 13 years ago, and it caused me to feel super agitated and become hypomanic. Apparently this will happen if people with bipolar disorder take SSRIs. I do take this seriously, but ultimately I’d have to say I do not have bipolar disorder. Today I’m thinking about everyone who actually does.