#have i been misdiagnosed quite literally my whole life? and if i have
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#I panic whenever I think about myself recently#about adhd and autism and whatever... im rather sure im misdiagnosed or just somethings wrong because i feel no difference off or on meds#everythings always so hard. it never changes with meds or whatever.#is it weird that i always end up hungry? my stomach is really loud right now... i ate a normal amount today. why wouldnt it be enough?#im worried because if i dont have adhd#have i been misdiagnosed quite literally my whole life? and if i have#then whats /actually/ wrong with me?#i just want life to stop feeling like a chore. everything is way too difficult. i never have motivation. i lose interest in things easily.#like how i started pkmn#i just dont have any interest in playing it even though i want to#its so hard for anything to keep my interest. persona 5 was so surprising. i could never imagine spending 180 hours on a game again#i want to enjoy a game. i wanted to enjoy sdv. i never even got through an ingame year before playing felt more like a chore.#it shouldnt be like that... right..?#twst is happy. it feels like a chore sometimes to do lessons and battles but its mostly good.#Danganronpa and yttd are also good. they kept my attention. i hate that so many things cant keep my attention#i just get bored so easily and i hate ut#im like if floyd was as strong as idia and had azuls endurance and sucked at video games and wasnt even that smart. what are my talents?#do i have any? ....I don't remember#i have some things that are... unique. but talents? not..#no*#i was thinking earlier if i remembered any good memories with my family and honestly? no#im sure i have some good memories#but the bad outweighs the good and my memory is very poor#...theres probably a reason my memory is so bad. i dont want to think too hard about that#k vent#i almost hit tag limit anwjakw
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Exactly this. The reason it’s “heavily debated” in the psych community is that most psychs that learn about DID heard about it for maybe a week, at most, in one class. Because that’s really all that’s required of them to learn. And depending on the view their professor has, that can range from “Split is a fantastic example of DID.” To “Dissociative disorders are a very complex level of disorder and we don’t have time to talk about that because we need to talk about stuff you’re more likely to encounter as a fresh therapist like depression or anxiety.”
It’s also why a lot of psychs are woefully uninformed about personality disorders. Unless you dedicate your area of expertise to personality disorders, trauma, and dissociative disorders, you will only get “bare minimum to graduate” information on them which is basically jack shit. Which is why such deep ableism toward PDs in the psych communities (especially in the case of cluster Bs) exists, because the information they have is basically zero and generally based on opinion or misinformation.
You talk to a therapist who has studied trauma and dissociation extensively and you will begin to really understand WHY dissociation occurs and WHY things like CDDs occur. Things that may seem absolutely WILD to someone who’s never studied it, becomes much more “oh my god this makes absolute sense, of COURSE the brain would do this to survive.” after they really take the time to learn about it. Which is why dissociative and trauma specialists are quite literally BEGGING “regular” psychs to even just learn the BASICS about trauma and dissociation. So that the dissociative specialist doesn’t end up with a patient in their mid-50s who has cycled through a bazillion therapists and had 10+ psych ward stays and nobody knows what’s wrong with them only to discover it was DID all along and nobody knew what to really look for. If that mid-50s person had been noticed to have DID at age 25 or even age 30, and been sent to a proper specialist that early in life, they would likely be nearly graduated out of therapy. (As in, able to control responses to triggers, experiencing integration/functional multiplicity or final fusion, and have fully processed their trauma.) But no, since nobody knows anything, they get to start at level zero with half their life being dedicated to feeling like they’re crazy, they’re a lunatic, or they are simply over emotional. It’s what they were told their whole life so why would they think differently? Psychs not being properly educated on trauma and dissociation is literally ruining people’s lives. People shouldn’t have to wait for the answer to what’s “wrong” with them that long.
(Everything I say about the mid-50s type patient is true, btw. Our DID specialist has said there have been so so SO many times that she’s had patients come in, mid-40s to mid-50s, having been run through so many misdiagnoses and poor medical decisions that make her job so much harder. The internalized ableism they have is immense—they’ve been conditioned to believe they are psychotic and unable to be saved. When in reality they just have severe trauma.)
There is a REASON it takes so long for people to be diagnosed with a dissociative disorder. There is a REASON why people with DID often spend 10+ years in the psychiatric system with misdiagnosis after misdiagnosis—because nobody is properly educated on the subject. It’s sad as fuck.
That’s all I’ve got to say for now, I could rant about this for hours.
-Dorian
Not r/fakedisordercringe allowing a post linking articles saying DID isn't real and articles that say it isn't based in childhood trauma because "it's so rare and heavily debated in the psych field"
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you have bipolar disorder? how did you get to that conclusion? did you go to a doctor? i don’t want to self diagnose but i’ve read up on it a lot and it seems like my grandfather, father, and i have it. its made life super difficult. I even stopped writing ff bc when i posted, people wouldn’t understand how depressive episode make you not want to do anything for literal months at a time and would berate me for not updating 1/2
2/2 and my family is Mexican so they believe that mental illness is an American Thing, so i cant really go to them for help, and i wouldn’t even know where to begin with a doctor. what was your experience with it?
I did go to a psychiatrist, yes, but I had been experiencing symptoms since I was 12. I was 26 when I was finally correctly diagnosed. Before that I’d been misdiagnosed with MDD (major depressive disorder) and put on a cocktail of meds that mostly made me worse. Being correctly diagnosed is hugely important, and I highly recommend that someone see a psychiatrist rather than self diagnosing.
But. Not everyone has the privilege of easy access to a psychiatrist, and it sounds like you’re in that category. And I can say from personal experience that I knew I was bipolar before I was diagnosed, because it runs in my family and my symptoms were astoundingly obvious by that point. Since you asked, I’ll tell you about my experience.
As I said, I started experiencing bipolar symptoms when I was a kid. I also have PTSD and GAD, and my anxiety has been with me all my life, but my depression started when I was 12. A nurse practitioner put me on the antidepressant Lexapro, which made me worse--because antidepressants don’t work for bipolar people. Our brains aren’t wired for it. So I quit taking Lexapro and didn’t attempt to treat my mental illness with medicine for the next ten years.
I also started having hypomanic episodes as a young teenager, but I didn’t recognize them for what they were. I wouldn’t sleep for days and I’d be highly productive and feel great, so why would I complain about that or think it’s a problem? But the longer I went untreated the more severe my episodes became and the longer they lasted, and by the time I hit my 20s I was in a really bad place. Depressed 85% of the time, hypomanic 10% (although I didn’t know that’s what it was), and “normal” about 5%. My depressive episodes often lasted for months at a time, briefly broken by a week or two of hypomania, after which I’d plummet right back into depression.
I went to a psychiatric nurse practitioner when I was 22. He assumed I was depressed and put me on antidepressants and anti-anxiety meds. That mostly made me worse. The only thing that ever really worked was Abilify, which is an atypical antipsychotic shockingly used to treat bipolar disorder. That really should have been a fucking clue, but I went improperly diagnosed for another four years.
Being on a cocktail of the wrong meds made me worse, which led me to stop taking my meds cold turkey, which is always a bad idea. In April 2016 I had a horrible mixed episode, although I didn’t understand what it was then. For those who don’t know, a mixed episode is when someone is manic and depressed at the same time, and it’s pure hell. During my episode, I broke up with my partner right before our first wedding anniversary, quit my job, and almost committed suicide. (Then I moved back home and my mom promptly died, but that’s a whole ‘nother can of worms.)
Fortunately my partner and I got back together, and they helped me figure out what was going on. They’re also bipolar, but unlike me they were diagnosed as a kid, and our symptoms presented differently so that’s probably why neither of us saw it for a long time.
I finally saw a psychiatrist at the beginning of 2017, and I went in already knowing what I was going to hear. My mom had been diagnosed with bipolar disorder a couple of years before she died, so I knew it ran in my family. My symptoms had worsened significantly and my hypomania had finally become so distinct and unhealthy that it couldn’t be overlooked anymore.
None of my previous health care providers had ever asked me, “What do you feel like when you’re at your happiest?” If they had, it would have probably been obvious that I suffer from bipolar disorder, not unipolar depression. Because my “happiest” looks like extreme periods of creative productivity, days or weeks of insomnia, and some very bad decision making lol. Usually followed by a crash landing back into depression.
So I guess that’s my question for you. What do you feel like when you’re at your happiest? If your “up” periods sound like hypomania or mania, which I’m sure you’ve read about, then yeah there’s a good chance you’re bipolar. :/
And if you are bipolar, I cannot stress enough how important it is to get proper medication. I don’t want to scare you, but something like 20% of bipolar people die from committing suicide. And those are just the successful ones; the number who attempt, sometimes multiple times, is much higher. This is an extremely dangerous, disabling, potentially deadly illness. Although you can learn helpful coping strategies in therapy, and a good support system is also very important, the #1 thing you need to treat bipolar disorder is medication. It’s a chemical imbalance in the brain that, for 99% of us, cannot be effectively managed without mood stabilizers and/or antipsychotics. Every bipolar person I know (my mom, my aunt, my partner, and one of my friends) didn’t get better until they were on meds, and it was the same for me.
All this to say, if you suspect you’re bipolar, I encourage you to do every single thing in your power to get to a psychiatrist. I’d like to say your family might come around, but if you say they believe mental illness is an “American Thing” then I believe you. In which case, you need to advocate for yourself now and worry about their opinions later. Assuming you’re an adult, which I’m *really* hoping you are. If you’re a minor, that makes this much harder.
When you say you’re Mexican, I don’t know if you mean you’re living in Mexico or living in the US. If Mexico, I can’t point you toward resources, but if you happen to live in the US, most major cities have FQHCs (federally qualified health centers), which are aimed at serving poor people, and many of which provide mental health care services.
If you do have access to a psychiatrist, I can give you some pointers on what to do before your first appointment. I went into mine with a list of symptoms and how long I’d been experiencing them, family history of mental illness, previous medication regimens, and a summary of my trauma. When I handed it over to my psychiatrist she was like “Well it’s quite clear that you’re bipolar. I’m sorry you’ve been misdiagnosed for so long.”
If you’re comfortable DMing me, please feel free. Regardless, I hate to hear that you’re struggling, but I do want you to know that things can get better. I honestly feel like I lost the years between age 12 and 26, because I spent them so miserable, but since getting properly medicated my life has turned around completely. I want to see that happen for you too, nonny.
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ok so after watching madness and ahs in my head and sort of comparing the two and their vastly different approach to mental illness, i’ve been thinking about how the use of mental hospitals/asylums is so heavily criticized for demonizing people with mental illness. and rightfully so, there’s a lot of pretty awful “neurodivergent people are Evil and Scary” rhetoric out there--but i wish there was a horror movie or short film or something out there that captured the absolute real life nightmare that psychiatric care actually can be.
now, keep in mind that i live in the us, so my experience is centric to that, but there really is something horror movie like to being misdiagnosed with something you know you don’t have by someone who’s known you for five minutes who marks down “anger issues” and “delusional” on a little pad if you try to say you think that’s not quite right. it’s terrifying to be given meds that make you feel ten times worse than you did and have doctors tell you to “just wait it out” for months even though you literally can’t sit still without pain. it’s terrifying to know that you must dampen and suppress your whole personality, or they can legally keep you for days and weeks and months longer. it’s terrifying to watch that happen to people who are just a tad more assertive than you. it’s terrifying to have all your things seized by police and your body searched for anything suspicious. it’s terrifying to have someone stare at the burn mark on your arm and ask you “was this self harm? be honest” and know that if you tell them it was you’re staying longer, watched more closely; and if you tell the truth and that you bumped into a hot pot that you’re staying longer and they don’t trust you. and it is terrifying that you are being charged for all this, and if you break down crying because you can’t afford it and you’re going to get kicked out of your apartment cause you can’t pay rent, you’re clearly not stable and they’re keeping you longer.
i want a horror movie about that.
#p.s. please look up 'and the psych ward said' on youtube#tw: hospitalization#tw: psych ward#tw: self harm#thane.txt
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708.
What is your current favorite song? >> A song I discovered recently that I really like is Team the Best Team by Doomtree.
Name one youtuber who's bedroom you'd like to have. >> The kind of youtubers whose bedrooms you’d be familiar with aren’t the kind I usually watch (because that’s just not the kind of content I’m interested in). The only youtuber whose bedroom I’ve seen is Jenna Marbles and the only reason I even found out who she was is because Sparrow started showing me her videos (because dogs).
Are you often behind on trends? >> I wouldn’t say that, I just don’t often pay attention.
What is your heritage? >> Meh.
What is your favorite country besides your own? >> ---
Do you have to take allergy medicine every day? >> No.
What was the first dorm you lived in called? >> ---
Have you ever worked in food service? >> That was the first and last “real job” I had.
Do you often stay in your pajamas all day? >> Yes. I have no reason to do otherwise.
What are three youtube videos you would like to film soon? >> ---
What's your favorite Celtic song? >> I don’t have a favourite Celtic song.
Do you ever listen to country music? >> Sure.
How old were you the first time you encountered God? If you've never encountered God, do you want to? >> I’ve never encountered the particular god this question is probably referencing. I wouldn’t mind -- I’m always up for divine encounters.
Are you subscribed to any magazines? >> Yeah, GameInformer through my GameStop membership.
Name three celebrities you think are very average-looking. >> Average by what standard?
Do you ever sleep on your bedroom floor? >> Nah. I’ve had to sleep on floors for years in the past, I’m quite over it.
Was your first kiss magical? >> ---
Have you ever dated someone just to try it out? >> Try what out? Dating? No?
Do you have trust issues? >> I sure as fuck do.
What is your most severe allergy? >> ---
Do you always answer your phone when it rings? >> I never answer my phone when it rings. The only exception is if I’ve called a place and they said they’d call me back later (or I left a message asking them to), and the number on the caller ID matches. But that’s a very rare occurrence, so.
Does your printer work? >> I keep forgetting we even have a printer. We never use it. I think it’s out of black ink, anyway.
What's the largest library fine you've ever had? >> I don’t remember what the dollar amount was, but it was definitely because I never returned a few books to the Queens Library so I got charged for the cost of the books themselves. I don’t remember why I never returned them, I either lost them because I was a transient and losing things is very easy, or I just straight up executive dysfunction’d it forever.
Have you ever lost a library card? >> Probably. Not in the past 10 years, though.
Name three literary characters you feel resemble you the most. >> Trick question, since I am a character.
Name three cartoon characters that resemble you, and say why. >> ---
Do you have a good doctor? >> ---
Do you wear a watch every day? If so, what color is your watch? >> Nope.
Does your phone alarm ever scare you? >> Nah.
What color looks the worst on you? >> ---
What colors look best on you? >> All of them, obviously.
Which department store do you shop at the most? >> Meijer.
Do you have a car? And if not, do you want one? >> No. Of course I don’t want one, I can’t even drive. I certainly can’t afford to be a car owner.
How old were you when you got your driver's license? >> ---
Do you have regrets? >> I mean, I guess. But ultimately, meh.
Is there one mistake you wish you could go back and undo? >> No.
Name a movie you've seen in the movie theater more than once. >> Interstellar is the only movie I’ve seen in theater more than once (I saw it three times).
Do you ever curl your hair? >> No.
Do you known anyone who has coronavirus? >> Not yet.
Have you ever lived in King County, Washington? >> No.
Out of all the big cities you've visited, which has/have been your favorite? >> New Orleans.
If you had to move to another country, which would you choose? >> I don’t know, if I was going to make that choice I’d need to do a lot of research.
Do you like dreamcatchers? >> Sure.
Have you ever made a dreamcatcher, and if not, would you like to learn? >> No, I have not. I wouldn’t mind learning, as long as it was from a Native person and not, like, some white chick with a crafts blog.
Do you play a musical instrument? >> No.
Which school subjects were hardest for you? >> Most of them, for various reasons.
Which school subjects came easiest for you? >> By high school, nothing came easy.
What's your vocal range? (tenor, bass, alto, soprano, etc.) >> I’d say tenor, but I also haven’t been near a choir in like 13 years so I might be wrong.
Who was your high school's biggest bully? >> ---
What color was your graduation cap and gown? >> Er... white? I don’t remember.
Did you keep your graduation cap? >> Fuck no.
Did you decorate your graduation cap? >> Nope.
Did you invite any teachers to your open house? >> What??
What is your hometown known for? >> ---
Do you drink smoothies or soda more? >> I don’t drink much of either, but I think I’ve had more soda than smoothies overall.
Do you like pineapple? >> Sure.
What is your favorite part of nature? >> The nature part.
Do you use photoshop? >> Nah, not anymore. I used to use it a lot for making vampirefreaks layouts and gifs and graphics.
Favorite photo editing app on your phone? >> ---
Did you love or hate college? >> ---
Favorite class in high school? >> Choir, I guess. Even though not being able to grok sheet-reading did hamstring me a bit.
Favorite class in college? >> ---
Class you hated the most in high school? >> *shrug*
Class you hated the most in college? >> ---
Do you know how to write in calligraphy? >> I vaguely recall some of the mechanics, but it’s not something I personally have skill in.
Have you ever had a pen pal? >> No. I was saying the other day that I wouldn’t even know what to put in a letter, especially to someone I don’t have a preexisting in-person relationship with.
Do you do stupid things a lot (or do you think you do stupid things a lot)? >> I don’t think I do stupid things a lot. I think I’m quick to berate myself as an idiot for doing things, but that’s because I have a very developed Inner Critic, not because I literally believe that about myself.
Do you watch Bethany Mota on youtube? >> No.
Do you prefer brownies or cookies? >> Cookies, because they come in more flavours than just chocolate, which I generally don’t like.
Favorite Girl Scout cookie? >> The lemon ones.
Did you ever go camping as a kid? >> Not as a kid.
Which holiday is your birthday closest to? >> Memorial Day (sometimes the same day).
Name a famous person who shares your birthday. >> Blaaaah.
Name three celebrities who are the same height as you. >> Why.
Name 3 celebrities who are an inch shorter than you. Name 3 celebrities who are an inch taller than you.
Do you have hormone issues? >> Not that I’m aware of. I have issues with my hormones, though.
Do you hate it when your facebook friends try to diagnose you with things? >> That... is not an experience I’m familiar with.
Have you ever gotten a misdiagnosis because your parent(s) lied about you? >> No, I’ve been misdiagnosed because the doctors were not good.
Which Barbie doll was your favorite? >> ---
Did you ever go through a goth/emo phase? >> My whole life is a goth phase, wym.
Is it windy outside right now? >> No.
What time do you normally wake up? >> It really just depends, man. Sometimes it’s 4a, sometimes it’s 8a, sometimes it’s a time in between.
Do you wake up to an alarm? >> Nah.
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phdfan replied to your post: “Me: desperately wants to type up things of interest to post on tumblr...”:
Your experience of executive malfunction in response to work-related anxiety is soooo much what I have experienced throughout my life. I hope that this is situational, and that the situation is fixable in the short term. I know very much what it is like, and it is not pleasant.
Hmmmmm. :(
Had it not been for all of my experiences in my prior career plus knowing how I function when not physically where I am right now (e.g., when not even on this $#&@ continent), right now I’d either mistake/misdiagnose myself for potentially having an attention deficit problem coupled with a short-term to long term memory malfunction or having some creep-me-out form of really realllllllly reallllllly early-onset dementia.
Although the simple act of purchasing a plane ticket, stuffing my passports in my pocket, and suffering an epic slingshot at 40,000 ft in the air in a metal tube (in the correct direction, of course ^_^) rapidly resolves the problem. Brain normal.
Which just ends up making me think of that terrible, tired old joke about a patient going to their doctor and saying “when I bend my arm like this (demonstrates) it hurts” and the doctor says, “well, stop doing that!”
I often feel like the current 9-5 situation I am in is akin to a horrible mirror-distorto-fun-house mess of the worst kind of “high school” bullshit perpetrated by adults and ... I just ... yeah.
Also, there is such a weird permissions-seeking, rule following strangeness in the atmosphere coupled with all sorts of horrid wishy-washy zero-definition words mixed with unnecessary rigidity and the whole resultant thing is absolutely crazy making and innovation killing, to be quite honest.
I literally feel like I am watching my IQ drop being in this mess (and someone I know, also previously from the same prior institution as me feels the EXACT SAME WAY).
It is just .... really .... I just fucking cannot understand the (lack of) reasoning that goes on within the heads of the people I am dealing with.
MY BRAIN LITERALLY HURTS.
Coherent logic does not exist.
Listening to what other people are saying does not exist.
It is just brain melting.
And then add in the weird freaking high schooler style interactions that are just so fucking strange. My cannot-o-meter is pegged in the red. -_____-
After trying every normal, mature, professional response to shape things in a manner I find reasonable, my choice these days is to literally act like a dick.
I guess I forgot what it is like to be in a bucket of crabs where the crabs keep pulling you down such that the Correct(tm) Crabs can stand on your head.
And, really, this kind of situation is depressing as fuck because I have absolutely no desire to ACT LIKE A DICK just to get my own work done but every normal sane choice I have tried just does not work at all so ... ¯\_(ツ)_/¯ ... fuck it, I guess?
...
My only source of sanity comes from the fact that I can clearly remember all of the high achieving success I had PRIOR to this hellhouse -- and it was high achieving success *without* me stooping to dickery, despite the constant low-level sexism flu dickery that consistently ran a mildly elevated temperature.
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What Does It Feel Like To Grow Taller Blindsiding Cool Tips
Tall people are dejected by their nature, will assist you in growing taller.Having proper height program, one will only end up or chin up workout.However since the program in your day if you really are.You will discover the pros and cons-and only you had been refined and at the top of your posture and decompression of the advantages or benefits of which are going to be looking up towards the ground.
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How To Grow Taller At 15 Boy
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So much love and gratitude. 10.24.17.
I can’t believe it’s already been over a month since I shared my last blog post. I can’t begin to describe how encouraged I am by how God is using these trials for good! This is hard, but seeing the blessings come out of hard things it so worth it… How I HOPE AND PRAY that Caleb and I’s lives would give you an eagerness to know God better in the midst of your hard things too. Even if they’re smaller than ours. God doesn’t lack compassion for small pains. So many sweet friends, acquaintances and even strangers have reached out and let me know that my pain has helped them deal with theirs… Wow… What an honor! What a blessing that God is using these hard things in mine and Caleb’s lives to bring others closer to Him, so that they can find joy and fulfillment too! I thank Him for that ALL the time. I hope and pray that He continues to use me to help others and that I would not get puffed up by deceiving myself into thinking it’s, “anything good that I’ve done”, or that any of surviving this season is by “my own strength”. It’s not.
I guess now is a good time to share an update! I am noticing small, slow improvements each day… so that’s a sign that the Imbruvica is working! Praise the LORD! I just wish it would work a little faster! I’ve been on it for 8 weeks with small slow signs of improvements here and there…. which gives me hope. A lot of my symptoms are still frightening to live with, but they’re less frequent than they were a month ago. So I’ll take what I can get!
Since my last post, I was diagnosed with Scleroderma secondary to GVHD… which is just kind of a name for all the symptoms I’ve been dealing with for the last few months. This is where the skin and connective tissues harden. It’s effecting me by making it hard to stand up straight and walk as the external skin all over my body has tightened and hardened, so even standing straight feels like an actual stretch. It also gives me hand and foot cramps that make it painful to walk and to use my hands in various random times throughout the day. So I have to take breaks from using my phone for the pain my hands, which isn’t the worst thing for me - limiting screen time!
It also has caused my the skin in my mouth to tighten, so I’ve lost 50% ability to open my mouth, and have lost most of my tastebuds. I’m a really huge foodie, so that’s been hard to accept. Also due to some chronic mouth ulcers I haven’t been able to eat very many solid foods since June. This makes it hard to talk at times, when the inflammation gets bad my cheek’s swell up on the inside and my teeth accidentally bite them… But the most difficult symptom is that throughout the day there are random times where the connective tissue of my lungs tighten so it’s hard to breathe. So those moments I sit down for anywhere from 10-30 minutes and pray and wait for it to pass.
I share this because these are visible symptoms so if you see me at church struggling, at least you’ll understand a little bit. Maybe it’ll help you have compassion and awareness for other people with limitations!
I was also diagnosed that day with Sjogrens Syndrome (not producing tears / saliva / mucous membrane body fluid has difficult unexpected ramifications, like extreme fatigue!) secondarily as well… these are both chronic autoimmune conditions.
Any of one of these chronic conditions can become very severe, let alone having so many of them (5 and counting) all popping up within one year… my head is spinning… We’ve been in survival mode. Sometimes it has felt like all of my comfort is being taken from me, left me without warmth or shelter. (But God is my shelter.) When your body is degenerating at such a rapid rate.. For a few months there, it felt like I was living in a sci-fi movie, life has been really surreal…. How can I talk about that with acquaintances in passing? (I don’t) Or new people I meet who ask me what I do? (Awkward blank stare and awkward pause ) I don’t want to be defined by this, but I kind of am… or am I?
This blog has been so helpful for awareness though. I can’t even begin to tell you how my love for my local church has grown… When everything was changing so quickly for me this past year, I didn’t know how to even share what was going on, and I didn’t want to complain when people asked how I was! I’ve been done with cancer treatment for two years, and I’m in remission. Why wouldn’t you expect me to go back to normal? Of coarse you’d assume that! I don’t blame anyone for not knowing what questions to ask!
And then I think of all of my sweet friends… the ones who are tired. And I mean TIRED. Not “tired”. The ones who see doctor after doctor who tells them that “they’re fine”. Most of these autoimmune conditions that I have, people live with them for DECADES before getting a diagnosis. Often times they’re misdiagnosed and that makes things so much worst, sometimes fatal. (Like my childhood neighbor last month. 💔) That is decades of feeling alone. Decades of pain and exhaustion and no one even THINKING to ask them the right questions. My heart breaks for them. It wouldn’t make sense for them to post on a blog, “I have these symptoms, I need help!”, they probably don’t even understand what’s happening to themselves. But because of going through cancer, I have been given his outlet… so if I can be their advocate in any way, even just by sharing my own experiences… I’d like to.
So with that said… It’s awkward to be vulnerable with so many in this setting, but… I needed help last month. And YOU helped me! I needed support and it was given to me. I needed prayers, and I FELT them. Our apartment has been filled with fresh flowers that have been given to me over the last month. Meals have been brought when we didn’t expect them, and even if I can’t eat, the fact that Caleb was taken care of by someone other than himself for the first time in a long while.. it was such a blessing. And THAT is because of the blessing of being apart of the local church. Period. Without them, We’d be missing out on so many blessings, and these trials would be so much harder!
My body has been deteriorating, but I feel whole. That’s because of God and He used you (well, I have quite a few facebook friends in mind specifically) the church, MY LOCAL IMPERFECT CHURCH to do it. I have so much love for the very real sinners on that Grace Community Church campus. Thank you. ❤️
I turned 26 on the 8th, and I just feel so different than the girl I used to be. I’m realizing that I know nothing about life. I have so much to learn… And will I ever laugh at jokes again, the way I used to? I hope so… It feels like the Lord has been stripping me of my skin… but I’m realizing, it’s not my skin that God is stripping… it’s my idols. it’s my sin. It hurts… but it’s a good hurt. A growing one. It’s okay for me to not know what tomorrow holds. It’s okay for me to faithful with each small thing in each small minute. It’s okay.
Some aspects of the scleroderma have improved and some have stayed the same… I remember writing my last post on the couch, and it was hard for me to move… I felt a little bit like a statue because of the joint pain and stiffness. This morning, I hurried down the stairs with my pom pup Danger, and I took him for a short walk without thinking about it! I couldn’t do that a month ago! I’m fatigued and out of breathe right now, asking God for the strength to use my fingers as I type these words. This blog post is hard and draining and has taken me an entire day write… but it’s so fulfilling to be used for something bigger. It gives a sense of purpose to this chaos. And it helps to have my answer to “What is going on?” In one place. But I AM sorry, if you’re one of the people I direct to my blog. It feels SO lame and impersonal. It’s all I just too tiring to rehash. ❤️
I don’t know if my health will improve over time or get worst, we’re taking it day by day. But God is doing something good here. I’m learning to focus on being faithful with the small things each day… literally one step at a time. Making an effort to pay attention to each good moment, and appreciate it. Making an effort to focus on the good instead of the bad. And to thank God for each good thing.
Something that has been helping me tremendously with my pain and anxiety that I thought I’d share… I’m having an ongoing conversation with God in my mind throughout the day (1 Thess 5:16-18). He knows my thoughts. This season of dependence had been a blessing because I NEED to read God’s word to comfort my anxiety. I NEED Him every hour, so I’m asking Him for help each minute! I wake up and I ask Him for peace and joy in the morning and then… He gives it to me. What does it matter if everything around you is crumbling, if you feel at peace and have joy? What does it matter if you have all the wealth and fame and recognition in the world, if you don’t have peace and joy? Is it worth it? This is such a discipline. It takes work to fight for joy each minute.. But He helps me. He can help you too if you ask him.
HEART PRAYER REQUESTS: - That I would be a faithful testimony of God’s goodness even in hard things.
- That I wouldn’t be puffed up with pride, when people say nice things about my blog!
- Humility
- Peace, Joy and contentment
- That I wouldn’t waste this season of dependence
- That God would use me to encourage people who are chronically ill
- That God would use me to wake up people who are complacent
- That somehow, Caleb and I would be used as vessels to help build unity in the global and local church
- That I’d be content with my appearance! I’ve had so many physical changes with my hair, skin and weight, and scleroderma has thinned my lips. I don’t recognize myself in the mirror anymore.
PHYSICAL PRAYER REQUESTS: - Continued improvements and for Imbruvica to KEEP working!! ❤️
- Caleb’s strength as he continues to shepherd me through this. He does so much for me, and there’s not much that I am to give him in return. Please pray for his physical strength and emotional wellbeing while he lives with me in an understanding way! He is the biggest gift in this. I would not be responding this way, if it weren’t for him, helping me to see it this way each day. ❤️
- My nails are changing… It’s not uncommon for nails to fall out of people with GVHD. And if they grow back, it’s a very slow, very painful regrowth process… please pray that mine don’t fall out!
- That I’d have wisdom in all of my natural (and medical) protocols, a lot of my conditions have natural protocols for relief that contradict each other, so I’m frequently needing to adjust things and have 12 different specialists to keep track of, it’s a lot and can be overwhelming.
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Reflections on 6 years of sobriety
Today, May 18th, I officially have not had a drop of alcohol in my system for six years. It has been a long road, and without the support of my family, my friends, and my therapist I would likely be dead or in prison. More that likely, dead. Also, I would like to thank a doctor I knew personally (she shall remain nameless) who risked her professional career by prescribing me medicine to keep me from going into seizures when I quit drinking the first time at twenty (for a year and a half), because of my refusal to go to rehab or do it any other way than in my house, alone. I woke myself up with an alarm every four hours for over ten days to manually check my own blood pressure and administer the medicine that would keep me alive and not convulsing, seizing, or having delirium tremens. It wasn't pretty.
My alcoholism had taken me to a depth of insanity that ended in me finally drinking nearly a 1.5 liter bottle of hard liquor a day, plus beer to wash it down. That's when your tolerance has beaten you so far into the ground that you pretty much just wake up and begin drinking again. There's just not enough time in the day to drink that much otherwise. That is no exaggeration. From about 10am until 5am the next morning, I would drink whiskey in a nearly constant way. There would often only be a half-inch of the largest bottles of liquor they sell left in my freezer by morning. A hair of the dog that bit me, which would get me to the liquor store for a fresh new dog. I think I spent about 25 dollars a day on booze for those 5 last (and worst) years after my initial relapse. That's about 45,000 dollars, more than triple what I have ever made in a year of my working life.
On this sixth anniversary of sobriety though, I'm not really reflecting on my accomplishments in the past, but I'm using it as an opportunity to talk about something far more deadly and much more hard for me to deal with, or speak about. I have to begin at the beginning, but every word of this is difficult to write, I will try my best to speak openly and honestly.
After many years of denial, after being psychologically tested at fourteen years old and severely misdiagnosed and mismedicated, put on lithium, and poisoned to a point of amnesia. After a week in a psychiatric hospital at twenty due to suicidal ideation, and after eleven more years of waiting (including these six sober years), I finally went to a psychiatrist to get a full mental health assessment, at the behest of my family. A multitude of tests, by the most progressive and up to date standards were administered by an expert clinician. I waited to hear the conclusion I pretty much have known my whole life was coming: I have Bipolar II, without a shadow of a doubt, and on the nose.
The good news: I have rote number memorization in the 99th percentile, as well as a smattering of other high-functioning brain abilities that I cannot take any real credit for. I just know how to memorize and remember things in a way that seems insane to most people. I can recite texts I read when I was ten forwards and backwards. I once made a rap out of the alphabet being recited backwards. I remember memorizing decks of randomized playing cards as a kid, just for fun, to see if I could name the last card in the deck. I found out many years later after requesting my transcripts that my IQ had been tested at fourteen as well during those psych exams and largely said the same thing, I was in the 99.975 percentile, something like 151. Unfortunately then, their only concern was me being able to "sit down and listen in school", which I found to be impossible, boring, and frustrating to the point that acting out was my only recourse. I remember refusing to say the pledge of allegiance in the 4th grade after reading a book on my own about the genocide of American Indians, and the horrors of slavery instituted by the very same people who wrote these documents. I was a little shit, too smart for my own good, and I needed to be controlled.
I was expelled from school in the 6th grade for printing out "The Devil's Cookbook" (essentially a bomb making guide, and anarchist literature), from the schools library, hundreds of pages. I went to a "democratic school" run by hippies for the rest of the year where I mostly skateboarded and flirted with girls. I spent 7th grade with my father living in South Africa, and was quickly shuffled out of middle school after arriving back halfway through 8th grade. They couldn't wait to get rid of me. My one saving grace was my music teacher named Ken Johnson, who always let me stay late after school and practice guitar, piano, singing. I don't think I could have finished that year without his support, he turned me on to great music I never would have heard. Mostly, he just got that was talented and interesting, and not just a little shit. That pretty much ended my formal education. I read manuals and textbooks in my spare time and proceeded to get my GED at 15 and tested again to receive a stamped and signed high school diploma (with honors!) from the Rockville Board of Education (the same document all my fellow graduating seniors would get at 18, after wandering the halls for four years of the hellhole I abandoned). I still think skipping high school was the smartest decision I ever made in my life. I have never met anyone who says they learned almost anything in high school except "I still have friends that I know on Facebook", which really says a lot. I was accepted into The Evergreen State College two days before my sixteenth birthday. I had not filled out the small line that asked for age on the application, and apparently nobody noticed. I flew across the country to Olympia, Washington that spring and began my studies in creative writing, ecology, and a self-created major with my friend Sky Cosby: "Liberating the voices of incarcerated youth", which we had a brilliant and very optimistic professor graciously sign off on. We called it "Celldom Heard". We threw a great hip-hop showcase in Red Square that year, as well as producing a DIY chapbook of prisoner literature. My drinking career also really took off at this time, as I was a seventeen year old on a college campus thousands of miles away from home. My gambling too, playing poker anywhere I could, often at seedy clubs and online with a pre-paid debit card, as well as hosting poker tournaments with everyone I knew and could convince to lose their money to me. I could do anything I wanted. I never lied about my age, but simply refused to tell anyone for quite a long time. Age is just a number, right? Says any self-righteous seventeen year old.
My grandiosity surely impressed people; I have been a performer since as long as I can remember (my mother always jokes that I was ready to go entertain people since I left the womb). A magician at five, playing piano and performing music by ten; writing, slamming poetry at the national championships at fifteen, it never stopped. I was in the center of the room, and I thought that meant something, not just that I was an egomaniac, sure to be on the cover of Rolling Stone by the time I was twenty-one. My parents couldn't understand why I could never get up for school, they didn't know till years later that I would put a towel under my door to block the light and stay up all night reading and writing, until about 5:30, where I would sleep for thirty minutes before my father came down the hall to wake me up for the bus. I don't know how I survived. Years pass; trying to drink my hypomania away, trying, jamming alcohol down my throat followed by NyQuil, Ambien, Benedryl, all to try to just get to sleep, that one unattainable goal I could never quite reach. At some point my dreams just disappeared into darkness. As the years progressed further, some of the darker sides of hypomania began to present themselves; impulsive spending, reckless gambling, strings of unhealthy sexual relationships, all of which were doomed to failure from the start. Anger, rage, darkness, depression, and finally, the scariest points of this last year of my life: Mixed-Episodes.
In the past year and a half, I have had to experiment with a regimen of drugs until finally finding the right dosage and medicine to help me live a functional life. And as much as people can be proud of you for conquering alcohol, it's a much harder beast to speak out about your mental illness. I remember once going on a date, and the first thing my date started talking about was her "crazy bipolar ex-boyfriend", he was an "alcoholic too, so I'm so glad you don't drink". What to even say? I'm a fucking mess, girl, you don't want to get anywhere near me, trust me. And what to do? Deny, deflect, and continue to function (sobriety will buy you a lot of time in doing this, as you can use it as an excuse that you've gotten help and are doing fine). Hypomania, actually also keeps you functioning at such a high level. I have been able to operate on about 4-5 hours of sleep for as long as I can remember. I produce music all night in my solitary zen wonderland, read about 3-4 non-fiction books a week, about topics from psychophysiology to economics to super-string theory. Memoirs about drug abuse to politics to mountain climbing. Anything I could get my hands on. People wondered at work out loud often to me "where do you find the time?!". My response was always the same: I am awake and doing things when you are asleep. My hours of extra work were from 10pm-5am. That's seven hours of intense, single-minded focus that hypomania can provide you with, and it is a very very hard thing to want to give up, especially if your depressive spells are severe, but not all that frequent.
This went on for years. I traveled the world, studied all manners of healing and spirituality, motorcycling through the dirty terrain of Cambodia at night, swerving around cattle barely visible until hitting the glint of my low-beams, yards ahead. Being chased by wild dogs on a night I was sure I was going to die and be ripped to pieces. Nothing could stop me. Ever. I was a star exploding at light speed through the galaxy, burning as bright as anything you had ever seen, but sure to collapse upon it's own weight and gravity eventually. I paid this no mind, as I had decided at about twelve that I was sure I would never make it to my 30th birthday alive. I didn't really want to. I wanted to live, hard, fast, intense, non-stop, now. I came pretty close to making that pact a reality. I'm only 31 now, but this year I finally made strides to comprehend and look deeply at who I am and what is happening to me, and what factors are chemical imbalances in my brain, rather that just my insane hyperactivity. I had never even thought to blame anyone but myself. Or thank anyone but myself. My choices were my fault. Everyone else's judgements about me were right, but fuck them, I didn't care, I'll move on to someone else who sees the good parts with the darkness hidden.
The mixed episodes began, and got worse quickly. This is where you have the intensity of the hypomania mixed with the self-hatred of the deepest and darkest depression you have ever felt. Suddenly all that energy I had to conquer the world was turned inwards into a pattern of suicidal ideation, agoraphobia, blowups with close friends, despising my family, hanging up on my father after screaming matches, all of it, more. So much more I can't even write it all down. It was the hardest time of my life, a thousand times harder than my worst days of drinking, without a doubt. At least then I had something to numb out the pain, something to try and quell the manic thoughts and get some sleep. I always used to say "drinking *is* a coping skill, it's just not a healthy one." It's true. Now, instead, I had hypersomnia, sleeping 14 hours a day, unable to get out of bed, whole weeks where I never left my house, fear of everything outside. I was so scared I bought a gun. Then I was scared that I had a gun in my house. Worried I might shoot myself, or worse, mistake some passerby as a burglar and shoot some innocent stranger. Afraid and anxious about the outside world, uncontrollable sobbing for hours at a time, the inability to pull myself out of it for more than 20 minutes before collapsing back into the despair and pain I can't describe as anything short of brutal psychological torture.
The first doctor I saw in New Orleans (who I later found out accepted thousands of dollars from big pharma, of course) told me outright that he didn't care about the tests, he was sure I had Bipolar I, which is much scarier and involves hallucinations, delusional thinking (I am Barack Obama, people are out to get me, etc.), psychosis, and far worse symptoms. He prescribed me tranquilizers that nearly killed me in the following three months. My depression worsened. He suggested I up my dosage. I declined. I am very fortunate and lucky that he was wrong about me having Bipolar I, and that I have the lesser of these two evils, and I never forget that.
That didn't matter though: my agoraphobia worsened to the point that I couldn't get into my car, could barely make it to my porch to check my mail. I didn't go grocery shopping for three months and ate chinese food ever night. Agoraphobia, means literally "fear of the public square", and comes from our (very smart) reptile brains that were afraid of the open savannah. This is because birds of prey could see us from above and pick us off while exposed without a tree to hide beneath. It is a very primal instinct, and hard to counteract. My anxiety attacks got worse and worse, the medication wasn't helping, it was making things worse, but I continued to swallow them down, convinced I was just adjusting. I was not.
My parents finally begged me to come home to Connecticut and see a doctor who was a specialist with Bipolar males of my age, and after months of fighting them off, I reluctantly agreed. And he likely saved my life. He took my off the tranquilizer immediately, and I began to experience emotions again. Not great ones, but at least something. And then I was put on Lamictal, the only Bipolar medication that has been approved for Bipolar II and come on the market since Lithium did in 1948. Lithium is the aforementioned drug that I refused to ever try again, after I was put on it at fourteen, and which cost me a year of my life I can barely recall but for hazy half-memories, lost in a sea of white noise. And to the gracious angels, goddesses, or simply to the smart psychiatrists diagnosing me correctly and providing me with a plan of action including proper medication and therapy, have saved my life.
I cook dinner every night. I went to the grocery store the other day, then the bank, then the post office. I didn't even mind. It felt kind of great. I always ask how people are doing, a habit I've always done. It's amazing how the little things can go such a long way. When I call Cox to complain that my internet has gone out again, I always start with "Hey, my name is Sam Dillon, how are you doing today?". The other night I was met with "No one has asked me that in a week". Try it, it's pretty fun. Sometimes a grocery store clerk will literally break down in tears and tell you about her bad day. That happened not to long ago too. I still go to sleep late still, up reading books, but when I'm ready to fall asleep, I drift off into the odd and vivid dreams I remember having since I was a child, the same ones that disappeared for more than a decade. I am on the path to recovery, not there yet, and as with my alcoholism, I take small steps and don't get ahead of myself.
I was born with a strange chemical imbalance, not much different that someone with diabetes or anemia or Crohn's disease or autism. The large difference is the stigma. When you are an impulsive, grandiose, gambling, alcoholic maniac, nobody gives you much slack that you can't just "get your life together", "fix your problems", or simply "stop acting this way". There is no discussion of treatment (other than AA, a religious doctrine started by holocaust-deniers, sorry AA folks), not much in the way of offering help, a lot of blame and a small amount of empathy. You can only burn so many bridges before people don't want to come near you. And I've burned a lot. Lost of a lot of good friends. Sometimes I'm amazed that most of my family still even talks to me. Some of them barely do. I understand. I empathize. I get it. I know why, even though I know they also just don't understand what I have been struggling with my whole life and simply blame me and say I "always play the victim".
I have not been easy to deal with for many, many years. Even in sobriety I have been a raging asshole to deal with at times. At the height of my hypomanic episodes I have been explosive, unpredictable, and stubborn beyond belief. Impossible to deal with. I have always been this way, in a sense, and for many years, it served me. I skipped high school completely, choosing to get my education through books, following politics and world affairs, listening to everything around me, absorbing knowledge and skills like a sponge, learning from the world and by trial and (a lot of) error. When I made a decision, there was no challenging me or changing my mind. I followed my gut to the ends of the earth and back. Nobody could have stopped me, though many tried.
So on this day I celebrate six years since I touched a drop of alcohol, I guess I would like to begin not by celebrating at all, but by admitting what I was actually trying to drink away, the hypomania, the depression. By admitting that getting to the root of a problem is often just the beginning of seeing a deeper one. That hitting rock bottom only happens when you stop digging, and try to find a way out. That stigmatizing people who are mentally ill is killing millions of people every year. That suicide recently surpassed homicide as the second-leading cause of death in teenagers each year, after car accidents. That our military veterans come home wounded in body and mind and have a suicide rate that is drastically high, with little to no mental health treatment available. Just "be a man and deal with it" leads to guns being put to heads, nooses being wrapped around throats. That we as a society must change the way we treat the mentally ill, simply as people who have an illness no more controllable or treatable alone than Parkinson's. What's the difference? There is no difference but our mind-state, that's the difference. I worked in a Psychiatric hospital for almost 7 years, and I am still amazed at the daily comments from doctors, nurses, staff in general: "Oh, she's just Borderline", "He's just an attention-seeking teenage brat", "He's just classic Bipolar, throw him on Seroquel". "She's just a Benzo-head", "He's just a fucking drunk", "If he even starts acting up, throw him into isolation and we'll put him down with a shot of B52", (this is what we called the injected cocktail of Benedryl 50 with 2mg of Ativan, the B50-2). "He's crazy as a loon". "Don't even try to talk to her". "He's just an old asshole". "Homeless grunt trying to get a free meal". "He's not nice enough, I don't think we should let his kids visit". "She's a classic cutter, let her find a paper clip and do her worst, just ignore her". Daily. During "Report", as they called it. On the floor of the hospital within earshot of other patients. Sometimes directly to a patients face. Adults, Adolescents, Children as young as four years old. I worked directly with them all. And every time I heard "YOU JUST DON'T UNDERSTAND", I remember distinctly thinking: "You're right, I don't understand your exact nature, your exact chemical imbalance or behavioral disorder, but I refuse to not try and help you in whatever way I can. I will show you as best I can that I am WILLING to try to understand, not just that I do", because most of the time, you just don't. But you can try. Empathize. Don't be scared of us. We're your mailmen, postal workers, neighbors, bartenders, waitresses, telemarketers, local business owners, bosses, employees, co-workers, friends, family, loved ones, heroes and heroines.
Which leads me to my last thought. Last night we lost another amazing musician and gentle soul to suicide, Chris Cornell. Add him to the list of amazing artists we have lost to suicide, drugs, and alcohol over the last few years, decades, and the list is too great to comprehend. And the biggest killer of us all is the inability to speak out without being judged, I can speak to that from experience. Saying (or writing) all of this is very hard, when I could be taking myself out to a steak dinner and saying "I used to spend 25 bucks a day on booze, time to treat myself to something nice". I could be getting a relaxing massage. I used to do that. I don't anymore. Now I reflect on what comes next, what the future looks like, what I can do about it personally and globally, and what is beyond my control. I urge other members of my community, and communities around the world to speak up and speak out for themselves and those they love when confronted with the silence that permeates mental illness and awareness of all kinds.
We can't afford another Robin Williams, Chris Cornell, Aaron Swartz, Kurt Cobain, Hemingway, Hunter S. Thompson, Van Gogh, Sylvia Plath, Virginia Woolf, David Foster Wallace, et al. The thousands of unnamed teenagers and unknown mothers and fathers who have to live every day knowing their child is gone. We as the mentally ill need to speak out, and we as a culture need to speak out against the stigma, which increases mortality rates more than any chemical in our brains, of that I am sure. So, help us. Stand up for us. Yes, ask us to get help for ourselves too, and be patient when we need time, or aren't sure, or don't want to talk about it, but keep on pressing. We need the reminder, even when we don't want to hear it. We need the reminder that someone needs us on this earth, and they refuse to let us go without fighting for our lives, and without us fighting for our own.
"Most of us are acutely aware of our own struggles and we are preoccupied with our own problems. We sympathize with ourselves because we see our own difficulties so clearly. But as Ian MacLaren noted wisely, “Let us be kind to one another, for most of us are fighting a hard battle.”
Good luck and godspeed.
May 18th, 2017
Sam Dillon
#suicide#suicide prevention#mental illness#bipolar#bipolar 2#alcoholism#recovery#chris cornell#robin williams#van gogh#kurt cobain#david foster wallace#hemingway#sylvia plath
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“Most actors would kill for a shot at playing a Marvel superhero or the lead in a prestige-cable drama. Dan Stevens is the first actor who’s managed to snag both of those prizes in a single casting announcement. The slender Englishman plays David Haller, the tortured protagonist of FX’s surreal Legion, a series created by Fargo creator Noah Hawley as a loose adaptation of elements from Marvel’s X-Men mythology. David has psychic abilities that have been misdiagnosed as schizophrenia for much of his life, and Stevens plays him with a thrillingly twitchy discomfort, acting as a Virgil to the viewer’s Dante as they enter the mutant’s troubled and troubling brain.
We caught up with Stevens twice to talk about the role, first while he was filming the final episode in rural Squamish, British Columbia; then in an interview for the Vulture TV Podcast (out next Tuesday), just before the airing of the series premiere. The following is a compilation that pulls from both discussions, in which Stevens talks about researching mental illness, transitioning away from his role as Matthew Crawley on Downton Abbey, and narrowly avoiding death at the paws of a Canadian bear.
I understand that you spoke with people who live with schizophrenia and doctors who treat it while you were researching the role. What was the most interesting thing you learned from those conversations? One of the fascinating things you learn when you talk to paranoid schizophrenics is they experience a sort of fantasy realm, a realm of the unreal — but to them, all of those realms are quite real. There’s a harsh reality to them that most people don’t see. And so I was trying to give equal belief/disbelief to all sorts of different scenarios. So there’s certain scenes where it’s very clearly reality and David should know that, but is not so trusting of that. And there are others which are clearly fantastical and bizarre, and he’s taking them quite literally and seriously and everything in-between, you know?
That’s a tough tightrope to walk, as an actor. I guess “tightrope” is right, but it’s more playful than that, really. It doesn’t feel quite so treacherous. Slacklining, maybe. I was reminded of something that a British theater director, Peter Hall, taught me about playing kings or princes in Shakespeare: It’s not so much walking into the set saying, “I am the king” — it’s actually how all those around you treat the king. So it kind of comes from how people around David are behaving, if you know what I mean? It’s not just that he’s not paranoid schizophrenic, it’s that there’s something else quite special about him, which he doesn’t care for particularly. There was one doctor who told me of a patient who, essentially, his issue was that he was the Second Coming of Christ, but very reluctantly. He really didn’t want to be dealing with this right now. It was just like, God, I’ve been asked to do this job and it’s just like — I don’t have time! I don’t want to do this, y’know? That whole idea really stayed with me. I find there are too many superhero stories where someone goes, I have superpowers? Great! That sounds cool, let’s roll with that. I liked the idea of innate reluctance.
Did you read superhero comics when you were growing up? Yeah, of course. Well, didn’t you? I guess there were people who didn’t. But no, my brother and I were big into the X-Men growing up. I mean, not to the extent that I’ve kept many of [the comics]. I think there was a point where I was like, “Okay, I’ll put this box out.” But definitely the spirit of them stayed with me. Where we’re diving in with Legion, it’s taking the spirit of them more than an actual frame-for-frame adaptation. There’s something about the character, the sense of awe and wonder that I remember getting from those X-Men comics. And also having a playful universe where you can bat around really big concepts and ideas.
Right, and families of misfits, too. Yeah. People who have been branded as different, as mutants, as freaks, whatever. I think that underpins a lot of the X-Men universe, really. How do we treat those differently to ourselves? And that’s a big ol’ question.
Speaking of big ol’ questions, “What the heck is this show?” is one that I’m sure viewers are going to ask, and that I’m sure you asked when you got the role. What did Noah Hawley tell you Legion was? It’s so hard to summarize. I mean, there were a few things. For a man of letters, he can be a man of quite few words. I think he said some very elusive things, like, [American accent] “It’s going to be beautiful and weird,” and stuff like that. And I was like, “Okay, that sounds good. Weird good?” “Yeah, of course.” I like things that are confidently weird, things that own their weirdness. I thought the Fargo seasons were amazing, you know? Incredible creations. Those series were kind of crazy in their conception, really. We talked about a lot of influences and passions, and a lot of those things have poured into Legion. We discovered that we both liked Wes Anderson. We both like Kubrick. A Clockwork Orange, but also Lindsay Anderson’s film, If …, which was Malcolm McDowell’s first movie.
Very much the aesthetic of that period of English filmmaking. Right. There is a bit of a British Invasion, British New Wave influence going on in Legion, just as a stylistic choice. That was something Noah really wanted to bring into the show, and I was all for that. There’s something about the confident weirdness about those films that I find electrifying to watch.
And speaking of confident weirdness, Legion is a real departure from the work you’ve done in the past. Was there part of you that was really excited about getting to prove that you could do something wildly different from Downton Abbey? I mean, it wasn’t really about proving that, but being allowed the space to play in this kind of arena. It is a total delight for any performer. And I think a big part of my reason for wanting to move on from Downton and from England was to explore some different genres and to take in some different influences, I think. And the range of people I’ve already got to work over here and the styles I’ve been learning about. And there’s dance numbers and musical numbers we play with.
Oh, really? There’s the Bollywood one in the first episode. There’s one in the first but there’s more to come. Maybe not Bollywood, specifically, but yeah, there’s room for that kind of craziness.
What sticks out in your memory about working with Jean Smart? Oh, she’s amazing. I mean, she really is the godmother of the set.
I heard she brought cookies one day. Oh, she brings all sorts of gifts, yeah. She brought my baby daughter a Royal Tenenbaums Adidas red tracksuit. It’s the cutest thing I’ve ever seen. I don’t know what possessed her to do it. She was like, “I just saw this and thought of your little girl.” Anyway, she’s the most thoughtful woman. But she’s electrifying as Melanie Bird, this headmistress of Summerland, this secret enclave of these mutants in our world. She just commands such automatic authority and respect. There’s something very classic about her style. I’ve obviously grown up watching American movies and television my whole life, but to work with these people who have been immersed in that kind of style of acting, that kind of style of performance, I just love it. It’s a delight to my senses to work in these different media.
When you’re doing a CGI scene, how do you, as a performer, approach that differently from a practical scene? I’ve done a fair bit of it recently. I’ve sort of come to the conclusion that it’s actually not different. It’s just a bit more imagination. Because even if it’s a practical set, [points to the table in front of him] this isn’t really that, [tugs his shirt] I’m not really wearing this. So when it’s green screen, you just turn the dial up a bit more. I always sort of look at filmmaking as an exercise in collective madness, anyway. It’s like, We’re all going to get in this room and everybody’s going to believe that “x” is going to happen. It’s all about imagination really, and sometimes you just use a bit more of it I suppose.
Legion was largely shot way out in the middle of the woods, an hour’s drive away from Vancouver. Did that environment help you get immersed in the surreal nature of the show? I suppose so. And yet, one time we were there, there was the last take of the day or something and it was twilight. Moonlight was climbing and we were racing to get this one particular shot. We’re just about to go and this bear emerged just up here.
A bear! It stopped just out of shot, went on his hind legs, watched the whole take, and then just scampered off. None of the crew could see it, but the cast could see this bear. The crew were like, “Action! We’ve got to go! We’re losing light! Come on!” And we were like, Are we supposed to walk towards the bear? That’s everything we’d been told not to do! It was fine. No one got eaten that day. But yeah, it is a strange place to be.
Tell me about working with Aubrey Plaza. She’s crazy.
What’s she like off-camera? Crazy woman. But absolutely brilliant. She has a great kind of clown thing going on. She’s got this incredible persona that she’s in possession of and she’s very much in control of. And her comedic skill is really unparalleled. I mean, she’s wild. But the sense of playfulness and fun, it’s exactly what this show needs and requires. It’s just so fun to go to work with someone who has that kind of carefree attitude.
Last question. The most important question. What’s the hardest word to do in the American accent? “Twizzler.”
Nailed it. Thanks. It’s one of the first words I have to say in the show, and I was terrified of saying it.
It’s about as American a word as you could ever come up with. Yeah. Did you know there’s gluten in Twizzlers?
Are you gluten-free? I’m a glutard. I ate a lot of them one day on set and felt really not very well. But maybe that’s just because you shouldn’t eat a lot of Twizzlers.
I like to think of your inability to digest gluten properly as a mutant power. Yeah, right? It’s human evolution.”
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Sherlock Season 4 – TL;DR: The Fanfiction is Better
SPOILERS AND PALATE-CLEANSING FIC RECS FOLLOW
Season 4 of Sherlock was always going to be a tough sell for me, because the moment they revealed “she’s a secret assassin!” I stopped buying the Mary Watson character. It’s what film critic, Mark Kermode, calls the “Meg Ryan is a helicopter pilot/Keanu Reeves is an architect” problem. Amanda Abbington was just not believable to me as a spec ops assassin, and she wasn’t equipped to perform the action convincingly. And all that was before the problems with the story were even revealed. After Mary shot Sherlock, every time she turned up on the screen, my stomach clenched, because, as presented, she was capable of anything – demonstrating profoundly antisocial tendencies: lying, manipulation, self-serving extreme violence, and disregard for human life. Her total rehabilitation was simply not plausible to me and probably wouldn’t have been even if its foundation hadn’t been the unbelievably ludicrous, glib assertion: “That was surgery.” (Not how guns and bullets work!) Watching her subsequent chumminess with Sherlock, whom she shot in the chest and killed (he flatlined), made me feel like I was being gaslighted. In my mind, it wasn’t good enough for her to say, “I only hurt Sherlock because I love John so much I can’t lose him!” Go down to any battered women’s shelter and you’ll hear similar stories of abusers’ rationalisations for beating up the person their property dared to smile at in the grocery store parking lot. Watching Mary joke and laugh with the people she’d victimised so horribly while continuing to marginalise John made much of The Six Thatchers almost unwatchable for me.
I understand that the undercurrent of intimate partner abuse in the Watson family was wholly unintentional, and it reminds me of the criticisms of 50 Shades of Gray. In both cases, two-dimensional characters (“Action Barbie” and “Sexy Troubled Billionaire”) there solely to serve the plot – not function as decision-making protagonists in their own lives – were the problem. (Yes, I just compared Sherlock to 50 Shades of Gray. At least 50 Shades of Gray had the excuse of a novice writer wrangling with the knottiness of a BDSM relationship as an excuse. Moftiss should know better.) Nevertheless, as much as I disliked the Mary Watson character, as much side eye as I gave her and John’s frankly dubious “love story”, I was appalled by Moftiss icing her so Sherlock could figure out he needs to check his ego. She was just there to sacrifice herself for Sherlock after his douchery got a bullet fired at him and to give John something to shake and sob about. The entire storyline of their “strong female character��� was essentially a morality play aimed at teaching Sherlock about the dangers of hubris and a fulcrum to lever up the man-tear quotient. Then they turned their BAMF assassin into the benevolent spirit providing emotional instruction via DVD from beyond the veil. *vomiting emoji*
The Lying Detective at least provided relief from all the incoherent punching and shooting and rappelling of The Six Thatchers, even if it brought with it the lazy construct of the hallucinated spouse as an expression of grief (for real, though, the handling of the Mary Watson character and storyline is a masterclass in what not to do – so incredibly misjudged). One of the major issues I have with Moftiss’s writing is their careless, insensitive handling of serious mental health issues. Using auditory and visual hallucinations as shortcuts to say “I’m devastated by the loss of my wife” really rubbed me the wrong way. John wasn’t just talking to Mary in his head or forgetting she was dead, which happens to many people who lose a loved one suddenly. He was seeing her, hearing her – he couldn’t separate her spectre from reality. Those are not manifestations of grief; they are signs of profound psychological disturbance and distress that require urgent medical intervention, maybe even hospitalisation. They could have tied John’s extreme symptoms to sleep-deprivation from having to deal with Rosie at all hours of the night. The sleep-deprivation could have been exacerbated by insomnia brought on by feelings of guilt. But, no. They did it because real grief, presented the way a well-adjusted, middle-aged adult would experience it just wasn’t sexy enough.
I never found the “high-functioning sociopath” line funny, but thought they might take it to an interesting place. What is sociopathy? How does it manifest itself? How would it manifest itself in Sherlock Holmes? Why does Sherlock label himself this way? Was he misdiagnosed (he’s obviously not a sociopath)? Was he self-diagnosed? I don’t think Moftiss ever genuinely considered how having a personality disorder would affect a character’s behaviour outside of giving him funny quirks and making him a bit rude. “High-functioning sociopath” was just there as a clapback to Anderson then as something gangster to say before Sherlock shot Magnusson in the face. They never thought it all the way through. By way of comparison, Arthur Conan Doyle described Sherlock Holmes as a law unto himself, as the final arbiter. He was also called “masterful” – able to impose his will on others. When he chose, he had “an ingratiating quality” and could easily earn people’s trust. He was also an accomplished actor and master of disguise, who was able to fool even his dear Watson. There is a grandiose, manipulative psychology at work there that is knitted together with a deep sense of fair play and commitment to justice. While sometimes churlish and short-tempered, he could be profoundly empathetic. He also had nervous breakdowns, what we call major depressive episodes today, and used hard drugs to self-medicate. Sherlock Holmes’s psychology is full of fascinating contradictions. Everything Moftiss needed was in the original text, but they never got beneath the surface. So, while they’ve hit on some of these traits, they’ve never been fully integrated into a complete character because I just don’t think they’ve made the effort to understand mental illness and related drug abuse. There’s actually an interview of Steven Moffat describing Sherlock as “clinically insane”. The fundamental misunderstanding of what that means is why The Final Problem ultimately failed.
The appearance of the evil, secret sister telegraphed that we were heading into telenovela territory, and I wasn’t surprised by the contrivance of the Maze of Moral Abyss, all those macabre labours for Sherlock, John and Mycroft to perform – a steroidal re-hash of The Great Game. It was like something out of a 90s action film – The Rock meets Die Hard With a Vengeance, and I watched it as such. I half expected Bruce Willis or some other 90s throwback to come bounding in, armed to the teeth, start flinging grenades and just command them to shoot their way out. Even so, The Final Problem was the best of the three episodes this season – at least them spending nearly the entire episode at Sherrinford meant that it was cohesive tonally. I still don’t quite know what to make of them choosing to ground the entire plot – all those games, all those deaths – in Eurus’s cry for help. It is possible to humanise a psychopath within the constraints of their diagnosis. They have inner lives that aren’t limited to the monstrous, but they’re not like us – the emo play is always a loser – you can only out-manipulate them. They have an internally consistent view of the world, and once you understand the rules they follow, you can predict their behaviour and outflank them (it’s the basis of criminal profiling), but you have to empathise with them. Do you see how understanding all that not only helps with characterisation but buttresses the plotting and would have avoided the anti-climax of the ending? Answering the question: “What does Eurus really want?” then having Sherlock, John and Mycroft connive a way to give it to her would have been much more interesting.
The obvious pop cultural point of connection with The Final Problem is The Silence of the Lambs. We all were drawn to Hannibal Lecter – we couldn’t help liking him and felt conflicted about it. At the end of the film when Clarice says she knows he won’t come after her because he would consider it “rude” – now that’s interesting. What is Eurus’s “That would be rude”? My inability to answer that question gets to the heart of my problem with Sherlock – I don’t feel like I understand any of the characters or what is motivating them. Superimposing the tropes of storytelling onto the episodes and trying to read between the lines is the only way to make sense of them. They’ve been building to this Eurus confrontation for literally half a decade, and it still fell flat. They gave her whole backstory, and I still don’t understand her. By way of comparison, The Silence of the Lambs is 2 hours and 18 minutes long, and Anthony Hopkins appears on screen for only fifteen minutes, yet we all understood exactly who Hannibal Lecter was, what he was capable of, what he wanted and why. I’ll grant that The Silence of the Lambs is an unfairly high bar, but it provided a clear blueprint for the complex, charismatic, psychopathic serial killer pulling the strings. At the end of The Final Problem, Moftiss asks us to believe that the answer to Eurus’s “problem” was the love of her family. She obviously coveted Sherlock’s attention enough to murder poor Victor Trevor and set her elaborate stage, but anyone who understands even the basic contours of her psychology knows her shaking and crying in a burnt out house and needing a hug from her brother isn’t how that story ends.
I seriously wonder how much better Sherlock would have turned out if at some point in the last 5 years Moftiss had just googled Cluster B Personality Disorders and spent a few days boning up. They wouldn’t have made such a hash of Mary, and Eurus wouldn’t have been “Female Moriarty Who Lost Her Bottle in the End” – utterly anticlimactic. Or did they do the research, but they just couldn’t give a woman the minerals to be a proper villain?
To be clear: I wouldn’t have many of the complaints I’ve laid out if I hadn’t constantly been told Sherlock is the cleverest show on television. It’s not. It never was. The plotting of the first two seasons got it pretty close to being included in that conversation, but it’s no The Sopranos, no The Wire, no Mad Men. At this point, I’d say any workmanlike police procedural has it beat, hands down. Remember all those arguments about which was the better show, Elementary or Sherlock? Well, Elementary won. And that unsexy police procedural structure is why. The show has an identity, a solid foundation – it’s consistent. Moftiss can’t seem to decide what Sherlock is about, and that’s why so much of Season 4 felt like lurching in and out of a Jason Statham film, a Masterpiece Theatre offering and a Lifetime movie. At least The Final Problem managed to break that pattern. It was essentially the Sherlock Holmes origin story, and it took us back to the ancestral home, back to the first tragedy. Even just visually, we were clearly in Skyfall, which shows that Ralph Jones picked up exactly what Moftiss were putting down when he called them out on the “James Bonding” of Sherlock. (The literary beef that ensued was entertaining, and Jones bodied Gatiss with “The Second Letter” – the cipher in the cipher was the mortal wound.)
The argument about the Bonding of the franchise was really about a lack of depth – the flash of fight sequences over the substance of watching a precise but troubled mind at work – and Jones clearly made a valid point. Gatiss shooting back that Sherlock being a BAMF is canon didn’t address the heart of the criticism. I think the Daniel Craig Bond films are much better than anything on offer in post-Season 2 Sherlock. Even with all the camp, sneering baddies and always slightly ridiculous plots, they never got anywhere near anything as radioactively, intergalactically idiotic as “That was surgery.” In a Bond film, when someone is shot in the chest at close range, it’s TO SHOOT THEM IN THE CHEST SO THEY STOP EXISTING. If they manage to survive, it’s a bit of a turn-up. Guns and bullets don’t magically become surgical implements. Yet Sherlock used this physics-defying rebuke of basic human anatomy to convince intelligent, educated people to go along with the rehabilitation of Mary Watson (why they chose to make her silly storyline so important is baffling). They then doubled down on that narrative in The Six Thatchers, piling on a barrage of action that was essentially extraneous to the story. All to get us to the moment in the aquarium where Mary dives in front of a bullet to save Sherlock, who for some unfathomable reason decided to talk over any attempts to pacify Norbury and all but commanded her to shoot him. Then Mary was kind of a ghost but not really. Then they introduced a long-lost evil sister and an island prison. Do all that if you want; just don’t insult my intelligence by smugly telling me it’s clever then hide behind Arthur Conan Doyle’s skirts when you get called out on it. If from the beginning Moftiss had just owned up to having wanted to write a glossy, slightly absurd, mainstream actioner with soliloquizing villains, I would have gladly gone along with it. But I’ve continuously been told I’m watching The Usual Suspects or some other complex thriller with a sense of humour when it’s clear I’m watching Bad Boys 2 with British accents. Again: that’s fine in the name of pure entertainment; just know that insisting it’s clever feels like a straight-up troll. At some point all the cognitive dissonance had to become too much to bear.
So what’s the result of all this?
The fanfiction is better.
Even relatively inexperienced fanfic writers with a limited set of tools at least attempted to flesh out the characters and give them backstories and lives, fully formed personalities. It didn’t always work, but the effort was appreciated. The superstars of the genre used the hiatus to write stories that surpassed anything Moftiss gave us in Season 4, particularly in terms of character development. When characters’ motivations drive the plot, the story is not only more cohesive narratively, it’s more engaging and lasting because all the shocks and gasps are earned and move beyond cheap manipulation for the sake of entertainment. At the heart of the narrative success of the top-tier fanfiction is empathy. The writers got inside the characters’ heads and asked, “Who are these people? Where are they from? What experiences shaped them? What do they want? What are they afraid of? Whom do they love?” Moftiss seemed to reverse engineer everyone’s behaviour and emotional reactions by working backwards from the plot – everyone is just there to be manipulated, to be made to speak or act because the plot demands it, so those questions can’t really be answered. That labyrinth Eurus runs Sherlock, John and Mycroft through is a microcosm of the entire franchise. If I didn’t read fanfiction, maybe I could have gone along for the ride with Moftiss, but I knew there were fully realised characters out there whose hurt wasn’t manufactured, whose choices mattered beyond setting up a gag or a plot twist, who were protagonists in their own lives no matter how small their roles were.
Not even Sherlock escapes this poor treatment.
Here’s what exactly none of the plot-driven, post-Season 3 Sherlock fanfiction I’ve read failed to consider: Sherlock dealing with the fallout of having been captured and tortured in Serbia then being shot by Mary. Do you know why they all went there? Because being the victim of that kind of brutal violence tends to affect people psychologically, and those effects ripple into the lives of their friends and family. But in Moftiss Land, Sherlock being chained and beaten at the opening of the third season was just there so we could watch Mycroft crack wise while wearing a fur hat. Mary shooting him was meant to “Red Wedding” us, nothing more. There were no lingering physical or psychological effects from Sherlock having been tortured. It’s never come up again, not even as an aside. Really think about that and what it means about the quality of the writing, about the depth of the characterisation, about the empathy being deployed towards the eponymous hero. Sherlock is obviously the character Moftiss hold in the highest esteem, but Season 3 proved Sherlock is just a prop to them – their most beloved prop but still just a thing, a toy. The only real narrative through lines in Sherlock are the twists, and they’re the only elements that aren’t played right on the surface. Everything else is meant to be taken at face value. There is no subtlety, no subtext. There are Easter eggs and other markers laid down mostly for plot payoffs – a puzzle to solve – but no emotional depth, no narrative consistency. Sherlock is and always has been elementary – there were just too few episodes for most of us to suss it out sooner.
A few people saw through all the flash of Sherlock from the very beginning, and I tip my hat to them for being far more perceptive than I. (If they’re running around being insufferable and shouting, “I told you so!” they’ve more than earned the right.) The first two seasons were a fresh, shiny new take on the somewhat musty image of the great detective, and we all got to watch Benedict Cumberbatch take command and come into his own. But the real reason those early episodes were of such a higher quality was the low budgets: they handcuffed Moftiss. They couldn’t get all the helicopters, Aston Martins and rappelling super soldiers on their juvenile wish list, so the plot twists actually had to be interesting not just turned up to eleven. We all mistakenly assumed that character development that would match the level of the plotting would come later. What those early critics of Sherlock understood (and what has come to pass) was that the reverse would happen: the plotting would sink to meet the level of the poor characterisation. What most of us took for slight faux pas we could overlook, they realised were portents of the slide in quality we’ve all witnessed. They knew Moftiss weren’t to be trusted to dock the ship, and they were absolutely right. Once Moftiss were truly given free rein, the true heart of Sherlock was revealed, and it’s just confused but lacks the self-awareness to realise or do anything about it.
Being “the smart kids” is part of the hardcore Sherlock fandom’s identity, and I don’t see many of them being able to admit that Moftiss bamboozled them. (We all got took, guys.) The capricious characterisation, careening plot and disjointed editing have thus far been interpreted as intentional, as Moftiss hiding the ball, as further evidence of their diabolical cleverness – all the incoherence taken as a collection of hidden clues to be thoroughly investigated. Even though Season 3 made it clear the story was spinning out of control and Season 4 has seen it hurl itself off a cliff (but only just miss smashing its head on the rocks), much of the earnest analysis will likely continue. Many of the casuals are in it for the slick deductions and probably embraced all the high-octane thrills. (There will be an inevitable backlash, though – you can’t fool all the people all the time.) The excellent ratings of Season 4 mean the bean counters will want a Season 5, or at the very least more Christmas Specials. Enough of the audience is probably still on board to justify it financially. I can only hope Benedict Cumberbatch and Martin Freeman have enough sense to withhold their participation. The Final Problem wasn’t the unmitigated disaster I was expecting, but everything from Season 3 onwards has made it clear the show can’t live up to its early potential and that the problems with the storytelling are baked in. So, it’s best this latest Sherlock Holmes incarnation just come to a close before it becomes a career-devouring black hole.
Thank goodness the fanfiction provides someplace the characters can live on.
Fics to Cleanse the Palate
TRUTH MAY VARY by @amalnahurriyeh
Seven years after Sherlock's death, John's life is normal.
And then it isn't.
I don’t usually rec incomplete work, but this is close enough to being done to be satisfying. If Season 3 onward had shown even a fraction of the emotional maturity of this story, we would be in a very different place.
Read on AO3.
STRAIGHT BOY PAIN by @glenmoresparks
Sherlock is in pain. Billy Kinkaid, the Camden garrotter and best man Sherlock knows, diagnoses it. Ademar Silver, a male prostitute in south London, attempts to treat it. Lestrade, kindly Detective Inspector of New Scotland Yard, doesn’t notice it. Eventually, John Watson, healer and registered medical doctor, cures it.
And a beautician called Penny paints Sherlock’s toenails.
Read on AO3.
FAN MAIL by @scullyseviltwin
“WatsonChick143 has been rather maniacal in her commenting as of late... she’s left comments on everything you’ve posted John, something so obvious can’t have escaped even your attention."
A fan of John’s blog graduates into stalking.
Read on AO3.
THE YELLOW POPPIES by @silentauroriamthereal
Sherlock is threatened and assaulted in the hospital immediately after having been shot in the heart, first by Mary, then by Magnussen. As he recovers at Baker Street with John and plans the attack on Appledore with Mycroft, he fights to work through the trauma caused by these two visits. Set during His Last Vow.
Read on AO3.
And in an act of shameless self-promotion:
BEFORE HOLMES MET WATSON by Meeeeeeeeeeeeee!
What does it mean to be a detective with no cases to solve? Sherlock Holmes tries not to ponder this question as he distracts himself from his professional failings with bare-knuckle boxing at an underground fight club and vials of cocaine and morphine. John Watson spends his days in an operating theatre on an Army base in Afghanistan, doing his best to patch up the wounded and failing more often than he'd like. The dark, violent worlds in which both men choose to live complicate their romantic lives and cause them terrible suffering but set them on paths that are destined to cross.
Read on Wattpad or Tablo OR download the Ebook on my website.
I’m always looking for recs, so PLEASE ADD A FIC YOU THINK ISN’T GETTING ENOUGH LOVE.
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What is it to grow up with an autoimmune disease?
We are used to older people getting ill. Ill to the point of not being able to function like everybody else, when your body is tired even before you are fully awake at the beginning of the day and is already screaming for help before noon. But you know what, children get sick like that too. I was diagnosed with Sjögren Syndrome when I was nine, but was sick for about two years prior to the diagnosis and have been suffering from the rheumatic aspects of it since I was five years old. My parents did everything they could, they even took me to the expensive doctor that treated old people with arthritis just to hear her say that what I had was “growth pain”. After a while everybody thought I was faking it, lying to get attention (my sister was two years old at the time and that was what everyone thought was making me lie). But I knew. I was the one feeling as if my body was decomposing. Everyone else was normal at school, ran and played as kids do except me. Then I got mumps, as you do at that age. And a month later I got it again, and then again, and again. As you know that is not normal, but nobody could find a reason for it other than that of me being a very unlucky child susceptible to multiple occurrences of mumps. After two years, a lot of pain and difficulty handling my appearance (try to have that swollen face mumps gives you for months and you will understand that) someone decided to cut into my lower lip, get some glands in there and look them up. Turns out I did not have mumps (well, I did, but only the first time just like everyone else) but a autoimmune disease that was attacking my salivary glands and that was the real problem. The disease also had the rheumatic effect, which explained my constant pain. But, fun fact, Sjögren rarely happens upon such a young person. I won the genetic lottery, but the award was really not that great. The treatment consisted in immunosupression with medication that not only made me sick, but also was photo responsive, so I had to stay out of the sun unless I wanted all sorts of weird marks on my skin. So I, a child that loved going to the beach or playing while my father washed the car had to start living, quite literally, in the shadows. I was hospitalized due to infections my body could not control and that would be otherwise quite easily managed by a healthy immune system, I got bullied for always wearing long sleeves and trousers even on the hot summer of Brazil, or for my “sick person” colored skin, or for how skinny I was. I would not eat properly, because my stomach suffered with the medicine and eating made it worst. But then, at fifteen, the disease retreated and apparently I was ok. I still had rheumatic problems, my eyes where almost always dry (the disease attacks lacrimal glands too) and colors that are too similar cannot be distinguished by my eyes as the medication got deposited on them and made me loose some of that fine differentiation of colors, but other than that I was great! Got through school, entered university and moved out of my parents house to leave alone in another city. Had a boyfriend and everything seemed like it was going to be ok. Maybe I had been misdiagnosed and it was just something that passed. Then my boyfriend started being really abusive, I got depressed and entered a spiral that could have ended badly. Got sick again, autoimmune diseases have a strong correlation to ones mental status. At the end of the tunnel came a light in the form of and exchange program. One year abroad, studying what I was passionate about. Boyfriend tried to make me stay, said I was leaving him and all those things manipulative and abusive partners will say to make you guilty of doing something. I went anyway, and he cheated on me before a fortnight was passed. I broke up with him but he tormented me the whole year, threatening that he would go after me or that he would do something to himself. I got worse, and it was terrifying as I was in a different country, miles away from my family. I needed my mom to shush me to sleep through my fevers, telling me it would be ok, like she used to when I was little. Came back to Brazil, got medication again as my Sjögren was really flaring up again. I had a gland that had gave up after all those years swelling and would not come back to its normal size. My rheumatologist told me to take it out as it could calcify and pose a problem later. Turns out it was a lymphoma. Lymphoma are fairly common in Sjögren patients, but than again, Sjögren patients normally have 40 years or more. It was the scariest time of my life. My fiance, who was then my boyfriend of less then a year, thankfully is a much more controlled and hopeful person than I am. He held me, he helped me, he was a true safe spot for me. As my parents live in another city he had to put up with my mood swings, my despair and my depression through everything. The lymphoma was treated, but the stress it caused put me on a real bad flare up of the syndrome. It was my final year at university and I had a lot to do, but almost everyone was patient and kind and understood my situation. Everyone but my supervisor. Mind you, she knew me for about five years and the first thing I told her when she interviewed me was that I had this problem and that it was extremely unpredictable. That did not stop her treating me as if I was lying or making up excuses not to go to work (even though I did everything I had to do, even if it was taking me less time to do it). It is hard to be treated this way, and I know when people think this of me. We do not always get signs of the pain, the extreme lack of energy, the fevers or anything that can come up from our illness. One day I am great, and then the next I wake up and I am not able to get out of bed, because everything hurts. I am not a liar and I am not useless. I am very productive, but I have my own pace and my own limitations, which I am learning to live with. When you are older, even if people really do think you are making up excuses they will not treat you badly, out of respect. When you are a young person struggling with something as disruptive and difficult as this you face disdain, you face a lack of confidence in your capabilities and an immense barrier is built in front of you, blocking your way to your objectives and dreams. I may have to stop at least ten times, but I will climb that fucking barrier and get to my place in the sun. I owe that to my parents, to my family, to my fiance and, most importantly, to myself. I grew up discredited by almost everyone, so I will make the world see my own worth. Life is hard as it is, with everything in your favor. I will get those sour lemons life gave me and make a delicious lemonade.
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'It's taken me three years to get my period back'
'It's taken me three years to get my period back'
Jessica Evans, 32, has spent the last three years on a journey to recover her period after suffering from hypothalamic amenorrhea – a condition where your menstruation cycle stops due to increased stress that usually comes from a combination of over-exercising and under-eating. Here’s her story:
I always had this issue of thinking I was fat. It was just in me. I had these ridiculous expectations that I needed to look or be a certain way. Literally from the age of five, I remember looking at a photo, and thinking; ‘I look so fat, my legs look so fat.’
I hid it a lot. People knew I had always struggled with insecurities but I never looked sick or had the telltale signs of an eating disorder so I thought no one really worried. Little did I know my friends and family were concerned for years.
After years and years of this, I was quite vulnerable to particular exercise routines and particular ways of eating. So it was easy for me to fall into a trap of obsession.
The trap came when my boyfriend Craig and I had moved to Sydney. It was a perfect storm – I instantly felt the pressure to look and act a certain way. I also worked as a buyer in the fashion industry so had a high-pressure job and was surrounded by beautiful woman who were high naked most of the time. And, to be honest, I didn’t make a lot of friends.
I BECAME OBSESSED WITH BEING THIN
I joined a gym, focussing all my time to high-intensity training, and worked out a hell of a lot. I also ate less than 1200 calories a day. I let it go on for so long because I was addicted and everyone was commenting on how great I looked, so I the cycle continued.
I probably thought I looked great but deep inside I knew the obsession was eating me away. I didn’t have a sex drive. I looked like a child. In fact, for a long time, Craig didn’t even see my body.
I lost my period but it wasn’t until about six months without it that I thought, ‘This isn’t normal. I should probably see a doctor.’
I had all the tests and, unfortunately, the doctor misdiagnosed me with polycystic ovary syndrome (PCOS) – which is common in hypothalamic amenorrhea. I was told that ‘You need to watch what you eat – control your diet and be sure to exercise’, which was actually the worst thing for my health.
Finally, Craig and I decided to move back to Melbourne. The obsession, however, didn’t go away. I ended up pretty sick. I was hospitalised because my gallbladder was attacking me. My body was basically shutting down. And that’s when I found out I was Coeliac.
This diagnosis resulted in me eating as little as possible. I lived on long blacks. It was bad – really bad.
After the whole episode, I continued working out and eating nothing because we had our wedding coming up. I was eating about 800 calories a day at this point. So, of course, I wasn’t getting my period. I wasn’t fuelling my body. I also lied to everyone and anyone about what I was consuming verse how much I was working out. I was running in secret at night and eating less and less each day.
I was also so strict and regimented. I’d be like ‘I can’t drink this weekend because I might put on weight’. For my birthday I had organised a night out but I thought I had put on weight, so I cancelled it because I didn’t want my friends to see me.
MY CATALYST FOR CHANGE
But then something clicked. After we got married I all of a sudden was filled with this confidence and felt that with Craig by my side I could do anything.
I also wanted a baby.
We’d been to a fertility specialist and I knew that if I didn’t get my period back we’d have to have injections (and I might still have to) and then timed sex – and I just didn’t want that.
I was so sick of hating myself. I was sick of waking up and looking in the mirror and thinking I was fat. I wanted to live again and to grow someone to live. I needed to turn my life around – I set myself a mission: get your period back.
ACTION PLAN
An old friend of mine Chris Cannon owns a gym, called Life Hub based in Moorabbin, so I decided to get in touch and sign up. Thinking at the time I would go in and lose more weight – this was to be my new plan! Shocked with what I’d put my body through, he sat me down and explained just what my body actually required to sustain all the exercise I was doing. He was incredible. He understands bodies, the science, and what we require as women to thrive from a mind, body, spirit point of view.
He shook me out of this notion of thinking I’m fat and that I need to eat as little as possible and workout like a crazy woman to be alive.
He put me on this program which saw me eating triple what I had been eating and I was still in a deficient.
I remember turning to him in the first month and saying ‘I feel happy’ – and I hadn’t felt happy in three years. I actually laughed every day, my hair was starting to grow back – and this was just after a month.
He was with me the whole step of the way because what happens when you start eating carbs and working out less is that you put on weight. And that’s what my body needed. It needed to be nourished. It needed to survive. Chris changed my life. I don’t think he knows the true value he has had on my life.
I had to explain to people what was going to happen and say my body is going to go from looking like this to I don’t know what.
I’m now a size 10-12. And not one person has said to me ‘You’ve put on weight’. They have commented on how good and happy I look.
GETTING MY PERIOD BACK
We went on our honeymoon in April this year and I ate and drunk whatever. On returning, I knew I needed to cut out more of my workouts, because I’d been eating more food and I’d gained lots of weight but I still didn’t have my period. I cut out all high intensity sessions, I just lifted weights and that was it.
It got to four weeks and I realised I needed to give my body more than what I was doing.
I stumbled across the Facebook group ‘No Periods Now What’ – it was life changing to hear the stories of many women who had gone through what I was going through.
The book, which this community is based on, suggested cutting out all workouts and eating 2500 calories a day. So the eating side was easy for me but cutting out all the exercise was difficult. I didn’t know how I’d do it. I set a date and LITERALLY DID NOTHING.
Four weeks later, I got my first recovery period.
The best day of my life was when I married Craig, the second best day was then. I woke up the day before and things were happening with my body that I hadn’t experienced in three years. Things like cervical mucus – that excited me. My nipples hurt. It was like I was getting my period for the first time but I was obviously more in tune with my body then when I was 12.
I woke up, went to the bathroom and just ran out to Craig screaming. ‘I got my period’. We both just cried and cried and cried. I finally accepted my body and my body accepted me back.
MOVING BEYOND WEIGHT
At my lowest point, I was about 49kg and I’ve put on 20kg or maybe more – and I don’t care.
My body has been beaten for years so if this is the body weight it is comfortable with, so be it.
In the last two months, I’ve been on maybe two walks and I now eat all the food and drink all the wine. I can’t explain what a completely different person I am – eating carbs and not feeling guilty and drinking on Tuesday night – just because I can.
Finally. I respect my body and it respects me. It’s life-changing.
I’ve now had two recovery periods 38 days apart – which is incredible. I want to give my body time to adjust. I want to experience every pain and then I can work out what’s normal for me and my body before I head back to the fertility specialist. I’m appreciating it all.
The happiest outcome will be when I can fall pregnant naturally.
It’s been one helluva journey, and I’m still on it because there are days when I don’t understand this new womanly body I’m in and I wonder why my period is taking so long. It is getting easier and, for now, I’ll have that burger with a side of chips because I’m making up for lost time.
If you or someone you know is going through a similar issue, but sure to reach out to a healthcare professional.
For more on this topic, a doctor weighs in on why your period could have stopped. Plus, insta star Caroline Groth reveals just what she did to get her period back.
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Confessions
A little over a year ago right after my sister passed I was not doing well. Anyone that knows me knows I don’t like to ask for help because it fills me with guilt because the environment I grew up in. I decided to get help. Shortly after I was diagnosed with Bpd. Honestly it wasn’t the first time I was told I had it. I remember doctor Suarez at C.A.G (a residential treatment center I was in for a year during my 3rd run with cps) I remember being fifteen and looking at her like she was crazy. I thought it was similar to having multiple personalities so I blew her off and pretty much forgot about it. But the second time after my sister died I actually looked into it. Everything I read made me cry for the most part I recognized all the symptoms in myself and I read all the awful things people had to say about people with Bpd. It was heartbreaking I seriously felt like a monster and I sat there and thought about ways I may have unintentionally hurt people I cared about. I told one of my friends at first. As I read more on it (I some how managed to miss all the good post) I came across an article about moodswings caused by adults having adhd left untreated. I had just read a woman’s article on getting ptsd from being in a relationship with someone who has Bpd. I was so ashamed of my illness and afraid of my close friends seeing me as a monster I decided to lie. I went back and told my friend guess what I was misdiagnosed I told her I have adhd ontop of my depression and anxiety. I thought maybe that if I lied and kept a distance from everything and everyone It would be ok. I was so afraid of hurting my loved ones, being seen as a monster, being that friend that’s to exhausting to be around I hid it from everyone and just started becoming more of a recluse and even swore off dating cause I could never ask someone to deal with this even I find myself exhausting. Shortly after I started seeing a specialist in Bpd and DBT. As I began DBT I soon totalled my car and no longer could go because it was on the other side of town and taking uber or lyft was too much and I’m terrified of the VIA bus. So I began an online Dbt I felt like I was making progress I joined a soft ball team I slowly started going out I was doing so well. But then some really fucked up shit happened with my bio mother and right around that time my life time fp of all fps came back into my life. I was on cloud nine she would text me frequently and it was amazing it was the first time in a long time that I thought maybe I am not to exhausting to be loved maybe I to even with all this shit deserved to be loved ( like an idiot I thought her being back in my life was a sign) but like all good things in my life this did not last. (She doesn’t know she’s my fp or about the Bpd I’ve only told her about my anxiety and depression) My Bpd seemed like it was going into over drive with everything it ended with me feeling the need to push everything and everyone away. One friend blows me off everytime I try to hang out and proceeds to explain how she can only stand certain friends and people for so long so she does this and this( the whole time I am sitting there listening to her explanation and thinking of everytime shes done that to me and my minds telling me I’m the exhausting friend that’s why she doesn’t come around she hates me. No wonder she needs to meet new friends and is replacing you. But can you honestly blame her imagine if she really knew how exhausting you were she would leave she’d never talk to you again you’re toxic you should cut her out before she finally leaves and never talks to you again. I literally cried for almost an hour during my my bubble bath after she dropped me off at my house). Another abandoned me in a really fucked up situation so I split and the next day she tried to talk to me and I had a hell of an angry out burst. After a while I realized what I had done the guilt kicked in and I felt awful so I texted her she didn’t talk to me for almost two weeks. When we finally did talk I Started to try and explain but her response was I have anxiety too but I don’t treat people I care about like that. You can control it you choose not to and you have to try harder bud I control mine all the time she then told me I’m on my second strike next time man you’re gonna lose a friend you have one more chance(worst thing to tell someone with Bpd). Well she lost a friend that night she don’t know it but she did. I will save her the trouble of a third strike because I know it will happen again.Her word set in motion a downwards spiral I’m still trying to over come. I am seriously at the point where I just want to cut everyone out of my life my mind keeps telling me I should telling me I’m a awful person. Don’t bother coming clean and telling them the truth no one really believes in Bpd. You know they don’t care enough to try and understand if you tell them it will become the excuse they have been looking for to leave and never talk to you again they only pretend to be your friend because they feel bad for you and all the shit you’ve been through just do it save them the time cut them out of your life. This is the kind of shit that plagues my mind. I am told all the time you have a choice to control your anxiety and you chose not to your angrer, your depression your just not trying hard enough. Maybe it’s my fault for not telling them about my Bpd but honestly if this is their reaction can anyone blame me? I can picture it now as I’m trying to explain what’s going through my head or talk about why I feel the way I feel (b your being manipulative your trying to guilt trip me thats manipulative) I feel like this would be their response like I seriously can not talk about why I’m mad at people or feeling the way I am with out them disregarding me or telling me I’m guilt tripping them. I don’t even want to imagine how it would be if I told them about my Bpd diagnosis. My only saving grace is my best friend in Houston realizing that I cant keep waking up every morning wishing something awful would happen to me so that I can finally have peace (being me is so exhausting and I am tired). My breaking point was when I started thinking about the day my bio mom showed up at my apartment recently. I sat there on my bed and I though about if I had answered the door I would be free and everyone’s lives would be better for it maybe she was right it should have been me and not my little sister.with where my minds been I seriously understand why 10% of people with Bpd choose the route they do.Thankfully my best friend answered she’s probly the only person I can say always text back and answers my calls if I pick up the phone and say I need you now she’d get in her car and drive the three hours no questions asked. I had to talk her out of coming down this weekend. She helped me sort everything out and it was nice telling someone about my Bpd and being shown nothing but understanding, compassion, and support. Talking with her made me feel like I’m not a monster she reminded me of the type of person I am. Who I am is separate my Bpd is not me.(I seriously don’t deserve a friend like her)I think I’m finally going to quit keeping this from my loved ones. With luck maybe one more person will be the same as my bestfriend in Houston. (I needed to write this out wish luck)
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Anxiety
Anxiety is awful. It’s been more prevalent in my life than anything lately so I wanted to blog about it. It can be awful but not just for those who suffer from it; for our family and friends, significant others, coworkers, etc as well. It truly invades every aspect of our lives. From over thinking situations and small decisions, to interacting at work and sometimes trying to get through everyday tasks like grocery shopping. Things that should be “easy” or simple aren’t. It can be discouraging watching other people do things and get through their days with such a sense of normalcy. What is normal anymore anyways?
Everyone who suffers from it has varying degrees of anxiety. I didn’t use to have it so badly. In fact up until a few years ago, panic attacks weren’t even something I ever thought I would personally experience. It used to just be this sense of anxiousness if I didn’t get something done right away or correctly. Or even if someone else didn’t do something the way I thought it absolutely had to be done. This can manifest in relationships and come off as controlling, slightly OCD (sometimes can even be misdiagnosed) I have always been a super organized person, which can be helpful and even positive if I utilize those habits correctly.....sometimes it gets out of hand. I make lists or take notes and have to document everything. (another reason I started blogging again) Don’t get me wrong, it’s good to keep records, it’s good to be prepared, but it is all about finding a healthy balance and not becoming obsessive or panicking if one things goes wrong. I am starting to feel like mine is becoming more severe. For example I completely broke down at the store last month because I couldn’t find my receipt. Something that to the average person would probably make me look like a lunatic.(I’m sure I did) I am someone who keeps good records so it really irritated me that I didn’t have my receipt. Of course the issue was deeper than a piece of paper, I was super disappointed in myself for not being prepared. (Ever hear that phrase, “We are our own worst critic?”) Well people with anxiety are truly the hardest on themselves) We wind up holding others to higher standards as well. Anyways...It took a lot of time (and crying) but ultimately a reflection back on that day (and on the video posted on social media--- thanks Jessica) for me to realize what the root of the issue was.
I’ve been fortunate enough to have an education on mental illnesses, been fortunate (and unfortunate) enough to have seen it up close all my life. This only helps because while I can’t really treat myself for it or anything, I am at the very least aware of it and able to be a bit conscious of the signs of my anxiety; able to reflect back on the past to see how it has effected my relationships and interactions, I’ve even been able to identify some of my triggers. But knowing about it is only half the battle. I used to be able to talk myself out of the irrational thoughts that come with it, or relax enough to work through whatever stress-er was causing my panic. Then having to deal with others’ reactions to the outward signs is a whole other battle. Trying to explain anxiety (especially to someone who doesn’t have it, has never had it or who has not even known anyone else who had it) to anyone is extremely difficult. It is so much more than just a sense of worry or fear. Much more than simply being afraid.
It’s the thoughts that are completely irrational, the hours spent over-analyzing a situation, replaying moments in your mind wondering what you could've done differently, being stuck mentally and sometimes quite crippling physically as well in one place, not to mention the physiological aspects. Our bodies literally go into fight or flight mode and if we don’t have good coping skills this happens too often throughout the day and night. Insomnia is one of the worst symptoms. Energy levels are all over the place which of course throws our whole routine off because sleep is so very important for the mind and body. Paranoia is another, especially if you can’t recognize and combat the irrational thoughts and feelings. Even when you do have good coping skills and tools, sometimes it’s hard to actually use them. Not all of the aromatherapy or deep breathing in the world is enough in moments of panic. And counting to ten is not even helpful. This is why it is so important to catch the triggers before they happen and to know how to think through the situation when you’re experiencing anxiety before the panic sets in. Loved ones this is where you come in because comfort and support from others is our greatest defense. Even if you don’t fully understand anxiety you can still be very valuable and helpful to those of us who suffer from it. Tomorrow I’ll write about how to be there for your loved ones who suffer from it. The Do’s and Dont’s and everything in between including how to care for yourself. The major and most important thing is to not judge, not label, and be patient and calm. Trying to empathize is helpful because one of the worst things you can do is to say something like “just deal with it” or “get over it” or calling them dramatic or crazy. Trust me, we do not want to feel like this, We do not want to be stressed out all the time or over think everything it is truly exhausting. I wouldn’t wish anxiety on my worst enemy. Stop the stigma. Hope this helps....that’s all for today PS Don’t forget to set your clocks forward...Spring has sprung!
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