(This post was originally written on 3/31/2017, a few days after the loss of Amy Bleuel . It seems fitting to me to repost it in remembrance of her.)
****WARNING–THIS POST MAY BE TRIGGERING IF YOU HAVE SELF HARMED, CURRENTLY SELF HARM, OR ARE A SUICIDE ATTEMPT SURVIVOR.****
My heart has been heavy the past few days since the report of mental health advocate Amy Bleuel’s death was released.
For those who don’t know who Amy was, she pioneered a network of peer support via her non-profit organization, Project Semicolon, founded in 2013. Project Semicolon exploded into social media consciousness in 2015 when pictures of semicolon tattoos inspired by the Project took off and started spreading like wildfire, but I was a follower of the Project since 2014 when I came across a photo on Facebook dedicated to Semicolon Day:
(The above photo is from 2015, but the one I came across was the same or similar.)
Project Semicolon defines itself as “dedicated to presenting hope and love for those who are struggling with mental illness, suicide, addiction and self-injury”, and “exists to encourage, love and inspire.” While they are devoted to achieving lower suicide rates in the U.S. and worldwide, they do not themselves practice psychiatry, and the staff are not trained mental health professionals. Rather, they recommend contacting emergency hotlines (e.g. 9-1-1 or the National Suicide Prevention Lifeline) or seeking mental health professionals.
I can’t stress enough how important the Project was to me as someone who has a past history of self harm, who has struggled with depression and anxiety, and as a suicide attempt survivor and the mother of a suicide attempt survivor.
Amy made it okay to talk about these things more openly for many and touched so many lives with a small punctuation mark. By nature, those who self harm tend to hide what they do. There are differing reasons and methods of self harm that I won’t go into here, but the nature of the stigma has prevented many from seeking help or having hope for recovery. Suicide attempts often have similar stigmas attached, and many survivors, suicide loss survivors, or those considering suicide tend to feel alone even in the mental health community. Amy gave us a place there.
As an advocate for mental health as well as chronic illness, I admired and continue to admire Amy and her message of inclusion and support.
Amy was a suicide attempt survivor who struggled with depression and trauma PTSD herself, and whose father died by suicide. As many know, survived suicide attempts increase the risk of death by suicide in an individual. Yesterday, it was indeed confirmed that Amy died by suicide.
People tend to think mental health advocates have the answers and have conquered, but we’re really still in the battle with them.
We’re navigating the same waters, but don’t necessarily have a lighthouse in sight, a life jacket, or even know how to swim in uncharted waters…we just know we’re called to help others.
Sometimes in helping others, our own self care takes a backseat; sometimes because it’s easier to focus others’ problems, sometimes because we get caught up in what we do, and other times because we just don’t see that we have that same safety net we try to be.
When an advocate dies by suicide, people wonder what will happen to those they reached out to.
Will they feel “cheated” or abandoned?
Will they lose hope and give up?
Such a loss does not invalidate the message or their work. It makes it more important.
Rest in peace, Amy Bleuel. Your story is still not over, and neither is your legacy.
****WARNING: THIS POST MAY BE TRIGGERING IF YOU HAVE SELF HARMED, CURRENTLY SELF HARM, OR ARE A SUICIDE SURVIVOR.****
I don’t know a single person that doesn’t have at least one scar.
Large or small, prominent or barely noticeable, every scar has a story attached; sometimes one we remember firsthand and sometimes one told to us because we were too young to remember.
This post is a celebration of all we’ve lived with and struggled with and survived. Our scars are our story…written in flesh or carved in our minds.
– “That’s from the time I was chasing my sister on my bike and she stepped in front of me. I swerved on the gravel and the road bit my face. I refer to it as one of her two attempts to kill me. ( Kidding about her intention, not about how I refer to it. )” – me
This could be an example of one my daughter might tell:
– “This one is from an emergency appendectomy when I was 8. I got sick from the anesthesia, so they gave me Phenergan. Turns out I have a really bad reaction to it, my mom says I was ripping out my IVs and crawling over the bed rails until they had to give me something to make me sleep.”
My friends have scar stories of their own:
– “My beautiful battle scar on my upper right arm is still with me to this day! When I was 13 I was diagnosed with stage 3 Melanoma (skin cancer). The surgeons cut away the entire cancerous section including some of my muscle. The surgery itself was 8 hours. After months of more minor surgeries, stitches, Dr appointments, rehabilitation, and treatment I was in the clear, as in remission for 5 years.” – Abby
– “My favorite scar is from a c-section at 19. Frank Breach they called her. Her adoptive parents named her Alyssa. I like that name; I love her wherever she is.” – Ericka
Not all scars are physical or visible, but are still carried with us and remembered vividly in a way that affects us years later:
– “This one is from when I went to the ER for a severe Migraine attack. The doctor decided to give me Ketamine, also known by its street name, Special K. While rubbing his hands together and bouncing on his feet, he said to me in a giddy voice, “This will be fun!”
It was not fun. The walls moved around me and started closing in on me. The clock on the wall was making circular trips all around it. My bed felt like it was on violent waves of the sea, and I held on to the rail for dear life. My right leg disappeared. I couldn’t find it. Then I felt myself fading, until my consciousness was nothing but a small speck in my chest. I thought I was going to be snuffed out for good. I screamed and screamed for help, even though I couldn’t hear myself. The nurses ignored my complaints and asked if my Migraine was better. It wasn’t. Shortly after, they came back with a second dose and said, “This will help.”
It didn’t. They left me alone for 2 hours with my hallucinations and paranoia and then sent me out the door in a wheelchair.
My Migraine was still not better.” – Brianna
– “These are from years of mental and emotional abuse from my father. They aren’t all healed even now, 20+ years later.” – me
– “This one is from my father walking out on us.” – anonymous
– “My invisible scar is from being raped.” – anonymous
Some scars are visible, but not understood…often those who carry them try to keep them hidden because of reactions based on the stigma attached, rather than compassion.
– “Are you talking about physical scars or emotional/psychological scars as well? You could write a book on my psychological/emotional alone, but the physical one would be my body. I eat my feelings so it shouldn’t surprise me that I look like I do. There are a few others from when I was cutting myself but they are hidden really well. Another thing is since I have always researched any diagnosis and/or test result is I also research the treatments so when I was cutting myself I knew where not to cut. I was mindful of being able to hide them.” – Malinda
– “These are from years of self harm–for me, it was easier to deal with the physical pain than the emotional pain. Some are hidden, some aren’t; they are the days when the only thing that mattered was the physical pain to shield and distract me from emotional anguish.” – me
– “This one is from a suicide attempt.” – anonymous
– “I never hid my self harm scars. But people pretended not to notice because it was easier than admitting to themselves I needed help.” – anonymous
– “My scars are proof that I fought my demons and survived myself. They are a reminder of my struggles I’ve conquered.” – me
Sometimes scars are something that helps us relate to others or reminders that others are fighting battles we can’t always see. No matter which they are, our scars are part of us and of our story and can be used as a source of triumph over the things we’ve come through.
May your story be a tale of triumph and compassion.
I’ve heard some say disability benefits are unnecessary hand-outs for people who should just die off, and why should hard-working people foot the bill for people who are lazy, whose lives mean nothing?
The disability process itself mirrors these same sentiments – the 3-5 years (average) process for applying, fighting for, and receiving disability (SSI or SSDI) in the USA is by its nature a grueling process, with analysts hired to deny applicants not once, but twice (standard procedure), forcing the applicant to appeal their case twice over several months before a hearing is granted, which then takes years to schedule due to a shortage of judges. It is a process intended to force people to give up.
You usually have to be literally dying to be automatically granted disability in the USA.
This book is awesome. It’s like a chicken soup for the mind, interspersed with colorable doodles by the author and quotes.
(I normally don’t have the money to spend on new books–insert sad face–nor do I recommend them in my blog, but this was a gift from a friend and I love it!)
Last night my Tardive Dyskenisia was acting up something awful. I moved from bed to the couch so my leg twitches wouldn’t keep my guy awake, but I couldn’t sleep. My breathing felt…tight. I was restless.
Usually when that feeling takes root enough, I start feeling anxious, and last night was no exception…sitting down to color was an act of will, but I hoped it would help head off the panic attack that restless, trapped, anxious feeling sometimes brings on.
Within a half hour, I was engrossed and my annoying twitches were mostly ignorable as I concentrated on coloring and breathing slowly instead of panicky hyperventilating. I never got to sleep–after trying 3 times and starting to get worked up again, I gave up on the thought of it and went back to my coloring. I remembered I had some kids’ glitter paint from the days my grandspawn Keaton was a frequent visitor, and decided to add it as an accent…and voila! Perfection (almost–I did tweak the quote to something I felt was more fitting for me).
It’s totally going on my wall, to remind me that I have a decent tool to help calm myself and that it’s okay to be uniquely broken…or perfectly the same; whichever fits my day.
It may not help head off every attack (what does?) but each tool in my arsenal is one worth a shot. 💓
Be well, friends–or as well as you can. – Selena
#thatspoonielife #thatmigrainelife #thatchronicillnesslife #mylife #pain #depression #anxiety #chronicillnesssucks #chronicillness #chronicmigraine #migrainethuglife #invisibleillness #geneticdisorder #mentalillness #abusesurvivor #suicideattemptsurvivor #artist #poet #advocate #blogger #spoonie #DownTheRabbitHole #panicattacks #TardiveDyskenisia #trying #coloring #distraction
I published this over a year ago on The Mighty, but I’m feeling it today.
It’s funny how when you go back and read something, you either feel like you’ve grown or realize some things are an ongoing struggle…I noticed how one of the last paragraphs is very much what the beginning of a panic attack feels like.
Today is hard, but I’m trying.
Today, the physical pain of my illness is keeping me from moving much, and the depression I feel over that is a constant thorn in my side.
But I’m trying.
Some days are good, some are bad, and some are worse. Logically, I know this. I know this from experience. But somehow it doesn’t always make it easier.
It’s not the physical pain that’s the worst. It’s the mental and emotional pain that goes with it.
It’s not trying to get through the things that need doing; it’s trying not to do them that is the struggle. There is a counter piled with dirty dishes and we have no clean spoons. The cat litter needs changed. I have an appointment that needs to be rescheduled, but the thought of talking on the phone when my migraine is screaming means it won’t be done today.
I have limits that my body and my illness has set for a reason, I remind myself. Pushing past them is a very bad idea.
I know this… but I still feel the weight of the things that need doing like a physical pull. And fighting the guilt for not doing them exhausting.
But I’m trying.
I’m trying to smile at the people and things I love.
I’d rather be crying, or raging at my limits, or both. I’d rather be curled up under my blanket avoiding them, but I’ve learned that this isn’t good for me, either, because the depression that is sinking its greedy claws into me is just waiting to isolate me and make me feel alone and hopeless.
It’s hard to fight its whispers, but I’m trying.
Today it is hard to exist.
You’d think that it would be easy to just breathe, wouldn’t you? To just let it all go when the pain digs into my brain and even thinking is hard…but it isn’t. Just breathing feels like the hardest thing I’ve ever done, and thoughts are running through my brain like manic mice.
Existing is hard, but I’m trying.
I’m holding on to the world by the skin of my teeth today. I’m remembering that there are good days, even if I can’t see them. I’m reminding myself that I still do good things, even if today I don’t feel good enough.
So…finding out that TardiveDyskenisia isn’t all twitches and grimaces and restlessness…oh, my!
All the things MHMR ( mental health and mental retardation, a government low income service ) doesn’t tell you, which is a lot. If you’re low income, never kid yourself about how much these people can or will help you. It is not remotely on par with a psychiatrist or therapy (which they don’t offer). They’re short staffed always and consist of nurses and caseworkers. They don’t give comprehensive information or ask comprehensive questions.
I just found out that other unexplained symptoms (and the ones most likely to trigger my panic attacks, of all things ), could be TD. NEVER BROUGHT UP BY MHMR, NEVER CONNECTED TO TD BY THEM.
What do people who don’t research obsessively do? Just trust that the people taking care of them know things or care enough to connect dots?
This is impacting my ability to post…my hands don’t work right all the time.
I’ve had breathing issues lately…it usually gets me into a panic attaack that I can’t control.
It affects being able to OPEN MY MEDS…even with easy open tops.
It’s scary as hell.
(Update to Attention Seeking? If That’s What It Takes)
Panic Attacks…those ARE hell, right? Like a very special worse than Hell kind of hell?
I honestly can’t imagine anything more hellish than panic attacks at this very moment, although I’m sure something else will manage to bump them down my list at some point today–I’m nothing if not a plethora of health problems, kind of like those bags of assorted candies, only the ones no one likes; chronic daily migraine, depression, anxiety, this Not-Such-Fun new one called Tardive Dyskenesia…and those damned spawns of hell, panic attacks.
In my last post, our intrepid heroine (me) was definitely feeling far, far less than intrepid; she was wrung out and desperate, recuperating from a brutal beat-down by one of the most diabolical adversaries she’d ever faced…Panic Attack.
Panic Attack was a sneaky foe–striking when least expected and at random, sometimes using tactics of other foes to camouflage his approach; a feeling of general unease (borrowed from Anxiety), despondency that a specific situation or life in general would never improve (Depression’s usual expertise), the nagging, irritable, on-edge feeling and vague confusion often felt before a particularly nasty spike in Migraine pain…a few days of these always niggling at the mind was a fine way to remain unseen but to pave the way for Panic Attack’s sudden strike with the coup de grâce of his arsenal–MIND-NUMBING, RELENTLESS FEAR/TERROR (we’ll just refer to that as FEAR for short in the rest of the post…always in caps).
Sometimes, P.A. (Panic Attack) preferred to just drop the FEAR bomb right off the bat (why be predictable, after all? That’s just sloppy villainy) in a sudden and overwhelming attack designed to keep his victim reeling and off-balance.
No matter when or how P.A. attacked, the FEAR strike often had the effect of Increased heart rate, Chest pain, Inability to catch your breath, Dizziness, Tingling feelings, Intense feelings of anxiety. As an added bonus, the victim of a P.A. FEAR strike knows (either during or after the attack, or both) that this FEAR is not rational and they are not in real danger…which can weaken their mental state and make them fear they are going crazy.
Although our heroine was equipped with an Anxiety Shield,
anti-anxiety medication, information on methods to ground herself, and determination to best her foe, she had not yet been successful, and the onslaught of repeated attacks was creating a near-constant state of dread of when the next FEAR strike would come.
And for our heroine and many others who battle this enemy, the FEAR strikes brought yet another effect–a feeling of utter hopelessness while in the midst of a strike that it would never end, that they would never be able to best it, and that the only way to be free would be to give up…permanently.
Yes. Suicidal thoughts.
Perhaps the hardest effect to face, and to admit to others, as often those unable to control thoughts of suicide are treated as if they are thoughtless, selfish people who care nothing for their loved ones to even consider such a thing…sometimes unintentionally by people who mean well, who attempt to point out all they have to live for…and sometimes purposely by those who believe shaming a person will stop them from ‘acting selfishly’ and ‘only thinking of themselves.’
The fear of being berated, shamed, or having their pain invalidated as unimportant or unfounded sadly prevents many people who struggle deeply with these unwanted and intrusive suicidal thoughts from ever reaching out and seeking help, and can reinforce feelings that they are terrible people whose loved ones would be better off without them–tragically, some of those people may go on to attempt or complete suicide.
Our heroine has long maintained that those who reach out for help despite fears that the stigma and misunderstanding surrounding suicide and suicidal thoughts will cause them to be rejected and shamed are the bravest people there are.
And she believes this because she is a suicide attempt survivor…who did not ask for help, either before or after her attempt 20+ years ago, because her fears of being judged were too great.
She believes this because she knows exactly how hard and scary that is, and how long it took her to finally overcome it. “Sometimes one of the hardest things to do is to admit you need help and reach out for it. To do so anyway is courageous,” she often tells others.
And she has an idea…she thinks it might just be a good one; it may not completely defeat Panic Attack, or even halt his FEAR strikes, but maybe…just maybe…it could help keep him from defeating her.
But she’s going to need some assistance, and the nerve to ask for it.
And this time, she’s going to take that step–that scary, hard step that she didn’t take before. Because if ever there was a time to have the strength of her convictions, this is it.
And she did.
Before she could second guess herself, before she could let her fear stop her, she reached out to her friends, and hit the ‘post’ button…
Was there a possibility that this post would be interpreted as attention seeking? As being overly dramatic? As being selfish and self-centered?
Of course there was. She knew that because she would have thought it herself in the past, had she been the one reading it (which she isn’t proud to confess).
But she decided she could live with that judgment if it came…because this was her life.
Her life that she’d fought for alone too many times, in battles she’d never told and would always carry scars from; some on her body and some in her mind and heart. Because she was one of the lucky ones who had the chance to see all the things that could get better, and even if some didn’t, to know the things and hold the people that made the fight worth every minute to her.
Surprisingly, what came was an outpouring of support, love, and encouragement. Not everyone could sign on to help her test out her Panic Plan, but every single person who responded still helped. They may not have thought they were doing much, but it meant the world.
And for the moment, we’re going to leave our heroine and go back to the less heroic alter ego, me. But the moral of the lesson is this:
No matter how strong a hero/heroine is…sometimes they can’t fight every battle alone. Look at Thor–he’s a freaking god, but can’t get his brother under control without the Avengers. Iron Man is a tech genius, but his own creation, Ultron, went off the rails and without his team, could have caused even more devastation.
Sometimes in life’s battles, you just gotta have a little help from your friends. And there’s not anything wrong with that or with you for leaning on them.
It all evens out–because won’t you be there when they need you, too?
I’m so, so grateful for mine.
Now comes the fun of putting this plan it into effect. Really, I’m blessed I actually had enough friends step up that the burden will be lighter for everyone, as opposed to having a few taking the brunt of calls…no matter how much you care about someone, it can wear on you to be THE go-to. It’s hard to “see” (in quotation marks because they’re all over the US and we’ve never seen each other in person) someone you care about struggling; it’s painful and there’s no way to avoid that–lessons learned raising two kids with mental health disorders. You want to make it better, and sometimes you can’t.
As it stands, I have enough volunteers that if I had weekly attacks, most of them would get a turn once every 2 months. Not everyone is available 24/7, but when you have more than one to rely on chances are that SOMEONE will be reachable when you need help. A few are last resort volunteers–if no one else is available, they’ve pledged to take up the slack no matter when. Maybe half are estimating they can be there any time, day or night, others are better reachable at specific times of day.
As things get hammered out and tweaked, I’ll update on how it’s working out and what about it works or doesn’t.
Right now, it’s a huge weight lifted just to know I’m working on it…with an awesome support system by my side.
Some days I feel my life in a series screenshots…today is one.
Panic attack that I couldn’t get under control, fighting with myself until I crashed in exhaustion. I’ve never felt anything quite so terrible as they are (except maybe what spawned them?)…and I AM a control freak, especially when it comes to my body. I have to be able to be in control of it.
Life with chronic illness is an education in exactly the opposite of being in control of my body. It does things without my approval all the damn time. Do I really need my brain hijacking things, too?
Nope, but it doesn’t care.
Currently, my ability to deal with these sucks.
I finally put out an open call among my FB friends for any help dealing with these I can get. Being talked down in an earlier stage the best success I’ve found so far–my own grounding attempts are so hit and miss.
My idea is to have a list of people who are able and willing to help talk me down, and I’m open to suggestions on grounding myself, too. (I currently get mental health meds through MHMR–a program for the low income–but ours doesn’t do any sort of counseling. So asking for help there goes nowhere. I need coping skills, not just pharmaceuticals.)
Some folks will see it as attention seeking…and if wanting to not give up is attention seeking, I’ll wear that label. But mostly…I want people to know how real the struggle is.
It’s the height of irony to me that in the year of being completely untreated for my chronic daily migraine, I’ve had pieces about medication get published.
Why am I untreated? Well, it isn’t by choice. I found out during a renewal interview for medicaid benefits that I actually should never have been qualified for them to begin with…but had been receiving them for two years due to an agency error.
Yes, you read that correctly. Two years of treatment that I could never have afforded, including a specialist and botox–which happens to be the only treatment thus far that made a marginal difference–now gone. I was reassured by the supervisor I spoke to that since it wasn’t my fault, at least I wouldn’t be prosecuted for defrauding the government.
Well, thanks. What a relief.
But surprisingly, that was not and still is not my major concern. Not that not being prosecuted or responsible for paying back thousands in assistance isn’t a good thing, mind you…but the treatment that was giving me enough improvement to be functional a few days a month was and is gone.
Just like that. Gone.
It’s possibly the worst thing I’ve been through in the past few years, and if you’re wondering how terrible that could really be, I invite you to take on my chronic daily misery for a week. Really, I’ll gladly share.
Because when you’re not functional more days than you are even minimally functional, a few days makes a huge difference.
And money…well, in my experience that sometimes (often) makes ALL the difference often in whether one is functional, in what treatments we can try, and even in how we are judged for our illness and what we do for it.
Judgment of the chronically sick and disabled is alive and well, in case you thought it wasn’t in this more PC era.
We’re given the side-eye for what we may have done to “cause” our health issues (um…be born? Mine is ’caused’ by genetics, thanks) and what we’ve done/are doing/aren’t doing to treat our condition; from “OMG, you’re putting those prescribed toxins into your body? How can you do that?” to “Well, if you’re not going to try ____, you must want to stay sick,” as if a few minutes of Google confers a specialty doctorate in our disease.
Unfortunately, all those treatments and medications and doctor appointments take….*drum roll*….money. Doctors aren’t exactly lining up to take patients pro-bono, despite the number of non sick people who are certain I can find someone to “work with me” on cost or payments (see, the problem there is that assumes an income at all to “work with”).
And Medicaid, disability, and insurance through the ACA are not the catch all safety nets people assume they are.
Plenty of people who qualify for medicaid in one state would not in another, because adult Medicaid is not federally mandated. It’s up to the individual states what the cutoffs for qualifications are and which benefits are granted. Also, it’s very hard to qualify if you don’t have a minor child in your home and aren’t working at least 20 hours a week, unless you are disabled.
Disability…I don’t have much good to say there. Plenty of legitimately disabled folks can’t qualify for disability. For one thing, doctor records are one the main things needed to make a decision, and since I haven’t been to a doctor due to lack of money in a year, my appeals have denied on that basis DESPITE having a Game of Thrones series sized stack of paperwork from doctor visits alone on my initial application. Also, my illness isn’t considered disabling by and large. (Although I don’t know many people who can drive to work, much less work, with frequent vertigo, or aura, or crippling pain. Go figure.)
Insurance through the ACA…first, will there be an ACA if Republicans in Congress have their way? Second, you still have to pay for insurance through the marketplace.
Sigh. So that’s why I’m untreated. Fun times. (Not really. Why is that the expression for un-fun times, anyway?)
Having to explain this is pretty exhaustive, which is why I usually don’t–people who want to judge are going to regardless.
And why it’s kind of hilarious to me in a weird way that I have an article ABOUT MY LOVE/HATE RELATIONSHIP WITH MEDS published in Teen Vogue this month, via The Mighty, who originally published it…titled Please Stop Judging Me For Taking Pain Medication.
Does anyone not see the weird funny in that?
There’s also the fact I’m almost 50 and being published in a teen magazine, but I figure my coolness quotient has that covered. 😉
I’m still pretty thrilled about it (despite the disagreement over the title you can see in my screenshot which was resolved pretty quickly- thanks to The Mighty and Teen Vogue for being cool about that) , because I think it’s an important article. Hit up the link and check it out, and let me know what you think!