Category: gif

Freakout Friday: the problem with hope

Posted on by Grayson

I’ve had a couple of friends get picked on lately for this same view and I just don’t get it.

As I mentioned before, hope is a four-letter word for me (the bad kind, duh).

I want to elaborate on this, because it just keeps happening. First let me be clear – if hope works for you, awesome! I’m so happy for you and excited that you’ve found something that works well.

A lot of us, especially those who struggle with mental illness as well, can’t hold onto hope that same way. So the view that hope is eternal and crosses boundaries to help everyone is bullshit.

Sorry, but it is.

Hope is inactive. It leaves things up to others, whether that’s gods (prayers) or helpers. When we hope for a cure, we wish, but don’t act. Hope is wishy-washy. Hope is a go-to if we’re just trying to be polite, not genuine. Hope is passive, requiring no work and no acknowledgement of the dedication and tears and sweat that go into things. There is no timeline, no plan, no certainty that the task will ever be accomplished.

Belief, instead, is active. If I believe in something, I will throw my support behind it. I will do what I can to help that task get accomplished. It isn’t always focused on the positive. It’s an affirmation, a strength. With belief comes a degree of certainty. You may be wrong, but you believe in something.

Hope is impossible to maintain at all times.

Let’s be real here.

When I have been in so much pain I can’t see straight, hope doesn’t keep me going. Hoping that I feel better tomorrow doesn’t cut it when you’re dealing with certain pains and a lifelong, incurable disease. You know what does? The belief that the loved ones in my life need me and want me here does – that playing with my guinea pigs makes a difference in how they feel or helping my sister with her kids and her journey to healing from our horrible childhood or my niece tickled pink when she sees me on Skype or spending time with my close friends and us supporting each other or my husband holding me, telling me things WILL get better, or even just that he loves me.

Those things get me through, not a distant idea of hope or blind faith. Real concrete things that are in the here and now.

I believe a cure will come. I believe I will get better, and that belief is somewhat manifesting itself right now. I believe that I am different – I respond to meds or emotions or experiences differently than every person on this planet. I believe I am unique, as we all are.

None of those require ‘hope’ – let alone hope all the time.

When I was living with my mother and would get incredibly sick, I had to put on a happy face for others. I had to look my best or look like death – no in-between. I had to carry-on in the face of crap instead of taking time for myself.

Hope requires a similar covering-up of emotions, and I refuse to do that to make anyone comfortable, even myself.

Only choosing hope and not showing the negative, which isn’t necessarily what this is about but hear me out… It’s bad for those of us with invisible illnesses. We dress well and look happy to hide our illnesses like a prey animal, only to get upset when others don’t realize we’re sick.

Should they stop accusing others and deal with the fact that invisible illnesses exist? Duh. But we also need to stop always trying to cover up how we’re doing.

Happy smiling faces won’t raise awareness or get us funds for a cure.

Only talking about the real things we go through will do that.

Telling people to always choose hope is also ableist. I touched on that a bit at the beginning of the post, but let’s explore that connection between that and classism…

Did you know that 20% of adults in the United States have some type of mental illness? Many of those have multiple mental illnesses like yours truly. Those with physical chronic illnesses are more prone to mental illness due to the difficulties of dealing with their bodies. I think it can be assumed the rate is at the very least close to 50%.

There are also studies out there that certain illnesses like fibromyalgia tend to occur not only in conjunction with other diseases but also in higher rates in people who have experienced abuse, major accidents, or other traumatic experiences.

One group that I’ve seen tend to have all of these issues is adult survivors of child abuse. It’s been proven that child abuse rates tend to drop as income in the family rises. Abuse rates are highest when living with a mother who is either single or living with a man other than the father (in Britain at least, but I’d argue in the US as well). As we see in the links above, there is a strong correlation between childhood abuse and fibromyalgia rates (as an example).

If we, then, compare the ideas of those in low income, single parent/breadwinner situations being high homes for abuse and the rate of fibromyalgia in abused children, we could decide that lower income people tend to develop chronic illnesses more often (and that’s not just my idea or just fibro).

As someone dealing with PTSD from my childhood, which no doubt is also the cause of my depression and anxiety (and the eating issues I’ve had in the past), I’ll gladly share about my childhood.

My mother starting really dating when I was 13. She dated a few guys, only three that really spent much time with us. One is her current husband, another is the man who assaulted me, and the third was a jerk I think she saw to get back at the second honestly.

I came home several times from school to eviction notices on our door. We ate crap every single day because people were too lazy to cook. If we did eat at home, it most often happened because someone was coming over and we wanted to look good for them – or because sis & I decided we didn’t want to eat the crap and would make food.

There were times we didn’t have enough to eat. We used powdered milk. I ate sandwiches that were nothing more than ketchup and mustard because we didn’t have enough money to have much meat let alone other sandwich fixins.

A kid dealing with malnutrition, living in poverty with an unstable home life (as I’ve discussed my mother & grandmother’s epic fights before, I’ll refrain for now) and witnessing abuse/being abused is ripe for chronic illnesses.

That doesn’t mean that if you’ve lived a healthy and happy life that you won’t get sick.

Here’s my point from all this.

I’ve lived in poverty and dealt with abuse, which leaves me with my mental illnesses – mental illnesses that make it near impossible to always look on the bright side. My PTSD keeps me on guard, always worried about my safety or the safety of those around me. I’m hypervigilant, which means I see things in a room or situation that people who have lived without abuse don’t necessarily see. This is all stuff that served to protect me in the worst situations. The problem with PTSD is that your brain doesn’t shut those defenses down once you’re out and safe. I don’t need the force once the empire has been defeated.

My mental illnesses make it hard to use hope. Neither that nor the fact that I have them are shameful. Those I see trying to push hope or always being positive haven’t been through some of the hard things that my friends and I have been through. There are no hard feelings there, unless you’re someone constantly pushing hope.

It’s ableist against those of us with certain mental illnesses. It’s classist against those of us who grew up in hard situations like poverty. And it’s inconsiderate of others to demand this one size fits all way of dealing with illness.

Every person is different. It’s true with meds and it’s true with how we process our illnesses and feelings. I won’t judge you for the way you deal with things if you stop judging others like myself who can’t process that way, if you stop requiring everyone follow your ideas.

 

Happy toxic bitches day!

Posted on by Grayson
Seriously though, happy mother’s day to you awesome ladies out there.
For you not so awesome ladies?

If my recent post on the crud with my mother resonated with you, today may be a pretty rough day for you. I will freely admit that it is for me, mostly because of the expectations that you be with your parents on these made-up holidays to celebrate their sacrifices.

Not all parents are worthy of such admiration.

Parents also need to understand that every little sacrifice they make isn’t on the kid. That’s an adult choice and shouldn’t be held over your kid’s head.

To clarify, we kids didn’t ask to be born right? Parents knowingly engaged in something they knew could bring about kids, trying or not. They knew what they could be getting themselves into.

A good parent is selfless and doesn’t need these cheesy ass candy company holidays.

On that note, check out the links below. Some of them are parent specific, but a lost of them focus on self-care/love after rough patches or dealing with toxic people.

We can start with those darn parental units.

I shared this post about rough mother’s day issues on my facebook page the other day. It outlines a few ways mothers specifically can be abusive. I have to say that my mother falls into each of these categories, which is kind of frightening.

Sound familiar? Here’s another story on growing up in a similar situation and another on how the cycle of abuse works for abusers.

Being someone who is empathic or can easily cultivate compassion for others is really hard when you’re in an abuse situation as this article discusses. This woman discusses how her mother’s death and the resulting PTSD led her to develop more compassion.

Perhaps your abusive situation, past or present, surrounds more of an intimate relationship like this. It can be so hard to get out, and it doesn’t help when people judge or make decisions to ‘help’ that actually can put you in more danger.

For some people, friends are the problem. Perhaps you have friends that don’t respect your time or dominate conversations always. One way among others to work on this is to express yourself, but that sadly doesn’t always work.

Perhaps the first step to healing from this type of toxicity is to learn that you are worthy of saying no. You not only have it in your power, but you have a right to stand up for yourself. You are worthy of love, and if you’re not getting it, get out!

In the healing process, I give myself pep talks. It’s perfectly normal and we all do it from time to time. For me, it’s just a little more constant right now. I have to reassure myself that I’m on the right path in many things, that I’m worth the good choices I’m making, and that it doesn’t matter if I’m quirky.

My quirkiness is what kept me alive. My quirkiness is what makes me fun to be around. And I’m not ever going to cut it out.

It took a lot for me to get so comfortable talking about what I’ve been through. I’m still really realizing some of it.

When I started therapy again a few months ago, I set a goal with my therapist that I really want to learn who *I* am. That requires really dealing with the experiences I’ve had and putting myself back together… even though one could argue that I’ve never fully been ‘together’ to begin with. I have to take the power back and control my own life. I also have to be patient when that doesn’t move as quickly as I would’ve wanted.

Because of the fears that were instilled in me as a child, I have pretty good anxiety. It can be really hard to deal with, although medication is helping. I still get overwhelmed in crowds, but I’ve also learned to embrace and lean into that uncomfortable situation. I’ve learned that it’s okay to not be okay, and I’m okay with that.

I believe that self-care and self-love can change the world. I believe that it has changed my life for the better. If I bug you personally about self-care and love, it’s because I care about you and want you to be well and happy and all that good stuff.

It also allows me to be a bitch when I need to be, and I’m kinda loving it.

Perhaps the biggest thing for me was starting to date myself. I mean, how could you love yourself without a courtship phase?

You really can’t.

Do I love myself fully? Not yet, but I’m getting there. I’ll continue to keep dating myself until I find that place. I hope that you do too.

Don’t know where to start on self-love? Check out this link. Learn about the power of self-worth. Read those quotes on strength.

Take care of yourself today. Please. Treat yourself the way you’d treat your closest friend – with compassion, tenderness, understanding, and love.

Meditation Monday: Reflections on the best year of my life [super long post]

Posted on by Grayson
A year ago today I said goodbye to my mother.

Don’t get that wrong – she’s very much alive.

When I said goodbye to her, it was on my terms. She uninvited herself to my wedding towards the end of our conversation: “I’m going to do us both a favor. I hope your day in August is everything you want it to be.”

She tried to tell everyone I didn’t invite her because I’m a liberal snob (I wish I was kidding) but those words stick in my head to remind me that it wasn’t my choice.

My mother is someone that needed (needs?) a lot of therapy for the things she went through growing up and she never got it. She thinks that is a sign of weakness anyways. She had concerns for how much to share because, after all, the environment she grew up in was all about looking perfect on the outside and not exposing any dirty little secrets to anyone, something that tends to follow certain religious sects.

This is also an environment she created for us.

She grew up in a world where discipline was doled out by the handful, with physical violence and screaming matches the norm. She had to help raise her siblings when she should’ve been being a child. She dealt with abuse not only from her mother but from others outside the family as well.

It’s a sad story for sure. However, none of what she went through excuses how she perpetuated that cycle of ‘discipline’ and abuse towards her daughters.

You all know how I feel about secrets, and this family situation is the biggest reason why. If someone – anyone – had shared a secret along the way, perhaps my mother could’ve gotten help she needed – and her mother before her. Alas, mother refuses to even get help with her physical health issues that could be life-threatening, so mental health issues are far behind on the priority list.

It’s not worth the interventions I’ve staged, the false promises, or the fights. And that’s really sad.

I wish they weren’t. I wish things were different. I wish I didn’t feel so much like an orphan who had to raise herself and help raise her sister… and to some extent, her mother really.

With my sister moved away and me out of contact with my mother, I feel so much like an empty nester who gets to accomplish things she always looked forward to now.

It’s such an odd feeling at 27.

I very much wish that we had been allowed to have a more normal childhood. I wish having normal relationships with other children happened instead of the abuse at the hands of other children that we went through – and instead of the emotional incest and oversharing about sexuality we endured from the adults in our home… and the physical abuse. (EDIT: want to learn more about this type of parenting? Click here – Kels & I could practically have been these kids.)

I wish that I hadn’t been told the absolute worst would happen if I did xyz… I never was abducted for playing outside. I never was harmed by a stranger offering to help. Because of the apocalyptic views, I grew to have horrible anxiety attacks to the point where I couldn’t sleep at night because that’s obviously when crime happened. If I slept, someone might have snuck into the house and hurt my family.

That continues off and on still.

It probably will for the rest of my life.

And I fucking hate it.

People say what doesn’t kill you makes you stronger. I have enough strength already – I did growing up. I don’t need my illness crud or current family crud to add to that, thanks much.

That said…

From the moment I stopped having a relationship with my mother, I gained strength. Emotionally, I began to process and accept what I have been through – something that I will have to work on until the day I leave this earth. I began to mentally deal with the abuse I’ve been through, which is a similar process. Recognizing what is and isn’t abuse is hard. So many people write things off as dysfunction because we refuse to believe or deal with what’s in front of us.

I also began to physically decompress from all the stress of my whole life. My body isn’t perfect. I’m still sick. I still have to take and switch meds to get better and better (eventually). However, I’m feeling the best that I have since I was just starting college. I’m able to be physically active and not have to pay for it afterwards.

Heck, if my labs weren’t awful, I would think remission was close at hand.

The amount of stress a relationship with my mother causes physically alone isn’t cost effective. If we add in those emotional bits, it’s like trying to be bffs with Voldemort.

In the last year, I have taken my life back. I’ve done things that I’ve always wanted to do, from traveling alone to meeting my dad and starting to become a part of that family to getting married to my best friend to getting an amazing job and moving to visiting my sister on the west coast and trying to take her mind off things to truly learning who I am.

I’m a wife, piggie momma, awkward daughter, sister, good friend, quirky feminist, gamer, writer, musician, hard worker, fun person, a fixer… I could go on and on.

Perhaps the most important thing I’ve learned is who I am not and what I will not do.

I am not a victim. I refuse to play that part, despite all the shit I’ve gone through, because I see where that leads me in my mother and grandmother. I am not an abuser. I am not a scared little girl who will keep quiet because of threats. I am not someone who can be lied to and conned into believing everyone else is awful or that everyone else is to blame for our problems. I am not gullible nor am I a liar. I am not someone who will choose a religion when it’s convenient and turn my back on it in better times. I am not perfect and I will not pretend that I am. I will not even set perfection as a goal anymore because it isn’t realistic. I will not threaten my loved ones with my suicide when things are tough. I will not lean on my future children to be my best friends instead of raising them. I will not neglect my siblings or niblings, no matter what comes. I am not someone who feels entitled to everything. I am not someone who would allow children in my care to be abused by others and do nothing about it. I am not someone who will badmouth everyone behind their backs, only to act like they’re amazing to their faces. I will not neglect or beat animals. I will not bow down to a man I act like I need to run my life. I will not spew bigotry and argue why others should believe as I do.

Who I am, quite simply, is someone who chooses to live in the present, who wants to help others and to do the most right things, and who loves with her full heart.

Most of all, through all of this rebuilding, I have discovered that I am worth it. I am worth the efforts I take, the money I spend on such things, and the time I use on myself.

I guess the thing that bothers me the most is that mother and grandmother refuse to even acknowledge that there could possibly maybe be a hint of a smidgen of truth in what I remember. But like, they also don’t remember a whole lot, so… whatever. That’s irrelevant. If you’ve hurt someone – even if you think you didn’t – you apologize and learn about it so you don’t do it again.

I am sure that, as usual, my mother will throw a fit about this post.

Despite the fact that I’ve made it clear that I don’t want her in my life, she continues to ‘check up’ on me online. It bothers me that she gives no fucks about my wishes, but it doesn’t surprise me either given the last 27 years of crap.

Nothing does at this point.

While it pisses me off that she won’t let go, I refuse to stop blogging or talking about what I’ve been through – especially after all the sweet things that I’ve been told lately by readers on social media about how helpful I have been… and especially with big things in the works for me. I refuse to tear down this mini-empire of helpfulness that took me so long to build and to get recognized.

I’m meant for too many amazing things to let someone like this stop me. That’s not being cocky or self-centered either – it’s called confidence.

I will continue to be me and to live the life I was meant to live – one where I love myself and help others to learn to do the same, despite these dang illnesses or issues stemming from abuse that we deal with every day long after perps are out of the picture.

I won’t hide myself to make the lives of others more comfortable, not ever again.

Someone asked me how I’ve been able to cut contact with my mother, which is a great question. Cutting contact when I did, right before getting married, was difficult with the expectations from society on mothers’ and fathers’ roles in weddings and such. So much to say there for another day.

It’s very simple really. Any time I thought maybe I was on the wrong path, I pictured a vivid scene in my mind – usually having to do with my sister.

It’s mother picking on my sister, telling her to grow a sense of humor because mother making fun of her wasn’t something sis thought was funny.

It’s when our uncle would take my sister and me to the other side of the house and cover our ears, but we could still hear mother and grandmother screaming threats and horrible things at each other – and sometimes physically assaulting each other as well.

It’s my mother continuing to sleep with someone who sexually assaulted me, long after I told her about it, and making excuses for his actions. It’s forcing me to be around him after she promised I’d never have to see him again. It’s not believing what I’d said until Kelsey saw him try to drunkenly kiss me. It’s forcing us to lie, to say we were his friend’s kids when we stayed at his house with his WIFE there.

It’s my mother telling me she’d let me marry my high school boyfriend at FIFTEEN when he turned 18, and to start asking the extended family for wedding tips, only to laugh at me afterwards.

It’s her sharing very personal things with the extended family, like when I lost my virginity or started my period.

Most often, though, it’s when my sister would be beaten. I tend to think of the times she was beaten with the buckle end of a belt while I hid and cried. You could hear the blood-curdling screams through the house. It’s a scene I can’t describe – one that always makes me cry no matter where I am or what I’m doing.

I never wear belts, and this is why. I can barely look at one without thinking of this – something I know is from my PTSD.

No child, no matter what they have done, deserves to go through what my sister has been through at the hands of my mother alone. Add into that what other children did to her and I’m very lucky that she’s still alive – and still my best friend.
I’m still not sure how the cops weren’t ever called to our house. If more people called when they heard things like this, so much abuse could be prevented. I find myself angry with people who easily could’ve gotten us help. I know it’s misdirected, but still. As someone who is hypervigilant due to the abuse, it’s hard for me to not get how others didn’t see these things. It was so obvious.

 

It’s been the most validating thing to have people I knew in middle and high school contact me throughout this to let me know that they always sensed something off, but didn’t know what to do or how bad it was. To know that sane, normal people see this too as abuse is amazing.

And then there is my therapy and how much that is helping. I’m getting new ideas, new ways to cope with all this crap.

One of the ways I’m dealing with these experiences is to tell my story here, but also to tell my story on my body.

The mother’s day after cutting contact with my mother, I got my first tattoo – the stars from the pages of the Harry Potter books. They mean so much to me. I love Harry Potter for many reasons – the triumph against evil, abuse, stalking, etc. The stars on my foot remind me that I write my own pages now and that I’ve turned the page – and will always keep moving forward. They’re also a reminder to not put up with Dursley-like abuse any longer.

 

I just recently got two more tattoos.

Heart from the Heart & Brain comics is SO me, from the impulsive and silly attitude right down to loving Batman. He now adorns my right shoulder. I’m also treating this as a tattoo for my niblings between Sam’s congenital heart condition and Marissa’s love of superheroes.

I also have this on my left wrist. It’s is a little tricky to explain.

I’m not religious, but I consider myself spiritual.

In any case, this tattoo has nothing to do with that.

I see so many people with illnesses getting tattoos that include the word ‘hope.’ I know it sounds weird, but I hate that word. Hope is so inactive. It leaves things up to the universe or deities or others. When we hope for a cure, we wish, but don’t always act.

Believe, instead, feels active. If I believe in something, I will throw my support behind it. I will do what I can to help that task get accomplished.

I choose believe over hope also because hope is so up in the air. There is no timeline, no plan, no certainty that the task will ever be accomplished. Believe comes with certainty – something that I have regarding cures to illnesses.

Simply put, to find cures and better treatments or raise awareness, we must act and engage others. We cannot sit idly by while researchers and doctors don’t hear us or act on our words. We cannot hope it will be better without taking actions to make it so.

This serves a dual purpose too. Blue is not only the color of the arthritis ribbon, but also the one for child abuse. My foot and wrist will always remind me of where I came from and where I’m going. It reminds me that I’m a survivor, not only of my physical illnesses but also my mental ones stemming from the abuse.

It tells me to believe the very real things I remember, no matter how hard they are to believe.

Combined, they all remind me to be myself, to be real, to believe that I’m worth those actions… and to always be Batman. Duh.

This is probably like 5 blog posts rolled into one. Brevity isn’t always my strong suit.

Anyway.

Today is my independence day.

I’m going to enjoy it.

All the things I’ve done over the past year have been amazing, and it’s wonderful to know what life is like when you’re not paralyzed by fear… or as much fear anyway. It took me hours to build up the courage to call someone last night. But when that someone is your dad and you’re practically in the courtship phase of your relationship, it feels hella awkward sometimes.

That’s especially true when you still don’t get boundaries, normal relationships, and all those things you should learn through socialization or family.

In the end, all that matters is that my family and I are happy and healthy. We’re all working through some fucked up shit honestly. Mother can sit there and try to lie to everyone, as usual, to get them on her side and to make her the victim. Grandmother can do it too. That’s fine. For me, there aren’t sides – there’s the truth and the lies, and I know where my family of choice and I stand in that.

Therapeutic Thursday: physical edition

Posted on by Grayson

I haven’t done my Cimzia shot since… um… like the beginning of March? Maybe earlier?

Yeah…

Part of it is that I had bronchitis and had to skip a shot for that, and then I was out of the state for Sam’s surgery and my shot was not even close to the top of my priority list.

The other side is that, of course, it’s not working well anyway.

It’s hard to admit, but there it is. I end up with side effects for 3-7 days, have an okay week, and then just have to inject again. It’s counterproductive to have a shot that causes more problems than it solves – and this hasn’t done well at all for reducing my inflammation.

I had labs when I got back from Cali that showed an increase in my CRP and my sed rate – even from when I had bronchitis. Clearly, even though I feel well right now, I need to have a medication.

One of the reasons I switched to this rheumy in the first place was because my old rheumy’s office would not consider the SJIA/Still’s specific medications like Actemra or Kineret for me. It was frustrating to know that there were medications out there that would likely help me more and they instead put me on a third TNF drug, which is not very common. They generally move on to another class once two of a certain class of drug has failed to work for you.

The rheumy asked, via MyChart, if Kineret would be something I’d be willing to do. I sent back a short list of meds, and she sent back more info on Kineret. It sounds like that will likely be my next step.

The thought of going from bi-weekly shots that I dreaded to daily shots doesn’t quite have me enthused… but in comparing the drugs I suggested, this one does look as though it will be the best for me for what I need right now.

So today, I get to meet with my rheumy to discuss… and then have a meeting with my therapist right after to prevent the mental breakdown that almost always seems to accompany a change in medications.

It’s a good change, but it’s another point where it feels like I’m a failure. I know logically that the medication has failed me, but lingo always points to the patient failing the drug.

Cimzia was never going to get me to remission. It helped mildly for a short time, but wasn’t in it for the long haul, and that’s okay. Kineret could be, for me, a shot at remission. I’m willing to deal with the risks, to put up with mild injection site reactions and daily shots, for the chance at a more normal life.

 

Mental Health Monday: rant warning

Posted on by Grayson

Warning: rant time.

I’m writing this last Thursday, as Kelsey is getting ready to meet with Sam’s surgeons and I’m prepping for therapy.

I watched a video of the surgery Sammy will have on YouTube. Don’t do it. Ever.

I lost it at a point during the video while alone in my office. I can’t handle this. Not being there is killing me, and the longer I’m not there the worse it gets.

Kelsey needs me today. She needs me and I’m not there. I can hold things together mentally for a while, mostly when I talk to her, because I know she needs me to be the brain right now, to help think about and deal with things she might not have thought of yet – like the GoFundMe or facebook pages I set up before she was even awake the other day.

I’ve had a glass of wine every night for the last few nights. It’s the only way I’m getting any sleep, unless I want to use a muscle relaxer and then I can’t focus the next day if I have to wake up on a schedule.

When Kelsey had her seizure in 2009, I got this scared. There could’ve been a million things that caused that seizure and for a while we didn’t know if it was really bad. Thankfully, it seems like it was a random occurrence, but still. I held it together for Kelsey and lost it out of her sight (ie the bathroom because I didn’t want to leave her side).

I even tried to get her medical care for some serious issues she was going through and couldn’t because I wasn’t the parent… So unless I could house and raise my sister – and sued my mother for custody – I couldn’t get sis the right medical care. It’s bullshit.

I’ve always felt more like a parent than a sister, and I guess that’s what parents are supposed to do right? Be strong for those we love and then silently break down in the bathroom or the shower when no one’s watching?

Hell, I do that with Theron too. Maybe it’s just a me thing.

I’m upset that my mother is trying to make the situation about herself instead of about helping, about providing love and advice and a shoulder for Kelsey to lean on. I guess that’s what she’s always done though, so I really shouldn’t be surprised. It hurts that even in the hardest of times, she finds a way to do this.

Parents are supposed to help and do what’s best. That isn’t this. And I, as an older sibling, feel bad for not being the best parent right now.

Emotional incest for the win!

Side note to explore another day – I hate that I’m practically my mom’s ex. Again, emotional incest sucks.

UGH.

I’m ready for therapy, for my glass of wine, and for sleep. It’s not even 1 pm yet.

Self-Care Sunday: dealing with the past

Posted on by Grayson

Real talk: you do seriously need to watch this. If you haven’t yet:

Kimmy: I can’t even do a dream date right!
Titus: Probably because you’re bottling up the past. The past is not a root beer Kimmy Schmidt!

Today, we’re going to talk about what to do for yourself when you’re dealing with rough things from the past.

Do you feel like your should-be self is interfering with your right-now life? And who you want to be? Check out this piece. And if you feel like you were over some past things but recently discovered you weren’t, please please please read this post from Blessing Manifesting. Spot on.

It’s important in so many ways to both own and tell your story. Maybe you’re on the path to finding out your story and learning why it’s so important to share. Remember that there are always ways to get through the hard times.

Kimmy: Do you think going through something like that – a war or whatever – makes you a better person? Or, deep down, does it just make you bitter and angry?

Have you been abused by family or others too? There are lots of guides out there on how to heal, but I found this one helpful. One really tough part about all of this is figuring out that you contain worth and you matter. You’re not just taking up space. People like me often find comfort in becoming a bit of a control freak. In reality, we need to let go and work on how to deal with less emotional pain. Sometimes that means working through the abuse. Sometimes that means ignoring it. For others, that means focusing on the good that’s come out of the situation.

The important thing to remember is that standing up for yourself gives you the power in the relationship and negates much of the power they hold over you. Learn to say no and set up real and proper boundaries. It isn’t easy and you will have set backs, but believing in yourself and your experiences will help get you to where you need to be.

If you’re dealing with PTSD or other issues that cause flashbacks, learn about how and why they happen.

If you can’t remove yourself from a situation by cutting contact like I did, try these steps when you’re in a high pressure situation. It’s easier said than done to keep your cool, but it can help to step back from the emotions of the situation.

Make sure that you address all the dimensions of self care that there are. Help the others around you by talking about empathy and asking for help when you need it. If you need it, check out resources on DBT and other ways to get through crisis moments. Processing traumatic events is really hard. Maybe practice some self care? If you’re really stuck on that though, try helping someone else. It always makes me feel better.

It won’t be easy but you can make it – because you’re:

Therapeutic Thursday: the importance of sharing your truth

Posted on by Grayson

It can be really hard to stick to your guns when others act like you’re in the wrong on something. It’s even harder when that something has to do with your personal well being.

If you’re anything like me, you see standing up for yourself in some aspects as not worth the confrontation or conflict that may come along. You’ve been conditioned, whether through people or other influences in your life, to see yourself as unworthy, little, and puny. Sure, everyone has days like that. For some of us, that’s what makes up the bulk of our thoughts.

The biggest problem with growing up in a home or being in any position where you’re conditioned to think like this is that it affects every aspect of your life. It will make you think your bronchitis is just a cold – that you’re upplaying the affects of any illness or just unworthy of getting treatment – and that you don’t need to seek medical help. You don’t go for promotions or better jobs because you ‘just know’ you won’t get them. It affects your confidence to the point that if, by some miracle you did apply for a job, you wouldn’t get past the interview stage because you become a nervous and anxious wreck. Your personal relationships suck because you either have no friends or you have ‘friends’ who walk all over you and make you feel worse about yourself.

It’s almost as if every user can sense you’re a good usee.

On top of that, you get to deal with that little voice in the back of your head that reminds you how not good enough to accomplish things you are. Oftentimes, that voice is the voice of the bully or abuser or oppressor that you’ve dealt with.

A good way to combat these feelings is to be assertive and to speak your truth.

I know that speaking your truth sounds silly, but that’s exactly what it is – your truth. Just because your abuser didn’t see what she did as abuse doesn’t mean it isn’t. If you felt abused, that is your truth. No one has the right to tell a victim whether or not they were victimized.

These issues will just keep popping up until you get help and work on sharing what you’ve gone through. Not everyone is as into sharing as I am, but I believe that it really does help the healing process along for others to hear and know about why you’re triggered by the smell of beer or why people yelling at others bothers you.

Sharing can be a really hard step for a few reasons – the biggest perhaps is that sharing makes what you’ve gone through real. I began to talk with other abuse survivors and the things and stories we had in common were frightening honestly. It became more real to me.

Right now I am dealing with the realest feelings from the abuses I’ve suffered. I’m dealing with flashbacks that I have a really hard time getting out of. I’m dealing with pent up anger at remembering more and more things that happened as I was growing up. All this is happening because I’m sharing more in my relationships and in therapy. But it also means I’m working through these issues.

I am solid in the knowledge that I suffered through things a child shouldn’t even have to think about let alone endure or witness. I know for a fact that the adults in the home where I grew up have some serious personality and mental health issues that need to be addressed but likely never will. I am dealing with the fact that my family was not dysfunctional but abusive and that it stunted my emotional growth horribly.

I own everything that I am, including what has happened to me. In order to embrace myself – faults and all – I must embrace the scared little girl that still resides inside of me. I have to help her find her voice.

My mother can’t seem to keep herself out of my life. She continues to read what I’m doing here on this blog and trying to creep on me via multiple social media sites. My sister has been asked to rein me in to stop me from talking about what I’ve gone through.

I’m not a little girl anymore. I can’t be scared by comments that my sister will be taken away and my mother put in jail if I talk about the abuse or what happened in our home. I won’t be frightened into silence anymore.

And if you don’t like what I have to say, I have only one thing to say to you:

Your opinion doesn’t matter anyway.

You need to watch The Unbreakable Kimmy Scmidt

Posted on by Grayson
I’ve got a new obsession – The Unbreakable Kimmy Schmidt. The show follows Kimmy as she tries to start living a normal life after being trapped in a bunker for 15 years by a doomsday reverend. In the first episode, she and the three other ‘mole women’ appear on the Today show. As their shuttle leaves the set and is driving to the airport, she has them pull over and decides to stay in New York. Everyone back in Indiana, she’s afraid, will always see her as a victim. She wants to be someone other than that.

Throughout the show, Kimmy has a number of PTSD episodes. They, and her social awkwardness, interfere with work, her love life, and more. She takes a job as a nanny for a rich family and moves in with Titus, a fantastic singer whose life-long dream of hitting Broadway keeps getting smashed.

I actually started watching this show mid-PTSD attack. I couldn’t get a sexual assault experience out of my head. I knew that this show, while funny, also addressed PTSD issues. I thought it could snap me out of the flashbacks, and I was right.

This show is funny, but it also deals with some hard topics. She mentions a few times that there was ‘weird sex stuff’ when she was being held, but the show doesn’t focus on that. It doesn’t focus on her having to live with strangers or the logistics of girls mentally handling captivity. The whole show focuses on her life afterwards. She’s working to move on, fit in, and make something of herself, even though she’s still got so much growing up to do.

There is a scene in the first episode that resonated with me really well. She hasn’t told her roommate about her past (and really doesn’t tell anyone) because she wants to be normal. She goes through being robbed and then losing her job, and comes back to the apartment freaking out. She goes into a rant talking to herself about how she’ll never be normal.

It resonated with me so well because I have these often – not as often as I used to, but still at least once every day.

I also try to rap far more than this white girl maybe should.

But, I mean, clearly Kimmy and I both got skills so why hide them. Am I right?

We’re so similar though – it’s almost creepy.
I wasn’t kept in a bunker for 15 years, but I was homeschooled and cut off from others for about seven years – and not allowed to do much even after that. I wasn’t abused by Reverend Richard Wayne Gary Wayne, but I was abused by another little girl growing up in addition to my mother’s (now finally) ex-boyfriend (whom she continued to see after I told her about the abuse). I didn’t just magically have to start living on my own with no skills whatsoever – I did have some. I am, though, incredibly dorky just like Kimmy.
I don’t know that I’d have it any other way though.

I do still believe in good, in the fact that people are inherently good but we’re all just so preoccupied with ourselves and our take out, instant gratification culture to see it. I love bunnies and my piggies and every single animal – even snakes. Most of all, I believe Sandra don’t need a man. You can do this all by yourself girl!

And I know that we can get through anything if we just take it tiny steps at a time. You know why? Because we’re tough!

And if you still don’t feel like you can handle something, you can always try to fool yourself.

I just finished watching the first season, exclusively on Netflix, who was smart enough to order a second season before filming even started. My therapist said she started watching it as well and she definitely appreciated the parallels between her patients’ lives and what this girl goes through.

Have you watched it? I’d love to hear what you think about the show!

Wacky Wednesdays: fandoms & chronic illness

Posted on by Grayson
Fandoms can play a huge role in how we approach our lives. They can give us motivation or the will to push through the hard times, commiseration and consolation, or help us celebrate and laugh. They are also wonderful for figuring out how to express ourselves in unspoken or unrevealing ways to the right people.
Even if you don’t know what a fandom is, you’re likely a part of more than one yourself. Are you a Trekkie who named your son after your favorite captain? Would you enjoy a visit to the danger zone? Are you always ready to run in case you encounter a mysterious person with a blue phone box? Is part of you still waiting for your acceptance letter to Hogwarts? Would your dream job be working at the Ministry of Silly Walks?

No matter the fandoms you’re a part of, you no doubt agree that they can influence our lives from the type of clothing we wear to our kitchen gadgets and bumper stickers to how we act towards other beings.

When I’m not feeling well, I reach for shows and movies (and music, but that’s for a different day!) that I know will cheer me up or guide me through things. With Netflix, DVRs, Hulu, and other technology, we can so readily have these wonderful films and shows at our fingertips.

For much of my life, I’ve identified with Batman.

I believe that a lot of that stems from feelings of abandonment and neglect. I’m not an orphan, but growing up it sure was easy to feel that way. Batman uses his anger and his frustration for good instead of taking the easy way out and harming others for the hell of it. He struggled with his inner demons, his emotions, and his grief.

As I grew older and time passed, I became very interested in the Harry Potter series. I’m sure that it has to do with the same reasoning.

I was praised as a child for being smart, but then picked on for being naive. There were many similar experiences – and that’s just at home. When I went back to school, it got even worse. Harry’s story, not dissimilar to Batman’s, finds an abused child with some issues saving his friends and protecting others. Not only is he able to make friends, which was a comfort to me reading the fourth book the summer before returning to school, but he’s able to stand up to institutionalized norms that don’t make sense or refuse to deal with reality. Honestly that helps to fuel some of my patient advocacy work.

Harry’s family situation continues to comfort me. There are two terms that I’ve used in the past to describe my family issues – family of origin (FOO) and family of choice (FOC). Harry’s FOO would be the Durleys just as mine wasn’t the best. There was a long time where, like Harry, I did most of the things around the house from laundry to cooking to cleaning at a very young age. You get no say in your FOO, and that can be really hard. Your FOC on the other hand is all based on choice. It can definitely include people in your FOO – I like to imagine Harry reconnected with his cousin after the final battle in the book. My sister would be that person for me. My FOC includes so many amazing people (and many of YOU!). It wasn’t until really going through the HP films after they’d all come out that I really understood those terms.

HP got me through a lot of hard times. I knew that I could make it because he did. I won’t pretend like I can save the world as he does, but I know that I can make an impact. I also know that the impact I have will be greater with my loved ones around me to help. HP encourages me to keep going, to keep pushing, even if I don’t feel like it. To make that reminder even more permanent, I got a tattoo referencing the stars from the pages of the HP books. They help serve as a reminder of the tough things that HP and I both went through – that things really did happen. They also help me remember that I’m writing the pages of my book right now. In May of last year, I finished a hard chapter and turned the page.

I could write about Doctor Who, but I just don’t have the words. There is so much out there on DW and philosophy and I feel ill prepared to tackle that at the moment.

Being chronically ill can be so isolating. We often feel like we don’t participate well in ‘real’ life because we aren’t as healthy in body or mind which puts certain limitations on us. I don’t have much of a social life where I live because I’m often low on spoons and/or just ready to go home and not deal with other people at the end of my work day. Sometimes it’s because I get sick so easily that I worry about going places at the height of flu/cold/etc seasons.

One of the nice things about fandoms is that no one judges you for spending a whole weekend binge watching episodes of shows on Netflix while hanging out in your PJs, eating Ben & Jerry’s or other horribly unhealthy comfort food, and not getting much sleep.

No one judges you for devouring a book and ignoring ‘real’ life because that book was too good to put down. No one judges you for playing zombie video games from the minute you wake up to the minute you go to sleep.

Most importantly, there are no requirements to fandoms. You can like Orphan Black even if you’re not a clone. You can enjoy traveling the ‘verse with Mal and the Firefly gang without having an orange hat. You can even find joy in leaping with Spiderman from building to building or fighting baddies with Batman despite the fact that you can’t walk.

There *is* a problem with representation though. Disabled people in fandoms generally are the ones in a victim role or have magically overcome their disability in a way to be a hero.

It’s not representative of real life. You could argue that it doesn’t always need to be, especially as fandoms are often very out there, but some more accurate representation would be nice.

I asked my friend Felix Quinn to write a piece on fandoms as well:

Fandoms as a whole can be a therapeutic thing for people who feel isolated and trapped by their illnesses. For me, they have given me a platform to speak without being cut off due to someone believing I didn’t have it in me to connect dots, etc. My favorite fandoms to participate in are In The Flesh and Steven Universe. But to keep this short, I’ll stick to talking about ITF.

The “In The Flesh” fandom is extraordinarily open about exchanging ideas that would typically (in the mainstream fandoms) be shot down without a second glance. When a show focuses around characters that have to medicate daily in order to function within their realities, it’s going to draw in a certain group. And that group has be amazingly comforting, accepting that we all view this one small piece of media in a different way. And all these conglomerations are right. There is no wrong answer with them, and that’s why I’ve enjoyed participating so much. There is no pretentiousness, no “fandom famous” blogs. It is incredibly accessible to all who want to participate.

The ITF fandom has helped me see it is okay to be comfortable with who I am, and how I am. I think, especially with chronic illnesses that tend to get worse instead of better, there are parts of us that feed into the ableistic idea that, naturally, we are monsters. We are flawed. And for that, we should resign ourselves to a quiet life where our interactions with others are kept to a minimum. To view a piece of media that tells us otherwise about anyone who dares to venture from societies view of “acceptable”, brings people together who feel quite the same. I am very thankful for the small fandom and the beautifully diverse and sometimes complicated conversations that take place. I am thankful, even if I am quiet now and again.

Maddened Monday: Unikitty, Lego, and Anger

Posted on by Grayson

Have you seen The Lego Movie? Because you really really should for many reasons.

My favorite character in the whole movie is Unikitty. She’s a unicorn kitty.

She’s also like literally me as a Lego. If you have time for a video, check out one here with her best moments, some of which are in gif form below.

She’s generally very happy, but has a wee bit of an anger problem. That also, in the end, turns out to be a great thing because she’s able to save her friends thanks to going on a rampage.
Another nice thing is that I’ve also learned that some anger can be healthy and even protect us from events or people:

Put another way, anger is to be respected and heard. It shows us where our boundaries are, and when they have been crossed. It acts as a guide, letting us know when we’ve taken a wrong turn in life, or need to try a different path. Anger is a compass, pointing us in the next right direction.

All that said, I try to not be angry. It bothers me to have more negative emotions like that because they often take a toll on my physical well-being too. A large part of that is because I hold things back instead of expressing emotions because it isn’t always polite or proper – or because I’m worried what I will do with that anger if I try to express it. Physically, I generally end up hurting myself if I work out angry because I ignore my body’s warning signs and don’t stop when I should.
I think I’m also very fearful of turning into any of the adults I grew up with because they all were far too expressive of their anger, physically and verbally. I don’t want to turn into that, so I hold everything inside. Because I don’t express my feelings readily, I end up in denial about a lot of things. I’ve always felt that the denial balances out the potential to turn evil. I try to tell myself that anyway.
All of this is a huge part of why I meditate. I really honestly need to meditate more than I do right now, because I’m falling behind. Thich Nhat Hanh has a great quote about mindfulness and anger here:

Mindfulness does not fight anger or despair. Mindfulness is there in order to recognize. To be mindful of something is to recognize that something is there in the present moment. Mindfulness is the capacity of being aware of what is going on in the present moment. “Breathing in, I know that anger has manifested in me; breathing out, I smile towards my anger.” This is not an act of suppression or of fighting. It is an act of recognizing. Once we recognize our anger, we embrace it with a lot of awareness, a lot of tenderness.

He goes on to say that we should approach these negative emotions like an older sibling would an angry younger sibling. You let that little one experience those emotions without trying to downplay or stifle them, then you help him or her to rebuild.
All of this is honestly a huge part of my fight for self-care and self-love. If I loved enough and thought highly enough of myself to practice more compassion towards myself, I could be able to process my feelings more easily – especially the negative ones like anger.
I’m getting there, but hey I’m a work in progress.
So why am I talking about all this?
I had a moment last night where I learned and remembered more information on the things my mother has done to abuse others, from neglecting to get them care to flat out hurting them and not understanding when she’s not received as warmly afterwards.

It was really bad. I was shaking with anger, but then got creepy-calm angry. I’m not sure which was worse, but both bothered me immensely. I was too sleepy to think too irrationally thank goodness, because my awake self would’ve wanted to go to my mother and chew her out. There are things as a parent that you don’t share with your children or expose them to or withhold from them. What I learned last night violated all three of those things and more.

I had literally the same reaction as Unikitty does here. I’m obviously still upset about it this morning.
I refuse to break my no contact with my mother. I know it’ll do no good, and that it’ll just stir up more depression and anxiety on my part. My therapist and the amazing friends I have in my life all agree. I feel upset that there will never be justice though. My mother will never have to pay for the abuse she doled out, nor will her mother or grandfather. None of them will get a trial or face a night in jail. They’ll never face charges for the sexual abuse that they learned about and did nothing to help with, save in some cases removing the abuser (oh hey, fyi, carrying on an intimate relationship with the abuser after that nullifies the removal).
Meanwhile, my sister and I are left with the remnants of lives, trying to pick up the pieces and figure out how to be real people. It’s always been her and me against the world. I’m grateful that we have some amazing friends who are now a part of our real family now, giving us help, guidance, and validation when needed. I’m even more thankful that we have great partners in our lives to help both of us work through all of this.
There are people who obviously aren’t happy about this situation – about how open I’m being with the things I endured growing up. There are people who think these things are best reserved for closed door conversations if they’re talked about at all – you know, family secrets. I believe in being open with this situation just as I have with my disease, because I know that it will help someone. If I can make it so that someone doesn’t feel as alone and as tortured about their family life as I have, then it’ll be worth it.