Archive for the ‘advocate’ Category


There’s a meme going around with an ancient quote from a sixth century philosopher, Lao Tzu, so-called father of Taoism. It reads:

If you are depressed, you live in the past.
If you are anxious, you live in the future.
If you are at peace, you are living in the present.

I know this is meant to soothe or be, you know, wise. I know that some therapists use a similar approach with their patients.

The more I see this float around Facebook and other social media… the more I see this in my support groups… especially the ones where so many of us have anxiety and depression in addition to our physical disabilities… the more this quote makes me realize how much it’s adding to the stigma and misinformation about Depression and Anxiety Disorders.

It insinuates heavily that we can choose our state of peacefulness, anxiety, or depression. Granted this quote is from the sixth century when they didn’t have the knowledge we have now about neurological differences and disorders like Major Depressive Disorders, Anxiety Disorders, Bipolar Disorders, Schizophrenia, Traumatic Brain Injuries, Intellectual Disabilities, Emotional Disorders, Mental Health Disorders, Behavioral Disorders, and more neurodiversity. Even if Depression and Anxiety aren’t the primary diagnoses, they can still be a secondary diagnosis and still be significant. There’s a biological basis for these concerns.

In other words, you’re born with it. You don’t choose it.

Depression has nothing to do with living in the past. Anxiety has little to do with living in the future. And let me tell you, living in the present is not usually a picnic but is in fact very often what causes anxiety and depression if we’re talking about situational depression and anxiety.

If we’re talking about situational depression and anxiety, talk therapy and using tools learned in therapy and coping mechanisms learned by experience in life can help ease the symptoms. Talking down, getting sunlight, exercise, proper diet, and all of those mood boosting things that we endorse (I do, really I endorse them because they’re helpful) are wonderful for situational depression.

If we’re talking about Major Depressive Disorder and Generalized Anxiety, if we’re talking about other neurologically based depressive disorders and anxieties tied to them, there’s no control involved. There’s no talking it through. It’s not rational. Talk therapy may help, medical treatment may help more.

But it’s not a choice. And this meme… this meme of this quote is damaging to those of us who aren’t just going through Seasonal Affective Disorder or are sad because our boyfriend is cheating. We can’t just buck up and get over it because it’s not situational. It’s biological and we can’t turn it off. We have to let it cycle. A situation or mood may trigger it, but there’s usually a lead up with signs pointing to it. We can’t always see them or recognize them.

Please, if you see this meme with this quote, pretty lettering and all, don’t share it.

Read Full Post »


I’m having some Cognitive Dissonance. It’s making my head all ‘asplody.

Cognitive Dissonance:
the state of having inconsistent thoughts, beliefs, or attitudes, especially as relating to behavioral decisions and attitude change.

Like many people, I sometimes have trouble reconciling how some people I know can say and do the things they do, and still be the people I’ve known and loved for so long. Others are, well, just as I expect them to be. It’s easy to figure out what to ignore and what to address. I can figure things out and ignore others because I’m a grown ass adult.

Then there are the people who are supposed to be helping me, like, well, doctors. People I pay to pay attention to me even if I’m trying to find myself or vent or get advice or just work out whether I need a mental health med tweak. Like my shrink. You’d think after 10 years she would know something about me by now. In our last appointment it was like she completely blindsided me on her opinion of me, or she grabbed the wrong file and was describing someone else. I actually called her out on it, but she shushed me. I’m a grown ass adult and she shushed me. I pay her, and she shushed me.

I was explaining some parent-teenager issues I was having, and advice on how to handle a situation. I needed some reassurance, but also some actual advice on what to do. Usually she gives an honest critique and a solution, and then tells me that I mainly have things under control and I’m a good parent and not to doubt myself so much. She’s even critiqued that I need to relax the discipline because I’m too strict, I hover too much, while still doing a good job teaching independence. Yeah, conflict? A little dissonance?

Instead:

“You know, there is this pattern with you. All the time you do this. You’re so interested in being your child’s buddy and needing to be the therapist of all of them and you’re so lacking in discipline. You’re not strict at all. You need to learn to be more disciplinarian and stop being the friend.”

I told her:

“You’re kidding, right? You told me the opposite in the last several years of visits and if you talked to my kids right now they’d all tell you I’m very strict. They’ll all tell you I’m not the friend-mom, I’m the Mom-mom.”

“No, no, you’re wrong. I see it in the way you interact all the time. Whenever you bring them in, every time. You’ll see when you bring them in next time, I’ll show you.”

Except I haven’t brought my children with me for at least 6 years. We don’t do family appointments. We have no appointments planned for any.

I think it’s time for a referral to a new shrink. One who doesn’t mix up files and patients, one who pays attention. She used to be fantastic, I’m telling you, but over the past three years she’s become more scattered and said more and more ridiculously weird things. I can’t write them off any longer. I’ve stayed because I need her to help with prescriptions.

Read Full Post »


Using All The Spoons

Using All The Spoons

I think it was one of my doctors that said,

“There is nothing noble about having to endure severe pain when there are options that will help alleviate the pain. I don’t care if its severe physical pain, or if its severe emotional pain. We put ourselves through too much pain, because we think that it’s some sort of spiritual, strengthening experience and it proves something about us as an individual. I don’t believe that.  Asking for help and pain relief is not a sign of weakness but of pride. Knowing when to ask for help is a strength.”

That’s been rattling inside my head for months, and I believe it’s true.

I’ve seen people online in support groups and in real life say that they endure the pain of Fibromyalgia and Lupus and other chronic pain disorders without asking for any relief from doctors or any support from friends and family because it’s a test from God. If Jesus could die on the cross for our sins then the least they could do is endure their pain without complaint outside of the Fibro support group.

I want to scream at those people that the entire point of Jesus dying on the cross for us was to sacrifice himself for our sins so that there would never have to be another blood sacrifice again to God. No more pain from sin, because he was carrying it. So any pain we’re going through isn’t because of sin, or because God wants us to go through it as some sort of test. God created scientists and doctors for a reason. God created nutritionists and yes, even homeopaths for a reason. To help us improve our health and ease pain. If we try and it doesn’t work, we simply (ha) having found the right combination yet.

So many of us that have chronic pain like Fibromyalgia seem to think that showing signs of pain and asking for help or support is a sign of weakness, and if we show any kind of weakness then others will walk all over us and take advantage of us.

We think that obtaining pain relief and admitting that natural remedies we’re trying don’t work well enough or are no longer working and we need to try something else is a sign of weakness.

We don’t want people to think we’re faking.

We don’t want people thinking we’re exaggerating.

We don’t want people thinking we’re whining.

We don’t want anyone to think we’re trying to suck The System dry and take Your Tax Dollars In Benefits We Don’t Deserve.

We believe that you have a right to judge our pain relatively while at the same time, believing that you have no right to judge.

We believe that we should be able to endure any kind of pain in silence, that we shouldn’t burden other people with our pain.

We believe we’re burdens.

We hope our spouses and loved ones stay by us steadfastly  no matter what, and refuse to see us as burdens and make great effort to understand us even when we’re at our worst moods and least ability.

We believe that our children shouldn’t see our pain and disability and how we handle it…. just like how so many people believe children should never see their parents fight and make up… without realizing that children who witness and learn to deal with disabilities in their families grow up with compassion and an ability to understand disabilities.

We believe we’re burdens even to our doctors ( if we don’t already believe Big Pharmacy is out to get us, poison us, take all our money, and all doctors are in on it). We forget that doctors are our employees who work for us and with us, and we get a say in our treatment. We forget that we have a voice, but that we need to learn to use it.

Our burden shouldn’t ever be someone else’s burden. Yet… when our loved ones don’t ask us how we’re feeling or offer to help us, offer to try to relieve us some how, some way, so many of us are hurt and insulted and complain that our friends and family must not care. We spend so much of our lives hiding our feelings, emotions, pain, and disability that we forget we’re not really letting them in. They don’t really know us because they only know what we’ve shown them until now. If it appears as if we don’t need help or care or support, they’re not going to offer it. If we don’t tell them we need anything, they won’t offer it. If we don’t ask, no one will help.

And if we don’t inform spouses and children that they’re expected to help, they won’t.

Yet we take on their burdens as if they were our own without complaints even if we can’t afford it, and we’ve nearly run out of spoons. Why do we do that? Because we need to prove ourselves. We need to prove that we’re fine and can handle our own burdens, those burdens that no one else is supposed to notice, as well as be helpful and loving to everyone else.

We need to prove that we can overcome. We can bust through disability that’s in our way. We need to defeat disability and illness and disorders and differences. If we can’t we need to pretend and try to pass so as not to make others uncomfortable.

We need to always be Hope and Inspiration. We need to be wanted.

The stigma of pain and disability has been built into  our society for so long that people who endure challenges from disabilities and chronic severe pain perpetuate that stigma by behaving as if we’re ashamed of our pain. That’s what hiding our disabilities and pain really does. When we minimize our experiences and we even go so far as to say,

“Someone else has it worse than I do. I shouldn’t complain.”

We’re saying that we don’t matter enough to be taken care of and to be paid attention to and to be pampered. We don’t matter enough, period.

Do I always want to look for strength in my disabilities? No. Hell no. I have some terribly horrible days where I don’t have any strength of any kind at all mentally, emotionally, or physically. I’m not an inspiration or hope to anyone on those days. I’m not trying to be.

The strength lies in our ability to ask for help.

More of us need to learn to insist on help from our loved ones, and explain what we need when we ask for help and support.

It’s not enough to hope and beg and pray that our loved ones will simply know that we need them, and that they will know what exactly it is we need. The problem is they’re not mind readers. How can they possibly know what we need if we don’t tell them explicitly what we need. Our doctors don’t even know unless we tell them explicitly. And when we tell people we love, as well as our doctors, we need to use a strong voice. We need to use our no nonsense voice in order to get our message across. I’m known for bringing printouts with a list of things I want to talk about. I’m also known for bringing printout of research I’ve done, and I bring links to online research which I know my doctors probably should have done or have already done so that they know there’s a resource that they can go to. When loved ones don’t seem to understand what I’m going through I have learned to show them research. I’m still learning to show my pain rather than hide it. I’m learning that hiding my pain and enduring my pain is not Noble. It does not make me a stronger person. When I need help I am learning to ask for help.

But perhaps even more importantly, when I need help and someone offers their help I am learning to say yes and accept it. It’s hard to do that because of pride, but I have learned that more people than not do have a good heart and even if they don’t understand what I’m enduring if I let them see my pain even if they cannot empathize with me they still want to help. If they can see an actual physical need that’s obvious to them they’re more likely to help. Someone sees simply pain and they don’t know what to do it’s hard to endure it it’s hard to know how to help. People feel helpless when there’s not an obvious task to say here let me help you with this. It’s hard to say what can I do to help you when there’s no clear solution to expect the person they want to help.

Read Full Post »


For reals, yo. I need a new computer at home. Trying to blog stuff on my phone or Kindle is getting tedious. Voice to text is amazing but editing… sigh. Big long drawn out sigh, man. My home computer has no battery and the extension cord is unrecognized by the computer most days. It also still has that ridiculous series of cracks on the screen. I’m over it. And of course I can’t really blog from work.

I know, I know, American working mom problems, but the struggle is real. We pay bills on that thing and the kids do schoolwork on it. I try to work my slowly building home business from it too, but that’s suffering because, well, access.

I just giggled at myself because my inner child suggested starting a GoFundMe account for a new computer and then the inner pretending-to-be-and-adult part of me slapped that little girl down and put her in the corner. She’s not getting any warmed up crumb cake later for dessert.

Oh, speaking of crumb cake, people, Sally’s Baking Addiction Blog (click here, please click here, it will take you to the recipe index) just never disappoints me ever. I love her. I love her breakfast stuff. Even the cakes that you get to call breakfast. And nabbing that recipe, I just realized I forgot to put the cinnamon swirl in the middle, which was fine because it was still perfect. I even intentionally left off the drizzle because we needed something less sweet after all of the sugar we ingested over Christmas. It’s lactose free if you use Greek yogurt in place of sour cream, by the by. I used Chobani vanilla with excellent results.

Anyway, good grief, after taking the long way round as one does, here’s the recipe for the Old Fashioned Crumb Cake because as one knows, you can’t mention a recipe and then not share it. Because etiquette.

http://sallysbakingaddiction.com/2015/05/08/old-fashioned-sour-cream-crumb-cake/

And now I’m wondering how a complaint about my computer at home turned into a rave about a crumb cake recipe.

Read Full Post »


Have you heard of The Mighty? It’s difficult to avoid the site. People share so-called feel-good stories from The Mighty on any social media they can find. A dog rescues a firefighter from a frozen lake. A kitten does CPR on a grandmother that’s taking care of her daughter’s newborn son.

Even a stopped clock is right twice a day.

Typically the stories have a common template or two.

  • Someone is victimized and someone is rescued
  • Someone is disabled and needs to be saved from their disability
  • Someone is disabled and oh look! The school got together for a photo op to show off how enlightened they are for being kind to the disabled person at a football game!
  • Some is victimized as the disabled person’s parent, because life pulled a fast one and sucker punched them by thrusting a disabled child upon them but someone else comes along to brighten the parent’s day
  • Someone is living in poverty but someone takes a video of someone else giving a few people a free hot lunch at Panera Bread
  • Someone is living in poverty and is interviewed, having to prove they didn’t cause their own downfall so that others feel sorry for them and will want to donate money and clothes and even offer a job… and then the person that offers the job is the savior
  • Someone secretly videos homeless people to see how they’ll behave if they find money on the ground and see meters run out on cars at the same time

 

After a very little while you notice the pattern, and you realize that you can’t excuse the ableism and self-indulgence, the finger-wagging at those who did wrong and the praise of those who did right.

You notice that the victims are parents of individuals that are disabled usually use wheelchairs or are Autistic or have Downs Syndrome. One problem is that they’re not really the focus of the articles. They’re the prop, and they’re what the hero and heroine need to overcome or rescue. These stories perpetuate the ableism and stigma of disabilities.

Disabled individuals (or the disabilities they deal with) are perceived as challenges for others to overcome; as tragedies that occurred to the parents. That’s dangerous thinking that dehumanizes the individuals who really need the attention and help … or who don’t want any attention at all and want to live their lives without judgmental intervention… and most certainly without sharing their most intimate and personal issues and photos without permission. The voice is given to the parent, the caregiver, not the child, and so when there are biological parents who choose to abuse or end the lives of their disabled children, they feel justified and people will defend them because hey… look at just how much suffering the parent had to go through.

On the other hand, if disabled individuals are seen as something that needs to be rescued, these stories tend to infantilize disabled individuals. They can’t care for themselves or speak for themselves, much less advocate for themselves, much less be seen as human.

These stereotypes and ableism perpetuate the notion that disabilities are something to grieve over, and something we must prevent at all costs, cure at all costs, fix, and feel badly about. For the sake of the parents, and for the sake of the little babies.

Worst of all, it causes people to believe that disabilities decrease the value of a life without the intervention of the kindness of strangers.

Either way, the pattern is that disabilities have victimized parents and caregivers and the people who  have disabilities are often not really viewed as being people, but props in these stories.

This pattern has the Autism self-advocacy community and others in the Disability Community in a rightfully angry discussion about an article that has now been pulled by The Mighty. I know, I took the long way round again to get to the crux, sorry.

A supposedly autistic mother to an autistic child posted an article that included a “meltdown bingo” card that was intended to be humorous and supportive to other parents of autistic children. I was embarrassed and bordering on irate when I saw it pop up in my feed from following The Mighty on Facebook (The Mighty was a recommendation to follow a long time ago, I mindlessly clicked it). I clenched my jaw and kept from commenting on the article because I couldn’t keep my fingers from typing something less than polite, less than commiserative. I closed out of it and then I relaxed because thankfully I don’t have any friends on any media would share that tripe and I knew it wouldn’t show up in my feed again.

Except it did show up in my feed again… it started showing up in Facebook and on Twitter and on several of the blogs I follow. The subject of it did, anyway, because the original article was pulled and The Mighty is trying to apologize for it and “recognizes that it was ableist” when they never intend to post anything ableist. Except… well. There’s a firestorm bursting through all of my social media justifying that initial feeling and helping, allowing me to put to words what has felt wrong with The Mighty. That specific article from the autistic mother with the autistic child and the autism meltdown bingo card tipped the internet’s kitten right over.

I’m relieved that the article was pulled (don’t worry, I’m sure it was screen capped or cached somewhere for posterity), but only after there was a lot of backlash for it. This post here from Lemon Peel is one I love hard and has some great links.  CAN U NOT: A Twitter Ode From Me To The Mighty | Lemon Peel

We parents? We make mistakes. Sometimes we make them publicly. Sometimes we make spectacular mistakes, embarrassingly horrifically ghastly mistakes. The challenge we face is to apologize from the heart, to learn from them, to try to repair the damage we’ve done when possible, and not to repeat the mistakes. Sometimes we have to accept that reparation isn’t possible, but we still have to try. Then we have to move on and once we know better, we do better.

Read Full Post »


The Stalking Tiger, such a pretty, seductive, sneaky girl when she’s trying to convince you that her presence is really not a big deal.

I thought I had my eye on her well enough. I thought she was being soothed and kept in her cage.

It turns out her cage wasn’t locked securely. The door has been open and I didn’t even realize it.

It’s a dance we do. It’s a dance I’ve done my entire life. I’m used to hearing the purr grumbling in the throat of The Tiger. Even with treatment, I don’t know if I can say that I’d know what I’d do if I didn’t have the breath of the tiger behind me. When she’s laying at my feet or at the foot of my bed, I can fool myself into thinking that it’s manageable. I can fool myself into thinking that she’s not stalking me, but protecting me, and that she’s keeping her distance.

But I keep feeling her bump into me, and now her teeth have scraped my calves. She’s drawn blood, and there’s simply no denying that. The rivulets of anxiety drip upward and sideways, making their path to my brain. Odd… odd how I’m associating anxiety with blood. Or maybe not so odd considering the state of the world right now, and the current headlines over the past month. Maybe it’s not so odd with the anniversaries and end of the year anxieties in work and the usual holiday worries.

I’ve noticed the depression getting increasingly worse over the last couple of weeks, as the symptoms I feel become too much to ignore. I’ve been forcing myself to take some stock in my language, my outlook, and how I’m feeling in general. I’ve been feeling as if I’m floating and watching myself act and react, or not act and react enough.

I’ve been feeling as if I’m separated from the Me part of me. It’s somewhat surreal. It’s almost as if I’m a different me taking care of Me, but I’m not doing a really good job. It’s likely been affecting me and my performance in, well, life for longer than the past month and it’s only just now caught me bleeding.

I’m having trouble concentrating in conversations.

I’m having trouble socializing.

I’m dreading most events.

I cry at the news. I cry at blogs. I cry at happy stuff.

When I should cry, I can’t even shed a single tear.

Laughing feels forced.

I dread leaving the house every day. Of course this hampers errands and shopping for groceries.

I’m having trouble remembering details, even when I write them down.

I’m losing focus.

It’s harder for me to care about getting ready for work. I do it… but the drive isn’t there. Physical pain, of course, is a huge driving force regarding that.

My emotions are leaning towards sad, extremely sad, anxious, angry, frustrated, annoyed, flat.

Dread.

A perpetual state of anxiety.

I can fake happy. OK, I can try to fake happy and the truth is, I’m not really sure that in the stage of depression and anxiety I’m in if I’m really pulling it off.

I can almost fake being able to tolerate my physical pain levels. I can’t tell if I’m covering up any of the feelings that would make other people uncomfortable. I hope and pray people only approach me when the pain isn’t so high that I can concentrate on what they’re saying and it’s not making me feel like throwing up.

I don’t know if I’m making enough of any of it work to succeed at Life right now. I can’t tell.

I want to withdraw into myself but there’s too much going on, and that’s making things worse.

And oh, the CFS. I find that I don’t want to fight it. It gets me through excruciating physical pain and yes, it gets me through emotional pain and the non-ness that I feel. It’s not intentional going through CFS, or to be forced some days to give in to it. Accepting it is a different matter. The CFS can drain the Jessica part of me although it can give some of the Jessica part of me back when I can give in. Refusing to give in to the CFS makes the Depression worse, sapping even more of the Jessica part of me. The pain worsens the depression and the CFS; the pain steals more of the Jessica part of me and I’m just less.

I’m Non-Jessica.

It’s like… an in between of existence. There’s a less-ness in how I affect others lives, and a less-ness, a non-ness in what might happen if I just disappeared. But being Non-Jessica can be a skill, too, helping me to be successful in that one thing… hiding, making the Jessica part of me less noticeable, so that she won’t be missed and no one will be angry if she can’t participate.

Can Non-Jessica still be a good person? Is my Non-Jessica-ness even still a person at all? Because what I get is a feeling of non-presence mixed with indeterminate value joined together with the un-, in-, non-. I suppose I know I’m here, but I’m still feeling unseen. Or maybe needing to be unseen. Needing to hide in plain sight so that Non-Jessica can slip away unnoticed. All of that is non-ness. Non- whatever. Non. Non-ness.

I’m not necessarily losing my bits of me. Those bits, those chunks that the Stalking Tiger likes to bite away in nibbles, then chunks, the times when even Non-Jessica is nowhere to be seen and Eaten Whole Jessica has taken her place, because when the Tiger nibbles, when she thinks I won’t notice because she’s feeding off other pain, she’s really stowing some of it away in little Tupperware boxes with little lids to be dusted off when it’s safe to take them out again, without even a dash of cinnamon sugar.

I feel as if I need time and space, which is difficult at this time of year. Everyone and everything else needs me. The problem is that the Jessica part of me, floating above Non-Jessica and watching the movie, trying to direct Non-Jessica, is forced to take control for spans of time to be functional enough to get through each day.

I need a time out, and a better lock for that cage. And also, maybe a better shrink.

Read Full Post »


 

In my world, words matter, so take a gander.

Holiday:

Old English,  ‘holy day.’

The word originally referred only to special religious days, which is really kind of cool. Thanks to how language works, the word has evolved and is nuanced. That’s called etymology, and it’s really fascinating. So yes, it’s evolved to include non-secular celebrations such as these, and that’s all right:

  • Thanksgiving
  • Independence Day
  • Father’s Day and Mother’s Day
  • Martin Luther King, Jr. Day
  • Labor Day
  • Presidents Day, in observance of Presidents Washington, Lincoln, and some additional figures

 

Yes, there are non-religious people who co-opt the traditions of some religions in a secular way for their own families and enjoyment. There are people of other religions that perhaps pick up the traditions of another religion in a secular fashion simply because they enjoy it. Perhaps they adopt it into their own religious or spiritual traditions because they belong to blended families. I get it that this may upset you, and you may find this to be cultural misappropriation [Cultural appropriation, or cultural misappropriation is a sociological concept which views the adoption or use of elements of one culture by members of a different culture as a largely negative phenomenon].

And it is, you’re right. It’s cultural misappropriation if you choose to look at it that way.

The thing of it is, it’s not malicious intent. It’s not hurting you or others in any way. In fact, it’s binding us all together whether we share a common religion or not. It’s giving us all a tether to each other. 

I believe that when someone wishes me a Happy Holiday, the person is offering a blessing.  I’ll accept it because it’s a gift. It’s a promise that they wish me well and that in that moment I can trust them to be kind rather than malicious. The only “war” in these words is in how the recipient of the words chooses to respond.

Let’s make a promise:

 

No matter where we fall on the spiritual spectrum, please assume the best of each other rather than the worst. We’re wishing good blessings upon each other. We’re wishing each other to be happy and blessed. Whatever form that takes, whatever the words, the meaning is the same.  

 

P.S.

Fair warning: if I catch you reprimanding my children for being thoughtful, kind, and considerate because that’s the kind of children I have (most of the time, at least in public) no matter the particular, specific words they use, I’ll cutch-you. :-)

But yeah… here’s a nice quick screen capture for you to take a peek at and revel in. <3 Go ahead… ask Google. This is just a snippet.

 

Origin of "Holiday" is "holy day"

Origin of “Holiday” is “holy day”

Read Full Post »

Older Posts »

Follow

Get every new post delivered to your Inbox.

Join 829 other followers

%d bloggers like this: